Living Gluten-Free For Dummies [3 ed.] 111998355X, 9781119983552

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Living Gluten-Free 3rd Edition

by Danna Van Noy (formerly Korn) The Original Gluten-Free Guru

Living Gluten-Free For Dummies®, 3rd Edition Published by: John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030-5774, www.wiley.com Copyright © 2023 by John Wiley & Sons, Inc., Hoboken, New Jersey Published simultaneously in Canada No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning or otherwise, except as permitted under Sections 107 or 108 of the 1976 United States Copyright Act, without the prior written permission of the Publisher. Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, (201) 748-6011, fax (201) 748-6008, or online at http://www.wiley.com/go/permissions. Trademarks: Wiley, For Dummies, the Dummies Man logo, Dummies.com, Making Everything Easier, and related trade dress are trademarks or registered trademarks of John Wiley & Sons, Inc. and may not be used without written permission. All other trademarks are the property of their respective owners. John Wiley & Sons, Inc. is not associated with any product or vendor mentioned in this book.

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Recipes at a Glance Breakfast  Gluten-Free Granola . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 206  Eggs in a Breadbasket . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 209 Breakfast Quiche . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 210  Simple, Stylin’ Smoothie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 212  Coffee Cake . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 214  Crêpes ������������������������������������������������������������������������������������������������������������������������� 215  Versatile Blueberry Muffins . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217

Appetizers  Party Mix ��������������������������������������������������������������������������������������������������������������������� 222  Spicy Corn Fritters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 223

Spicy Buffalo Wings . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Artichoke and Spinach Dip . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Guacamole . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Mango Salsa . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Asian Pork Lettuce Wraps. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

224 226 227 228 233

Soups, Salads, and Sides New England Clam Chowder . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Black Bean Chili . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Asian Salad Dressing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Caesar Salad Dressing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Creamy Green Anchovy Salad Dressing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

238 239 242 243 244

 Quinoa Crunch. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 249  Rice Salad with Red Peppers, Garbanzo Beans, and Feta . . . . . . . . . . . . . . . . . 250  Sweet-Potato Potato Salad . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 251

Entrées Spicy Chinese Game Hens . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Your Basic Roasted Chicken . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lemon Caper Chicken . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Steak and Peanut Pepper Pasta . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Shredded Pork . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Tequila-Lime Shrimp and Scallops . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Szechwan Scallops with Orange Peel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Baked Lemon Mahi Mahi . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

255 256 258 261 264 266 267 268

 Vegan Lasagne . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 270  Fresh Harvest Penne. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 271  Cheese Enchiladas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272  Black Bean Veggie Burgers . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 273

International Cuisine Marinated Seafood (Ceviche) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Mexican Pizza . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Chile Rellenos Casserole . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Vietnamese Rice Wraps, or Summer Rolls (Goi Cuon). . . . . . . . . . . . . . . . . . . . . . . Pork Spring Rolls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Faux Pho — Thai-Namese Shrimp and Chicken Soup . . . . . . . . . . . . . . . . . . . . . . .  Eggplant Morocco . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Spicy Chicken Curry . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Cuban Mojito . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  “Greece-y” Eggs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

277 278 279 281 282 283 285 286 287 288

Pizza, Pasta, and Bread  Basic Pizza Crust . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293  Tomato Herb Pizza Sauce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 295  Alfredo Sauce . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pizza Pockets (Calzones) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sauceless Inside-Out Seafood Pizza . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Three-Bean Pasta . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sweet and Tangy Noodles with Peanuts (Pad Thai) . . . . . . . . . . . . . . . . . . . . . . . . .  Simple White Bread for Bread Machines . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .  Flour Tortillas . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

296 298 299 301 302 304 305

Desserts  Flourless Chocolate Cake . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 309  Oops-Proof Peanut Butter Fudge . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 310  Crustless Cherry Cheesecake . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 311  Chocolate Marshmallow Bars . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 313  Sweet Peanut Butter-and Chocolate-Covered Cereal . . . . . . . . . . . . . . . . . . . . . 314  Fruity Caramel Popcorn Balls . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 315  Microwave Chocolate Chip Peanut Brittle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 316  Incredibly Easy Peanut Butter Cookies . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 317  Zebra Meringues . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 318  Grilled Banana Split. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 321  Blueberry Parfait . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 322  Granola Bars . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 323

Table of Contents FOREWORD. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xv INTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 About This Book. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Foolish Assumptions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Icons Used in This Book. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Beyond This Book . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Where to Go from Here . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

2 3 4 4 5

PART 1: GOING GLUTEN-FREE: WHO, WHAT, WHY, AND HOW. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 CHAPTER 1:

Gluten-Free from A to Z: The Basics of Being Gluten-Free. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9 How the Gluten-Free Lifestyle Saved My Son . . . . . . . . . . . . . . . . . . . . . 10 Understanding What Gluten Is and Where It Is . . . . . . . . . . . . . . . . . . . 13 Thinking Wheat Is Good for You? Think Again . . . . . . . . . . . . . . . . . . . . 14 Discovering the Benefits of a Gluten-Free Lifestyle. . . . . . . . . . . . . . . . 15 Beyond the gut: Head-to-toe health benefits . . . . . . . . . . . . . . . . . . 16 Worsening psychiatric symptoms. . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Mastering the Meals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Planning and preparing . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Shopping shrewdly . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 18 Considering your kitchen. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 19 Finding your creativity in the kitchen. . . . . . . . . . . . . . . . . . . . . . . . . 19 Getting Excited about the Gluten-Free Lifestyle. . . . . . . . . . . . . . . . . . . 19 Adapting your perspective on food . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Loving food is okay . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 20 Getting out and about. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .21 Raising kids to love the lifestyle. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 Setting realistic expectations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 22 Arming yourself with good information. . . . . . . . . . . . . . . . . . . . . . . 22

CHAPTER 2:

Going Gluten-Free: Should You Be?. . . . . . . . . . . . . . . . . . . . 23 Inspecting the Gluten-Sensitivity Spectrum. . . . . . . . . . . . . . . . . . . . . . . 24 At one end: Allergies. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 25 Somewhere in the middle: Gluten sensitivity and intolerance. . . . 26 Crossing the line: Celiac disease. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 27 Exposing One of the Most Common Genetic Diseases of Mankind. . . . 28 Pinpointing Who Develops Celiac Disease and Why . . . . . . . . . . . . . . . 30 It’s in the genes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Triggering celiac disease: What turns it on . . . . . . . . . . . . . . . . . . . . 32 Table of Contents

v

CHAPTER 3:

What it does to the body . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . How your guts are supposed to work . . . . . . . . . . . . . . . . . . . . . . . . How your guts work with celiac disease . . . . . . . . . . . . . . . . . . . . . . Scratching the Surface of Dermatitis Herpetiformis . . . . . . . . . . . . . . . Identifying Associated Conditions That Benefit from a GF Diet. . . . . . Connecting Women’s Health and Gluten. . . . . . . . . . . . . . . . . . . . . . . . . Focusing on fertility. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Promoting a healthy pregnancy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Reducing the chance that your baby develops celiac disease . . . .

32 33 33 34 36 38 38 39 40

Sorting Out Symptoms and Considering Testing. . .

41

Identifying Symptoms That Gluten Doesn’t Sit Well with You. . . . . . . . 42 Going for the gut: Gastrointestinal symptoms . . . . . . . . . . . . . . . . . 43 Identifying nongastrointestinal symptoms . . . . . . . . . . . . . . . . . . . . 44 Spotting symptoms in kids. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 46 Discovering misdiagnoses and the missed diagnoses. . . . . . . . . . . 47 The Lowdown on Testing. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 50 Understanding why being tested is important. . . . . . . . . . . . . . . . . 51 Recognizing who should be tested. . . . . . . . . . . . . . . . . . . . . . . . . . . 52 Testing for NCGS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 Explaining the blood tests available today . . . . . . . . . . . . . . . . . . . . 53 Getting a biopsy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 56 Testing in kids . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 57 Undergoing other tests. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 58 Considering genetic tests. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 59 Interpreting your test results. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 60 You tested positive! Now what?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .62 You’re negative for celiac disease — now what?. . . . . . . . . . . . . . . . 62 Considering the Risks If You Don’t Give Up Gluten . . . . . . . . . . . . . . . . 64 Preventing and improving associated conditions. . . . . . . . . . . . . . . 65 Living with compromised health. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 67 Healing Begins on Day One. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 68 CHAPTER 4:

The Evolution of the Gluten-Free Revolution. . . . . . . . 69 Tracking the Evolution of the Revolution. . . . . . . . . . . . . . . . . . . . . . . . . The 1990s. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The 2000s. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The downside of awareness . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Today and beyond. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Discovering New Treatments and Therapies . . . . . . . . . . . . . . . . . . . . . Removing toxic gluten peptides and regulating their effects. . . . . Preventing gluten from getting where it shouldn’t. . . . . . . . . . . . . . Developing vaccines (creating gluten tolerance) . . . . . . . . . . . . . . . Restoring the imbalance of gut microbiota. . . . . . . . . . . . . . . . . . . . Preventing the Onset of Disease or Intolerance. . . . . . . . . . . . . . . . . . .

vi

Living Gluten-Free For Dummies

70 70 71 72 72 73 75 76 77 77 78

CHAPTER 5:

Connecting Gluten with Autism, Behavior, and Mood . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 81 Blaming the Bread: How Gluten Affects Behavior . . . . . . . . . . . . . . . . . Understanding why food affects mood. . . . . . . . . . . . . . . . . . . . . . . Making the gut-brain connection . . . . . . . . . . . . . . . . . . . . . . . . . . . . Considering the Possible Relationship between Autism and Gluten Sensitivity. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exploring dietary treatment for autism: gluten-free/ casein-free . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Explaining the Opioid Excess Theory of Autism . . . . . . . . . . . . . . . . Taking a urine test. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eyeing More Potential Benefits for Going GFCF . . . . . . . . . . . . . . . . . . . Rethinking “reading, writing, and Ritalin”. . . . . . . . . . . . . . . . . . . . . . Diminishing depression and other mood disorders . . . . . . . . . . . .

82 82 83 84 85 86 87 88 89 91

PART 2: EATING GLUTEN-FREE WHILE OPTIMIZING NUTRITION . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 93 CHAPTER 6:

Grasping the Ground Rules of the  Gluten-Free Diet . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 95 When in Doubt, Leave It Out. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 96 Defining Gluten So You Can Avoid It. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97 Recognizing Gluten-Free Foods at a Glance . . . . . . . . . . . . . . . . . . . . . . 98 Forbidden grains. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 98 Grains and starches you can safely eat . . . . . . . . . . . . . . . . . . . . . . 101 Other foods that are usually gluten-free. . . . . . . . . . . . . . . . . . . . . 102 Foods that usually contain gluten. . . . . . . . . . . . . . . . . . . . . . . . . . . 102 Exploring Alternative Grains and Superfoods. . . . . . . . . . . . . . . . . . . . 103 Amaranth. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 103 Arrowroot. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104 Buckwheat (soba) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 104 Mesquite (pinole). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105 Millet. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 105 Montina (Indian ricegrass). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106 Quinoa (hie) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 106 Sorghum (milo, jowar, jowari, cholam). . . . . . . . . . . . . . . . . . . . . . . 107 Teff (tef). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 107 Checking Up on Questionable Ingredients . . . . . . . . . . . . . . . . . . . . . . 108 Knowing which foods to research. . . . . . . . . . . . . . . . . . . . . . . . . . . 108 Putting an end to the controversy over certain foods. . . . . . . . . . 109 The Buzz on Booze: Choosing Alcoholic Beverages. . . . . . . . . . . . . . . 110 Booze you can use. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110 Step away from the bottle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 110

Table of Contents

vii

Making Sure Your Medications and Supplements Are Safe . . . . . . . . Using Nonfood Products: What You Need to Know. . . . . . . . . . . . . . . Makeup matters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Lotions and potions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dental products. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . CHAPTER 7:

CHAPTER 8:

viii

Making Sure It’s Gluten-Free: Digging a Little Deeper. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

111 112 113 113 113

115

Gluten-Free Ambiguously: Why It Isn’t So Straightforward. . . . . . . . . Loose labeling terminology . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . “Gluten-free” may not mean 100 percent . . . . . . . . . . . . . . . . . . . . Defining Safe Amounts of Gluten. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Being aware of contamination risks. . . . . . . . . . . . . . . . . . . . . . . . . Looking out for mysterious ingredient sources . . . . . . . . . . . . . . . Testing for Gluten in Foods . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Deciphering Label Lingo. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Reading Glutenese: Knowing what to look for . . . . . . . . . . . . . . . . Avoiding tempting marketing come-ons . . . . . . . . . . . . . . . . . . . . . Checking with Food Manufacturers . . . . . . . . . . . . . . . . . . . . . . . . . . . . Interpreting company responses . . . . . . . . . . . . . . . . . . . . . . . . . . . Getting the most out of your calls to manufacturers. . . . . . . . . . . Getting product listings from a company . . . . . . . . . . . . . . . . . . . . Searching for Information: The Good, the Bad, and the Completely Ludicrous. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Looking Online, for Better and for Worse . . . . . . . . . . . . . . . . . . . . . . .

116 116 118 118 119 120 120 121 121 122 122 123 124 125

Gluten-Free . . . Nutritiously . . . . . . . . . . . . . . . . . . . . . . . . . .

129

Taking a Healthful Approach to Gluten-Free Living . . . . . . . . . . . . . . . Simplifying weight management. . . . . . . . . . . . . . . . . . . . . . . . . . . . Focusing on nutrient density. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Trying to gain weight on the gluten-free diet . . . . . . . . . . . . . . . . . Regulating Blood Sugar . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . The high cost of high insulin . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Good carbs, bad carbs: Tuning in to the glycemic index and glycemic load . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Dining with cavemen: The Paleolithic diet. . . . . . . . . . . . . . . . . . . . Eliminating Dairy As Well As Gluten . . . . . . . . . . . . . . . . . . . . . . . . . . . . Comparing caveman-style to low-carb diets. . . . . . . . . . . . . . . . . . Reviewing the more healthful approach . . . . . . . . . . . . . . . . . . . . . Being Healthy, Stealthy, and Wise. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Avoiding nutritional pitfalls on the gluten-free diet. . . . . . . . . . . . Getting the fiber you need on a gluten-free diet . . . . . . . . . . . . . . The whole truth (and nothing but) about whole grains. . . . . . . . . Recognizing a Truism: Junk Is Still Junk . . . . . . . . . . . . . . . . . . . . . . . . . Gaining an Athletic Advantage by Being Gluten-Free . . . . . . . . . . . . .

130 131 133 135 136 137

Living Gluten-Free For Dummies

126 127

138 141 142 144 145 146 147 148 149 150 150

PART 3: PLANNING AND PREPARING: THE PRELUDES TO COOKING. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

153

Creating a Gluten-Free-Friendly Kitchen. . . . . . . . . . .

155

Sharing the Kitchen with Gluten. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Avoiding cross-contamination. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Storing foods separately for convenience. . . . . . . . . . . . . . . . . . . . Taking Inventory of the Pantry and Fridge . . . . . . . . . . . . . . . . . . . . . . Stocking specialty ingredients. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Having these mixes on hand. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Considering these specialty premade products. . . . . . . . . . . . . . .

156 157 160 161 161 163 165

Shopping Is Easier Than You Think. . . . . . . . . . . . . . . . . .

167

Knowing What You Want . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Planning your meals. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Making lists. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Deciding What to Buy. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Checking out gluten-free specialty products. . . . . . . . . . . . . . . . . . Remembering naturally gluten-free foods . . . . . . . . . . . . . . . . . . . Asking for opinions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Deciding Where to Shop. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Regular grocery stores . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Natural foods or health food stores. . . . . . . . . . . . . . . . . . . . . . . . . Farmers’ markets. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Ethnic markets. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Gluten-free retail stores. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Navigating the Aisles. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Perusing the perimeter. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Sorting through the health food aisle . . . . . . . . . . . . . . . . . . . . . . . Living Gluten-Free — Affordably. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Scaling back on specialties. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Saving on shipping . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Going generic. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eating nutritiously. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eating in . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Using gluten-free mixes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

168 168 170 171 171 171 172 173 173 174 174 174 175 175 175 176 177 177 178 178 179 179 179

Cooking: Tips and Techniques. . . . . . . . . . . . . . . . . . . . . . . .

183

Creatively Gluten-Free: Improvising in the Kitchen . . . . . . . . . . . . . . . Adapting any dish to be gluten-free. . . . . . . . . . . . . . . . . . . . . . . . . Avoiding cross-contamination when cooking. . . . . . . . . . . . . . . . . Using standby substitutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

184 184 186 186

CHAPTER 9:

CHAPTER 10:

CHAPTER 11:

Table of Contents

ix

Cooking with Wheat Alternatives . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 189 Incorporating alternative gluten-free grains. . . . . . . . . . . . . . . . . . 190 Thickening with gluten-free starches and flours. . . . . . . . . . . . . . . 191 Cutting out casein, too . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 192 Trying Your Hand at Gluten-Free Baking. . . . . . . . . . . . . . . . . . . . . . . . 194 Mixing it up with mixes. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 194 Introducing xanthan gum: The star of the dough. . . . . . . . . . . . . .195 Substituting gluten-free flours. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 195 Making your own gluten-free flour mixtures . . . . . . . . . . . . . . . . . 196 Baking bread the gluten-free way. . . . . . . . . . . . . . . . . . . . . . . . . . . 198

PART 4: FROM MENUS TO MEALS: RECIPES GALORE. . . . . CHAPTER 12:

CHAPTER 13:

CHAPTER 14:

CHAPTER 15:

x

201

Beginning with Breakfast. . . . . . . . . . . . . . . . . . . . . . . . . . . . .

203

Getting Your Day Off to a Gluten-Free Start . . . . . . . . . . . . . . . . . . . . . Grab ‘n go starters. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Power-start your gluten-free day with protein. . . . . . . . . . . . . . . . Getting Eggcited about Eggs . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Blending Something Smoothie . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Wake Up and Smell the Coffee Cake: Hot Breakfast Ideas. . . . . . . . .

204 204 207 208 211 213

Appetizers with Attitude. . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

219

Fashioning Finger-Lickin’-Good Finger Foods . . . . . . . . . . . . . . . . . . . . Digging into Dips and Dippers. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Going Wild with Wraps. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Rice rolls. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exploring lettuce wraps . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

220 225 229 230 231

Sensational Soups, Salads, and Sides . . . . . . . . . . . . . . .

235

Chowing Down Chowders and Sipping Soups . . . . . . . . . . . . . . . . . . . Making Strides with Salads and Sides . . . . . . . . . . . . . . . . . . . . . . . . . . Serving salads with green, leafy stuff. . . . . . . . . . . . . . . . . . . . . . . . Dressing it up with dressings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Finishing off your salad with some fixin’s . . . . . . . . . . . . . . . . . . . . Getting creative with croutons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Move Over, Mashed Potatoes: Considering New Sides. . . . . . . . . . . .

236 240 240 241 245 246 248

Enticing Entrées. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

253

Making Poultry with Pizzazz. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Eating Meat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Buying beef. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Cooking with pork. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Diving into Seafood. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Exploring Vegetarian Entrées . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

254 259 259 262 265 269

Living Gluten-Free For Dummies

CHAPTER 16:

Enjoying International Cuisine. . . . . . . . . . . . . . . . . . . . . . .

275

Making Mexican Gluten-Free. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 276 Cooking Gluten-Free with an Asian Persuasion . . . . . . . . . . . . . . . . . . 280 Gluten-Free Goes Global . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 284 CHAPTER 17:

CHAPTER 18:

Pizza, Pasta, and Bread: Foods You Thought Were a Thing Taboo . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

291

Making Pizza with Pizzazz. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Crust: The pizza foundation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pizza sauces. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pizzas beyond cheese and pepperoni . . . . . . . . . . . . . . . . . . . . . . . No More Pining for Pasta. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Making Bread. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

292 292 294 297 300 303

Getting Your Just Desserts. . . . . . . . . . . . . . . . . . . . . . . . . . . .

307

Daring to Be Decadent: Gluten-Free Indulgences . . . . . . . . . . . . . . . . 308 Making Sweet Stuff to Pack ‘n’ Snack On. . . . . . . . . . . . . . . . . . . . . . . . 312 Being Sensible: Sweets for the Health-Conscious . . . . . . . . . . . . . . . . 319

PART 5: LIVING — AND LOVING — THE GLUTEN-FREE LIFESTYLE 24/7. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

325

Getting Out and About: Eating Away from Home. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

327

CHAPTER 19:

Identifying the Golden Rules of Going Out Gluten-Free . . . . . . . . . . . 328 Don’t expect others to accommodate you. . . . . . . . . . . . . . . . . . . .328 Ask what’s for dinner . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329 Fill ‘er up before you go . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329 BYOF: Bring your own food . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 329 Bite your tongue when they make a mistake . . . . . . . . . . . . . . . . . 330 Enjoy the company . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 330 Dining Out: Restaurant Realities and Rewards. . . . . . . . . . . . . . . . . . . 331 Choosing the restaurant. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 332 Making smart menu choices . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 336 Talking with the staff: Ask and ye shall receive. . . . . . . . . . . . . . . . 336 Having restaurants cook the food you bring. . . . . . . . . . . . . . . . . . 338 Remembering the art of healthy tipping . . . . . . . . . . . . . . . . . . . . . 338 The Incredible, Edible Journey: It’s Travel Time! . . . . . . . . . . . . . . . . . . 340 Researching your destination . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 340 Sprechen zie gluten? Speaking gluten-free in other countries. . . 341 Choosing gluten-free-friendly accommodations . . . . . . . . . . . . . . 341 Packing your own provisions. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 342 Getting there . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 343

Table of Contents

xi

CHAPTER 20:

Raising Happy, Healthy, Gluten-Free Kids. . . . . . . . . .

345

Forging through the Feelings. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 346 “My child’s life is changed forever” . . . . . . . . . . . . . . . . . . . . . . . . . . 348 “I don’t want my kid to feel different”. . . . . . . . . . . . . . . . . . . . . . . . 348 “Will they turn out okay?”. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 349 “This is harder for me than it is for them”. . . . . . . . . . . . . . . . . . . . 350 Focusing on the good stuff. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .351 Talking to Your Kids about Being Gluten-Free . . . . . . . . . . . . . . . . . . . 352 Including the whole family. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352 Keeping the discussion upbeat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 352 Explaining the new lifestyle . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 354 Reinforcing the idea that gluten makes your child feel icky. . . . . 355 Handling your child’s reaction. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 356 Helping your kids talk to others about the diet . . . . . . . . . . . . . . . 357 Deciding Whether the Whole Family Should Be Gluten-Free. . . . . . . 359 The pros . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359 The cons. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 359 Middle ground. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 360 What about babies?. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 361 Giving Your Child Control of Their Diet . . . . . . . . . . . . . . . . . . . . . . . . . 361 Working together to make good choices. . . . . . . . . . . . . . . . . . . . . 362 Trusting kids when you’re not there. . . . . . . . . . . . . . . . . . . . . . . . . 363 Hitting the Road with the Gluten-Free Gang. . . . . . . . . . . . . . . . . . . . . 364 Leaving Your Gluten-Free Kids in the Care of Others . . . . . . . . . . . . . 364 Trusting your kids with friends, family, and sitters. . . . . . . . . . . . . 365 Sending your children to school . . . . . . . . . . . . . . . . . . . . . . . . . . . . 365 Guiding Your Gluten-Free Teens. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367 Noticing changing symptoms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 367 Understanding why teens may cheat on the diet. . . . . . . . . . . . . . 367 Helping teens after they move out. . . . . . . . . . . . . . . . . . . . . . . . . . 368 CHAPTER 21:

Beating the Blues: Overcoming Emotional Obstacles. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

371

Recognizing Common Emotional Struggles. . . . . . . . . . . . . . . . . . . . . . 373 Dealing with sheer shock and panic. . . . . . . . . . . . . . . . . . . . . . . . . 375 Being angry and frustrated . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 375 Coping with grief and despair. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 376 Feeling loss and deprivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 376 Facing sadness and depression. . . . . . . . . . . . . . . . . . . . . . . . . . . . .377 Dealing with Denial. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380 When you’re the one in denial. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 380 When others are in denial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 382

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Getting Back on Track When You’re Feeling Derailed . . . . . . . . . . . . . 383 Regaining control. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 383 Getting beyond big words with heavy implications. . . . . . . . . . . . 383 Focusing on what you can eat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 384 Deflecting the temptation to be annoyed or offended . . . . . . . . . 385 Faking optimism . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 386 Spreading attitudes — they’re contagious. . . . . . . . . . . . . . . . . . . . 387 Redefining Who You Are. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 387 Avoiding Negative Self-Imaging. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 389 Resisting the Temptation to Cheat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 390 Realizing why you want to cheat. . . . . . . . . . . . . . . . . . . . . . . . . . . . 390 Assessing the consequences. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 392 Overcoming the temptation. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .392

PART 6: THE PART OF TENS. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . CHAPTER 22:

CHAPTER 23:

393

Ten Benefits of Being Gluten-Free. . . . . . . . . . . . . . . . . . .

395

You Know How to Improve Your Health . . . . . . . . . . . . . . . . . . . . . . . . If You Have Problems with Gluten, Your Health Improves Right Away . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Going Gluten-Free May Help with Autism, ADD, ADHD, and So On. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . If You’re Not Eating Gluten, You’ll Never Develop Celiac Disease. . . . You May Decrease the Chances of Developing Autoimmune Diseases . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . You May Be Turning Back the Clock. . . . . . . . . . . . . . . . . . . . . . . . . . . . Symptoms of Menopause May Decrease . . . . . . . . . . . . . . . . . . . . . . . Your Weight Can Be Easier to Manage. . . . . . . . . . . . . . . . . . . . . . . . . . You’re More Aware of Nutrition . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Blood-Sugar Levels May Be More Stable. . . . . . . . . . . . . . . . . . . . . . . .

396

Ten Tips to Help You (or Your Child) Love the Gluten-Free Lifestyle. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

396 396 397 397 397 398 398 398 399

401

Focus on What You Can Eat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 401 Expand Your Culinary Horizons with Adventuresome Alternatives. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .402 Enjoy Ethnic Fare. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 402 Control the Diet. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 402 Eat to Live, Don’t Live to Eat. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 403 Remember: You’re Different — So What? . . . . . . . . . . . . . . . . . . . . . . . 403 Go Ahead — Enjoy a (Gluten-Free) Splurge. . . . . . . . . . . . . . . . . . . . . . 403 Tune In to the Benefits. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 404 Turn Away from Temptation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 404 Deal with It; Don’t Dwell on It . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 404

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Ten Lame Excuses Not to Go Gluten-Free. . . . . . . . . .

405

I’m Too Fat to Have Celiac Disease or Gluten Sensitivity. . . . . . . . . . . I Don’t Have the Symptoms of Gluten Sensitivity or Celiac Disease. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . I Don’t Want to Be Deprived of Important Nutrients. . . . . . . . . . . . . . I Don’t Want to Give Up (Insert Favorite Gluten-Containing Food). . . My Problem Isn’t with Gluten. I Just Don’t Do Well with Pasta and Beer. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Pizza Makes Me Feel Bad; It Must Be the Dairy or Tomato. . . . . . . . . I Have Irritable Bowel Syndrome, and My Doc Said Diet Doesn’t Affect It. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . I’m Too Old for the Gluten-Free Diet to Do Any Good. . . . . . . . . . . . . I Was Tested for Celiac Disease, and I Was Negative (or I Outgrew It). . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . I Don’t Have the Genes for Celiac Disease. . . . . . . . . . . . . . . . . . . . . . .

405

INDEX. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

409

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406 406 406 407 407 407 408 408 408

Foreword

H

as anybody out there ever experienced stomach aches, bloating, headaches, mood swings, short memory loss, difficulty concentrating, fatigue, constipation, diarrhea, short temper, hair loss, tingling of the arms or legs, joint pain, or anemia for unknown reasons? If not, go ahead and eat as much pasta and pizza as you like. If, on the other end, you have experienced any of these symptoms (and I’ll bet everyone has, at some point), chances are, you and gluten don’t agree. These symptoms are a few examples of how these chameleonic conditions called gluten-related disorder can present clinically. But what really are these gluten-related disorders, including celiac disease, non-celiac gluten sensitivity (NCGS), and wheat allergy? You can read lots of details about them in this book. But let’s take a quick look at these conditions and why they’re so often misdiagnosed. Celiac disease is an autoimmune disease that targets the intestines and renders them unable to properly handle foodstuff. The condition leads to a wide range of clinical manifestations of variable severity. Besides the typical malabsorption symptoms (chronic diarrhea, weight loss, and abdominal distension), celiac disease can manifest itself in a previously unappreciated spectrum of symptoms that potentially can affect any organ system. What’s more, many people who have celiac disease don’t even exhibit the typical gastrointestinal symptoms. More common are patients with nonintestinal symptoms, such as anemia, joint pain, chronic fatigue, short stature, skin lesions, and neurological and behavioral problems (including peripheral neuropathy, epilepsy, dementia, schizophrenia, and seizure with intracranial calcifications). Because celiac disease often presents in an atypical or even “silent” manner, many cases remain undiagnosed. Such cases carry the risk of long-term complications in adolescence and adulthood, including osteoporosis, infertility, miscarriages, cancer, and the onset of other autoimmune diseases. In the past, celiac disease was mostly restricted to Europe. A variety of epidemiological studies suggest that celiac disease is going more global, with no continent on the planet spared by the disease. An estimated 3 million Americans are affected by celiac disease, with only about 400,000 diagnosed so far.

Foreword

xv

Celiac disease is unique among autoimmune diseases, in that its trigger has something to do with nutrition. Like other autoimmune diseases, celiac disease results from the interplay of a genetic predisposition and an environmental trigger. Conversely, NCGS, the most recent recognized gluten-related disorder, doesn’t involve an autoimmune process and, therefore, doesn’t damage the intestine. Nevertheless, its clinical presentations can mimic celiac disease, so distinguishing NCGS from celiac disease is difficult based merely on the symptoms experienced. Similarly, wheat allergy can be undistinguishable from the other two forms of gluten-related disorders on clinical grounds, even if the mechanism is different. Like many other food allergies, wheat allergy tends to involve young patients that may grow out of it spontaneously over time. Although the overall number of subjects affected by celiac disease (approximately 1 percent of the general population) and wheat allergy (approximately 0.3 to 0.4 percent of the general population) has been determined, the number of people affected by NCGS isn’t as clear. Despite some similarities, substantial differences exist between these three diseases:

»» Celiac disease is with you for life, whereas NCGS and wheat allergy aren’t necessarily lifelong conditions.

»» Celiac disease requires 100 percent compliance with a gluten-free diet because even traces of gluten can be harmful. That’s not necessarily true for NCGS and wheat allergy.

»» Not complying with the recommended diet causes immediate and cumulative, long-term consequences for celiac sufferers, whereas people with NCGS and wheat allergy pay only the price of immediate symptoms.

The trigger for gluten-related disorders involves grains like wheat, rye, and barley. These grains contain a protein called gluten that is toxic to certain individuals. Thus, the cornerstone of their treatment is adhering to a strict gluten-free diet devoid of proteins from wheat, rye, barley, and related cereals. Unfortunately, gluten is a common  — and, in many countries, unlabeled  — ingredient in the human diet, presenting a big challenge for celiac patients. Gluten-free products are now becoming more widely available, but they’re still difficult to find and certainly more expensive than their gluten-containing counterparts. Some people find the gluten-free diet just too challenging to follow. That, indisputably, is the main reason people with gluten-related disorders don’t comply with the diet sometimes. But the reason they find it so challenging is because there’s a lack of information, still poor awareness among healthcare professionals, and major confusion in what foods are safe and what are not. After people are diagnosed, it isn’t unusual for doctors to advise them to go on a gluten-free diet and “good luck with that.”

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Even with an idea of what to look for, shopping for gluten-free products can be a daunting proposition, with hours of shopping to get a few items in your cart. The idea of a lifelong gluten-free diet can quickly morph into a sense of deprivation and a powerless feeling against what will be a tangible change in lifestyle. Every single event suddenly needs to be carefully planned in advance to attend to one of the most natural activities of humankind: eating. Shopping, cooking, avoiding cross-contamination, having a balanced and palatable diet  — all become overwhelming enterprises, unless you have in your hand Danna’s third edition of Living Gluten-Free For Dummies. As someone who has “been there, done that,” Danna masterfully navigates the challenges of implementing a new lifestyle that gluten-related disorders impose. This book alleviates the stress of learning the new rules of the game, using a direct and friendly approach to offer practical suggestions for eating healthy, eating well, and staying safe. This is truly a must for both beginners and veterans on the gluten-related disorders circuit. It’s a book you want to have handy in your kitchen, take with you when you travel, and give to friends and loved ones — it’s a resource to help you get back to eating with a smile on your face. Enjoy! Alessio Fasano, MD Chief of the Division of Pediatric Gastroenterology and Nutrition, Massachusetts General Hospital for Children (MSfC) Harvard Medical School Vice Chair of Research — MGfC Director of The Mucosal Immunology and Biology Research Center and The Center for Celiac Research and Treatment Professor of Pediatrics, Harvard Medical School and Professor of Nutrition, Harvard T.H. Chan School of Public Health

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Introduction

N

ot so many years ago, the gluten-free lifestyle was reserved for an obscure cluster of people who were forced to settle for wannabe foods that resembled sawdust but didn’t taste as good.

Today, the gluten-free lifestyle is sweeping the world with the force of a really big blowtorch, and the ramifications are enormous. Gluten-free products abound (and are a far cry from the foods my family used to choke down when I started doing this in the early ’90s), labels are far less ambiguous, and people no longer look at you like you have four heads when you ask for a burger without the bun. Being gluten-free isn’t about being on a diet. It’s about living a lifestyle. Whether you’ve been gluten-free for decades or are only considering the idea of giving up gluten, this book is loaded with information that can affect every aspect of your life, from the obvious — your health and how you shop, cook, and eat — to more subtle facets, like minimizing expenses, socializing, eating at restaurants, traveling, dealing with friends and family, and managing various emotional ups and downs. I live a gluten-free lifestyle, and I have for years. I have no ulterior motives, other than some quirky desire to don a cape, call myself the Glutenator, and travel far and wide to extol the virtues of a gluten-free lifestyle. Whether you go gluten-free really doesn’t matter to me. I have no supplements to sell you, no gluten-free food products that I endorse — I don’t even get paid for having founded the world’s largest support organization for gluten-free kids! What does matter to me is that I do my best to tell you everything you need to know about living a gluten-free lifestyle so you can make healthy decisions. This book is the reference guide you need to help you with the lifestyle. It’s your reference for living — and loving — a gluten-free lifestyle.

Introduction

1

About This Book Living Gluten-Free For Dummies, 3rd Edition, like all For Dummies books, is divided up so you don’t have to read it all at once, or even front to back, if you don’t want to. You can skip from B to R to A and even reread B if you want. You can read it sideways and standing on your head, if you’d like; all you have to do is find a section you’re interested in and dig in (how’s that for liberating?). If you’re new to the gluten-free lifestyle and have tons of questions, you’re probably best off starting at Chapter 1 and working your way through most of the book in order. If you’ve been gluten-free for years, do yourself a favor and take a look at Chapter 6. You may be surprised by some of the foods allowed on the gluten-free diet that used to be considered no-nos. You may find that this chapter opens a lot of cupboard doors you once thought were closed! This new edition features several important updates:

»» An entirely new chapter that takes you through the last few decades of gluten freedom, including how it has evolved and where it’s headed.

»» The latest scientific and medical advances in nondietary treatments for celiac disease and gluten sensitivity.

»» The most recent recommendations on testing for celiac disease and gluten sensitivity.

»» Updated information on how gluten affects behavior, including ADHD

(impulsive/hyperactive, inattentive/distractable, combination) and autism.

»» Expanded focus on optimal nutrition (because that’s my passion!) and women’s health.

Here are some other things to remember:

»» I make words up, but they’re pretty easy to figure out. For instance, glutenated

means a product has been contaminated with gluten. Glutenous means it has gluten in it, a glutenivore is something that eats gluten, a Glutenator is one who battles the evils of gluten, and so on. It’s fun! Before you know it, I’ll bet you’ll be making up your own glutenologisms.

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Living Gluten-Free For Dummies

»» Feel free to tinker with the recipes. If you don’t have an ingredient a recipe calls for, don’t worry — make a substitution. You may find your swap is a huge improvement. And don’t worry if you don’t want to measure. I estimated the measurements anyway because I’m not sure I even own measuring spoons and cups!

»» If you want a vegetarian recipe, just look for the tomato icons. Here are some conventions for the ingredients themselves:

»» If an ingredient appears in a recipe, it’s assumed to be gluten-free. For

instance, I don’t specify “gluten-free vanilla” because all vanilla is gluten-free. And soy sauce usually has gluten, but when I call for soy sauce in a recipe, I’m assuming you’ll use a gluten-free version.

»» Baking with gluten-free flours works best if you use a mixture of flours.

Chapter 11 explains how to mix gluten-free flours to get the best results.

»» Milk substitutes can be used in place of milk in most recipes. »» Eggs are large. »» Butter and margarine are interchangeable (I’m sure this would be debated by “real” chefs, but for the purpose of my recipes, feel free to sub one for the other).

»» All temperatures are in Fahrenheit.

Foolish Assumptions You spent your hard-earned cashola on this book, and that means either you want to find out more about the gluten-free lifestyle or you’re related to me. Because my family members already hear way more about this stuff than any human should have to endure, I’ve written this book with you in mind — and I’ve taken the liberty of making a few assumptions about you. One or more of the following should apply:

»» You’re considering going gluten-free and will use this book to determine whether to take the plunge.

»» You love someone who’s gluten-free, and you’re so cool that you want to find out more about the lifestyle so you can be supportive.

»» You’re new to the diet and are looking for the “manual” that can tell you how to live a gluten-free lifestyle.

Introduction

3

»» You’ve been gluten-free for years and want the latest, greatest information about dietary guidelines and state-of-the-art research.

»» You’re a professional who has gluten-free clients, customers, or patients, and you want to know more about the gluten-free lifestyle and the medical conditions that benefit from it.

»» You work at or own a restaurant and want to make sure your patrons are free from glutenation.

Icons Used in This Book Some people are more visual than others. That’s why icons are cool. This book uses several icons, and each has a little tidbit of information associated with it. Here’s what each icon means: These icons can help you live (and love!) the gluten-free lifestyle. They include info to help you save time or cut down on frustration.

Everyone can use a friendly little reminder. This icon quickly identifies some important points that you may want to make note of throughout the book.

Text flagged with the Warning icon can keep you out of trouble.

Sometimes I get really into juicy, technical, and scientific stuff. Some of you will love it; others will be bored to tears. That’s why I put it in its own area, marked by a Technical Stuff icon, so you can skip it (if you want to) without missing the gist of what’s going on in that chapter or section.

Beyond This Book This book is chock-full of tips and other pieces of helpful advice you can use as you’re living a gluten-free lifestyle. In addition, check out the book’s Cheat Sheet at www.dummies.com and search for “Living Gluten-Free For Dummies Cheat Sheet” for information to reference on a regular basis. Also check out www.glutenfree. guru for my latest tips and consultation on loving your gluten-free lifestyle.

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Living Gluten-Free For Dummies

Where to Go from Here What I suggest you do at this point is curl up in your comfiest chair and dive into the book. If you find the section you start with to be boring (puh-lease!), or for whatever reason it doesn’t pop your cork, then skip it and move on. If you’re not sure where to start, scan the table of contents or index until you find a topic that piques your interest and flip to that chapter. If you’re feeling a little down about going gluten-free, I hope my sincere passion for the gluten-free lifestyle and the healthy benefits that go along with it touch you by offering comfort, optimism, and inspiration.

Introduction

5

1

Going GlutenFree: Who, What, Why, and How

IN THIS PART . . .

Examine the reasons to consider why you should eliminate gluten, as well as the basics to help get you off and running on the gluten-free lifestyle. Look at the many medical and psychological conditions that improve on a gluten-free diet so you can decide whether this lifestyle can benefit you and can set realistic expectations for how your health may improve. Discover the different tests that are available that can help you and your healthcare provider diagnose your condition. Discuss the importance of eliminating casein, too, because many of you are going gluten-free and casein-free. Gain a deeper understanding of the evolution of the gluten-free lifestyle.

IN THIS CHAPTER

»» Getting a grip on gluten »» Discovering the advantages of the gluten-free lifestyle »» Making the most of meals »» Going from gluten-gorger to glutenfree forager — and loving it

1

Chapter 

Gluten-Free from A to Z: The Basics of Being Gluten-Free

I

figured the doctor had made a mistake. “You mean glucose,” I corrected him with a tinge of exasperation at his clumsy blunder. “You must mean glucose.” Geesh. This was going to be tough. No more chocolate.

“No, I mean gluten,” he insisted. “And to be honest, I really don’t know much about the gluten-free diet. You can see our hospital dietitian, but she won’t have much on the diet, either. You’re going to have to do some homework on your own.” All I could muster was a blank stare. What the heck was gluten? Keep in mind the year was 1991, when I knew as much about gluten as I know about piezoelectric polymers. Approximately nothing. Stranded on some figurative island located somewhere between Terror Bay and the Dread Sea, I figured I had two options: Tyler could starve to death, or I could get busy trying to figure out what the heck gluten was all about. People probably frown on mommies who let kids starve to death.

CHAPTER 1 Gluten-Free from A to Z: The Basics of Being Gluten-Free

9

The Internet was non-existent, and I couldn’t find any books or support groups; it was time to get resourceful and creative. I buried myself in the University of California, San Diego med-school library and was determined to find out everything I could — and then share it with the world (at least, the other six people on the planet who were gluten-free at the time). Little did I know that gluten-free-ness would explode into what it is today — one of the fastest-growing nutritional movements in the world — and this mission of mine would become all-consuming. This chapter gives you a basic rundown of what living gluten-free is all about.

How the Gluten-Free Lifestyle Saved My Son I didn’t aspire to any of this. I was deeply involved in a busy, successful career and juggling parenthood at the same time. But today I’m an accidental author, researcher, and support-group founder who was shoved into the deep end of the gluten-free pool and realized I needed to learn to swim. Fast. Until 1991, my family and I ate a fairly typical American diet. I tried to keep it nutritious (extra cheese on the spaghetti to add protein), and I was aware of the need to limit fat and calories (scratch the extra cheese), but I didn’t spend a lot of time worrying about what the family ate or the long-term effects food may have on our bodies. Clearly I didn’t really know a lot about nutrition then, and I pretty much took eating for granted. All that changed when my first child, Tyler, was about 9 months old and developed what seemed to be chronic diarrhea. The pediatrician chalked it up to the antibiotics Ty was taking for ear infections and told me to call if it hadn’t cleared up in a few weeks. Three weeks later, I was back in the pediatrician’s office. “Yep, he still has diarrhea,” the doctor declared with confidence. “Yeah, I know. That’s why I’m here,” I mumbled with self-restraint worthy of the Nobel Peace Prize. “Give him foods that will plug him up, like crackers and bread, and call me if it hasn’t cleared up in a few weeks.” I’d like to digress for a moment to point out that I’m surrounded in my family by doctors and healthcare professionals, going back to my grandpa and following through to my dad, siblings, and my siblings’ spouses. Furthermore, I was premed throughout college — I have an intense respect for doctors, which in retrospect may have stalled my progress a bit as I sought answers because I didn’t question their conclusions.

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PART 1 Going Gluten-Free: Who, What, Why, and How

So I waited  — not patiently (patience isn’t my greatest strength). Three weeks later, after another perfunctory examination of Tyler’s ears, nose, and throat, the doctor made that “hmm” noise that doctors make when they figure out the problem. Yay! We were finally going to get some answers! “Yep, he still has diarrhea. Don’t worry about it. He’s not dehydrated, and he’s in the 75th percentile for height and weight. It’s nothing to be concerned about.” Gee, could the fact that I practically infuse him with liquids have anything to do with the fact that he’s not dehydrated? And does the fact that he started off in the 99th percentile and has dropped to the 75th mean anything? Apparently not. I was instructed not to bring him back for diarrhea because there was nothing to be concerned about. They suggested that I not return for the diarrhea. I guess they meant it because when I called three weeks later, I was refused a visit. Doctor number two agreed with doctor number one. After a quick look in the ears, nose, and throat, he declared that Tyler was a healthy baby boy. “But what about the diarrhea?” I asked. “Really, it’s nothing to worry about. He’s a healthy height and weight, he’s not dehydrated, and he looks fine to me,” he said as he raced to his next four-minute appointment. I considered offering to give Doctor DoNothing a close look at the 22 diarrhea diapers a day that I was changing but somehow managed to control myself. In desperation, we changed doctors again, and — long story short — a quick look in the ears, nose, and throat turned up — you guessed it — nothing. By this time, Tyler’s belly had grown hugely distended (see Figure 1-1), his arms and legs had wasted to skinny little limbs, his heinie had disappeared completely, and his personality had changed. He had transformed from a lively, energetic toddler to a listless, irritable, clingy, and quiet little boy. The diarrhea had started nearly a year before, and I figured I was just a neurotic first-time parent with a mellow kid who pooped a lot. Eventually, we ended up in the hands of doctor number four. By this time, realizing there was nothing wrong with Tyler, I thought nothing of dragging this baby with a distended, malnourished belly into the pediatrician’s office for a routine visit. After looking in Tyler’s ears, nose, and throat, he laid Tyler down on his back and thumped on his belly like you might thump a honeydew melon to see whether it’s ripe. “My goodness,” he said with that I’m-alarmed-but-I’m-a-doctor-anddon’t-want-to-freak-you-out tone. “What’s going on with his belly? It’s very distended.” I couldn’t answer through the tears of relief. After testing for cystic fibrosis, blood diseases, and cancer, we finally got the bittersweet diagnosis. “Your son has celiac disease.” Huh? Is that anything like the flu? Surely a few weeks of antibiotics will wipe it out. “He’ll need to be on a gluten-free diet for the rest of his life. Oh — and take this seriously — for him, even one molecule of gluten is like ingesting rat poison.”

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11

FIGURE 1-1:

My son’s distended stomach. Photo submitted by Danna Van Noy

Huh? Rest of his life? Rat poison? I was terrified to feed my own child, but I pulled myself together and headed to the store with a hungry toddler, asking him what he wanted to eat. “Cwackews.” Crackers. Sure. I began to read labels, and my head began to spin. Everything had flour in it. If you’re wondering why I didn’t just head to the gluten-free section, let me remind you this was 1991. There was no such thing. I asked the store manager if they had any gluten-free products and was ushered to the sugar-free section. Hours later I found Fritos and combed the label 28 times. It appeared to be safe, so I loaded five bags into the cart and left, both of us in tears. I don’t have room here to give the details of the rest of the story, but Tyler quickly improved, and has grown up to be a happy, healthy gluten-free man with kids of his own. You can also read the full story in my other books or on my websites. Suffice it to say that the words “for the rest of his life” had a huge impact, and I realized it was time to step up to the plate and do some research on lifestyle and attitude adjustments to help our family — and others. When I heard that Tyler would have to lead a gluten-free lifestyle, I realized our family had come to a fork in the road. At first, we were devastated, confused, frustrated, and grief-stricken. But I knew there was another path — a path that would have a more positive effect on Tyler’s life. As we found out how to live with the diet and its ramifications, we worked hard to find a way to turn the adversity into a positive force in our lives. It didn’t take long to realize that what we once interpreted as misfortune has actually been a huge positive force in our lives — and, most importantly, Tyler agrees.

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Understanding What Gluten Is and Where It Is Gluten has a couple definitions; one is technically correct but not commonly used, and the other is commonly used but not technically correct. I give you more details on both definitions in Chapter 6, but to get you started, and for the purposes of this book, here’s the common definition: Gluten is a mixture of proteins in wheat, rye, and barley. Oats don’t have gluten but may be contaminated, so unless they’re labeled as gluten-free oats, they’re forbidden on a strict gluten-free diet, too. You can find lots of information about what you can and can’t eat in Chapter 6, as well as a detailed listing of safe and forbidden ingredients at www.celiac.com or other websites. But you need to have a general idea of what kinds of foods have gluten in them so you know what to avoid. Foods with flour in them (white or wheat) are the most common culprits when you’re avoiding gluten. The following are obvious gluten-glomming foods (obviously the gluten-free versions of these products are safe):

»» Bagels »» Beer »» Bread »» Cookies, cakes, and most other baked goods »» Crackers »» Pasta »» Pizza »» Pretzels But along with these culprits come not-so-obvious suspects, too, like licorice, many (read most) cereals, and lots of hard candies. When you’re gluten-free, you get used to reading labels, calling manufacturers, and digging a little deeper to know for sure what you can and can’t eat (more on that in Chapter 6). You have to do without those foods, but you really don’t have to do without. There’s a subtle but encouraging difference. Food manufacturers and specialty companies make delicious gluten-free versions of just about every food imaginable these days.

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Thinking Wheat Is Good for You? Think Again You may see lots of labels proudly declaring a product to be wheat-free (some of which, like spelt and kamut, aren’t really wheat-free at all). When something says it’s wheat-free, it doesn’t mean the food is gluten-free. And gluten-free doesn’t mean healthy, but you can read more about nutrition in Chapter 8. Gluten is in wheat, but it’s also in rye and barley — and most people don’t eat oats on the gluten-free diet, either. So something can be wheat-free but still have other gluten-containing ingredients, like malt, which is usually derived from barley. In that case, the product is wheat-free but not gluten-free. Anyone who’s spent more than a day on planet Earth has been barraged with messages hailing the virtues of wheat — especially in its whole form. Wheat and other grains hog most of the food pyramid(s), suggesting you should eat gobs of it, and it’s touted as a good source of fiber and nutrients. Wheat does provide some health benefits, but you can find those benefits in other food sources, too. So how can wheat be at the root of so many health problems? For several reasons, wheat may not be the key to perfect dietary health:

»» Wheat was invented yesterday. Wheat wasn’t introduced until the

Agricultural Revolution, about 10,000 years ago — that’s yesterday, evolutionarily speaking. Before that, people ate lean meats, fish, seafood, nonstarchy vegetables, berries, and fruits. When wheat came on the scene, it was completely foreign.

»» Humans don’t fully digest wheat. Human bodies have to adapt in order to

tolerate wheat, and lots of people don’t tolerate it well at all. Most humans have only one stomach — and one just isn’t enough to digest wheat. Cows have four stomachs (actually, four chambers within one stomach). That’s why Bessie the Bovine does okay with wheat. The wheat goes from one stomach to another and another and — well, you get the picture. By the time it reaches tummy number four, it’s fully digested and Bessie’s feeling fine.

»» Wheat contributes to leaky gut (Z is for zonulin). When people eat wheat,

they produce extra amounts of a protein called zonulin. The lining of the small intestine is basically a solid wall of cells that most materials can’t pass through on their own. On the lining of the small intestine, zonulin waits for nutrients to come along. When important vitamins and minerals are present, zonulin tells the passageways in the intestinal wall to open so those nutrients can pass into the bloodstream. The blood then carries the nutrients to other parts of the body.

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When some people eat wheat, they produce too much zonulin and the gates open too wide. All sorts of stuff gets into the bloodstream, some of which, like toxins, shouldn’t be there. This increased permeability of the lining of the small intestine, or leaky gut syndrome, can cause lots of different health issues.

»» Products containing wheat are often unhealthy. Think crackers, cookies, pizza, cakes — you get the idea. Whether it’s gluten-free or not, junk food is still junk food.

Discovering the Benefits of a Gluten-Free Lifestyle The gluten-free lifestyle isn’t about your diet. Sure, this book talks about food, but the diet itself takes up only a few pages. Being gluten-free involves a lot more than just cutting gluten out of your diet. It affects every aspect of your life, from how you communicate and with whom, to how you handle ordering at restaurants, attending social functions, and dealing with emotional challenges. I believe it’s important to take control of your diet — or, if it’s your kids who are gluten-free, help them gain and retain control. Going gluten-free also gives you an opportunity to reach out and help others who may be embarking upon the wonderful world of gluten freedom, as well as a chance to discover more about nutrition and what you’re actually putting into your body on a daily basis. If that sounds like a lot of work, relax. I guide you through it. And not only can you feel better, but you also can feel better about yourself! You have lots of company. The gluten-free movement is sweeping the nation for plenty of reasons, but the one that stands out is that when people give up gluten, they often feel better. This section tells you what the gluten-free diet can do for your body — the benefits you can enjoy in addition to all the emotional perks of the lifestyle. People today live in a quick-fix, panacea-pursuing, pill-popping, make-mebetter-fast society, and if they see promise of a quick way to fix what’s ailin’ them, they’re buyin’ it. Changing both your diet and your lifestyle is neither quick nor easy, but the benefits of going gluten-free can be fantastic — no surgery or medication required! The following sections describe some of the ways the body and brain are affected by gluten in people who have an intolerance. I go into greater detail about all of the symptoms and manifestations in Chapters 2 and 3.

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Beyond the gut: Head-to-toe health benefits Twelfth-century physician Maimonides said, “Man should strive to have his intestines relaxed all the days of his life.” No doubt! When your intestines aren’t relaxed — or when they’re downright edgy or uptight — they affect all your other parts, too. It’s kind of like when you’re in a really good mood and your best friend is grumpy — the situation can make you grumpy, too; one cantankerous intestine can be a buzz-kill for the entire body. In a way, the body’s reaction to gluten doesn’t compute. For some people, eating gluten can cause headaches, fatigue, joint pain, depression, or infertility; at first, those types of symptoms may seem unrelated to something going on in your gut, much less something you eat — much less something as common in your diet as wheat. But those problems — and about 250 others — are symptoms of celiac disease and gluten sensitivity. People with celiac disease or gluten sensitivity do sometimes have gastrointestinal symptoms, but more often the symptoms are extraintestinal, meaning they take place outside the intestinal tract. If your body has problems with gluten, the gluten-free diet may help relieve lots of symptoms, such as these:

»» Fatigue »» Gastrointestinal distress (gas, bloating, diarrhea, constipation, vomiting, heartburn, and acid reflux)

»» Headaches (including migraines) »» Inability to concentrate (also known as fuzzy brain) »» Weight gain or weight loss »» Infertility »» Joint, bone, or muscle pain »» Depression, anxiety, and mood disorders »» Respiratory problems »» Fertility and hormonal issues The list’s impressive, isn’t it? And it’s a consolidated version of the hundreds of symptoms. The idea that eliminating one thing from your diet — gluten — could improve so many different conditions is almost hard to believe. Yet it’s true — and

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it really makes sense when you realize that if the food you’re eating can be toxic to your body, your body’s going to scream in lots of different ways.

Worsening psychiatric symptoms In people with gluten intolerance, eating gluten may make the symptoms of some psychiatric conditions worse. Some of the most fascinating findings indicate that removing gluten from the diet can improve behaviors of people with these conditions:

»» Autism (and other conditions on the pervasive developmental disorder-not otherwise specified or PDS-NOS spectrum)

»» Schizophrenia and other mood disorders »» Attention-deficit (hyperactivity) disorder (ADHD - hyperactive and impulsive, inattentive, and combined)

I talk a lot more about this link between gluten and behavior in Chapter 5. Millions of people have wheat allergies, which are different from gluten sensitivity or celiac disease  — and they, too, improve dramatically on a wheat-free/ gluten-free diet. But beyond the obvious improvement you enjoy if you have an intolerance, other conditions and symptoms can improve on a wheat-free diet, such as PMS and menopausal symptoms. Eliminating wheat may even slow or reverse the signs of aging, reducing wrinkles and improving the tone and texture of skin.

Mastering the Meals This book is about a lifestyle, not a diet. But no matter where that lifestyle takes you — eating in, eating out, attending social events, choosing, planning, shopping, preparing — being gluten-free all comes down to one thing: food. If you’re a culinary hacker and you’re afraid you’ll have to wake up at 4 a.m. to bake gluten-free bread and make pasta from scratch, turn off the alarm and go back to sleep. Plenty of gluten-free specialty foods are available to take the place of all your old favorites. Better yet (from a health standpoint), you’re likely to find that those foods become less important to you.

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Whether you’re a kitchenphobe or a foodie, living a gluten-free lifestyle offers you an enormous selection of foods and ingredients to choose from. The following sections explain what you need to do to get ready, how to shop, and what you need to know to set yourself up for success in your kitchen.

Planning and preparing Putting together smart and healthful gluten-free meals is a lot easier if you plan ahead. Walking through a store, perusing restaurant menus, or (gasp!) sitting in a bakery with a growling tummy isn’t exactly conducive to making good food choices. Give yourself a healthy advantage by planning and even preparing meals in advance, especially if your busy schedule has you eating away from home frequently. If you know you’ll be pressed for time at breakfast or lunch, make your meals the night before, and bring healthful gluten-free snacks in resealable plastic bags. One of the coolest things about adopting a new dietary lifestyle is exploring new and sometimes unusual or unique foods. You may never have heard of lots of gluten-free foods and ingredients, many of which not only are gluten-free and delicious, but also are nutritional powerhouses. With the new perspective on food that the gluten-free lifestyle can offer you, you may find yourself inspired to think outside the typical menu plan, exploring unique and nutritious alternatives.

Shopping shrewdly The healthiest way to enjoy a gluten-free lifestyle is to eat things you can find at any grocery store or farmer’s market: meat, fish, seafood, fruits, and nonstarchy vegetables (see Chapter 10 for more tips on shopping). If you want to add canned, processed, and even junk foods to your shopping list, you can still do most of your shopping at a regular grocery store, and you can even buy generics. If you hope to enjoy the delicious gluten-free specialty products that are available these days, you can find them almost anywhere. The days of being forced to shop in specialty stores or health food stores are a thing of the past  — nearly every store carries gluten-free specialty items. Or you can shop in your jammies perusing gluten-free products online (if you’re using public Internet to shop online, I suggest you change out of your jammies). Some people worry about the cost of the gluten-free lifestyle, but it doesn’t have to be more expensive. I talk about cooking gluten-free affordably in Chapter 10.

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Considering your kitchen For the most part, a gluten-free kitchen looks the same as any other kitchen — without the gluten, of course. You don’t need to go out and buy special gadgets and tools, and with only a couple exceptions, which I cover in Chapter 9, you don’t necessarily need two sets of pots, pans, utensils, or storage containers, either. If you’re sharing a kitchen with gluten, you need to be aware of some contamination issues so you don’t inadvertently glutenate (contaminate with gluten) a perfectly good gluten-free meal. Keeping your crumbs to yourself isn’t just a matter of hygiene, but it can mean the difference between a meal you can eat and one you can’t. Some people find having separate areas in the pantry or cupboards for their gluten-free products helpful. This idea is especially good if you have gluten-free kids in the house, because they can see that you always have lots of things on hand for them to eat, and they can quickly grab their favorite gluten-free goodies from their special area.

Finding your creativity in the kitchen If you give someone a recipe, you feed ’em for a meal. Show them how to make anything gluten-free, and you feed ’em for a lifetime. The point is, you can make anything gluten-free, and you’re not constrained by recipes or the fact that you can’t use regular flour or breadcrumbs. All you need is a little creativity and some basic guidelines for using gluten-free substitutions, which you can find in Chapter 11. If you’re a die-hard recipe fan, never fear  — I give you recipes in Chapters  12 through 18. Most of them are super simple to follow but leave your guests with the impression that you spent all day in the kitchen (and being thus indebted, they may volunteer to do the dishes).

Getting Excited about the Gluten-Free Lifestyle Most people who embark on a gluten-free lifestyle are doing so because of health issues — and that means they have little or no choice in the matter. When people are forced to make changes in their routine, especially changes that affect what they can and can’t eat, they’re not always so quick to see the joy in the adjustments.

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If you’re a little gloomy about going from gluten-glommer to gluten-freebie, I understand. But prepare yourself to read about the scores of reasons to be excited about the gluten-free lifestyle (for you impatient types like me, feel free to skip to Chapters  21 and  22 for a jump-start on the “Kumbaya” side of being gluten-free).

Adapting your perspective on food If you’ve been eating gluten (I believe that would make you a glutenivore) for a long time — say, for most of your life — then giving up foods as you know them may seem like a tough transition at first. Besides the obvious practical challenges of learning to ferret out gluten where it may be hidden, you have to deal with emotional, physical, social, and even financial challenges. You have to do only one thing to learn to love the gluten-free lifestyle, and that’s to adjust your perspective on food just a tinge. You really don’t have to give up anything; you just have to make some modifications. The foods that used to be your favorites can still be your favorites if you want them to be, just in a slightly different form. Or you may want to consider what may be a new and super-healthful approach for you: eating lean meats, fresh fruits, and nonstarchy vegetables. Again, you may have to tweak your perspective a bit before the diet feels natural to you, but it is, in fact, natural, nutritious, and naturally nutritious. I talk more about this approach and nutrient density in Chapter 8.

Loving food is okay People who are new to the concept of being gluten-free sometimes comment that the diet is boring. When I ask what they’re eating, their cuisine routine usually centers on carrots and rice cakes. Who wouldn’t be bored with that? For most people, that type of a diet is appalling, not appealing. I love food. I love the flavor, the feeling of being full, the nutritional value it provides. Most of all, I love to explore foods I’ve never tried  — as long as they’re gluten-free, of course. I’d never encourage you to endure a diet of bland foods that could double as packing materials. A healthful, gluten-free diet doesn’t have to be boring or restrictive. You’re not constrained to eating 32 individual portions of fruits and vegetables each day, like a rabbit nibbling nervously on carrots. If you enjoy bland foods, snaps for you. But if you think gluten-free has to be flavor-free, you’re in for a pleasant surprise.

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Getting out and about You don’t have to let the gluten-free lifestyle hold you back from doing anything you want to do. Well, okay, there are some things you can’t do — like mindlessly grab new products off the shelf without reading a label or devour a stack of gluten-laden donuts. But as far as your activities and lifestyle are concerned, you can — and should — get out and about as you always have. In the olden days, I’d dream of walking into a restaurant and asking for their gluten-free menu. Today, more often than not, doing so is a reality. You can eat at restaurants that don’t have a gluten-free menu, too — you just need to find out how to special order, tune in to contamination concerns, and ask — chances are getting better all the time that they understand your concerns and can safely accommodate them. Traveling is a breeze when you master eating at restaurants (and get a handle on language considerations if you’re traveling abroad). Going to social events just requires a little advance planning, and holidays may barely faze you after you get the hang of going out in gluten-free style. Chapter 19 gives you more information on being gluten-free when you’re out and about.

Raising kids to love the lifestyle When I heard that Tyler would be gluten-free for the rest of his life, I was flooded with a bunch of emotions, most of which weren’t very pleasant. At first, I felt burdened and overcome with grief and frustration, and we longed for the perfectly healthy little baby we thought we were entitled to. It was easy to focus on what had been lost and all that we’d have to change in our lives. But adjusting didn’t take long, and soon we’d learned not just to live the gluten-free lifestyle — but to love the gluten-free lifestyle. Most important, we wanted Tyler to love the lifestyle. After all, his diet, his life, and his future would be most impacted. Thankfully, decades later, Tyler does love the gluten-free lifestyle, and your kids can, too. Lots of ideas are key in raising happy, healthy, gluten-free kids. Some of the highlights include giving them control of their diet from day one, always having yummy gluten-free treats on hand, reinforcing the benefits of the gluten-free lifestyle (if you need some crib notes, see Chapters 22 and 23), and remembering that they’re learning how to feel about the lifestyle from you. Promoting an optimistic outlook can instill a positive approach in them. Chapter 20 deals in detail with raising kids to love the gluten-free lifestyle. For even more inspiration and practical advice, see Gluten-Free Kids (Woodbine House), by yours truly.

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By the time your kids are pre-teens, they should be in full control of the diet. The most you can do is help them understand the diet and, just as important, the implications if they choose not to follow it. Young adults away from home at college have a huge advantage these days, as many colleges and universities now feature gluten-free menu options. Kids are flexible and resilient. Adopting a new lifestyle is usually harder for the parents than for the child.

Setting realistic expectations Some people call me PollyDanna because they think I have an unrealistically optimistic view of the gluten-free lifestyle. It may be optimistic, but it’s not unrealistic. Setting reasonable expectations for what life will be like after you adopt a glutenfree lifestyle is important because you will encounter challenges and you need to prepare to handle them well. Friends, family, and loved ones may not understand. They may not accommodate your diet when you hope or expect they will. You may find social events to be overwhelming at first, or you may get confused or frustrated and feel like giving up on the diet. You can overcome these trials and emerge stronger for them. This book is the resource you need — wade your way through it, and dogear the pages you want to come back to when you need some practical or emotional reminders for how to deal with difficult issues. If you have an optimistic but realistic approach, you’ll encounter fewer obstacles along the way.

Arming yourself with good information The good news is that because the gluten-free diet is exploding in popularity, you can find lots of information about it. The bad news is that not all of that information is accurate. Be leery of what you hear and read and check the reliability of the source on everything. If you find conflicting information — and you will — dig deeper until you find out which source is right. I talk more about discerning between credible information and not-so credible in Chapters  4 and  7. Especially in today’s world of “I read it online so it must be true,” you need to keep a skeptical eye out for the good, the bad, and the completely ludicrous.

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IN THIS CHAPTER

»» Looking at allergies, sensitivities, intolerance, and disease »» Separating fact from fiction »» Identifying associated conditions »» Understanding how gluten affects the body as well as behavior »» Recognizing the relationship between gluten and women’s health

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Going Gluten-Free: Should You Be?

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o you’ve given up — or are considering giving up — gluten. You’re definitely not alone. Millions of people are going gluten-free for a variety of reasons, and most of these individuals are seeing dramatic improvements in their health. The bottom line is that gluten doesn’t sit well with a lot of people. That’s because many (some even say most) people have some form of gluten sensitivity or an associated condition that benefits from eliminating gluten in the diet. So you’re thinking, “What exactly does that mean, and can I or can’t I eat an old-fashioned gluten-laden pizza?” Ah, you want to cut to the chase! There’s not always an easy answer to either one of those questions. This chapter explains different types of gluten intolerance, how gluten can affect your body and your behavior, and what other conditions may benefit from going gluten-free.

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Inspecting the Gluten-Sensitivity Spectrum If you’re like most people, you’re considering giving up gluten for one of the following reasons:

»» A medical professional told you that you have to; your health will improve if you do.

»» You haven’t been to any doctors, but you suspect you’ll feel better on a gluten-free diet.

»» You or your child has behavioral issues, and you believe a gluten-free diet will help.

»» The Internet says you should. »» You assume it’s healthier. »» You think you’ll lose weight if you do. »» You think it’s chic. Which group you fall into doesn’t matter much — you may very well feel better if you give up gluten. But it’s not necessarily healthier (gluten-free junk food is still junk food), and it’s not necessarily a route to losing weight (gluten-free junk food is still junk food). As for being chic, as the cool kids say these days, “yeah, no.” It may be trendy, but typically it’s trendy for all the wrong reasons. Not being properly tested for celiac disease doesn’t mean you don’t have it. Many people tell me they’re going gluten-free, but start with the caveat, “I don’t have celiac disease, but I feel better when I don’t eat gluten.” When I ask how they know they don’t have it, they give a myriad of reasons: I just know I don’t. No one in my family has it. I was tested years ago and was negative. None of those are valid reasons to conclude you don’t have celiac disease. You can find out more in the testing section of Chapter 3. Whatever the reason, if gluten makes you feel bad, you likely have some form of gluten sensitivity. Gluten sensitivity is a physical sensitivity to gluten — hence the clever name. It’s not easy to define because these sensitivities come in a variety of forms. Think of gluten sensitivities as falling somewhere on a spectrum, ranging from allergy to disease (see Figure  2-1). Don’t let the word spectrum fool you, though. It’s not a case of going from less severe to more severe; the types of sensitivities are just different.

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FIGURE 2-1:

The glutensensitivity spectrum. © John Wiley & Sons, Inc.

The following sections examine the spectrum in greater detail, starting with allergies to gluten, gluten sensitivity, and celiac disease.

At one end: Allergies Technically, there’s no such a thing as an allergy to gluten, but a person can have allergies to foods or ingredients that contain gluten: wheat, rye, and barley. In fact, wheat is one of the most common allergens, affecting millions of people. These allergies are just like other typical food allergies — the same as an allergy to strawberries or shellfish, for example. They’re all responses to a food allergen, and the reaction that someone has to those foods varies from person to person and from one food to another. Testing for wheat allergies can be tricky, especially because wheat is found in so many foods, and discerning what is creating the allergic reaction can be tough. Tests may include skin-prick or blood tests, and they typically involve keeping a food diary and embarking upon an elimination diet. Food allergies are called IgE-mediated responses to foods. Basically, that phrase simply means that the immune system is overreacting to a food, treating it as a foreign invader. IgE just designates a class of immunoglobulin. Immunoglobulins are proteins that the body makes to help fight against perceived threats. IgE’s main evolutionary role has been to protect the body against parasites, but it also fights other bad guys, which is what it’s doing when you have an allergic reaction to food. The body creates a specific variation of IgE antibody for each allergen it encounters. Allergic symptoms can be respiratory, causing coughing, nasal congestion, sneezing, throat tightness, and even asthma. Acute allergic reactions to food usually start in the mouth, with tingling, itching, a metallic taste, and swelling of the tongue and throat. Sometimes symptoms crop up farther down the intestinal tract, causing abdominal pain, muscle spasms, vomiting, and diarrhea.

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Any severe and acute allergic reaction also has the potential to be life threatening, causing anaphylaxis. Anaphylaxis  — or anaphylactic shock  — affects different organs, and symptoms can include a tingling sensation, swelling in the mouth or throat, and a metallic taste. Other symptoms can include a feeling of agitation, hives, breathing problems, a drop in blood pressure, and fainting. Anaphylaxis can sometimes be fatal unless the person having the allergic reaction receives an epinephrine (adrenaline) injection.

Somewhere in the middle: Gluten sensitivity and intolerance The spectrum isn’t defined by the severity of symptoms. You go from allergies into an ambiguous area that a lot of people call sensitivity or intolerance, or nonceliac gluten sensitivity (NCGS), and then to celiac disease. Often used interchangeably, the terms sensitivity and intolerance basically mean that your body doesn’t react well to a particular food and you should avoid it. Notice that I said should, not must, which is how it differs significantly from celiac disease or other autoimmune conditions. What is clear is that people who fall into this area have a response to gluten very similar to a celiac response, yet if tested by biopsy, they don’t have the villous atrophy seen in celiac disease. So do they have celiac disease? Maybe. Here’s where things get fuzzy:

»» Some people who are diagnosed with gluten sensitivity actually have celiac disease, but their testing was done improperly or was insufficient to yield conclusive results.

»» Other people may not have celiac disease — yet — but if they continue to eat gluten, they may develop it (a condition in its early stages like this is sometimes referred to as subclinical celiac disease).

»» Still other people may not have celiac disease and may never get it. But they

do have a sensitivity to gluten, and their health improves on a gluten-free diet. Some people believe this includes a huge segment of the population.

»» Some people have an associated condition such as an autoimmune disease

that improves on a gluten-free diet. In a sense, these people have a form of gluten sensitivity because eliminating gluten from the diet results in improved health.

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In many cases people don’t get a definitive diagnosis for gluten sensitivity or intolerance. Although there are tests (see Chapter 3), many, if not most, people who believe they have gluten sensitivity have never been tested or diagnosed. Symptoms of gluten sensitivity are often the same as those of celiac disease, and as with celiac disease, they usually go away or improve on a gluten-free diet. True non-celiac gluten sensitivity, though, doesn’t cause the intestinal damage and malabsorption of nutrients and micronutrients that celiac disease does. Testing can help clarify whether you have celiac disease or gluten sensitivity. Hang with me — it’s a little convoluted, but you need to understand this:

»» If you test definitively positive for celiac disease, then that’s what you have. »» But if you’re negative for celiac disease yet your symptoms go away on a gluten-free diet, you probably have some form of gluten sensitivity or you were improperly tested for celiac disease, which does happen.

When you test negative but actually have a condition, it’s called a “false negative” test result. It’s important to know that this does happen and can be dangerous. If the doctor says, “Nope, you don’t have celiac disease, go forth and eat wheat,” you could end up causing catastrophic harm to your body. I talk more about this situation in Chapter 3. Unfortunately, because protocol for defining and diagnosing NCGS isn’t well defined or commonly practiced, and medical professionals generally aren’t in agreement on or aware of gluten sensitivity in the medical community, patients are often told to ignore “inconclusive” or confusing test results and simply go back to eating their bagels and pizza. Sometimes this conclusion and “advice” can have serious and long-term deleterious ramifications on a patient’s health. Sometimes fructan, a component of fermentable oligo-, di-, and mono-saccharides and polyols (FODMAPs) can result in NCGS symptoms. In these cases, people often think gluten is the culprit, when in fact eliminating fructans is key to improved health. Chapter 8 discusses FODMAPs and fructans more.

Crossing the line: Celiac disease Somewhere along the way on this gluten-sensitivity spectrum, the ambiguous sensitivity is no longer ambiguous: You have celiac disease. Unlike gluten sensitivity, celiac disease is well defined.

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Celiac disease is a common (yet often misdiagnosed) genetic intolerance to gluten. Triggered by eating gluten, the immune system responds by attacking the gluten molecule. In doing so, it also attacks your body’s cells. This is called an autoimmune response. The disease can develop at any age, in people of any ethnicity. It results in damage to the small intestine, which can cause poor absorption of nutrients. Although the damage occurs in the gastrointestinal tract, not all symptoms are gastrointestinal in nature. In fact, symptoms are vast and varied, and they sometimes come and go, which makes diagnosis difficult. Gluten sensitivity and celiac disease are similar in many ways: symptoms, treatment, and maybe even some of the testing methods. But because gluten sensitivity hasn’t been as well defined, realize that the terms are somewhat interchangeable, and even without a diagnosis of celiac disease, much of what I address in this chapter could pertain to you. Celiac disease has a bunch of names that all mean the same thing, including sprue, celiac sprue, nontropical sprue (not to be confused with tropical sprue), glutensensitive enteropathy, Gee-Herter disease, and coeliac disease (the European spelling).

Exposing One of the Most Common Genetic Diseases of Mankind Three aspects of celiac disease make it uniquely contradictory and intriguing. These factors interrelate, inviting a closer look at this complex condition:

»» Celiac disease is extremely common but remarkably underdiagnosed. »» If undiagnosed, it can severely compromise your health. »» It’s fully treatable by diet alone. So just how common is it? Well, since you asked . . . . Occurring in approximately 1 percent of the population, celiac disease is one of the most common genetic diseases of mankind. According to the Center for Celiac Research, the numbers break down like this:

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»» As many as 1 in 133 people has celiac disease (most don’t know it). (Remember, this doesn’t even consider those who have NCGS.)

»» For people with “classic” symptoms, the incidence is 1 in 40. »» For people with parents or siblings with celiac disease, the incidence is 1 in 20. »» For people who have an aunt, uncle, grandparent, or first cousin with celiac disease, the incidence is 1 in 40.

To put these numbers in perspective, celiac disease is more common than Crohn’s disease, ulcerative colitis, multiple sclerosis, Parkinson’s disease, and cystic fibrosis combined. Check out Table 2-1 to see how celiac disease measures up.

TABLE 2-1

Incidence of Common Genetic Diseases in the United States Disease

Estimated Number of People

Celiac disease

3 million (www.celiaccenter.org)

Epilepsy

2.7 million (www.epilepsyfoundation. org)

Parkinson’s disease

1 million (Parkinson’s Disease Foundation)

Alzheimer’s disease

4.5 million (Alzheimer’s Association)

Ulcerative colitis

500,000 (Crohn’s and Colitis Foundation of America)

Crohn’s disease

500,000 (Crohn’s and Colitis Foundation of America)

Multiple sclerosis

300,000 (National Center for Health Statistics)

Cystic fibrosis

30,000 (National Institute of Diabetes & Digestive & Kidney Diseases)

Celiac disease is obviously extremely common. But gluten sensitivity NCGS is thought to be even more so. Although it’s highly controversial, some experts estimate that the majority of people have some form of gluten sensitivity. People often wonder, if celiac disease is so common, why don’t more people have it? They do! They just don’t know it yet (and may never know it) because they haven’t been properly and recently tested.

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MYTHS AND MISCONCEPTIONS Some of what I hear about celiac disease has about as much truth to it as the Loch Ness Monster legend, but without even a grainy photograph to back it up (no, you don’t catch it from potatoes). Consider some of the more common myths:

• Myth: Celiac disease is rare. • Fact: Celiac disease is one of the world’s most common genetic diseases, affecting about 1 percent of the population. On top of that, a huge percentage has gluten sensitivity, which can produce the same symptoms and possibly have the same serious repercussions as celiac disease.

• Myth: Celiac disease is a pediatric condition. • Fact: Actually, celiac disease can be triggered at any point in life and more often appears in the later years.

• Myth: Severe gastrointestinal problems, like diarrhea, are the most common symptoms.

• Fact: Most people with celiac disease don’t have any gastrointestinal symptoms, much less severe ones — their symptoms are extraintestinal, like headaches, fatigue, joint pain, depression, and an overall crummy feeling.

• Myth: After someone tests negative, they don’t need to test again. • Fact: Celiac disease can be triggered at any point in life. If it’s not active at one point, it still may activate at a later point in time.

• Myth: Someone can outgrow celiac disease. • Fact: Even though symptoms should disappear on a gluten-free diet, one doesn’t

outgrow celiac disease. It’s a lifelong condition that can be managed through diet.

Pinpointing Who Develops Celiac Disease and Why Doctors have no way to identify with certainty who will develop celiac disease. What they do know is that you need at least three parts of the puzzle to develop the condition:

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Even if you have all three, you may never develop celiac disease. You can say, though, that if you’re missing one of these three pieces, you won’t develop celiac disease (but you may still have gluten sensitivity). Celiac disease is a nondiscriminatory condition, found in all races and nationalities. It’s commonly thought to be more prevalent in people of Northern European ancestry, but that distinction is diminishing as people are becoming more diverse and intermingled. Prevalence studies do show differences in the incidence of celiac disease in different ethnicities. But those figures are skewed by the fact that some nations test more than others. Northern Europe, for instance, has been way ahead of the United States in its awareness of celiac disease for decades. Testing has been far more comprehensive, which may explain why that region reports more people with the disease. Northern Europe doesn’t necessarily have more affected people — just more people have been diagnosed. Numbers are also skewed because indigenous diets contain different amounts of wheat  – some societies eat little or none. Some people think that civilizations that developed between the Tigris and Euphrates rivers in the Middle East, where grain was first cultivated, have had longer to evolve to cope successfully with gluten-containing grains; the idea is that’s why the prevalence of gluten sensitivity among these people is lower. The hypothesis points out that other groups, like Germans, Scandinavians, and the Celts of England, Scotland, and Ireland, began cultivating wheat only in limited amounts in the post-Roman era. They were mostly hunter-gatherers until the Middle Ages, so those populations have had less time to adjust to gluten-containing grains.

It’s in the genes No one knows all the genes that are involved in developing celiac disease, but researchers do know of two primary players: HLA DQ2 and HLA DQ8. You don’t need to have both — just one will do — and DQ2 is the one seen most often in people with celiac disease. The DQ gene comes in different types, called alleles. Researchers have identified the combination of these alleles that results in the highest risk of developing celiac disease. This is called risk stratification, and a table in Chapter  3 shows which combination of alleles leads to the highest risk of developing the disease. But about one-third of the general population has these genes and doesn’t develop celiac disease, so knowing whether you have them is valuable if you want to rule out celiac disease. In other words, if you have the genes, you may or may not

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develop celiac disease. But if you don’t have either gene, there’s a 99 percent chance that you won’t develop celiac disease (which has always left me wondering about that 1 percent!). Keep in mind also that if you don’t have these genes, you can still have nonceliac gluten sensitivity. Celiac disease isn’t dominant or recessive — it’s multifactorial or multigenic, meaning that several different types of genes play a part in the development of the condition.

Triggering celiac disease: What turns it on People use the word trigger in two ways when they talk about celiac disease. The first refers to gluten being the trigger for initiating a response of the body’s immune system (you can delve into that more deeply in the next section). The type of trigger I’m talking about here is an environmental trigger that flips a switch, so to speak, launching celiac disease into an active mode. Most people have a pretty clear idea of when their celiac disease was triggered, because in many cases they’re relatively healthy, and then boom! Their symptoms appear “out of the blue,” and they have no idea why. Common triggers include the following:

»» Pregnancy »» Surgery »» Car accident or other physical injury »» Divorce, job loss, death in the family, or emotional trauma »» Illness

What it does to the body Celiac disease is an autoimmune disease (a disease in which the immune system attacks the body) that gets activated when someone with the predisposition eats gluten. To help you understand exactly what damage is being done, I review just a tinge of basic human anatomy, specifically focusing on the gastrointestinal tract. I keep it brief and easy to understand, and I promise there won’t be a pop quiz. Some people think that because celiac disease is an autoimmune disease, someone with celiac disease has a compromised immune system. Not at all! In fact, the opposite is true — the immune system in people with celiac disease is working overtime to fight what it perceives to be bad guys — like gluten.

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How your guts are supposed to work You’ve got guts, but do you know how they work? I can help here. Skipping approximately dozens of important steps, I start my explanation in the upper part of the small intestine. The food has already been chewed, swallowed, passed through the stomach, and broken down by enzymes into nutrients that the body can use to nourish itself. The small intestine is lined with hair-like projections called villi. The purpose of the villi, shown in Figure  2-2, is to increase the surface area of the intestine so they have more room to absorb important nutrients.

FIGURE 2-2:

The villi of the small intestine. © John Wiley & Sons, Inc.

The lining of the small intestine is basically a solid wall. All the cells on the lining are joined by tight junctions. When the body is ready to absorb the nutrients, these tight junctions open the space between cells and let the good stuff in — but keep the bigger bad stuff, like toxins, out. How do the tight junctions know how far to open? They have a comrade-in-arms named zonulin. Zonulin is a protein — its job is to be a gatekeeper, opening the tight junctions just enough to let in the good stuff but keep out the bad stuff.

How your guts work with celiac disease When someone with celiac disease eats gluten, everything’s going along just fine until the gluten reaches the small intestine.

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The first thing that goes wrong at this point is that wheat causes the body — in all humans, not just celiacs — to produce too much zonulin. This excess of zonulin causes the junctions between cells in the small intestine to open too much, and next thing you know, there’s a party in the bloodstream and all sorts of things can get into the bloodstream that shouldn’t be there — things like toxins and gluten fragments. When stuff leaks through the intestinal wall that normally shouldn’t be able to, it results in a condition called leaky gut syndrome. So now, thanks to the excess of zonulin that was released because the person ate gluten, the gluten fragment has made its way into the bloodstream. In people with celiac disease, the body sees gluten fragments as invaders — toxins that shouldn’t be there. So it launches an all-out attack against these invaders, but — and here’s why celiac disease is called an autoimmune response — the body also attacks itself. An autoimmune disease is one in which the body’s immune system produces antibodies that react against normal, healthy tissue (rather than against bacteria or viruses), causing inflammation and damage. Celiac disease is unique because it’s the only autoimmune disease for which people know the trigger that sets off the response. A survey from the American Autoimmune Related Diseases Association found that 45 percent of people eventually diagnosed with an autoimmune disease were initially labeled as hypochondriacs because doctors thought they were imagining their symptoms. Specifically, the body attacks the villi on the lining of the small intestine. As the villi get chopped down — blunted is the technical term — they can no longer be as effective in absorbing nutrients. That’s why you see malabsorption (poor nutrient absorption) and nutritional deficiencies in people with celiac disease who still eat gluten. Because the food is just passing through without being absorbed the way it’s supposed to be, you sometimes see diarrhea. But think about this: The small intestine is nearly 22 feet long, and damage from celiac disease starts at the upper part — so there’s lots of small intestine to compensate for the damaged part that’s not able to do its job. By the time you have diarrhea, you’re usually a very sick puppy.

Scratching the Surface of Dermatitis Herpetiformis Okay, that heading was funny only to me, I’m sure. Dermatitis herpetiformis (I refer to it as DH from now on) is a severe, itchy, blistering skin condition often referred to as being related to celiac disease. It’s actually not just related, though — it’s

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celiac disease. About 1 percent of people with celiac disease have DH.  Everyone with DH has celiac disease (but not the other way around). Their symptoms are usually just external — on the skin — but about 20 percent of people with DH also have intestinal symptoms. A gluten-free diet improves and sometimes completely clears up the condition. Usually, the rash starts as groups of red bumps with tiny blisters on top, but they itch so intensely that people usually scratch them to the point of opening the blisters, which then crust over. They occur commonly on the elbows, knees, butt, back of the neck, and scalp, but can also be on the face, trunk, and other parts of the arms and legs. They’re usually found symmetrically or bilaterally, meaning that if one arm has it, the other one does, too. Having DH can make you more susceptible to developing other skin problems, such as psoriasis and hives. To diagnose DH, doctors take a biopsy of the skin near (but not in) the lesion. The process isn’t painful because doctors can use a local anesthetic to numb the site. They’re looking for an antibody called IgA (I talk more about IgA in Chapter 3), and if they see it, they make a diagnosis of DH. Blood screenings can confirm the diagnosis and help doctors monitor progress on a gluten-free diet, but an intestinal biopsy usually isn’t necessary. Treatment is a strict gluten-free diet. Sometimes doctors put DH patients on sulfa-based medications such as dapsone or sulfapyridine, but doctors must first test for enzymes to avoid toxicity problems from taking the drug. Ideally, patients can decrease their use of medications as they heal on the gluten-free diet. If the gluten-free diet isn’t helping, you may need to avoid other foods and chemicals as well. Iodine can present a problem, and it’s found in shellfish and table salt. Kelp (found in some toothpastes and in some oriental foods) and potassium iodide (used as an expectorant in cough medications) may present a problem, as may nonsteroidal anti-inflammatory agents (NSAIDS), found in over-the-counter pain and fever medications. The name for DH comes from dermatitis, meaning “inflammation of the skin,” and herpetiformis, because it looks similar to herpes, which involves clusters of lesions. Some people have made the erroneous assumption that DH is caused by the herpes virus, but there’s actually no relationship to the herpes virus at all.

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GLUTEN SENSITIVITY AND AUTISM AND BEHAVIORAL DISORDERS Another type of gluten sensitivity is related to autism and other disorders on the pervasive developmental disorder-not otherwise specified (PDD-NOS) spectrum. A lot of the details about the hows and whys are still being debated and researched, but noteworthy here is the fact that the gluten-free diet, typically combined with a casein-free diet, seems to have some role in improving these behavioral disorders. Chapter 5 explores this further.

Identifying Associated Conditions That Benefit from a GF Diet A number of medical conditions appear to benefit from a gluten-free diet, most notably autoimmune diseases. I refer to these in Chapter 3 as “symptoms” because often one autoimmune disease will lead to another. If gluten is a culprit, such as is the case with celiac disease, eliminating gluten may prevent you from developing other associated autoimmune diseases. To think of it the other way around, if you have rheumatoid arthritis, which is an associated condition, it may be a symptom of celiac disease, and further testing may be warranted. Some of the autoimmune diseases that are most commonly recognized to benefit from a gluten-free diet include Hashimoto’s, Addison’s, Kawasaki’s disease, psoriasis, multiple sclerosis, Type I diabetes, rheumatologic diseases (for example, rheumatoid arthritis), Sjögren’s syndrome, scleroderma, systemic lupus erythematosus, and ankylosing spondylitis. Associated neurological conditions, including epilepsy, ataxia, neuropathy, and seizures, also happen. Non-autoimmune conditions such as fibromyalgia may also improve on a gluten-free diet. Done in a healthful manner, a gluten-free diet may also improve cholesterol and risk of heart disease and stroke. In a healthful manner, a gluten-free diet may reduce markers of inflammation, as many of the processed foods loaded with gluten are acidic and inflammatory in nature. Type 1 diabetes and celiac disease often go hand in hand. About 6 percent of people with Type 1 diabetes have celiac disease, but many don’t know it. People with celiac disease and Type 1 diabetes often find managing blood-sugar levels is much easier on the gluten-free diet. Chapter  8 discusses blood-sugar regulation in detail.

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FINDING THE FUN IN FARTS If you’re either (a) 9 years old or under, or (b) male, you’re probably snickering at the word itself. Fart. Flatus. Gas. Tooties. Few words are funnier, and few subjects evoke a response like the subject of flatulence. Either the topic makes you blush, squirm, and deny that your body has ever succumbed to the urge, or you’re one of the flagrant farters, generally of the male persuasion, who for some reason feels the need to lift buns and announce, “Fire in the hole!” before each one, and then boasts of the intensity and duration, time after time, as though each and every one is glorious in its own right. Whichever category you fall into, you do, whether you want to admit it or not, pass gas from time to time. Passing gas is a normal bodily function. Gas is produced in the gut as a result of bacterial fermentation and as a by-product of food interacting with digestive juices. Some people argue that passing gas produces no healthy benefits, whereas others believe that it aids in digestion by repositioning the bowels. Certainly few would deny that it feels better after the deed is done. You’ve heard the expression “gas bag.” Well, some people are gassier than others. The amount of gas depends upon how much air is swallowed, the composition of the diet, and the bacteria and microorganisms found in the gut. People who have issues with gluten and continue to eat it tend to be quite flatogenic. They fart a lot. They do so because their body isn’t properly digesting or fully absorbing the food. Undigested food is a banquet for bacteria. Like all living organisms, bacteria excrete waste after they eat, and their waste product takes the form of various gases. Excessive gas is also often an indicator of malabsorption, leaky gut syndrome, and/or inflammation of the gastrointestinal tract. Undigested food and bacterial imbalances and overgrowth result in excess gases that are eventually emitted in the stinkiest of forms. The main gases in the gut are nitrogen, oxygen, carbon dioxide, hydrogen, methane, and sulfur-containing gases. The particularly disgusting odor emitted by gluten-intolerant people comes from the methane- or sulfur-containing gases produced by bacterial fermentation. You can control gas. Activated charcoal, which is, as its name implies, burned wood, has been used for thousands of years to treat a variety of diseases, including excessive and smelly gut gas. It binds these gut gases and affords some symptomatic benefit for excessive, smelly gas. Peppermint, fennel, caraway, and ginger can also help relieve gas, as can some other over-the-counter treatments. By the way, both Hippocrates and Roman Emperor Claudius were fans of letting farts fly. Claudius is quoted as proclaiming, “All Roman citizens shall be allowed to pass gas whenever necessary.” When in Rome . . .

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The earlier in life you go on a gluten-free diet, the lower your risk of developing associated conditions. And sometimes symptoms of other autoimmune diseases, like multiple sclerosis, improve on a gluten-free diet.

Connecting Women’s Health and Gluten Several connections exist between gluten and women’s health, the first of which is that women are far more prone to developing autoimmune diseases such as celiac disease. As is the case with many scientific issues, there’s the issue of the chicken or the egg where many conditions are concerned. For instance, bone density is often compromised in people with untreated celiac disease, and at the same time, risk of osteopenia or osteoporosis is already greater in women. Someone with bone-density issues should consider gluten-related disorders, and people with gluten-related disorders should be aware that bone density may be compromised. Other conditions more common in women that may be related to gluten include depression and anxiety, iron-deficiency anemia, chronic fatigue, and other autoimmune disorders. Celiac disease has been shown to be related to infertility, spontaneous abortions, menstrual problems, early onset menopause, and in pregnant women intrauterine growth retardation (abnormally slow growth of the fetus) (few similar studies have been done for NCGS). Women are more susceptible to autoimmune diseases, but less susceptible to infectious diseases. In arriving at these conclusions, one must consider selection bias, which refers to how conclusions can be made erroneously when people opt into a study. The fact that because women tend to use health services more than men means from the get-go there will be an assumption that women are more likely to develop a certain condition only because they’re more likely to go to the doctor and be diagnosed. Another look at why women are more susceptible to autoimmune diseases points to the fact that women have two X chromosomes, whereas men only have one. The X chromosome plays an important role in the development of autoimmunity. This topic is too technical for this book.

Focusing on fertility The incidence of celiac disease in women with unexplained infertility has been estimated to be somewhere between 1 and 10 percent, the latter statistic being far higher than the general population. In fact, unexplained fertility may be

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considered a symptom of celiac disease (sometimes the only symptom), warranting testing. In many of those cases, a gluten-free diet restores fertility. Furthermore, some research shows that women with fertility issues test positive for celiac disease–related antibodies at a rate as high as ten times higher than that of the general population. If you’ve had fertility problems and you’re trying to become pregnant, talk with your healthcare professional to determine whether you have celiac disease or gluten sensitivity; if you do, optimize your chances of getting pregnant and having a healthy pregnancy by adhering to a strict glutenfree diet right away. Hey guys, you’re not off the hook here! Although most studies of infertility and celiac disease focus on women, some have looked at men with celiac disease. Turns out that men with celiac disease may have some form of gonadal dysfunction, which could affect fertility. As is often the case with infertile women, men with celiac disease who comply with a gluten-free diet often see improvement, specifically when it comes to sperm morphology and mobility/motility issues.

Promoting a healthy pregnancy Most studies on gluten-related disorders have focused on celiac disease and not so much on NCGS. That’s also true for research concerning pregnancy, although the gist and counsel that I recommend in this book is the same. Pregnancy is one of the events that can trigger celiac disease to kick into gear (refer to the section, “Triggering celiac disease: What turns it on,” earlier in this chapter for more information about triggers). If you’re confirmed to have celiac disease, staying gluten-free before and throughout your pregnancy is imperative. You and your fetus could face serious consequences if you cheat — or, sadly, if you’re unaware that you have celiac disease and eat a gluten-containing diet. A high percentage of women  — one study cites 85 percent  — miscarry before they’re diagnosed. Pregnant women who eat gluten may be at risk for miscarriage, preterm labor, low birth weight, and even stillbirths or congenital defects. Folic acid deficiency resulting from a lack of proper absorption of nutrients due to undiagnosed or untreated celiac disease during crucial parts of the embryo’s development can result in spina bifida. Nutrition is always important — whether you’re pregnant or not — but if you’re pregnant and have celiac disease, and especially if you’re newly diagnosed, make sure you pay particular attention to the nutritional value of your meals and supplements. I say, “especially if you’re newly diagnosed,” because your ability to absorb important nutrients was likely compromised before going gluten-free, and your body may not be as perfectly prepared to house a fetus as you want it to be.

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Vitamins A, D, E, and K are fat-soluble vitamins that are absorbed in the area most affected by celiac disease, so be sure to talk with your healthcare providers about making sure you’re supplementing properly before, during, and after your pregnancy. Throughout your pregnancy, focus on iron (vitamin C will help to absorb it), folic acid, calcium, vitamin D, magnesium, and omega-3s.

Reducing the chance that your baby develops celiac disease For years scientists have been studying whether a mother can protect her baby from developing celiac disease later in life. The research has revolved around babies at risk for developing celiac disease (first-degree relatives confirmed to have it), and has questioned if there are better times to introduce gluten and limit exposure amounts, and whether or not breastfeeding would have an influence. A first-degree relative is a biological parent or sibling. Because the research is so contradictory and not yet conclusive, I recommend you discuss with your healthcare provider whether breastfeeding can impact the onset of celiac disease in your child. Regarding the introduction of gluten to your child’s diet, here are the three avenues that researchers are pursuing for babies at risk:

»» Delaying the introduction of gluten and whether or not introducing gluten later in the baby’s life will help stave off the onset of celiac disease.

»» Knowing when to introduce: The ideal window is 4 to 6 months. »» Introducing gluten at the age of weaning to obtain an early diagnosis:

Usually that’s around 4 to 5 months old, but unfortunately, many children don’t have a strong enough immune system to produce antibodies that would lead to proper testing — refer to Chapter 3 for more details.

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IN THIS CHAPTER

»» Wondering if gluten may be at the root of your issues »» Acknowledging celiac disease as the most common genetic disease of mankind »» Identifying the hundreds of symptoms »» Ignoring symptoms and why you shouldn’t »» Evaluating testing methods »» Interpreting test results »» Deciding what to do with your diagnosis (or lack thereof)

3

Chapter 

Sorting Out Symptoms and Considering Testing

W

hen considering gluten as problematic, most people think of gastrointestinal symptoms like diarrhea or gas and bloating. But headaches, infertility, joint pain, mood and behavioral issues, neurological disorders, and hundreds of other manifestations are on the list, too. When I’m talking with someone and they bring up a malady they have, I often find myself thinking gluten may be the culprit. Sure, some may say that’s because it’s the most tried-and-true tool in my toolbox, and I’d agree with that statement, but I’d add that the tool happens to be incredibly universal. When literally hundreds of symptoms can manifest when someone has a gluten intolerance, celiac disease, or an associated condition, it’s tough not to wonder if gluten is playing a part.

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Complicating the matter is that the symptoms don’t fit neatly into one compartment. If someone has a fever, congestion, and fatigue, you can probably name three or four likely causes (no, I’m not gonna blame gluten). But when gluten is the cause, it’s less specific in its manifestation. The list of symptoms is long and diverse, which makes it tough to pinpoint a cause. Throughout the decades of speaking and book signing events, support meetings, and doing massive amounts of research, I’ve heard from literally tens of thousands of people who describe all sorts of different symptoms associated with gluten. But these people are attending a specialty event and are therefore aware that gluten is doing them harm, so it’s not surprising to them that these vast maladies are at the root of their issues. This chapter is targeted more toward people who are wondering if gluten may, in fact, be responsible for symptoms they have. The good news is that if the answer is yes, the path to better health is clear: gluten-free’s the way to be!

Identifying Symptoms That Gluten Doesn’t Sit Well with You The symptoms I describe in this section are accepted as symptoms of celiac disease, but they’re also symptoms of non-celiac gluten sensitivity (NCGS) and other conditions that benefit from a gluten-free diet. Notice that the symptoms affect all different parts of the body. That’s because celiac disease and many other conditions are multisystemic; although in celiac disease the actual damage is occurring in the gastrointestinal tract — specifically, in the small intestine — the symptoms manifest in many different ways, in all different body parts. Gluten sensitivity, celiac disease, and gluten-related conditions have hundreds of symptoms, so I can’t list them all. The following sections give some of the more common ones, starting with the symptoms that are gastrointestinal in nature. I refer to these as symptoms of celiac disease, but remember — these symptoms are found in other conditions that benefit from a gluten-free diet as well.

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Going for the gut: Gastrointestinal symptoms Most people think the most common symptoms of celiac disease are gastrointestinal in nature — diarrhea, constipation, gas, bloating, reflux, and even vomiting. These are some of the classic — though not the most common — symptoms of celiac disease. A majority of people with celiac disease don’t have gastrointestinal symptoms (even though damage is being done to their gastrointestinal tract), making it incredibly difficult to diagnose. The classic gastrointestinal symptoms people get include the following:

»» Abdominal pain and distension »» Acid reflux »» Bloating »» Constipation »» Cramping »» Diarrhea »» Gas and flatulence »» Greasy, foul-smelling, floating stools »» Nausea »» Vomiting »» Weight loss or weight gain Many people think that people with celiac disease are skinny, even emaciated. Yet one of the symptoms of celiac disease is weight gain, and many people with untreated celiac disease are actually obese. Iron-deficiency anemia is a common symptom in people with celiac disease. It’s because the villi where iron is absorbed are blunted, and not absorbing as they should. Sometimes people will take iron supplements thinking they’ll help — but if the damage is too great, even the supplements won’t be absorbed.

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WHAT DO VILLI HAVE TO DO WITH IT? When gluten is making you sick, what your specific symptoms are doesn’t matter; even if your symptoms don’t seem to be related to your gastrointestinal tract, nasty battles are going on inside your gut. In the case of celiac disease, these symptoms affect the villi. Villi are hairlike structures that line your small intestine. The job of the villi is to increase the surface area of the small intestine so it can absorb more nutrients. Villi protrude (envision fingers sticking up) so that they have more surface area to absorb important nutrients. For people who have celiac disease, an autoimmune condition, the body sees gluten as a toxin and attacks the gluten molecule. In doing so, it also inadvertently attacks the villi, and those villi get blunted and shortened, sometimes to the extreme of becoming completely flat. This attack reduces their ability to absorb nutrients — sometimes dramatically. Blunted and flat villi can’t absorb stuff so well, so those good-for-ya nutrients just slide right by and you don’t get enough of the important vitamins, minerals, and other nutrients that are vital for good physical and emotional health. You may develop what’s called malabsorption and become poorly nourished. Sometimes it takes a while before these serious symptoms appear. That’s because adults have around 22 feet of small intestine, and while some areas are damaged, plenty of others are not, and they compensate for the damaged sites. Unfortunately, the compensation doesn’t go on forever, and if the person continues to eat gluten, serious symptoms will often appear. Don’t worry! This story has a happy ending. Your villi are tenacious little things, and when you quit eating gluten, they begin to heal right away. Before you know it, your villi grow back and absorb nutrients again, and your health is fully restored. That’s why I say, “Abstinence makes the gut grow stronger.” By the way, lactase, which is the enzyme that breaks down the sugar lactose, is produced in the tip of the villi. When the villi get blunted, sometimes your ability to digest lactose decreases and you become lactose intolerant. When you quit eating gluten and the villi heal, you’re usually able to tolerate dairy foods again.

Identifying nongastrointestinal symptoms Interestingly, although gluten sensitivity and celiac disease affect the gut, most people’s symptoms aren’t gastrointestinal in nature. People more commonly have what are called extraintestinal symptoms, and the list of those is extensive,

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topping more than 250. This is only a partial listing that includes some of the more common symptoms:

»» Fatigue and weakness (often due to iron-deficiency anemia) »» Vitamin and/or mineral deficiencies »» Headaches (including migraines) »» Joint/bone pain »» Depression, anxiety, irritability, listlessness, and mood disorders »» Behavioral disorders found on the neurodivergent spectrum (for example, autism and Asperger’s)

»» Fuzzy brain or an inability to concentrate »» ADHD (impulsive/hyperactive, inattentive/distractable, and combinations) »» Infertility »» Abnormal menstrual cycles, and early onset of menopause »» Dental enamel deficiencies and irregularities »» Seizures »» Ataxia (lack of coordination — clumsiness) »» Nerve damage (peripheral neuropathy) »» Respiratory problems »» Canker sores (aphthous ulcers) »» Lactose intolerance »» Eczema/psoriasis (skin conditions; not to be confused with dermatitis herpetiformis, which I talk about in Chapter 2)

»» Rosacea »» Acne »» Hashimoto’s disease, Sjögren’s syndrome, lupus erythematosus, Addison’s

disease, and other autoimmune disorders or related conditions (see Chapter 2 as well as later in this chapter for more information on associated conditions)

»» Early onset osteoporosis or osteopenia »» Hair loss (alopecia) »» Easy bruising CHAPTER 3 Sorting Out Symptoms and Considering Testing

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WHEN NO SYMPTOMS ARE A SYMPTOM Some people have no noticeable symptoms whatsoever — these people are called asymptomatic. (Truly, though, if they read the list of 250+ symptoms, I’m wondering whether they can honestly say they have none of them!) Even though they don’t feel any symptoms, though, if they have celiac disease, gluten is damaging their small intestine, which can result in nutritional deficiencies and associated conditions. Even in the absence of celiac disease, if they have a form of gluten sensitivity or an associated condition, gluten is doing damage. These people have it tough, in terms of diagnosis, treatment, and compliance. They usually get diagnosed because they have a relative who has celiac disease and they’re smart enough to know that means they should be tested, too. As for treatment, they need to be gluten-free in order to be healthy. But compliance is a challenge because it’s tough to stay motivated to give up some of your favorite foods when those foods don’t seem to make you feel bad!

»» Low blood sugar (hypoglycemia) »» Muscle cramping »» Nosebleeds »» Swelling and inflammation »» Night blindness

Spotting symptoms in kids Young kids who have celiac disease tend to have the classic gastrointestinal symptoms of diarrhea or constipation. Although kids often have classic gastrointestinal symptoms, here are other symptoms to look for:

»» Abdominal pain and distension »» ADHD (all forms) or neurodivergent and autistic-type behaviors (I go into more detail on these behaviors and their connection to gluten in Chapter 5)

»» Apthous ulcers (canker sores) »» Delayed onset of puberty »» Failure to thrive (in infants and toddlers) »» Inability to concentrate 46

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»» Irritability »» Nosebleeds »» Short stature or delayed growth »» Weak bones or bone pain

Discovering misdiagnoses and the missed diagnoses Unfortunately, getting diagnosed with celiac disease, gluten sensitivity, or gluten-related conditions can be challenging, especially in the United States, which is behind the curve compared to countries in Europe and elsewhere. In the United States, if the diagnosis ever comes, it takes an average of more than ten years after symptoms develop. But sadly, the majority are never diagnosed. Affecting at least 1 percent of the population, 3 million Americans have celiac disease, yet only 500,000 or so have been diagnosed. That number doesn’t even account for the population that has gluten sensitivity or another associated condition (not celiac disease) and may never know it. Thankfully, as awareness of celiac disease and gluten sensitivity is increasing, diagnoses are on the rise, and people are discovering improved health on a gluten-free diet. In the meantime, underdiagnosis and misdiagnosis are still big problems. Celiac disease is often cited as one of the top misdiagnosed diseases because patients are often misdiagnosed with a variety of maladies before finding out that they really have celiac disease — a condition that can be completely treated by diet. Common misdiagnoses include the following:

»» Acid reflux »» Cancer »» Chronic fatigue syndrome (CFS) »» Cystic fibrosis (a respiratory disorder) »» Diabetes »» Diverticulosis (small pouches in the colon where food gets trapped) »» Eczema or psoriasis (skin conditions) »» Fibromyalgia »» Food allergies or lactose intolerance CHAPTER 3 Sorting Out Symptoms and Considering Testing

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»» Gallbladder disease »» Inflammatory bowel disease (IBD), such as Crohn’s disease and colitis »» Irritable bowel syndrome (IBS) or spastic colon »» Lupus (or other autoimmune diseases) »» Migraines or unexplained headaches »» Pancreatic disease »» Parasites or other infection »» Psychological issues (hypochondria, depression, anxiety, or neurosis) »» Thyroid disease »» Unexplained anemia »» Unexplained infertility »» Viral infections (viral gastroenteritis)

WHY THE DIAGNOSIS IS MISSED Gluten sensitivity and celiac disease are common. They can cause severe problems if undiagnosed. Yet most people with gluten sensitivity or celiac disease go undiagnosed or misdiagnosed. Here are a few of the more common reasons doctors miss this common condition:

• Physicians aren’t exposed to it enough in medical school and residency train-

ing. Even though this condition is typically part of the general curriculum, little time is often devoted to it. During medical school is a critical period when doctors’ opinions and future practices are molded. If they don’t hear enough about it during medical school and training, they’re not likely to look for it after they graduate.

• They hear footsteps and think, “horse,” but this is a zebra. This is a common saying in med school — it’s simply saying if you don’t look for it, you won’t find it.

• Some doctors get information from drug reps, journal articles, and confer-

ences to help keep up with the latest research. Right now, there are no TV ads, and no drugs available to treat celiac disease, so no drug reps are strolling into the doctors’ offices and chatting it up. Nor are there enough conferences and journal articles to bring celiac disease to the forefront, where it would be more likely to get top-of-mind awareness during the testing procedures.

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• Some doctors overlook celiac disease and gluten-related conditions because a diet can fix it. I’ve had doctors ask me, “Why should we invest in curing a disease or learning more about it when it can be remedied by diet?”

• Symptoms are vast and sometimes even absent. Symptoms of gluten sensitivity and celiac disease are quite varied, affecting many different parts of the body, sometimes all at once. Some people don’t seem to have any symptoms, which makes pinpointing a cause difficult.

• Doctors may think the patients are exaggerating or that their symptoms are in their head. More than one person with celiac disease has been called neurotic or a hypochondriac because of the many and sometimes dramatic symptoms involved, including me. It makes sense. The long laundry list of symptoms may come across as being exaggeration or hysteria, when in fact the symptoms can actually be quite diverse.

• Doctors may be uncomfortable if they feel ignorant. Not knowing what’s wrong

with you is difficult for doctors, and if you come in armed with information about celiac disease and they don’t know much about it, they may feel defensive and may disregard your views and opinions as a result.

• Routine blood tests don’t pick it up. Common blood tests such as complete

blood count (CBC) and chemistry panels don’t test specifically for celiac disease or gluten sensitivity. So although a doctor is likely to order CBC and chemistry panels for patients with celiac symptoms, those panels don’t offer any hints that a patient may have celiac disease. An astute doctor, though, will see signs in these panels: Anemia; low potassium, bicarbonate, fat-soluble vitamins, and protein levels; and high liver or pancreatic enzymes are red flags for gluten sensitivity and celiac disease.

• Routine endoscopies and poorly done biopsies don’t detect celiac disease.

Some patients think they’ve been tested for celiac disease because their doctor did an endoscopy. But an endoscopy not done in the right area (duodenum) doesn’t detect celiac disease (although a perceptive doctor will see red-flag warning signs). Even if doctors do a biopsy, they may miss the diagnosis if they do the biopsy poorly, or if they don’t take enough samples, or if the results are read by someone not knowledgeable about current diagnostic procedures.

• Cost-containment in the medical field may limit testing. Unfortunately, doctors are limited in some of the testing they can do because of cost-containment measures in the healthcare industry. This limit may result in insufficient testing or no testing whatsoever.

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Note that these diagnoses are often symptoms or associated conditions. What’s a shame about these misdiagnoses is that many patients who are diagnosed with these conditions either are told nothing can be done — “Go forth and live your life in misery” — or are put on drug regimens that, by definition, have side effects. Both of these scenarios are unfortunate, especially considering that the real answer might lie simply in a dietary modification. I once talked with a woman in her 80s who was diagnosed with pancreatic cancer and given a short time to live. The end result was that she didn’t have pancreatic cancer  — she had celiac disease, and a gluten-free diet was her key to improved health.

The Lowdown on Testing Before I dive into the subject of testing, I want to make a crucial point. It’s deserving of more than a “warning,” “technical stuff,” or “remember” icon, so I’m emphasizing it at the beginning of the section on testing: A negative test result for celiac disease doesn’t mean you’ll never develop celiac disease. I can’t stress this enough. I’ve met far too many people who tell me, “I was tested as a kid,” or “I’ve already been tested and I don’t have it.” Sorry to be a happy vacuum, but you’re not out of the woods. People who have the genetic predisposition for celiac disease can develop it at any age (if they eat gluten), and if the condition hasn’t yet been triggered, it will render a negative test. But that doesn’t preclude you from developing it in the future. Testing for gluten sensitivity and celiac disease isn’t an exact science — nor do scientists agree on protocol for some of the testing procedures available today. The most widely accepted testing protocol for celiac disease includes a blood test sometimes followed by an intestinal biopsy. If someone tests negative for celiac disease, it’s possible that they have gluten sensitivity — or another condition — but keep in mind there are also false negatives, which means someone actually does have celiac disease but isn’t properly diagnosed. Some people quit eating gluten and then decide to be tested. Because results will be accurate only if you’re eating gluten, doctors will usually tell you to eat gluten before testing. This is referred to as a gluten challenge. There’s no precise guideline for exactly how much gluten you need to be eating during this challenge period, but if you eat the equivalent of about one or two pieces of gluten-containing bread a day for at least two to three months, you should have enough gluten in your system to provide a measurable response. If you have severe symptoms during that time, consult your doctor to see whether you should continue to eat gluten.

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You have to be eating gluten for an extended length of time before blood or biopsy testing. If you don’t eat gluten, or haven’t eaten it for long enough, your body may not produce enough antibodies to show up on the blood tests, and the results will seem to show that you’re negative for gluten sensitivity or celiac disease — when in fact you aren’t. Same goes for the biopsy — if you’re not eating gluten, your small intestine will be healing or healed, and the biopsy will be negative for celiac disease.

Understanding why being tested is important A lot of people tell me they’re not going to get tested. Typically they offer a few common reasons for this:

»» They “know” they have a problem with gluten, so they’ll avoid it and don’t need to be tested. I put “know” in quotation marks because I’m referring primarily to people who have never been tested.

»» They don’t want to do the gluten challenge, which I refer to in the previous

section, during which they must eat gluten for a prolonged period of time (at least three months).

»» They’ve heard there are a lot of false negatives and won’t trust the results. Even though all three are justifiable excuses, I strongly advise you to be tested if you have any suspicion that you have issues with gluten. The symptoms of celiac disease and gluten sensitivity are all over the board. If you’ve deduced that gluten is the cause, good for you for being progressive in your understanding of how gluten may be affecting you. Here are several more important reasons to be properly tested:

»» Temptation to cheat: People who aren’t properly tested have an excuse if

they want to cheat on the diet. I know several people like this who, for the most part, stick to a gluten-free (ish) lifestyle, but when it suits them, I hear as they indulge in their fourth piece of sourdough bread, “Oh I don’t think I really have anything wrong with me. I just feel better when I don’t eat gluten.” If you do have an issue, especially celiac disease, you could be doing severe damage to your body by continuing to eat gluten. You could also be setting yourself up to develop chronic disease that is not controlled by diet. Proper testing takes away the convenient excuse for an indulgence here and there, unless, of course, you want to intentionally cheat, which is something I address in the section, “Considering the Risks If You Don’t Give Up Gluten,” later in this chapter.

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»» Relatives at risk: If you have celiac disease, as opposed to NCGS or other

conditions related to gluten intolerance, all of your biological relatives should be aware because they’re at higher risk of developing it, too. Someone who has a relative with celiac disease has a 10 percent higher chance of developing it than the general population. All relatives are at risk, but first-degree relatives are at higher risk. A first-degree relative is a biological parent, sibling, or child.

»» Other conditions discovered: As much as I applaud you for being open to

the idea of gluten causing harm, gluten may not be giving you grief. You could have another, possibly more serious, condition, and finding out you don’t have celiac disease or gluten sensitivity should lead to further investigation. At the same time, testing may reveal that you do have celiac disease or a sensitivity, but it may also reveal other or associated conditions.

»» School accommodation: Because celiac disease is considered a disability

under the Americans with Disabilities Act, schools may accommodate a gluten-free diet. Signed documentation and proof of a formal diagnosis are typically required.

Recognizing who should be tested If you have any of the symptoms listed in this chapter, you should be tested regardless of family history. Keep in mind that the list of symptoms is long, often with misdiagnoses. If you’re diagnosed with a different condition and treatment isn’t helping, or worse yet if that other condition doesn’t have treatment, be persistent in your pursuit of proper testing for gluten issues. With or without symptoms, you should be tested if you have associated autoimmune conditions such as Type 1 Diabetes, Hashimoto’s, autoimmune liver disease, Down syndrome, and others (see Chapter 2). Also with or without symptoms, consider being tested if you have a first-degree relative with celiac disease. Your risk is significantly higher of developing celiac disease if someone in your family has it, especially a first-degree relative. Young children often don’t make strong enough antibody responses to prove consistently reliable on most of the blood tests. Children 3 years and older can be tested properly, but younger kids may need a different type of evaluation, such as intestinal biopsy. Deamidated gliadin peptide IgA and IgG are more reliable than other blood tests in young children (see the next section).

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Testing for NCGS Unfortunately, although there are tests for sensitivities to individual foods, there’s no definitive test for NCGS. Basically, the logic goes like this: You tested negative for celiac disease and allergies to wheat and other gluten-containing grains, so you can rule those out. However, when you eat gluten, you feel icky, and when you eliminate it you feel better; therefore, gluten is causing you problems. That would be a strong indication (really more of a conclusion than a diagnosis) that you have NCGS. Tests to arrive at a diagnosis are different than tests to monitor a celiac’s compliance to a gluten-free diet. In other words, if you have celiac disease and gluten is sneaking into your diet, you can discover your noncompliance with a blood test. The blood test you would do for compliance is tTG, which I cover in the next section.

Explaining the blood tests available today These blood tests will only be reliable if you’re eating gluten for a prolonged period before testing. The tests I talk about in this section are specific to celiac disease because there are no specific biomarkers (yet!) for NCGS. Blood tests — also called serological tests — look for antibodies that the body produces when someone with a sensitivity or celiac disease eats gluten. That’s why you have to be eating gluten to get a reliable result — if you’re not eating gluten, you won’t be producing the antibodies to fight it. Blood tests have varying degrees of sensitivity and specificity:

»» Sensitivity refers to how often the test correctly identifies someone who has the condition.

»» Specificity refers to how often it correctly identifies someone who doesn’t have a specific condition.

Blood tests alone aren’t the gold standard for testing for celiac disease. The gold standard is to start with a blood test (tTG). If that’s positive (or even if it’s negative and there’s a strong suspicion of celiac disease), it should be followed up by an endoscopy.

Identifying the five blood tests The most comprehensive panel of blood tests that you can get for celiac disease includes five tests for antibodies. In a perfect world, the first five listed here should all be done in order to get a complete picture. For instance, if someone is

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IgA deficient, all of the IgA-based tests listed here will be falsely low. That’s why a Total Serum IgA test is crucial. If you’re only going to do one, start with tTG:

»» tTG (anti-tissue transglutaminase)-IgA: This test is very specific to celiac

disease and is a must if you’re doing testing. Being specific to celiac disease means that if you have a positive tTG, it’s very likely that you have celiac disease and not another condition. This test is positive in about 98 percent of people with celiac disease.

»» Total serum IgA (total serum, immunoglobulin A): A significant portion of

the population is IgA-deficient, meaning their IgA production is always lower than normal. Four of the five tests listed in this section are IgA-based (the only one that isn’t IgA-based is antigliadin IgG), so if someone is IgA-deficient, results of those three tests would be falsely low. By measuring total serum IgA, doctors can determine whether a patient is IgA-deficient and can compensate when reading the results of the three IgA-based tests.

»» Deamidated gliadin peptide IgA and IgG: If someone is IgA deficient, this

test can be a useful diagnostic tool. Being IgA deficient may indicate another disease that’s causing villous atrophy, such as giardiasis or small-bowel bacterial overgrowth.

»» EMA (anti-endomysial antibodies)-IgA: This test has the highest specificity

for celiac disease at nearly 100 percent, making it the most specific to celiac disease. It’s not as sensitive as tTG, and about 5 to 10 percent of people with celiac disease test negative for EMA. It’s often used in combination with tTG and other tests.

»» AGA (antigliadin antibodies)-IgA: The antigliadin tests are less specific for

celiac disease, and these antibodies sometimes show up in other diseases (including gluten sensitivity). AGA-IgA is useful when testing young symptomatic children who don’t always produce enough tTG or EMA for diagnostic purposes. AGA-IgA is also useful for monitoring compliance on the gluten-free diet (if it’s still elevated after you’ve been gluten-free for several months, gluten may be sneaking into your diet). Some people feel that a positive AGA-IgA indicates gluten sensitivity.

»» AGA (antigliadin antibodies)-IgG: This is another antigliadin test and is less

specific to celiac disease, but it may be useful in detecting gluten sensitivity or leaky gut syndrome. Also, if the IgG levels are highly positive and all the other tests are negative, that may signal that the patient is IgA-deficient, in which case the results of the other tests are erroneous.

If the lab won’t do all the tests, have them do the tTG IgA and total serum IgA.

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Grasping how the tests are performed For all of these tests, any lab can draw the blood, as long as you have an order from a doctor, registered nurse, chiropractor, or other healthcare provider allowed to order blood draws. Some of these tests are even available in at-home tests, but make sure the at-home test is doing at least tTG IgA and total serum IgA. The lab technicians can get the blood they need for all five of the tests with a single blood draw, which means they have to insert the needle just once to fill the vials. Your results are sent to the healthcare provider who ordered the blood draw, and although each lab takes a different amount of time to process the results, most take about two weeks. As hard as they try, some people who think they’re following a strict gluten-free diet discover that gluten is sneaking in. One study showed that 69 percent of people who thought they were complying with the lifestyle actually had gluten in their system. That’s why follow-up antibody testing can be important. Most doctors recommend a follow-up blood test (tTG IgA) six months or a year after a diagnosis of celiac disease (and, presumably, after going on a strict gluten-free diet). If tTG antibodies are still elevated at that time, you’ll need to take a closer look at your diet to see what the culprit might be. If one or more of these tests are positive, the results may indicate celiac disease or gluten sensitivity. Your doctor will probably want to do an intestinal biopsy to confirm the diagnosis (you can find more information on biopsies in the section, “Getting a biopsy,” later in this chapter).

Evaluating with other more general blood tests Asking your healthcare provider to do some other blood tests to evaluate the severity of the disease and the extent of your malnutrition, malabsorption, and organ involvement is important. Healthcare providers may test for the following:

»» CBC (complete blood count): To look for anemia and other vitamin/ mineral/ enzyme deficiencies

»» ESR (erythrocyte sedimentation rate): To evaluate inflammation »» CRP (C-reactive protein): To evaluate inflammation »» CMP (complete metabolic panel): To determine electrolyte, protein, and calcium levels, as well as to verify the status of the kidney and liver

»» Vitamins D, E, and B12 levels: To measure for vitamin deficiencies »» Stool fat levels: To help evaluate malabsorption

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These tests may be important, although they don’t diagnose gluten sensitivity or celiac disease. If you test negative and still have symptoms, consult your healthcare provider and delve a little deeper. It could be a false negative or another condition.

Getting a biopsy In the olden days, the only way to diagnose celiac disease was to do not one, not two, but three biopsies of the small intestine. That’s how my son was ultimately diagnosed because no blood tests were available at that time. Today biopsies are still considered the gold standard for diagnosing celiac disease, but thanks to the accuracy of blood tests, usually only one is required. When doctors do a biopsy, they do it by way of an endoscopy. They put a tube down your throat to the small intestine and then clip samples of the villi, hairlike structures on the lining of the small intestine. In a nearby sidebar, I explain that when people with celiac disease eat gluten, the body launches an attack and ends up turning on itself, blunting the villi. The biopsy determines how much blunting, if any, has occurred. The endoscopy and the clipping of the villi aren’t painful, and for adults the procedure doesn’t require a general anesthetic. The doctor, a gastroenterologist, sprays your throat with some numbing medication and gives you pain-killing medications and a sedative that makes most people tired enough that they sleep through the procedure. Then the doctor inserts a tube through the mouth into the esophagus, to the stomach, and finally to the small intestine. Some people have some mild discomfort when the tube is inserted into their throat, and sometimes people have a mild sore throat after the procedure. Biopsy results are categorized into what pathologists refer to as Marsh Classifications. Marsh 0 is a normal mucosa, meaning the villi are healthy and doing their job absorbing nutrients. Marsh I, II, and III describe the degree of flattening of the villi as they become damaged by the response to gluten (see “What do villi have to do with it?” in this chapter). These days Marsh III lesions, the areas that are completely flattened, are subdivided into a, b, and c categories. Flattened mucosa doesn’t happen all at once  — it evolves. And one area of the intestine may have more damage than another, which is why it’s important that several samples are taken. Interpreting the results, meaning to assign a Marsh classification, can be somewhat subjective.

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Many patients have told me that their healthcare provider ordered a colonoscopy to test for celiac disease. A colonoscopy isn’t a test for celiac disease (it’s the wrong end of the body). If your healthcare provider orders a colonoscopy, it should only be to test for other conditions — if they say it’s to test for celiac disease, ask more questions to make sure you’re both understanding the testing procedures. As with the blood test, you have to be eating gluten for an extended length of time for the biopsies to be accurate. Consider a few important points about a biopsy:

»» It’s an invasive procedure, so some risks are involved. Adults are usually sedated with drugs like Versed (midazolam) and Demerol (meperidine); children usually require a general anesthetic.

»» The doctor should take six to eight biopsy samples. Celiac disease can be

patchy, sometimes affecting one area but not affecting the area right next to it. Taking several samples maximizes the chance that at least one will be from an affected area, if there is one.

»» Even mild blunting can indicate damage. People used to think that, to

diagnose celiac disease, a person had to have total villous atrophy, or completely flattened or blunted villi. Today the Marsh rating system measures different degrees of damage, and even partial blunting indicates damage.

»» For the most part, doctors can’t make a diagnosis by doing an endoscopy alone. Although visual clues can indicate damage due to celiac disease, biopsies give more definitive answers.

The biopsy samples are sent to a pathologist, who then gives the results to the gastroenterologist. You should hear back from the gastroenterologist with the results of your biopsy within three to four days. Follow-up biopsies aren’t usually necessary. Sometimes doctors will want to do a follow-up biopsy if antibody levels are still high several months after starting a gluten-free diet, but that’s probably unnecessary. If antibody levels are high, it means gluten is sneaking into the diet somehow. A biopsy will only confirm that and, therefore, doesn’t offer any additional insight. However, if the doctor suspects that prolonged symptoms are caused by something other than gluten ingestion, a follow-up biopsy may be in order.

Testing in kids Kids younger than 2 years old sometimes don’t produce enough antibodies to reflect an accurate blood test. If symptoms are severe or the child has other risk

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factors such as biological relatives with the condition, you should consider doing an endoscopy on a child to ensure an accurate diagnosis. Pediatricians and parents are reticent to do an endoscopy on kids because it requires general anesthesia, whereas adults can be more lightly sedated for the endoscopy. Europe has developed a protocol that says if the tTG value is more than ten times the cutoff for the test and you have symptoms compatible with celiac disease, you can avoid the endoscopy if two additional criteria are met:

»» EMA blood test is positive. (Refer to the section, “Identifying the five blood tests,” earlier in this chapter.)

»» Genetics are compatible (see later in this section). Alessio Fasano, M.D., is one of the world’s leading celiac experts (and technical editor for this book), and highly recommends doing the endoscopy on children. He cites several reasons:

»» The blood test (tTG) is robust but not infallible, as is the reference point

for determining who is positive and who is negative. Many tests tend to be permissive in their relativity score because it would be “better” to have a false positive than a false negative.

»» Going gluten-free for a lifetime when someone is falsely diagnosed with celiac disease can be a travesty. It can be a financial or practical burden as well as a social or psychological one.

»» The actual risk of doing an endoscopy is low — yet the risk of a misdiagnosis is higher.

When a drug is developed, more than likely insurance won’t cover it unless you have a biopsy-proven diagnosis.

Undergoing other tests Here are a few other tests that you should be aware of:

»» Video capsule endoscopy (VCE): VCE is a procedure that uses a tiny wireless

camera to take pictures of your small intestine. You swallow a capsule about the size of a camera, and it takes thousands of pictures of your digestive tract. This is a non-invasive alternative to an endoscopy, but it’s only 89 percent sensitive and 95 percent specific for celiac disease. It may be useful in detecting complications associated with celiac disease.

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»» Intestinal fatty acid binding protein (I-FABP): Intestinal fatty acid proteins

can indicate intestinal damage. I-FABP is a specific protein that’s released into the system and may indicate gluten intake.

»» CT scan (radiology): A CT scan is a relatively new path for the diagnosis of

celiac disease. At the risk of getting too technical, the CT scan can detect specific fold patterns in the small intestine (jejunoileal folds), which are characteristic of celiac disease. Other scan findings that can lead to a diagnosis of celiac disease include the thickening of the bowel wall, dilation of the bowel loops, intestinal blockage, atrophic spleen, enlarged lymph nodes, and mesenteric vascular engorgement.

Considering genetic tests A person needs to have three required components in order to have celiac disease:

»» They must have a genetic predisposition. Testing to see if you have the

genes for celiac disease serves a purpose for some people who are curious about their risk factor, but keep in mind that having the genes doesn’t mean that you’ll develop celiac disease.

»» They must be eating gluten. If someone never eats gluten, they will never develop celiac disease.

»» They must have some type of environmental trigger. This trigger can be a virus, surgery, stress, car accident, pregnancy, or other type of trauma to the system. Sometimes people have no idea why the condition suddenly comes on, whereas other people can pinpoint an event in their lives that seemed to have triggered it.

In addition to the genetic predisposition, the other two components are necessary. Because many people have the genes and never develop celiac disease, the test can’t be used to predict who will get celiac disease. The test can, however, rule out celiac disease because if you don’t have the genes, you don’t have celiac disease. Genetic testing can be done by blood, stool, or saliva tests, including at-home tests. Note: Unlike blood tests to determine whether or not you have celiac disease, for any type of genetic testing for celiac disease, you don’t have to be on a glutencontaining diet for results to be accurate. You can be gluten-free for any period of time, and the results will be the same. The genetics involved in celiac disease can get complicated, but they can be boiled down to two haplotypes (a group of genes that is inherited from one parent) that are responsible in about 95 percent of people with the condition: DQ2 and DQ8. As

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much as 30 percent of the general population has either or both DQ2 and DQ8, and 3 percent of them develop celiac disease. DQ2 is far more commonly found in celiac disease  — 90 percent have the condition  — whereas only 5 percent of people with celiac disease have DQ8. Table  3-1 outlines the risk of developing celiac disease based on your genetics. Note that the greatest increase in risk of developing celiac disease is for someone who is DQ2 homozygous, and that the increased risk is significant. Homozygous refers to having two identical alleles, whereas heterozygous refers to someone who has two different alleles. Someone who is DQ2 heterozygous has just one copy of that gene, whereas DQ2 homozygous means that person has two copies of the DQ2 allele (and is therefore at higher risk). Notice the highest at risk for developing celiac disease is someone who has two copies of the DQ2 haplotype.

TABLE 3-1

Risk Stratification Table

DQ Genotype

Increased Risk over General Population

Relative Risk

DQ2 homozygous

31 times

Extremely high

DQ2/other high-risk gene

16 times

Very high

DQ2/DQ8

14 times

Very high

DQ8 homozygous

10 times

High

DQ2 heterozygous

10 times

High

DQ8 heterozygous

2 times

Moderate

DQ2/other low-risk gene