Gluten Exposed: The Science Behind the Hype and How to Navigate to a Healthy, Symptom-free Life

Copyright

4th Estate

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This 4th Estate paperback edition published in 2016

First published in the US by William Morrow,

An imprint of HarperCollinsPublishers in 2016

First published in Great Britain by 4th Estate in 2016

Copyright © Peter H. R. Green, M.D., and Rory Jones, M.S. 2016

The right of Peter H. R. Green, M.D., and Rory Jones, M.S. to be identified as the authors of this work has been asserted by them in accordance with the Copyright, Design and Patents Act 1988

A catalogue record for this book is available from the British Library

Chapter 7 appeared in a different form in Celiac Disease: A Hidden Epidemic (first ed.) by Peter H. R. Green, M.D., and Rory Jones, M.S. published by William Morrow, 2006.

Designed by Lucy Albanese

Illustrations by Thom Graves

Cover image © Shutterstock

This book contains advice and information relating to health care. It should be used to supplement rather than replace the advice of your doctor or another trained health professional. If you know or suspect you have a health problem, it is recommended that you seek your GP’s advice before embarking on any medical programme or treatment. This publisher and the author accept no liability for any medical outcomes that may occur as a result of applying the methods suggested in this book.

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Source ISBN: 9780008144067

Ebook Edition © June 2016 ISBN: 9780008144050

Version: 2016-10-20

Contents

Cover

Title Page

Copyright

A Note from the Authors

Introduction

PART I: DEFINING THE PROBLEM

Chapter 1: What Is Your Source of Medical Information?

Chapter 2: Does a Gluten-Free Diet Work for You?

Chapter 3: Picky Eaters—Orthorexia and the Hygiene Hypothesis

Chapter 4: Pitfalls and Perils of a Gluten-Free Diet

Chapter 5: Supplements and Probiotics

Chapter 6: A Word on Testing—What Do Antibodies Tell Us?

PART II: WHAT IS GOING ON IN THE GUT

Chapter 7: The Normal Gut and Digestion

Chapter 8: The Gut in Disease

Chapter 9: The Microbiome

Chapter 10: The “Second Brain” in the Gut

PART III: THE FINGERS ON THE TRIGGER

Chapter 11: Gluten and Nongluten Grains

Chapter 12: Carbohydrates and FODMAPs

Chapter 13: Drugs

Chapter 14: The Double Hit Theory

Chapter 15: Inflammation

Chapter 16: Intestinal Permeability—“Leaky Gut”

PART IV: PUTTING ORDER IN THE DISORDERS

Chapter 17: Celiac Disease

Chapter 18: Gluten Sensitivity—the New Kid on the Block

Chapter 19: Irritable Bowel Syndrome

Chapter 20: Inflammatory Bowel Disease

Chapter 21: Eosinophilic Esophagitis

Chapter 22: Neuropathy

Chapter 23: Diabetes

Chapter 24: Wheat and Other Food Allergies

Chapter 25: Fibromyalgia and Chronic Fatigue Syndrome

PART V: THE BRAIN-GUT-GLUTEN CONNECTION

Chapter 26: Autism Spectrum Disorders and ADHD

Chapter 27: Schizophrenia—Revisiting “Bread Madness”

Chapter 28: Brain Fog—Neurology or Meteorology?

Chapter 29: The Stress of Holding Back

PART VI: NAVIGATING A GLUTEN-FREE LIFE

Chapter 30: Nondietary Therapies—the Drug Pipeline

Chapter 31: Eating Healthy

Chapter 32: Myths and Misconceptions

Chapter 33: Food for Thought

APPENDIX A: Diets Through the Ages

APPENDIX B: Resources

APPENDIX C: Arsenic and Mercury Guidelines

APPENDIX D: Guidelines for Eating Gluten-Free

APPENDIX E: Scientific Articles and Studies

Footnotes

Glossary

Index

Acknowledgments

About the Authors

Also by Dr. Peter H. R. Green and Rory Jones

About the Publisher

A Note from the Authors

All the information in this book is based on current scientific knowledge about the effect on the body of gluten and the many foods, drugs, and supplements that we ingest. It is derived from an in-depth analysis of current medical literature, extensive clinical experience, patient and professional interviews, as well as ongoing research into the various manifestations and conditions ascribed to gluten-related disorders.

Other medical experts may have differing opinions and interpretations of the medical literature. Wherever pertinent, the authors have attempted to note conflicting points of view on key issues as well as topics that have not as yet been scientifically resolved.

Many of the peer-reviewed articles we have consulted may not be readily accessible to all readers. For this reason, we have not included footnotes for all medical facts and figures. Instead, we have listed good basic review articles and books for different subjects in the appendices.

All references to the “Center” refer to the Celiac Disease Center at Columbia University.

NOTE: This book is not a self-diagnosis manual. It is intended to generate informed patients who know what questions to ask of their physicians and how to understand the answers.

Introduction

The fewer the facts, the stronger the opinion.

—ARNOLD H. GLASOW

Simple solutions are always appealing. In the last few years, gluten has become the ultimate villain—the Wicked Witch, Darth Vader, the Joker, and Hannibal Lecter rolled into one devouring multisystem ravager. It is blamed for draining our brain, blowing up our bellies, invading our nervous system, and setting fire to our guts. A recent bestselling book claimed that: “Brain disease can be largely prevented by the choices you make in life …” If only it were that simple.

Almost a third of all American and UK consumers are trying to avoid gluten. By any reckoning, a significant portion of the buying public is focused on the gluten in our food supply and on their plates.

Gluten is implicated in everything from heart disease, neuralgia, sore muscles, exhaustion, “brain fog,” headaches, autism, diabetes, arthritis, curious rashes, schizophrenia, dementia, weight loss, fibromyalgia, and irritable bowel syndrome to plain “it makes me feel sick-”itis. Yet most of these claims do not hold up.

In fact, it has become increasingly hard to swallow the story line written by the media as well as friends, family members, and various alternative health care professionals. The menu at this feast of confusion includes wheat and the different proteins within it, genes, germs, fungi, antibiotics, herbicides, enzymes, supplements, and anything else that travels through the intestinal tract. It is a multicourse, multisystem, increasingly nonscientific boiling pot.

Unfortunately, the food industry and general population got onto a gluten-free diet ahead of the medical community, which is now playing scientific catch-up. With the advent of the Internet, everyone has become a medical researcher. This has left room for the public to run away with ideas and point fingers at gluten as the cause for anything and everything.

Gluten has become a media-borne epidemic. But beware: pseudoscience can be hazardous to your health.

The Promise of Miracles

He took a grain of truth and made a loaf of baloney.

—ANONYMOUS

The majority of the information available about the effect of gluten on the body is only partly correct or almost wholly incorrect, and few people have the background or knowledge to question its accuracy. Most of the claims touted by TV hosts, books by “experts,” and websites featuring the words natural or doctor recommended do not withstand scrutiny.

Which is exactly what we intend to do. Starting in the gut and working up to the brain and back, we will explore the many claims, conditions, treatments, and diets to diagnose exactly what gluten does and does not cause or cure.

In 1996, Alan Greenspan, then the Federal Reserve Board chairman, used the phrase irrational exuberance as a warning that the market might be overvalued. Today, this same phrase could be used to describe the emotions surrounding gluten, which is being blamed for many of the physical as well as psychological problems people suffer from. And it is becoming increasingly scientifically clear that this focus on gluten as the culprit behind “all that ails ye” is increasingly irrational.

Gluten—the “One Size Fits All” Myth

There are in fact two things, science and opinion; the former begets knowledge, the latter ignorance.

—HIPPOCRATES

Occam’s Razor is a principle utilized in medicine stating that among competing hypotheses, the hypothesis with the fewest assumptions should be selected. It seems to account for the spate of books that point to gluten as the reason behind every pain and drain in the body.

When a patient comes to the doctor—usually with a group of symptoms—the doctor needs to isolate and evaluate each issue separately, not necessarily as manifestations of the same condition. Doctors need to care for patients as a whole, and that requires a sensitive ear as well as appropriate tests and treatments. Holistic medicine is not just about including acupuncture, behavioral therapy, and mindfulness—treatments that we recommend to some patients—but isolating, testing, and treating each patient for every individual problem they have.

It is time to look at gluten differently and offer reliable science and guidance in navigating your way to a healthier and symptom-free life.

Part I exposes the many misconceptions surrounding gluten. The gluten-free diet works for many and is necessary for those with celiac disease. We now understand a great deal more about why it works, as well as the benefits and pitfalls of a gluten-free lifestyle. For others, the diet does not work—or works only for a short period of time—and understanding the reasons for that can help you reboot your health.

Where you get your medical and health information can determine whether you are being properly diagnosed, treated, and monitored on a diet that is not necessarily healthy. This includes taking a close look at your eating habits—you may be eliminating the wrong foods or your household may simply be too clean for your own immunological good. Most exclusion diets come at a price; you should know the precise value of what you are sacrificing.

We will examine the various temporary or expedient remedies that are being prescribed, including probiotics and supplements, to expose the underbelly, as it were, of this unregulated industry. We will explain the key tests that are used to analyze nutritional issues and symptoms that are often blamed on gluten but may mean something entirely different.

Having eliminated some of the myths, in Part II we will dive into the subterranean world of your gut, its many inhabitants, and how it communicates with your brain. Four of the hottest research topics today are the brain, the microbiome, inflammation, and the food we eat, gluten in particular. We have found new and intriguing connections between them.

We begin at the mouth, where food, drugs, supplements, tobacco, alcohol, “bugs” of all types, and anything else we knowingly or inadvertently swallow enter the body and travel through the digestive tract. But this is where the story gets interesting. For many, digestion is a torturous journey that creates gas, bloating, and pain in the gut. For others, food and other ingested substances create inflammation and multisystem disorders that radiate throughout the body.

Your gastrointestinal (GI) tract is in constant communication with your brain. Much of the story is actually narrated by our brains and the “second brain,” the enteric nervous system in the gut. Thus, a dynamic interaction of multiple factors and “conversations” in the body determines not only your day-to-day but also your long-term health. In this section we will start to explore what happens when the gut talks to the brain and the brain answers back, and what each person can do to moderate this internal dialogue.

Part III examines the different elements that cause symptoms often attributed to gluten alone. This includes other portions of wheat and FODMAPs (fermentable oligosaccharides, disaccharides, monosaccharides, and polyols)—an acronym for the many dietary culprits in the carbohydrate family. Drugs, infections, and other illnesses also affect the gut-brain axis and disturb the microbiome. Many cause a “double hit”—the first infection or illness predisposing the body to a sensitivity to gluten. This will come as no surprise for anyone who has gotten turista or a traveler’s infection; the bathroom journey often continues for months after they return. A double hit may even set the stage for schizophrenia.

This takes us to the role of inflammation and the so-called leaky gut, two largely misunderstood aspects of the body’s defense system. They are blamed for many things they do not do—and implicated in others that we are just beginning to understand.

Part IV focuses on the specific conditions where gluten plays a part. Each section clarifies and explains the role and relation of diet, inflammation, antibodies, genes, germs, and gut-brain cross-talk, as well as the latest treatment options.

In Part V we look closely at the brain and separate pseudoscience from the important studies being conducted on serious and damaging conditions like autism and schizophrenia. We will look at the relation of gluten to “brain fog” and the potential long-term effects of the gluten-free diet on a person’s mind and behavior. It is becoming increasingly clear that the constant need to “hold back” when eating—one of the most normal and usually pleasurable aspects of daily living—may create additional stress on both the brain and the body. Putting yourself on a restrictive diet—any diet—may have unintended consequences on the stress circuits in your brain.

For those committed to a truly gluten-free lifestyle, finding the right balance of nutritional foods is crucial, and Part VI will help to guide you there. This section contains the latest updates on nondietary therapies for celiac disease (the pharmaceutical products being developed to supplement or eliminate the need for a gluten-free diet), as well as further thoughts on what the science about gluten means for the future of our gut-brain health.

With a growing array of gluten-free products hitting the market almost monthly, it is important to know what is safe, what is hidden, and what are some of the nongluten ingredients in these products that are worse for the body than gluten. We will look at “food glue”—processed food doesn’t grow that way—as well as the many myths that still surround a gluten-free diet.

Gluten is a piece in many medical puzzles but is the ultimate answer to only a few. We will help you determine if it is an answer to yours.

Science, my lad, is made up of mistakes, but they are mistakes which it is useful to make, because they lead little by little to the truth.

—JULES VERNE, JOURNEY TO THE CENTER OF THE EARTH

The scientific theory I like best is that the rings of Saturn are composed entirely of lost airline luggage.

—MARK RUSSELL

Some people think that the truth can be hidden with a little cover-up and decoration. But as time goes by, what is true is revealed and what is fake fades away.

—ISMAIL HANIYEH

PART I

Defining the Problem

It started with an avalanche of bad things happening. Kind of an achiness and gluey feelings in my joints all the time, and it just started to escalate. A mysterious fatigue where I just felt drugged.

The joint stuff was so bad I couldn’t walk upstairs and couldn’t roll over in bed without hurting. The final straw was when I developed vertigo, which got me to go to the doctor. I thought, I’m too young for this to be going on.

She did all these tests and scans, a neck X-ray, and everything was normal. She found “nothing wrong” with me. And yet I clearly was not functional.

Someone recommended removing things from my diet to see if it would help, and I started with wheat, dairy, sugar, and eggs. By the end of that first week I started to feel better and the vertigo went right away. It was literally like the tide going out. I was very disciplined and reintroduced each food, eggs first, then dairy, sugar, and wheat. When I reintroduced the wheat the back pain reappeared instantly.

(JILL, 50)fn1

I know a ton of people who don’t eat gluten for a variety of things—or nothing.

(ANNABELLE, 33)

The gluten hysteria is killing the credibility of people with celiac disease. Because people think it’s a fad thing, that we’re watching our weight or we think it is healthier, that we’re choosing this way of life, and they’re discounting the fact that it’s a medical illness. You’d think we’d be going in a different direction. We’ve gone a few steps back.

(ILYSSA, 39)

1

What Is Your Source of Medical Information?

Science is a way of thinking much more than it is a body of knowledge.

—CARL SAGAN

I observe the physician with the same diligence as the disease.

—JOHN DONNE

I understand that I don’t really know where I am on that gluten spectrum because I haven’t had any tests. And the other stuff is treated like hocus-pocus. So individuals draw their own wacky conclusions. I’d really like to know what a scientist thinks about it and what I should do.

(JILL, 50)

There are many sources today for health information and many reasons individuals do not go to a doctor to get it. Many people will see a doctor only in order to resolve a physical ailment that has either disrupted their life, will not resolve itself in the over-the-counter (OTC) drug aisles of the pharmacy, or because their spouse/child/friend/sister, etc. insisted that “it’s time to get to the bottom of this.” In fact, many do not see a doctor until their symptoms have seriously affected their ability to work, travel, or sleep. And even then, some arrive with a list of answers before asking the physician what they think is the matter.

When was the last time you:

 Self-diagnosed from Internet information?

 Self-treated with OTC drugs and/or diet?

 Gave a doctor a diagnosis before you were examined?

Some people self-diagnose or seek alternative practitioners when medical tests fail to reveal a cause for ongoing symptoms and/or prescribed drugs fail to cure them. And many of them accept a food-related “diagnosis” as the solution to the problem. Given the current focus on foods as cause and cure, far too many roads lead to gluten. If you are looking to prove that gluten is the cause of your physical symptoms, you will undoubtedly find ammunition to justify this conclusion. As the scientist and mathematician John Lubbock noted: “What we see depends mainly on what we are looking for.”

But if you type “gas, bloating, and fatigue” into your browser, you will find more than 90 other medical and psychiatric conditions on WebMD that cause the same symptoms. And your health depends on isolating, testing for, and treating the correct underlying condition.

My Doctor “Pooh-Poohs” Food Intolerances

When I don’t eat gluten, I feel fine; when I do eat it, I don’t. My doctor did all these tests and scans and X-rays, and everything was normal. She didn’t say “it is in your head,” but there was this long “Hmmmm. I don’t have a diagnosis, but I think it’s all about gluten.”

(NANCY, 44)

Some physicians, aware of the popularity of the gluten-free diet and the susceptibility of people to dietary trends, dismiss nonceliac food intolerances as a legitimate cause for concern. These doctors may be dismissive of symptoms and therefore not interested in getting to the root of the problem, making diagnosis more difficult.

Doctors do not rely on Internet blogs, magazine articles, or website write-ups of scientific papers. They read and analyze the papers and base their diagnoses on peer-reviewed understanding of a condition. Medicine is a plastic science—studies change the understanding of diseases and their mechanisms regularly—so doctors treat conservatively rather than accepting what they may consider a diet that has no good “data” behind its efficacy. For this reason, some may believe that you are on a gluten-free diet for no real scientific reason.

Nevertheless, diagnosis is critical for social acceptance and accommodation—it confers legitimacy on a symptom or the patient. Thus, many people who feel marginalized by health care professionals turn to alternative practitioners to legitimatize their symptoms and solutions. This in turn undermines biomedical science and advocates self-diagnosis—an individual can avoid foods without a doctor’s diagnosis. This can backfire if your problem has no relation to the food(s) you are eating. And if that is the case, you are postponing a proper diagnosis that might alleviate your symptoms.

Listening to the Media and the Masseuse

Many readers do not go beyond an article’s headline or its opening paragraph; it is also difficult for laymen to critically assess statements coming from apparent voices of authority.