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

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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.

—JEROME GROOPMAN, M.D., HOW DOCTORS THINK

Health advice is readily available on the Internet, TV shows, and from nutritionists or unlicensed “dietitians,” health gurus, masseuses, bloggers, newspapers, and magazines. While the advice from alternative sources can be helpful in some cases and generally ensures a sympathetic ear, it should not be a substitute for or confused with medical advice from your physician.

You Rely on Internet Advice

My patient arrived with a fistful of material from the Internet, a list of tests she wanted to confirm the diagnosis she’d come to of her problem, and possible drugs to treat it. I asked her why she bothered to consult with a doctor.

(DR. F)

There are many medical resources on the Internet, but it can be hard to understand and interpret research studies. PubMed Central, an archive of biomedical and life sciences journal literature at the U.S. National Institutes of Health’s (NIH) National Library of Medicine, posts the abstracts of all research studies (essentially the summary of what the study set out to do and its results and conclusions). While some studies are free, obtaining full-text articles that contain a discussion section is often difficult without academic access and a subscription. This key section outlines all the limitations of the study (e.g., a very small group was tested, requiring confirmation in a larger study; participants dropped out because of symptoms; a drug or test caused serious side effects in a significant amount of people, etc.) that are crucial for assessing its meaning.

Magazine articles often trumpet a study, drug, or breakthrough that comes on the heels of another less-publicized study with opposing or lukewarm results.

Some Listserv sites distribute messages with Q&A sections to a specialized electronic mailing list. The advice on these sites ranges from practical travel and eating-out advice to testing analysis. The former is helpful; the latter is dangerous, as it comes mainly from patients.

Some people rely on the Internet more heavily because it is often financially difficult for them to see a doctor until a medical crisis sends them to the emergency room. Nevertheless, most major medical centers today have excellent websites based on the different specialties and conditions they treat. These specific sites offer reliable medical guidance and can help you determine if a doctor’s visit is essential and help you to find appropriate resources.

Conflicting advice is found online, and many people read articles that agree with what they have already decided is the solution. Many are looking not for medical information but advice and treatments from the articles and “experts” that confirm their own prejudices on the subject.

The Internet offers everything from PubMed Central to preposterous—it is not a place to go for a diagnosis or treatment.

You “Test” Online

Alternative tests for various food intolerances are available online. While the less said about them the better—you are paying a great deal of money for something that is scientifically meaningless—the reasons behind this statement deserve some explanation.

A biological marker for gluten sensitivity does not currently exist, although researchers are working to find one. (See chapter 18, “Gluten Sensitivity.”) Despite that fact, fecal (stool) tests for this condition are available online along with other fecal tests for various food intolerances and allergies. The same “lab” also advertises a DNA genetic test for nonceliac gluten sensitivity (NCGS) even though no specific genes have been isolated for the condition.

Additionally, the markers they claim will determine the “diagnosis” (IgG antigliadin antibodies) are neither sensitive nor specific enough to diagnose either celiac disease or gluten sensitivity. (See chapter 6, “A Word on Testing.”) It has been shown that 20 percent of non-gluten-sensitive individuals also have elevated levels of these antibodies for no apparent reason, which puts any “diagnosis” by these tests in serious doubt.

The danger of getting your medical information and diagnosis from what amounts to a self-test is that your problem may not be gluten sensitivity and you fail to get a proper medical evaluation, thereby missing a serious illness that then goes untreated and may progress.

You Do It “Naturally” with Alternative Sources

Inundated by headlines and articles exposing the dangers in our food supply, the side effects of drugs, the rise in hospital-borne infections, bacterial resistance to antibiotics, and many other environmental dangers, many patients want a more “natural” approach to health care. Others feel that they understand their bodies better than their doctors. While there may be some truth in this thinking, it can also border on the delusional. (See chapter 3, “Picky Eaters.”)

Many people find their thinking about food and fatigue issues is more simpatico with that of a chiropractor, trainer, nutritionist, or acupuncturist and follow their dietary and supplement advice. Some of these practitioners push products that they claim will cure gastrointestinal issues, cleanse the body, and enhance your health, but are usually the modern version of snake oil—a quick quack remedy or panacea. The majority of these products will do little more than help your wallet lose weight, and some of them can be truly dangerous. (See chapter 5, “Supplements and Probiotics.”) This can make patients fearful or unwilling to tell their doctors about the supplements, herbs, and potions they take in addition to prescription medications. The doctor is then unable to unravel a drug/supplement interaction that could be lethal and would be immediately apparent if the patient had come clean.

Doing it “naturally” or on your own can compound issues, especially when there are major problems or psychological issues.

Why Individuals Don’t Go to Doctors

Whenever I read anything, it says, “Consult your doctor before doing any exercise.” Does anybody do that? I kind of think my doctor has people coming in with serious problems. I don’t think I should be calling him and saying, “Hi, this is Rita, I’m thinking of bending at the waist.”

—RITA RUDNER

There are various reasons people do not rely on doctors for medical advice and treatment, but food and lifestyle issues seem to raise a red flag on both sides of the desk. Many with unresolved symptoms assume the doctor trivializes them as nonserious and therefore they avoid the discussion. Others state that they think the doctor views a gluten-free diet as a lifestyle rather than a health decision. And if going gluten-free is not to treat celiac disease, a wheat allergy, or another diagnosed condition but gives you a better quality of life, you both may be right.

My Doctor Doesn’t Listen/Have Time

My doctor said, “You have celiac disease. Go on a gluten-free diet and I’ll see you in six months.” That’s when we got really frustrated and really lost. My doctor sent me home without any guidance.

(ARLENE, 18)

Admittedly, not every doctor is a talented listener. Understanding the experience of illness comes with practice, and some physicians need to be reminded that the antibodies on the lab sheet are attached to a person. But there are two sides to this dialogue, and patients often fashion their narratives to give the doctor what they think the doctor wants to hear. The result can be unsatisfactory for both parties.

Allergies and food intolerances—along with celiac disease and other autoimmune diseases—have mushroomed in the past decade for reasons that are still being actively researched. Many physicians are therefore still examining the dietary and potential microbiotic aspects of their specialties, so you should request a professional referral for dietary counseling if your diagnosis requires a restricted diet.

Food restriction is currently the only treatment for those with celiac disease and food allergies, and a major component of others, such as diabetes and kidney stones. Trained and registered dietitians have the time to explore the nuances of these various diets, and you should turn to them for expert advice after—not before—diagnosis.

You Got Off on the Wrong Floor

Where you stand depends on where you sit: your specialty can affect, even determine, your position.

—JEROME GROOPMAN, M.D., HOW DOCTORS THINK

Many people look to alternative sources for a diagnosis because they feel that their doctor “sees me only as someone with irritable bowel syndrome.” Diagnoses stick until it can be proven that you have something else—and negative test results often leave people categorized and displeased with the answer. Patients with GI symptoms usually have GI issues; those with neurological symptoms usually have neurological issues. Doctors are taught in medical school that “the common occurs commonly.” But frequently GI issues can cause neurological symptoms, as is seen in celiac disease and other malabsorption conditions that cause vitamin and mineral deficiencies leading to ataxiafn1 (lack of coordination) and other gut-brain reactions.

If you need a raincoat, you won’t find it in the shoe department. It is often necessary to run different tests or seek out a different specialist who is willing to change his/her position on an issue.

Financial Issues

The insurance and financial landscape of medicine is a reason cited by some people in the U.S. to explain their avoidance of medical care. If you continue to have unresolved symptoms and are self-diagnosing and self-treating without the benefit of medical testing, you should seek out a clinic or practice that will accommodate your needs, before an underlying condition sends you to the emergency room.

Where you get your medical information will ultimately determine your long-term health.

Ask yourself if you are seeking alternative sources of medical information mainly to justify a gluten-free diet as the answer for ongoing symptoms. As 19th-century French physiologist Claude Bernard said, “It is what we think we know already that often prevents us from learning.”

2
Does a Gluten-Free Diet Work for You?

You have to decide that food is no longer the focus of your life.

(DINA, 28)

It’s harming people with celiac disease because people are choosing the “diet of the month,” and it’s really impacting the people who medically are on a restricted diet.

(JEAN, 37)

Are You a PWAG?

PWAGs (pronounced pee-wags) stands for people who avoid wheat and gluten. It is a term coined by a group of gastroenterologists to encompass the huge numbers of patients they have been seeing who go on a gluten-free diet because of what they describe as an intolerance to wheat products in the absence of celiac disease.

Many of these patients have a higher prevalence of the genes associated with celiac disease (the HLA-DQ typing). And one study showed that PWAGs had a higher number of medical diagnoses for other food intolerances and small intestine bacterial overgrowth (SIBO).

If you are a PWAG, there are many reasons you made this decision—disease treatment, symptoms relief, perception of a healthier way to be, recommended by a health care professional, etc. And an equal variation in its success.

First and Foremost—What Is Gluten?

Gluten is the general term used to describe the storage protein of wheat. Wheat is approximately 10 to 15 percent protein—the remainder is starch. Gluten is what remains after the starch granules are washed from wheat flour. The gluten fraction that is most studied in celiac disease is gliadin, but there are other proteins that chemically resemble gliadin in rye (secalins) and barley (hordeins). These proteins are not strictly glutens, but are generally included in the term. There are other proteins in wheat (See chapter 11, “Gluten and Nongluten Grains”) that may also be problematic for PWAGs and are part of the complex reason why the diet works for some, only partially for others, or not at all.

Why a Gluten-Free Diet Works

You have celiac disease and the diet fixes the inflamed intestine.

A gluten-free diet is a lifesaver for those with celiac disease and is a proven medical treatment. If followed carefully, it resolves symptoms, rebuilds nutritional stores depleted by a damaged intestinal lining, and, in children, rebuilds bone loss caused by malabsorption of calcium. (See chapter 17, “Celiac Disease.”)

You have nonceliac gluten sensitivity (NCGS) and the diet relieves symptoms (neurological, skin, gastrointestinal).

Many individuals who feel or have been told that they have NCGS—again, there are currently no diagnostic tests for this condition—find relief with gluten withdrawal for neurological disorders, skin rashes, and GI symptoms such as gas and bloating. (See chapter 18, “Gluten Sensitivity.”)

You have irritable bowel syndrome (IBS), and elimination diets have resolved some or all of the gas, bloating, and pain.

IBS may be due to a sensitivity to a food that most tolerate without problems. It is a diagnosis of exclusion—other tests having proven negative—and dietary restriction can be successful, often only partially, for those patients with carbohydrate intolerances. (See chapter 12, “Carbohydrates and FODMAPs,” and chapter 19, “Irritable Bowel Syndrome.”)

You just think it works so it does.

A placebo is not only the archetypal sugar pill but anything that impacts a patient’s expectations.

Why a Gluten-Free Diet Does Not Work

The main reason a gluten-free diet does not work is that gluten is not the issue and/or you may be missing treatment for another disease.

This may include:

 SIBO

 Fructose intolerance

 Lactose intolerance

 Other food intolerances

 Microscopic colitis

 Gastroparesis (a condition where the stomach cannot empty properly)

 Pelvic floor dysfunction (weak muscles in the pelvic floor, often caused by childbirth)

 A problem related to a medication you are taking

After a thorough medical evaluation, we find that many PWAGs have a variety of conditions and may, in fact, be able to eat gluten again, symptom free, with proper diagnosis and treatment.

You may be on a gluten-free diet but other types of carbohydrates, e.g., fructose, are the problem. (See chapter 12, “Carbohydrates and FODMAPs.”)

You’re under the impression that the diet is a cure-all for many health-related ailments.

A survey by Consumer Reports showed that 63 percent of North Americans think that a gluten-free diet improves physical or mental health, and 33 percent buy gluten-free products because they believe these foods will improve digestion and gastrointestinal function. Unless you have celiac disease or a specific carbohydrate intolerance, a gluten-free diet will not work for either of these issues.

The diet does not work to lower cholesterol or strengthen your immune system, even though many people believe it does.

The diet is disrupting your intestinal flora—the microbiome—and causing symptoms.

Restrictive diets—gluten-free, low-FODMAP—have been shown to reduce the richness and diversity of our intestinal microbiota, which in turn may cause persistent symptoms in patients with celiac disease and possibly other conditions. While it is unclear exactly what this disruption means or the long-term effects, it is generally believed that a diverse microbiome is healthier. While there is no one “healthy” microbiome, the studies on this should be watched. (For more, See chapter 9, “The Microbiome.”)

People should make every effort to diversify their diets. This may be particularly important as people age. Aging is known to be associated with a reduced diversity of the gut microbiome, and this may lead to a compromised intestinal barrier and increased susceptibility to infectious diseases and infections.

If a disrupted microbiome is a side effect of a gluten-free diet, these consequences should be considered before you embark on a gluten-free regimen unless you have celiac disease.

Will It Work in Other Ways?

Can I lose weight on a gluten-free diet?

Some go on a gluten-free diet to lose weight. This works if you exclude but do not replace wheat as the main carbohydrate. In animal studies a gluten-free diet prevented the development of obesity and metabolic disorders. BUT, while gluten was eliminated from the diet, the mice were not fed replacements with gluten-free products. The no–white food or Atkins diet (no bread, pasta, potatoes, rice, cake, or cookies) will usually ensure weight loss but can be nutritionally inadequate if enough fruit and vegetables are not substituted for those carbohydrates. It is also hard to sustain.

Will I have more energy?

Unfortunately, if you do not have celiac disease, a gluten-free diet is not likely to make you the Energizer Bunny. Although many people insist that they feel logy or tired after eating gluten, there is little scientific evidence to support this. Postprandial fatigue (which occurs after eating) is common, especially after a large meal, when various hormones are released to aid digestion. These hormones act on the brain when released in the gut and cause the fatigue many report.

Will I become a world-class athlete—or will thinking so make it better?

The use of a gluten-free diet by famous people has enhanced its appeal. Publicized by Hollywood stars, it has also been endorsed by several high-profile athletes. The reasons behind this speak to our infatuations with celebrities and fad diets, and wanting to believe something enough to think it works—the placebo effect.fn1

An Australian study of nonceliac athletes, including eighteen world and/or Olympic medalists who followed a gluten-free diet 50 to 100 percent of the time, reported that self-diagnosed gluten sensitivity was the primary reason for adopting the diet. The leading sources of information on the gluten-free diet were online, a trainer/coach, and other athletes. Neither the diagnosis nor treatment was based on medical rationale, merely the perception that removing gluten provided “health benefits” and an “ergogenic edge.”

If you do not have chronic symptoms that require medical treatment, the gluten-free diet can be both placebo and minefield. We advise staying tuned to your local news for updates—the latest dietary trend may be announced on Entertainment Tonight.

If you are looking for more realistic scientific advice, the following chapters will explore what taking gluten and other foods out of your diet will really do to and for your body.

3
Picky Eaters—Orthorexia and the Hygiene Hypothesis

Water surges, only to overflow.

—CHINESE PROVERB

Things turn into their opposites when they reach their extremes. And “healthy” eating is moving in that direction.

There are good reasons that we have food on our minds. According to the U.S. Centers for Disease Control and Prevention (CDC), half of all Americans have a chronic disease or condition such as high blood pressure, heart disease, or type 2 diabetes and have been instructed to think about fat, sugar, and/or salt. More than 9 percent have diabetes and must monitor their sugar/glucose intake multiple times every day. At least 35 percent of Americans are obese and cycle through different diets, gaining and losing weight every year. About 1 percent has celiac disease and avoids gluten. Up to 15 million people in the U.S. have a food allergy, estimated to affect 1 in every 13 children under the age of 18. A study by the World Health Organization reported that noncommunicable diseases were responsible for 86 percent of all deaths and 77 percent of the disease burden in the European Region and noted that this primarily included conditions caused by high blood pressure and cardiovascular diseases. Three of the priority interventions recommended were dietary.

Unfortunately, the National Eating Disorders Association notes that 20 million women and 10 million men suffered from a clinically significant eating disorder at some point in their life, including anorexia nervosa, bulimia, binge eating, or an eating disorder not otherwise specified. In the UK, a National Health Service (NHS) study estimated that more than 725,000 people are affected by an eating disorder and that eating disorders can affect people of any age.

The current obsession with food is not surprising; mankind has been on some kind of restricted diet—by need or choice—since the beginning of time (see Appendix A), but for some it has taken a turn into the obsessively unhealthy.

Orthorexia Nervosa—Healthy Eating as a Disease

Food is an important part of a balanced diet.

—FRAN LEBOWITZ

I don’t like anything “lite”—that’s not my thing. I have one friend who goes to a chiropractor who tests you, and they take one thing after another out of your diet. He evaluates what you eat and decides what foods your body is not tolerating. She’s currently living on kale.

(ILYSSA, 39)

The focus of the press and social media on “healthy eating” as the source of, or cure for, disease has taken hold to the point of creating a new condition termed orthorexia nervosa. Individuals eliminate one healthy food after another (gluten, corn, soy, meat, dairy, all fats, carbohydrates, etc.) in the belief that these foods are “unhealthy”—until they are barely receiving adequate nourishment. It can reach the point of anemia, bone loss, vitamin depletion, and malnutrition.

The condition is not as yet recognized in the DSM-V (the Diagnostic and Statistical Manual of Mental Disorders, used professionally to diagnose psychiatric disorders) but is being seen by many doctors evaluating patients for symptoms related to nutritional deficiencies.

The term orthorexia was coined by Dr. Steven Bratman from the Greek ortho (correct or proper) and orexis (hunger or appetite). Unlike in anorexia, those with orthorexia focus on the quality rather than the quantity of food eaten. They start removing foods because they do not feel well, and when they do not feel better, they remove more and more until they are on an overly restricted and generally unhealthy diet.

Are You Orthorexic?

 Have you eliminated entire food groups from your diet? (Gluten, dairy, corn, and soy are the usual suspects as well as red meat, carbohydrates, etc.)

 Three or more food groups?

 Do you constantly worry about which foods may be unhealthy?

 Do you feel guilty when you eat food you consider unsafe?

 Do you have problems finding healthy foods?

 Do you have ritualized eating patterns?

 Are you anxious when eating out or traveling?

 Have you started avoiding lunches, dinner dates, and catered parties?

 Do you lecture your friends and family about unhealthy eating?

 Do you read medical journal articles about digestion, carbohydrates, protein, etc.?

 Do you challenge others who disagree with your food choices?

 Do you wish that you could just eat and not worry about the quality of foods?

 Do you have symptoms that do not fit any medical diagnostic category for which you blame gluten, dairy, or a specific food?

Orthorexia affects a small percentage of individuals, but is yet another food-related disorder that has evolved from the increased focus on food as cause and/or cure for symptoms and disease.

The Hygiene Hypothesis—Are We Too Clean for Our Own Immunological Good?

My daughter-in-law sterilizes everything that goes into my grandson’s mouth. I raised four children on the 10-second rule—if it’s been on the floor for less than 10 seconds, pick it up and eat it—and not one had an allergy or food issue. Now we’re boiling the baby’s fork and spoon after it comes out of the dishwasher, and every other person’s child is allergic to peanuts or dairy or gluten. Something’s wacky here.

(GERI, 64)

The diagnosis of allergies and autoimmune diseases has risen dramatically in the last few decades. While there are many underlying and complex mechanisms at work, a great deal of scientific interest is being focused on the “hygiene hypothesis.” This states that childhood exposure to germs and certain infections helps the immune system develop normally, and that excessive cleanliness interrupts this process.

In other words, the young child’s environment can be too clean to effectively challenge a maturing immune system. Frequent and repeated exposure to a variety of microbial antigens and infections may lead to a more robust, i.e., healthier immune system.

While it is well documented that avoiding germs helps prevent the spread of infections, the hygiene hypothesis suggests that we have taken this too far. And with the advent of antibiotics and the great public health efforts of the last century, the immune system is no longer required to fight germs as actively as in the past.

Scientists based this hypothesis in part on the observation that, before birth, the fetal immune system’s “default setting” is suppressed to prevent it from rejecting the mother’s tissue. This is necessary before birth—when the mother is providing the fetus with her own antibodies. After birth the child’s own immune system must take over and learn how to fend for itself. But the extremely clean household environments often found in the developed world do not provide the necessary exposure to germs required to “educate” the immune system so that it can learn to launch its defense responses to infectious organisms.

A critical part of this evolution is orchestrated by a child’s developing microbiome, and a lack of diversity—reduced by exposure to fewer germs and infections—derails the period of immune growth after birth.

The hygiene hypothesis has been implicated in the growing number of people with allergies, autism, and autoimmune diseases.

MacDonald’s Farm Had the Right Idea?

Since the hypothesis was first proposed by epidemiologist Dr. David Strachan in 1989, several studies have revealed a reduction in the sensitivity to allergens and atopic (skin) disease in children exposed to farm environments, those who have animals in their homes, and in those who have attended day care at an early age and were exposed to other children’s infections.

Several lessons have come from studies comparing populations in Russian Karelia and neighboring Finland. These two populations live in completely different socioeconomic circumstances—they have one of the largest socioeconomic discrepancies in the world—yet share similar diets and genetic backgrounds.

The researchers determined that the children in Karelia are exposed to a large variety of different microbial infections that are significantly less frequent in Finnish children. Starting in 1999, numerous studies on autoimmune and allergic diseases show an incidence of type 1 diabetes that is six times lower in Russian Karelia. The incidence of celiac disease is 1 in 496 in Karelia and 1 in 107 in Finland using identical criteria. These studies appear to indicate that environmental factors play a role in our immune reaction to microbes and in the development of allergies and autoimmune conditions. While all of the factors initiating these conditions have not been identified, the hygiene hypothesis offers an intriguing approach.

The mechanisms by which microbes can reduce the development of autoimmune disease are not well understood. They are only part of a larger autoimmune and allergic response that is also affected by your genetic makeup, and a variety of factors that occur over a person’s lifetime. It cannot be considered the sole determinant of a disease.

Before people start feeding their children from the floor or allowing them to share the dog’s bowl, it should be stressed that many researchers feel that the hygiene hypothesis is far too simplistic an approach to understanding the causes of celiac disease or any other autoimmune disease.

This hypothesis does focus attention on the impact of microbes on disease, hopefully without discouraging good hygiene practices.

BOTH ORTHOREXIA AND the hygiene hypothesis are extreme examples, yet they illustrate what can happen when individuals become mesmerized by the message, and the human body is deprived of the many forms of nourishment it requires to develop, grow, and flourish. Both advanced in the name of “health.”

What we deprive our body of is every bit as important as what we feed it.

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