Gluten Exposed

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

Dr. Peter Green, Rory Jones

• Publisher: Fourth Estate
• Year: 2016
• Print ISBN: 9780008144067
• eBook ISBN: 9780008144050
• Topic: Medicine
• Subtopic: Nutrition, Dietics & Bariatrics

From the internationally renowned expert on celiac disease and director of the Celiac Disease Center at Columbia University, here is the definitive book on gluten, uncovering the truth and explaining the science behind the current gluten-free craze.

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 o...

Table of contents

• Title Page
• Copyright
• Contents
• A Note from the Authors
• Introduction
• Part I: Defining the Problem
• Part II: What is Going on in the Gut
• Part III: The Fingers on the Trigger
• Part IV: Putting Order in the Disorders
• Part V: The Brain-Gut-Gluten Connection
• Part VI: Navigating a Gluten-Free Life
• 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