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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 (#ulink_50088da2-6d14-5de0-8524-13042127f53a)
Defining the Problem (#ulink_50088da2-6d14-5de0-8524-13042127f53a)
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)
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 (#ulink_06897b7d-dfdf-5308-8e44-d978da89e90f)
What Is Your Source of Medical Information? (#ulink_06897b7d-dfdf-5308-8e44-d978da89e90f)
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 (#u5ed481d4-4820-560c-9fb1-35266fbb5144), “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 (#u93a71ced-748c-52e8-a303-1b1309837303), “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 (#u50979bda-c459-5139-92e7-e49f80cf20e2), “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 (#u92ab60e2-470e-51c4-b2d1-63cf431f9389), “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 ataxia
(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.
