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.”

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.

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?

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