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Does Gluten Sensitivity Exist? Or Is It All In Your Head?

By Edited Oct 27, 2016 1 2

Is Gluten Sensitivity a Fad?

Does Gluten Sensitivity Exist?

Over the past few years, awareness of celiac disease and the importance of eating a strict, gluten-free diet have grown tremendously. This increased awareness can be partly attributed to better education about the autoimmune reaction that occurs whenever a celiac ingests wheat, barley, or rye. Greater awareness has led to higher rates of patients being diagnosed. Additional factors contributing to this raised awareness also include popular personalities coming forward with their personal stories, and a marketing explosion in gluten-free products.

The sudden rise in popularity of a gluten-free diet has resulted in many individuals beginning to question their own unresolved health issues and symptoms in connection with gluten. As a result, some of these individuals have sought medical help and been diagnosed with celiac disease, while others with the exact same symptoms have not.

Since many of these undiagnosed individuals have chosen to place themselves on a gluten-free diet without medical supervision, there has been an upsurge in controversy surrounding the practice. Some people have even claimed that gluten sensitivity does not exist. But is that true?

Is non-celiac gluten sensitivity a fad? Or is it real?

Are Gluten-Related Disorders Real or Imaginary?

In March of 2011, celiac disease expert Dr. Alesio Fasano and his research team at the University of Maryland School of Medicine's Center for Celiac Research published a landmark scientific study that resulted in gluten sensitivity moving from its questionable status to a distinct reality. At that time, gluten sensitivity was documented to be a real medical issue separate and distinct from celiac disease. In addition, the immune system responses for celiac, gluten sensitivity, and gluten or wheat allergies were found to be different.

Dr. Fasano, the Director of the research center, estimates that gluten sensitivity affects about “6 to 7 times more people than celiac disease” does. He draws that conclusion from the amount of individuals who came to his clinic for gluten testing before gluten sensitivity was recognized. Although they all had exactly the same symptoms, he was sending away 6 to 7 times more individuals than he was diagnosing.

That translates into over 18 million people in the U.S. alone that have trouble with gluten, in addition to the 3 million with celiac disease – most of which are not diagnosed. In fact, the assertiveness of the gluten-sensitive individuals that Dr. Fasano tested and sent away led to his research study. If those patients had not gone onto a gluten-free diet without Dr. Fasano’s medical supervision, then returned to show him their results, he never would have known to look for a different type of immune response to gluten.

Assertive Patients Led to the Gluten Sensitivity Research

Gluten-Related Disorders are a Spectrum

Celiac disease, non-celiac gluten sensitivity, gluten allergy, and wheat allergy are all part of a spectrum that was labeled “gluten-related disorder” by a multidisciplinary task force of 16 celiac-disease specialists from 7 different countries. These celiac professionals originally came together in January of 2011, before Dr. Fasano published his study on gluten sensitivity, to produce a uniform definition for many gluten-related terms.

After combing through decades of PubMed studies, participating in the 14th International Coelic Disease Symposium in June of 2011, and then entering into two later phone conferences to carefully correlate their recommendations, the task force eventually created a solid definition for celiac disease, classic celiac disease, and gluten-related disorders.

  • Celiac disease: “A chronic small intestinal immune-mediated enteropathy precipitated by exposure to dietary gluten in genetically predisposed individuals.”
  • Classic celiac disease: “Celiac disease presenting with signs and symptoms of malabsorption. Diarrhea, steatorrhea, weight loss, or growth failure is required.”
  • Gluten-related disorders: This was the suggested umbrella term for all diseases triggered by gluten, including celiac disease.

Since “gluten intolerance” was often used in the scientific literature as a synonym for both celiac disease and non-celiac gluten sensitivity, the task force recommended that the term no longer be used. Their suggestion was to substitute “gluten-related disorders” instead, because the scientific findings regarding gluten sensitivity are relatively new. Like a corn allergy, it is possible that some gluten-sensitive individuals are reacting to a different portion of the wheat, barley, or rye kernel, other than the gliadin protein.

Boundaries previously attributed to celiac disease were also not clear. There was confusion on behalf of the medical community regarding diagnostic criteria for celiac disease, as well as gluten-related conditions. In addition, research scientists were using terms as they personally defined them, so those definitions lacked conformity across the scientific literature.

With so much scientific evidence available to support gluten-related disorders, the task force was able to correlate the various studies on gluten, and propose new definitions that would bring enough conformity within the research science community to eliminate the confusion.

Why the Controversy Over Gluten Sensitivity?

The scientific community has recognized the existence of the gluten-related spectrum for many years now, even though the medical community has been slow to embrace it. Medical professionals and organizations often wait until scientific studies have been replicated at least twice before accepting study findings as accurate.

That often leads to a lack of knowledge among medical personnel, especially physicians, and results in confusion for reporters who often use outdated medical information as the basis for their obnoxious claims. In addition, this slow-to-move tendency within the medical community also results in long delays in diagnosis for the suffering patient.

Gluten-Free Diet and Weight Loss Claims

Unfortunately, the need to spread gluten-sensitivity awareness is not helped when individuals make public, ungrounded claims such as a gluten-free diet is an excellent resource for weight loss. While that does hold true in some cases, it is highly dependent upon one’s food choices, portion sizes, and physical abnormalities or damage that ingesting gluten has caused.

Gluten-Free Recipes Contain More Fat, Sugar, and Calories

Overall, gluten-free products and recipes tend to be higher in fat, sugar, and calories than the foods they replace, but for those who give up all grains, or those who have been seeing weight gain due to elevated cortisol levels and other stress hormones, a gluten-free diet can certainly be a means to reverse that unhealthy condition.

The idea behind a gluten-free diet is to restore health to those who are suffering with the effects of malnutrition, so sometimes, that health restoration does bring weight loss. But that is not true for everyone. In addition to sometimes feeling worse on a gluten-free diet, on the average, celiacs and gluten-sensitive individuals tend to gain around 30 pounds once they switch to a gluten-free diet. This holds especially true for those who were suffering from malabsorption before diagnosis.

When the body is unable to absorb the nutrients from food, the metabolic rate often drops dramatically, which is why many individuals with celiac disease or non-celiac gluten sensitivity are overweight when finally diagnosed. Once adequate nutrition is restored, however, weight gain can quickly occur.

For those who are underweight, that can be a healthy sign. For those who are overweight, additional dietary methods must be implemented in order to achieve a healthy weight.

No One Digests Gluten

In addition to the outdated and misinformation often presented about gluten sensitivity and gluten-free diets, there is also confusion surrounding gluten itself. Gluten is a mixture of proteins that are found in wheat, barley, and rye, but only the gliadin protein is troublesome to those with celiac disease.

According to Dr. Fasano, gluten can trigger three different types of immune system responses, depending upon how the body reacts to the gliadin protein molecule as it sneaks past the intestinal barrier. However, in every interview he has given about celiac disease or non-celiac gluten sensitivity, Dr. Fasano has revealed that no one digests gluten.

In an interview with The Tender Foodie, he said that, “Gliadin is a strange protein that our enzymes can’t break down from the amino acids (glutamine and proline) into elements small enough for us to digest.” The best that the digestive system can do is to break gluten down into peptides.

Ordinarily, peptides are too large to pass through the small intestine, but those with celiac disease produce an abnormal amount of zonulin. In his latest podcast interview with Chris Kresser last August, Dr. Fasano called zonulin a toxin that he and his research team had found several years ago. It causes the gate between the cells of the intestine to leak. Like gluten, this happens to everyone, but ordinarily, the gates only stay open for a very short time.

For Average Individual, Intestinal Wall Closes After Eating Gluten

In the average individual, the intestinal wall quickly returns to normal, which keeps the peptides inside the intestinal tract. The body eliminates the gliadin peptides before the immune system sees them. With celiac disease, however, the gates become stuck in an opened position for long periods. Even in gluten sensitivity or allergies, the gliadin peptide has enough time to migrate through the intestinal wall before the doors close.

That sets off an immune system reaction. The degree of reaction depends upon:

  1. how long the gates remain open
  2. strength of the immune system response
  3. number of white blood cells created
  4. how many peptides actually make it through the intestinal barrier

When the doors stay open too long, it creates an atmosphere that confuses the immune system. Unlike the reaction Dr. Fasano saw in the cases of gluten allergy or gluten sensitivity, with celiac disease, the immune system started to attack the intestinal wall, rather than the gluten molecule itself as it does for allergies and sensitivities.

What is Non-Celiac Gluten Sensitivity?

As the word “sensitive” suggests, non-celiac gluten sensitivity is a condition where a person reacts in some way to ingesting gluten. Since all issues with gluten are systemic, including celiac disease, this reaction can affect any organ or body system. Unlike the autoimmune response characteristic of celiac disease, gluten sensitivity sparks a different immune system response.

With non-celiac gluten sensitivity, the immune system sees the gliadin peptide as an enemy. It launches an attack against the peptide to protect the body from the foreign invader. Although the method of attack is similar for a gluten or wheat allergy, allergies use different antibodies than gluten sensitivity does.

Signs and Symptoms of Non-Celiac Gluten Sensitivity

The digestive system, central nervous system, bones, and skin are all susceptible to gluten. In fact, there are over 100 documented symptoms for the condition of gluten sensitivity, and 300 for celiac disease. A few of the symptoms of non-celiac gluten sensitivity are:

  • fatigue
  • brain fog
  • depression
  • anemia
  • joint pain
  • osteoporosis
  • sleeping difficulties
  • ADHD-like behaviors
  • fibromyalgia
  • irritable bowel syndrome
  • gastrointestinal problems (diarrhea, constipation, cramping, abdominal pain)
  • neurological disorders (ataxia, neuropathy, depression, dementia)
  • autoimmune thyroid disease
  • schizophrenia
  • feet, leg, hand, and arm numbness

Although these symptoms overlap with celiac disease, Dr. Fasano feels that the damage is less severe, because those with sensitivity rather than celiac are not likely to experience the consequences associated with celiac disease.

Since non-celiac gluten sensitivity is not an autoimmune condition, left untreated, gluten sensitivity would not progress to additional autoimmune diseases as it does for those with celiac. In addition, research performed by the University of Maryland Center for Celiac Research has also shown that gluten sensitivity does not spark intestinal inflammation, so malabsorption and malnutrition is not a concern.

Non-Celiac Gluten Sensitivity’s Role In Major Disease States

Dr. Gary Kaplan, Medical Director of the Kaplan Center for Integrative Medicine has been treating patients that suffer from a wide variety of conditions associated with gluten sensitivity for years now. He has seen them dramatically improve once gluten is removed from their diet. Because of his clinical experience, he considers gluten sensitivity to be a major factor in disease conditions such as:

  1. irritable bowel syndrome
  2. neurological disorders
  3. autoimmune thyroid disease
  4. schizophrenia

These conditions can be progressive and extremely disabling if not promptly treated. Although the University of Maryland Center for Celiac Research has not found malnutrition among those with gluten sensitivity, that does not mean that non-celiac gluten sensitivity isn't serious. Neurological problems, thyroid issues, and gastrointestinal upsets seriously affect an individual’s quality of life.

In the following video, Dr. Kaplan explains what gluten sensitivity is, and describes the gluten-related disorder spectrum as it pertains to these major disease states. But keep in mind that each gluten specialist will have a slightly different viewpoint, due to what they have seen and experienced in their own medical practice.

Beyond Celiac Disease: The Spectrum of Gluten Sensitivity

Dr. Gary Kaplan, DO, DABFP, DABPM, FAAMA

How is Non-Celiac Gluten Sensitivity Diagnosed?

One of the major arguments against going gluten free without medical supervision is the potential for serious disease states and conditions to go untreated. Although all gluten specialists agree that gluten-related disorders outside of celiac disease exist, they do not all agree on how to diagnose them.

After first testing for celiac disease and gluten or wheat allergies, both Dr. Fasano and Dr. Kaplan use an elimination diet to diagnose gluten sensitivities. An elimination diet in this case is simply a gluten-free diet. If the patient improves once gluten is removed for at least several weeks, and then regresses when gluten is reintroduced into the diet, the patient will be diagnosed with non-celiac gluten sensitivity.

However, Dr. Vikki Petersen, coauthor of the book The Gluten Effect: How “Innocent” Wheat is Ruining Your Health, takes a slightly updated view regarding diagnosis. Since she’s been treating patients with gluten issues for over 17 years, and has had gluten sensitivity personally touch her family, she has quite a bit of data and personal experience with gluten-related disorders to draw upon. Unfortunately, the average physician does not.

“Again and again we had patients describing how significantly their lives changed after discovering that they were gluten sensitive,” the Petersens wrote. Since symptoms tend to be nonspecific, and come attached to a variety of health conditions, these “common conditions are investigated first” by most physicians, and “sometimes the underappreciated disorders, such as gluten sensitivity, go unnoticed.”

Although differences abound within the medical community, one thing most gluten specialists agree on is that ruling out celiac disease and gluten or wheat allergies should be done first. That is what concerns Dr. Fasano the most. Patients must be on a diet that includes gluten for celiac testing to be accurate. If a patient goes gluten free by themselves, before seeking out professional testing for celiac disease, the biopsy is likely to be inaccurate.

If tests for celiac disease and allergies both come back negative, only then does it point to a potential diagnosis of non-celiac gluten sensitivity. Up until then, there is always the chance that someone has celiac disease, because classic symptoms, such as gastrointestinal upset, do not always manifest. In addition, Dr. Petersen takes a different stance on the relevancy of using a biopsy to diagnose celiac disease because of its limitations.

In the following video, she explains how she tests for gluten sensitivity, and why.

Testing for Gluten Sensitivity

Dr. Vikki Petersen, DC, CNN

Non-Celiac Gluten Sensitivity is Not an Imaginary Condition

Diet has always been an important factor in an individual’s degree of health, so it shouldn’t be any surprise that gluten could affect the physical body the same as any other nutrient. Although celiac disease is now a well known, widely accepted medical condition, it is not the most common form that gluten problems take. Gluten sensitivity is far more common.

Dr. Fasano feels relieved that he can now tell patients who test negative for celiac disease that their gluten symptoms are not their imagination. In an interview he gave to Alicia Woodward, editor of Living Without magazine, he stated that those who test negative for celiac disease are not making up their reactions to gluten. Despite their negative blood tests and biopsy, it is not all in their heads. “There’s no question about that,” he said.

Gluten sensitivity does exist, and Dr. Fasano is not alone in that medical assessment. In addition to Dr. Kaplan and Dr. Petersen, there are many medical practitioners that have been treating gluten-related disorders unassociated with celiac disease for many years now.

“If you are constantly getting infections or have other immune or autoimmune disorders,” the Petersens write, “investigating gluten sensitivity is certainly worth your time.”

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Comments

Apr 10, 2013 2:40am
chbamey
Very informative article, answered quite a few questions I've had about gluten sensitivity. We've been experimenting with an almost-wheat-free diet, and so far the results have been favorable. In fact, I'm surprised at how easy it's been!
Apr 15, 2013 10:32am
LavenderRose
Thanks. I've been gluten free for several years now, so if there's a question you have that isn't covered in the article, feel free to ask.
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