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Defining Gluten Sensitivity

Many of you have wondered if you are sensitive to gluten, and unfortunately, the answer is not always a straightforward “yes” or “no,” even with completed test results. Even after a gluten elimination for 4-6 weeks, the verdict is often unclear. If it makes you feel any better, there is no clear way to diagnose gluten sensitivity, but researchers are getting closer to being able to define the condition.  This definition is important as there is an increase in attention to patients, who are symptomatic when they eat gluten and yet who are not diagnosed with Celiac disease (CD).

In June of 2011 at the 11th International Celiac Disease Symposium in Oslo, Norway, there were three categories of wheat and or gluten related pathologies: CD, wheat allergy, and gluten sensitivity.  The first two are well defined : celiac disease is the presence of 2 genes for the condition, and wheat allergy is the positive IgE antibody test to wheat. The third pathology is gluten sensitivity or gluten intolerance and is the category that takes a clinician a lot of time to define and diagnose it.  It is often very vague for patients as well. Many of you will say “I ate a piece of bread on Tuesday and nothing happened, but I had a beer last night and I had terrible abdominal pain.”  It is often unreliable to diagnose yourself based on your reactions to consuming gluten as there are numerous factors that contribute to having symptoms, such as gut flora, damage to intestinal mucosa, transit time, Secretory IgA quantity on gut lining, and so much more.
Gluten sensitivity can be indistinguishable symptomatically from CD or a wheat allergy, which can cause confusion for patients and clinicians.  The term “gluten sensitivity” can be applied to the patients who do much better on a gluten-free diet and yet who do not fit diagnostically into the first two categories. Surprisingly, many people with CD do not have violent and obvious gastrointestinal symptoms that would serve as an obvious cue to the condition. In fact this is what can delay diagnosis for years.  Gluten sensitivity can be under-emphasized in the clinicians office and can seem like an optional dietary decision for the patient, but patients with gluten sensitivity can be as sick as someone with CD.  In other words, your doctor may say “your biopsy and blood tests are all negative so you can safely consume gluten.” This is not true and can often harm patients.

During a 15-year period, CD prevalence increased 5 fold since 1974, and gluten sensitivity is estimated to be 6 times more prevalent than CD, which is thought to affect more than 1 in 132 people.

Researchers at the University of Maryland Center for Celiac Disease Research have been working to validate gluten sensitivity as a separate entity from CD and wheat allergies.  They have found that 68% of patients with gluten sensitivity have abdominal pain, 40% have eczema or rash, 35% have headaches, 34% have brain fog, 33% have fatigue, 33% have diarrhea, 22% have depression, 20% have anemia, 20% have numbness in their arms or legs, 20% have joint pain.  Many of these symptoms are in bodily systems outside of the gastrointestinal tract, which is the main reason that patients often go undiagnosed. That is, some patients who are gluten sensitive may present to the office with depression, eczema, fatigue and no gastrointestinal problems.   They might be given an antidepressant and a topical steroid to treat the symptoms of the conditions, but the underlying cause is completely missed.

What researchers are finding is that the immune response is quite different in a patient, who has gluten sensitivity vs. a patient with CD. The following is a list of factors that can serve as early identifiers of gluten sensitivity:

Negative wheat IgE
Negative Celiac testing (endomysial antibodies,  tissue transglutaminase, IgA presence)
Negative biopsy findings for Celiac
Positive Anti-gliadin antibodies ( IgA, IgG)
Presence of clinical symptoms that can also be present in the patient with Celiac disease or wheat allergy
Resolution of symptoms on gluten free diet.

Gluten sensitivity is not a rare condition, yet it also cannot be ruled out solely on a patient’s presentation in the office. By testing thoroughly, we can gain a greater understanding of which category you my be in.   As we move toward greater clarity of the the differences in the immune response between CD and gluten sensitivity we will gain greater insights into the mechanisms that are in play.