Not Celiac Disease? Then What?

As a dietitian in private practice for ten years, I had many patients present with symptoms that sounded a whole lot like celiac disease. I would send them back to their primary care provider or gastroenterologist and recommend a work up for celiac disease. Results (from blood work and even biopsy) would come back negative for celiac disease and I would just scratch my head. I’d then recommend the patient remove gluten from their diet anyway because I had no idea what else to try. A month later, their symptoms would have disappeared. We’d reintroduce gluten and their symptoms would be back. I never knew what to make of this – I’d loosely call it ‘gluten intolerance’ and suggest they continue to follow a gluten free diet.

Last year, fifteen celiac disease experts from seven countries met to develop a new classification for individuals who present with gluten sensitivity but not celiac disease. Their consensus was published last month in the peer-reviewed journal BMC medicine.

Dr. Alessio Fasano, professor of pediatrics, medicine and physiology and Director of the University of Maryland Center for Celiac Research (CFCR) is recognized by many to be the world’s leading expert on celiac disease and related conditions. He talks about how the field is just starting to understand gluten sensitivity as separate from celiac disease.

It turns out that Dr. Fasano and his colleagues at CFCR were having the same issue as I was in private practice. Patients who had negative diagnostic results for celiac disease returned to the clinic complaining of symptoms similar to celiac disease. Many of these patients saw their symptoms improve by following a gluten free diet.

At this point, research is being done to determine biomarkers for gluten sensitivity so that diagnostic tests can be developed. For the moment, the gluten sensitivity diagnosis is made by doing tests to eliminate the possibility of celiac disease as well as wheat allergy. The patient then begins a gluten free diet and symptoms are monitored by both patient and physician.

So how is gluten sensitivity different from celiac disease or wheat allergy?

Celiac disease involves an autoimmune response to the gliadin protein in gluten containing foods. Intestinal damage, along with many other possible symptoms, is the direct result of eating gluten.

Wheat allergy is a food allergy that is tested using IgE specific blood tests, skin prick tests and a food challenge.

Gluten sensitivity is an innate immune response which means it is non-specific and is not directed toward the person’s own tissue.  Symptoms can include gastrointestinal (GI) distress but may also be non-GI related, such as headache, join pain and numbness in the legs, arms and fingers. The complicating factor is that symptoms for celiac disease and for gluten sensitivity can often look alike.

Gluten sensitivity is less clinically serious than celiac disease. It does not lead to other auto immune diseases, which untreated celiac disease often does. However, patients with gluten sensitivity experience significantly improved quality of life when they are on a gluten free diet.

The take away from the top researchers in this field is that if you are having symptoms and your doctor has ruled out celiac disease and wheat allergy, use the gluten free challenge to determine if you have gluten sensitivity. Be sure to do this challenge with a Registered Dietitian or physician who is knowledgeable about the spectrum of gluten related disorders.

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