More on Gluten Sensitivity andCeliac Disease from Dr. Fasano

An update on my Top Celiac Researcher Speaks Out About Gluten Sensitivity post: This past week I asked Alessio Fasano, M.D., from the Center for Celiac Research, a few questions for a magazine article I was writing. He said that there is “no doubt” that gluten sensitivity affects many more people than celiac disease does and that 60 to 70 percent of the patients who come to the Center for Celiac Research fit his criteria for gluten sensitivity. His criteria for gluten sensitivity is not testing positive for celiac disease or for wheat allergy but responding positively to a gluten-free diet with resolution of symptoms. New screening tests for gluten sensitivity may be coming in the near future to change the criteria, Dr. Fasano says.

Also, celiac disease continues to be missed or underdiagnosed because many physicians are unaware of the multifaceted clinical presentations of celiac disease. Here are highlights from a new journal article coauthored by Dr. Fasano:

  • Through history, celiac disease has been perceived as a disease with a uniform clinical presentation consisting of chronic diarrhea, abdominal distention, and weight loss. We now know that the symptoms of celiac disease vary markedly and can affect organ systems other than the gastrointestinal tract, including the musculoskeletal system, the skin and mucous membranes, the reproductive system, the blood, the liver, and the central nervous system.
  • Atypical presentations of celiac disease include short stature, osteoporosis, infertility in both men and women, and neurologic syndromes, including peripheral neuropathy, epilepsy, dementia and depression.
  • For each diagnosed case of celiac disease, there is an average of five to ten undiagnosed cases.
  • The delay between the onset of symptoms and diagnosis has decreased from 11 years before 1981 to 4.6 years now, but that is still unacceptably long.

Reference: Catassi C, Fasano A. Is this really celiac disease? Pitfalls in diagnosis. Current Gastroenterology Reports, 2008;10;466-472.

Melissa’s Comments:

This new journal article by Dr. Fasano reinforces just how wide the clinical spectrum of celiac disease is and why so many doctors continue not to diagnose it. Let’s face it, many celiac-aware patients know a lot more about recent research into celiac disease and gluten sensitivity than their doctors do, but this is changing because of journal articles such as this one that highlight the changing picture of celiac disease. Plus, more and more patients continue to push their doctors for answers.

For the many people who don’t test positive for celiac disease but respond to a gluten-free diet, it has been frustrating for quite some time to not have doctors acknowledge gluten sensitivity. But that is changing, too.

It’s great to know that the leading celiac researcher in the United States, Dr. Fasano, is aware of how prevalent non-celiac gluten sensitivity is and that he is planning on doing more research in this area.

I’ve received word that another prominent celiac researcher with a different viewpoint on how to test for gluten sensitivity plans to try to publish his research soon. I’ll keep you posted when that new research becomes available.

As I said in a previous post:

Research in this area is coming from many fronts, all pointing to gluten sensitivity affecting many more people than celiac disease does. So, for those of you who have friends or family members who have gluten-related symptoms but have tested negative for celiac disease, be sure to point them to this information, to my book, and to my 2002 article, “Is Gluten Sensitivity Derailing Your Health?”. Gluten sensitivity is real, affects many people and results in countless symptoms. The only way to treat gluten sensitivity is the same way you treat celiac disease – with a gluten-free diet.

© Copyright 2008 Melissa Diane Smith

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