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Celiac disease -- more than gluten intolerance

Gluten intolerance has recently become a popular nutritional catch phrase. But behind the hype of the many gluten-free products currently on the market is an actual disorder called celiac disease. Lorraine Rapp and Linda Lowen, hosts of WRVO's health and wellness show “Take Care,” recently spoke with Dr. Daniel Leffler, who is the director of the Celiac Center at Beth Israel Deaconess Medical Center in Boston about how the disease is diagnosed and treated.

Lorraine Rapp: What is celiac disease and how it presents? We’ve heard the term, why don’t you describe the process of the disease?

Dr. Daniel Leffler: Celiac disease is an auto-immune disorder. It’s not intolerance, it’s not an allergy. It’s actually much closer to things like Type I diabetes or rheumatoid arthritis or lupus than it is to lactose intolerance or something like that. In people with celiac disease, gluten, which is one of the main proteins that is found in wheat and related grains, such as rye and barley, this is able to trigger a reaction where the body starts to attack itself. And the body attacks itself in many ways.  It attacks the lining of the intestine, that’s where the disease originates from, and that’s where a lot of the manifestations of celiac disease arise, due to that damage to the intestines and malabsorption. This is why anemia and gastrointestinal symptoms are very common in celiac disease. But you also produce antibodies, those are immune proteins that help to fight off infection usually, but in this case they actually target your own parts of the body. And they can attack almost any part of your body, and that’s why people with celiac disease can get rashes, they can get neurologic abnormalities from the brain, they can get bone problems. Really almost any organ can be affected by celiac disease even though it’s all triggered by this abnormal reaction of gluten with the immune system in the intestine.

Linda Lowen: How is it diagnosed?

Dr. Leffler: We’ve come a long way with celiac diagnosis in the last 10 or 15 years. In the past, we were limited to intestinal biopsy. And even that wasn’t very easy to do because that was in the '70s. That was before the era of easy, flexible endoscopy the way we do now. So there was good reason why, in the 1970s, not a lot of people were thinking about diagnosing celiac disease. We really don’t have good excuses about why it’s not being thought about now. Now we have very, very good blood tests that are 95 percent accurate for diagnosing or excluding celiac disease—again, just with a simple blood test. They are very good blood tests. They have transformed the way we evaluate and diagnose celiac disease, but they’re not 100 percent, and that’s why we still rely on endoscopy biopsy of the intestines, the area where the celiac disease is most active, as the gold standard for diagnosis. It’s a lifelong condition, so we really try to avoid errors in diagnosis whenever possible.

Linda Lowen: What is the treatment for celiac disease?

Dr. Leffler: So the only treatment currently for celiac disease is strict adherence to gluten free diet. The good thing is really that it’s a dietary treatment that results in complete healing and resolution in symptoms in the majority of patients with celiac disease. The problems are that it’s hard, but the other problem is that it takes a long time to heal, especially in adulthood, it can take years for a complete healing to occur, if it ever does. And accidental exposures can lead to a lot of persistent symptoms. So it’s a hard diet, it really requires a great deal of attention and diligence, and even in those best case scenarios it can take a frustratingly long time for people to really feel back to normal again.

More of this interview can be heard on "Take Care," WRVO's health and wellness show Sundays at 6:30 p.m.  Support for this story comes from the Health Foundation for Western and Central New York.