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Refractory Celiac Disease
In 1994 I was diagnosed with celiac disease, which led me to create Celiac.com in 1995. I created this site for a single purpose: To help as many people as possible with celiac disease get diagnosed so they can begin to live happy, healthy gluten-free lives. Celiac.com was the first site on the Internet dedicated solely to celiac disease. In 1998 I foundedÂ The Gluten-Free Mall, Your Special Diet Superstore!, and I am the co-author of the book Cereal Killers, and founder and publisher of Journal of Gluten Sensitivity.View all articles by Scott Adams
The following post is from Dr. Joseph Murray, one of the leading USA physicians in the diagnosis of celiac disease (CD) and dermatitis herpetiformis (DH). Dr. Murray (firstname.lastname@example.org) of the Mayo Clinic Rochester, MN, is a gastroenterologist who specializes in treating Celiac disease:
A recent poster asked about refractory celiac disease. This is a highly complex area and is the most challenging in dealing with celiac disease. While refractory celiac disease can be defined as a patient with celiac disease whose symptoms do not respond to a gluten-free diet there are several important questions and issues in coming to the determination that the patient is really suffering from true refractory disease. To make the diagnosis conclusively, first one must be satisfied that there is not another cause for the problem. Though rare, there are other conditions that can mimic, or coexist with celiac disease, and cause continued problems. The second issue is whether the patient is truly gluten-free, and have they been so long enough to conclude that there has been a failure with the diet? To make this determination I have the patient keep a complete and detailed dietary record for 3-4 weeks listing every single item they ate and have them save the wrapper or carton for review. If the dietitian or myself feel that there is any possibility of contamination then we exclude that item and wait longer. Sometimes the patient is exposed to a higher risk of gluten contamination by eating out a lot, where they do not have true control over the food preparation. We also check medications that the patient takes regularly. I also check the endomysial
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