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August 27, 2003

Celiac

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Question from New York, USA:

I am 20 years old and do not have diabetes, but I was recently diagnosed with celiac disease, and my endocrinologist suggested that I look at this website for information. I have somewhat severe gastrointestinal problems on a regular basis, but I am not underweight, and I was told that I have a relatively mild case of celiac disease. Does that mean that I should not eat any gluten that I should avoid eating gluten most of the time? How vigilant do I need to become about avoiding gluten? Additionally, I was wondering if I am going to gain weight if I do go on a gluten-free diet since in theory my small intestines will heal and absorb more of the food that I eat. I am of normal weight now, and while I do not care about losing weight, I do not want to gain weight.

Answer:

From: DTeam Staff

Celiac disease is an autoimmune disorder that is often associated with other similar conditions in the Autoimmune Polyglandular Syndromes. The most common of these links is with type 1A (autoimmune) diabetes, and teams who work with this form of diabetes often have quite a lot of experience in managing celiac disease, at least in children.

If your diagnosis was based of a duodenal biopsy which showed small intestine damage and not just on a positive anti-glutamyl transferase antibody test, then I think that you should take the diet seriously. It is admittedly tiresome, but there are complications of leaving celiac disease inadequately treated.

Having said this, it is also clear that there is a spectrum in the need for and response to diet. Some people have a clearly positive antibody test, no symptoms and seem to be able to tolerate a modest gluten intake. At the other end of the range, there are people, like yourself, who suffer severe gastrointestinal symptoms, and I rather assume had a clearly diagnostic small bowel biopsy.

My advice would be to start by rigidly excluding gluten and to see what effect this has on your symptoms and your weight: you could deal with any inappropriate weight gain by calorie limitation and exercise. In some months time, when you have become used to the diet, you could experiment with occasional and then minimal gluten introduction. If you have no adverse response, you could continue that way. It is important to say though that there have been no studies that show a clear long term relationship between symptoms and gluten intake and lymphoma of the bowel is a recognised complication of untreated gluten enteropathy.

DOB

[Editor’s comment: I suggest you visit the Celiac Disease Foundation and Celiac.com websites, and look at recent research at Celiac News and Information and Celiac at this website.

SS]