My son is 11 and was diagnosed with type 1 four years ago. He has a small frame and weighs 62 pounds. At our last visit with our pediatric endocrinologist, blood was drawn for a antigliadin antibody to test for celiac disease. The IgA was 1.8 and the IGG was 1.3. I was told this is moderately positive and that in three months we would test again to see if there is another positive result. He does not have any intestinal symptoms; just lack of gaining much weight at all and swinging blood sugars (which has been going on for a while). What other tests should be considered? I know a biopsy ultimately diagnoses celiac disease. Is it proper to wait three months for more tests or is this something that should be dealt with sooner?

The history you give suggests that your son does indeed have what is now called the Autoimmune Polyglandular Syndrome Type II. This is a condition where a number of autoimmune conditions are grouped together. Diabetes is a common but not invariant component. Where diabetes is present, about 8% will have a positive test for the celiac syndrome. Hypothyroidism is also common, and, occasionally, there is evidence of adrenal insufficiency.

For the present, I would talk to your son’s pediatric endocrinologist about some further laboratory tests. First of all, the antitransglutaminase test is considered more specific than the anti-gliadin one. It is soon likely to supplant the need for a biopsy. Also, you might also wish to consider tests for hypothyroidism, for anti 21-hydroxylase, an indicator of potential adrenal insufficiency and for anemia. Arthritis, aphthous stomatitis and ankle edema are other clinical signs to be on the look-out for.

In view of the fact that your son does now show some symptoms of celiac syndrome in that he is apparently in not very good diabetes control and that his weight is only on the 5th percentile for his age on the growth chart, it would be appropriate to consider the next stage which is usually to get a biopsy to see if there is the typical flattening of the intestinal mucosa. I don’t think there is any harm though in delaying this decision until the additional test results are back. Indeed, while many centers would go ahead with this procedure on the present evidence, there are some who, if the antitransglutaminase test comes back at a high titer, would move straight ahead with dietary treatment. Some families might await events, if there were no symptoms.

The gluten free diet is a very effective treatment, but it is a significant burden, especially on the family member who prepares the meals. You will need the help of an experienced dietitian. I am sure too that you would find support from other mothers through this web site. Other contacts that you might like to get in touch with are http://www.celiac.com and The Celiac Disease Foundation (13251 Ventura Boulevard, Suite 3, Studio City, CA 91604-1838; telephone 818-990-2354). Also, The Gluten Free Pantry, Incorporated (P.O.Box 840, Glastonbury, CT 06033) for books, baking instructions, utensils etc. Finally, there is Gluten Free Living (P.O.Box 105, Hastings-on-Hudson, NY 10706).

DOB