Last spring my son (who has type 1 diabetes) was positive for celiac antibodies, and we saw a gastroenterologist who said that we would have to do further tests to confirm celiac disease, but he wasn’t in a hurry to do so. He said that he wasn’t opposed to leaving it alone for now and not finding out for sure, but if we decided to have the diagnosis, he would have to start treating it. What do you recommend? Are there any studies showing any reason for early treatment?

The antibody testing for celiac disease is highly suggestive, but I believe it is not diagnostic. I believe that celiac disease must still be a biopsy proven diagnosis.

I do not know why the gastroenterologist is not “in a hurry” to make the diagnosis (it would involve endoscopy), but I actually do not think there is a rush either, unless your son’s diabetes was having difficult control. Because of the potential malabsorption that could accompany celiac disease, the patient might be at risk for hypoglycemia. On the other hand, why was celiac disease considered? If it was “routine screening” then I think the gastroenterologist can wait, as noted above. But if your son were having intestinal or abdominal symptoms, I’d want the diagnosis confirmed.

The treatment for celiac disease hinges on a diet that is void of certain grains, usually wheat and barley. However, if you start that diet, then the telltale signs of celiac disease on the biopsy might be masked. Therefore, I would want the diagnosis confirmed before starting the dietary restrictions. Have a frank conversation with your son’s pediatrician, pediatric endocrinologist, and pediatric gastroenterologist as to what the plan will be and when.

DS