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March 11, 2006


Question from Central Islip, New York, USA:

For how long is a celiac test accurate? My son has type 1 diabetes and is on an insulin pump. He was tested about four months ago for celiac and it was negative; however, recently, he's been acting a little "off" and just isn't himself. He complains of stomach pains almost every day/night, has loose stools a lot, even though it's winter, looks real pale and has dark circles under his eyes (which he normally has, but when he doesn't feel well, they are darker), feels "warm" a lot, but doesn't have a fever, and just complains a lot of not feeling well. When I look up symptoms of celiac, he has a lot of them. His blood sugars are running on the high side, which I'll discuss with his endocrinologist to adjust the pump, but just because a test shows a negative result, can he still develop it? He will be getting an annual test, but if he is symptomatic, will they test him again sooner?


I would retest him just for the reasons you describe. The best test is a transglutaminase antibody. The other celiac tests can have high frequency of false negatives. You are also correct that previously negative tests may change for reasons that we do not really understand. Many of us are now doing routine annual transglutaminase antibody testing indefinitely until we have a better understanding of the risks. Also, we often find variant forms of celiac disease in those with other allergies as well as in other groups at high risk for autoimmunopathies: those with Turner’s Syndrome, Down Syndrome and anybody with Hashimoto’s thyroiditis as well.