My 15-year-old son was diagnosed with Graves’ disease at age three and had his thyroid removed. He was diagnosed with type 1 diabetes at age 12 and diagnosed with asymptomatic celiac at age 14. He is IGA deficient. He has been gluten-free for nine months, but his transglutaminase (tTG) test was still very high. The doctor wants to do another endoscopy in June. Is it possible for the intestine to heal but the tTG to still be high? What else should we be concerned about at this point? I do not understand his doctor’s explanation as he just assumes that my son “cheats” on the diet, which he does not.

If the antibody tests, transglutaminase, are still positive, then there is some ongoing exposure to gluten occurring. Fillers in many foods, candy bars, pills or vitamins are common “errors.” Often, it will take 12 to 18 months to get antibody titers negative (below 20 in our laboratory tests), but this may also depend upon how high the titers were to start. Not much is related to symptomatic or asymptomatic. I would suggest going to the Celiac Society web site and really scrutinizing the lists to see what detective work you all can do.

SB
Additional comments from Dr. David Schwartz:

I agree completely with Dr. Brink. I would further underscore that a “positive antibody” test is NOT the same as having the disease. One can have antibodies to the insulin producing cells of the pancreas, but not (yet) have diabetes; one can have antibodies to the thyroid gland, but not (yet) thyroid dysfunction, etc. So, by and large, positive antibodies can be viewed as risk factors for the disease.

A complete gluten-free diet is really hard in this day of processed foods, etc. A nice study recently looked at other, non-gluten grain products (specifically oats) from several different mills in the US and in Ireland. There was STILL some gluten because of some mild, but detectable, cross-contamination from the grain-milling plants.

Finally, I am a little confused by the letter. Typically, tissue transglutaminase antibodies are primarily IgA. So to have positive antibodies and be reportedly IgA deficient does not make sense. But perhaps they have detected IgG-mediated tissue transglutaminase antibodies.

DS