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Return to ->Ask the Doctor->Tests and Their Results

QUESTION: I hope you can help me with this interesting dilemma. I have CD and my children were both recently screened as part of a first degree relative study (both are asymptomatic). My physician is well respected & extremely knowledgeable in the field of CD. I respect his opinion tremendously. My youngest son was screened for 2 antibody tests. Both are the most up to date screening tools that precede a formal biopsy finding. His antibody levels were so elevated that both my GI and my son's pediatric specialist prepared us for a positive biopsy result. Needless to say....4 pathology readings later, his biopsy results ware confirmed as completely negative. We have now been advised to keep him off a gluten free diet, as he does not manifest any signs of the disease. Why do I feel uneasy about this? Surely, I don't want him to be on a stringent diet if he does not have to but, I am fully aware of CD's relationship with other autoimmune diseases. To further complicate things, I have type I diabetes -which leaves me all the more apprehensive.

I would appreciate any feedback that you might have.
DR. RUDERT: In order to fully answer your question, it would be interesting to know which "two antibody tests" were performed on your son. Since both were supposedly "the most up-to-date screening tools that preceded formal biopsy" I would assume that the two tests could possibly be EMA (anti-endomysial antibody) and/or TTG (Tissue Transglutaminase). EMA positivity correlates strongly with total villus atrophy and I have only rarely heard of patients in whom blood testing was positive for EMA and small bowel biopsies did not reveal villous atrophy. In an individual with EMA positivity and a normal small bowel biopsy I would be concerned about "sampling error". By this I mean that the biopsy would be normal but possibly other biopsies would reveal the abnormal villi. It is important that enough biopsies be taken (I generally take 6-8 biopsies) and read by an experienced pathologist. If you have Celiac, your son would have a one in twelve likelihood of having Celiac Disease.

Celiac Disease is associated with other autoimmune disorders and the likelihood of their development correlates with the length of time one ingests gluten prior to the diagnosis. If one has Celiac Disease and is unaware and continues to eat gluten, this puts them at higher risk of developing another autoimmune disease.

Your letter poses an excellent question and I urge you to have him closely followed.