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T Skinner

Unsure If My Son Has Celiacs

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We have a 5 year old son with Down Syndrome. In New Zealand screening for Celiac is a routine test for children with Down Syndrome. In May of last year our son had all his usual tests and this time the Celiac screening test showed his TTG level was 80. They retested his bloods in July 08 and they came back TTG 118. His pedetrician was sure he had Celiac from these results although our son showed no other signs. No problems with tummy pains, bowel, growth etc. The following month he had several biopsies removed and they all came back clear with the surgeon saying his gut looked fine and he believed he definately didn't have Celiacs. In October he was retested and his TTG level was 58 still higher than the normal 0-20 range. His new pedetrician said this level was still too high and recommended we trial him on a gluten-free diet. He has been completely gluten-free since then. In March 09 his TTG level was 39 and today the result is TTG 40. My question is Do you think he has Celiacs? I would have thought with the surgeon saying his gut was clear so no damage had been done that being now on a gluten-free diet for 9 months would have shown a much lower TTG level if he did have Celiac. Does anyone know if a higher than normal TTG level could relate to anything else? We are not sure what to do as if he is not Celiac obviously we would certainly prefer to take him off a gluten-free diet. Thanks for any help.

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