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My two year old son has been on a gluten free diet for three months now.  When he was 16 months old he began having chronic diarrhea (4-7/day).  He was tested for all kinds of foreign bodies and bacteria.  All tests came back negative.  Some tests were repeated.  All negative.  My brother had been diagnosed with celiac as a child.  He has since had blood tests and biopsy in adulthood which all came back negative) A friend whose child has celiac told me I should have him tested considering family history and the similarity of symptoms he shared with her daughter.  Blood tests were done only to find that Ben was IgA deficient.  We then tested for IgG.  He had elevated levels of IgG which warranted performing an endoscopy.  No villi flattening was found, but elevated levels of a particular enzyme which tends to be higher in Celiacs was detected.  The Gastro Dr. could not tell me he did have Celiac, but he also could not tell me he did.  So with a diagnosis of IBS we went home confused hoping we were doing the right thing.  I could not rest, though.  So after many conversations with our Pediatrician and the Gastro Dr., they encouraged us to try the diet. We knew that autoimmune diseases can be very illusive in the pediatric stages.  So, we decided to try the GF diet for a eight week trial.   After four days of being on the diet, Ben went from 4-7 bowel movements/day to one!  

So after all this background, my question is:  Have any of you out there experienced this same atypical celiac presentation with your children's diagnosis?  If so, how did you proceed?  Did you seek Genetic testing? Are their other tests available?  Some additional info on our son is he never experienced any weight loss or height drop off.  He is 95th percentile in height and weight.  Any advice you have would be helpful.

Gratefully,

Melissa

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