Family History Mystery

[rhiwoman]

Both of my siblings seem to have Celiac Disease but neither has had a biopsy. My sister was suffering from extreme fatigue to the point that she could not go to work for three months before her doctor suggested removing gluten based on high anti-gliadin IgA and IgG levels. She rapidly recovered after going gluten free and now shows more typical digestive symptoms if she has any exposure. A few years later my brother began to rapidly lose weight for no apparent reason and also had extreme fatigue. His doctor ordered a tissue transglutaminase test which came back negative. However he removed gluten anyway and quickly recovered. Now he will vomit if he eats anything containing gluten.

I have a long history of food intolerances but decided to be tested for celiacs because of the family history. My anti-gliadin scores are identical to my sister's and my tTG is normal. I also had a negative biopsy. I continue to have irritable bowel type symptoms which improve and get worse in cycles, and now my three year old son is having persistent but not severe diarrhea. His tTG was negative and no other tests were conducted. His doctor suggests I put my family on a gluten free diet. I am reluctant to make the switch because if my son (or I) have Celiacs I want to make sure we permanently remove all traces of gluten from our diet, not exactly a low commitment exercise.

Does anyone else have Celiac like symptoms or a positive biopsy but with a negative tTG? Do we just wait until we get as bad as my siblings did to be sure gluten is the culprit? Is there any possibility that since I don't appear to actually have celiacs that just reducing intake of gluten would be okay? I certainly don't want to continue to do the damage that I know even a small amount of gluten causes someone with celiac disease but my negative biopsy confuses the issue. Thanks in advance for your suggestions, our doctors seem to be at a loss at this point.

[ShayFL]

Yes, it is a BIG commitment, but you will not know if you can get well unless you go 100% gluten-free. I dont have Celiac genes. I had negative bloodwork. Refused biopsy. But POSITIVE response to the diet. I will never look back.

[rhiwoman]

I suppose it is possible that only trying the diet will tell, but I'm afraid of an inconclusive result that would still leave me wondering. Is nausea a symptom of Celiac? I have been nauseous all of the time (and I'm not pregnant) but figure it could be environmental allergies or stress or something in my diet.