Gluten Intolerance Vs. Celiac Disease

[aidansmom]

My son developed chronic diarrhea,anemia,anorexia and stopped gaining weight at 7 months old. At 14 months, he had elevated ARA, AGA IgA and IgG, but neg TTG blood levels. His biopsy showed mild blunting. Within 1 week of gluten-free diet, he returned to normal bowel movements and started growing but remains at 3-5% on height and weight. We were given the diagnosis of celiac disease.

He did great for 10 months and then again developed all of his prior symptoms. I was worried we were unknowingly contaminating him but now know it was due to the introduction of milk products. But our new pedi GI drew the genetic test in the meantime since his TTG was negative to begin with. The genetic test was negative. I reintroduced gluten per the request of the doctor and got horrible diarrhea immediately. Now, our Pedi GI wants us to go to an allergist but we have already been there/done that with all negative results. I emailed Dr. Fine at Enterolab who says it is gluten intolerance without celiac disease in addition to the dairy intolerance.

Can someone help me understand the difference? (I do realize the negative biopsy is part of the diagnosis). But, does this mean he could outgrow it? Does he still have the higher risk of other autoimmune diseases if he was not gluten-free? My family is all relieved but personally, I don't see much difference. So now I feel we are going to risk contamaination from family/friends.

Thanks so much!!!

Julie

[darlindeb25]

well, i'll try julie----gluten intolerance means he needs to be gluten free, that gluten is causing much of his problems--the difference between gluten intolerance and celiacs is just that he hasnt advanced yet to full blown celiacs--i'm sorry julie, but i think once gluten free he will always need to be gluten free--but healthy is so much better then living with gluten--i will never go back to gluten again--i hate to add this, but be very careful with soy too--if you switch to soy products instead of dairy--sometimes we are intolerant of soy too--there are other milks--rice milk, but watch for barley--almond milk--go to google and type in gluten and milk intoerances and see what you find---deb

[tarnalberry]

Don't forget that the genetic test isn't fool-proof. A few (<5%) of celiacs don't have the genes they've identified so far. The diet, and a dietary challenge, and blood tests have all clearly shown that his immune system reacts to gluten. He may never get the significant intestinal damage or he may - but the primary difference, as it's spoken about, is that straight up gluten intolerance without celiac disease is what you call it when you don't necessarily have and/enough intestinal damage. In the end, it all means he needs to avoid gluten. As for increased risk of other autoimmune conditions, I don't think enough study has been done on these sorts of "non-classical" manifestations yet to really say anything conclusive.