So Upset

[mcs1984]

ok so i just need to vent, we went to the GI doctor yesterday after he doubled over twice at preschool. They did more xrays and everything came back fine. They got the results back from his scope and everything came back normal they said. They even told me that he did not have a problem with lactose (but he can not handle any kind of dairy besides cheese). I dont understand they sent me home with a pain med to help if he doubled over again but when i looked that up on webmd i am not comfortable giving it to him. The GI dr told us the next thing we should do is go see an allergy dr and get him tested that way, but i dont think i am ready to put him though that. I asked them to fax everything to his main dr and made a appt with them today she see what she thinks. He is already back off the gluten. I dont know what to do, i am so lost and upset that everything is showing norm and we still have no answer of why he cant go to the bathroom, why he has these mood swings, and why his poor little tummy is hurting so much. I dont want him to go though what i have gone though for 24 years.

I'm sorry i just needed a place to vent where other people understand what we are going though. thanks

[darlindeb25]

I'm sorry, I'm not sure if I have read your posts before. It sounds as though you have had him gluten free before, and if you are going to go back to the gluten free lifestyle with him, then it must work! You do what you know is right, he is your child. We celiac's go through false negative testing all the time. Sometimes, the results are only as good as the person reading the tests.

Dr. Peter Green was speaking at one of our celiac support meetings and was telling us about a patient who had an endoscopy done five times over five yrs with his own doctor. That doctor told him every year that he was fine, the test came back negative for celiac disease, the villi looked good. Dr. Green requested all 5 tests be sent to him and he told showed this man flatten villi on every single test, from 5 yrs back. His original doctor had no idea what he was looking at!!! How sad is that?????

So, don't give up. If your son is better on a gluten free diet, then live with that. Many people are gluten intolerant, and not celiac.