Misdiagnosis?

[Linda03]

Hello all. I am Linda, and new to this site. I found it out of desperation. My son who is now 7 years old, was diagnosed with Celiac's Disease just before he turned 3. He went on a GF diet, and the only symptoms that got better were the vomiting and diarrhea. So, this led to another diagnosis of Lymphocytic Colitis.

Four years later, and he is anemic, sometimes, has joint pain, headaches, dizziness, and his bm's are never what I would consider normal, although they are not diarrhea. I took him to yet another gastroenterologist, who found blood in his stool. so, we started all the testing over again. His celiac panel came back normal, of course he was on a gf diet for years, but the Dr said that the chances of him getting no gluten are slim, did all the scopes, and other testing, stool tests, and are waiting for another celiac panel, now that he has been eating gluten for a while.

I expected him to get sick with his first bite, but no new symptoms, just the same ones, joint pain, backaches, dizziness, abnormally colored bms, and his anemia. I just don't know what to think. At least when I was sure he had Celiac's I knew how to deal with it. Now I'm not sure. Has anyone else had these symptoms? Maybe I should be seeking another diagnosis?

[Pattrish]

I'm so sorry to read how ill your DS is. I wish I had a possible solution for you. I think my questions would be...what type of diet (besides GF) is he on? Do you keep his meals simple (no additive-type foods - nothing processed)? Do you live in a city where they have a large research hospital?

I'd say "yes" search for other medical help. Something serious is going on. And, I wish you the best of luck finding help for him. You have to be beside yourself with worry.

Glad you found this board. I'm sure I won't be the only one to comment and, perhaps, offer more help.
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[Linda03]

He was on just a GF diet- which as you know means lots of fresh fruits and veggie's and no processed meats. He generally ate the same things, very limited selection. Now he is eating gluten, and lots of it, and he has no new symptoms- no vomiting, diarrhea, or flu-like symptoms. I would think that if it were Celiac's he would be very sick right now. I live in Ft Hood Texas, we've been here since September of last year. I don't know of any research hospitals around- but I am definitely going to find out for sure now. Thanks so much for your reply, I appreciate any ideas or suggestions, cause I am very worried.