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Beatrix Q

Help! Need Advice On Testing And Doctors

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Hello all

I have a question mainly about diagnosing.

We have a almost 2 year old who had been gluten-free for almost a year now.

Around when she was 13 months, she started this horrendous (yet oddly gritty) gurgling diarrhea, and started randomly puking 5-7 times a day, she was also COVERED in a spotty type itchy rash. she was miserable like this for about 6-8 weeks and then I finally made a Dr appt.

Anyway, I thought she was lactose intolerance, but the doctor didn't think so. Since we have a family history of celiac, she suggested trying to cut out gluten, and she did the blood test for celiac too.

When the blood test came back negative, she retracted her "perhaps its gluten" train of thought.

But, we clearly saw immediate intestinal relief for her and couldn't believe it. Within a couple of weeks, the rash was gone too. I decided to stick with it, even though the pediatrician wasn't too keen with it. It was so clear to us, and the difference was literally night and day.

Now we can tell immediately when she gets 'glutened', (She gets a rash on her nose and around her mouth, also a butterfly type rash on her cheeks. (not to mention sandy loose stools for the next couple days at least) She also seems completely out of control, like in some manic crazy state whenever she gets into it.. (?)

I also got off the gluten since I have been battling horrible gut aches and diarrhea pretty much as long as I can remember, and it just made sense all the sudden.

We recently took our two older girls off of it and got it out of the house completely because the eldest complains constantly about a stomach ache, and hand and bone pains...?

We are hoping she gets some relief.

OK, so to get to my point!

We are trying to decide what our next move is.


How? What type of Doctor would we even see? A rheumatologist? Genealogist? Gastro? Just a more informed general practitioner?

What about entrolab? I know they don't test for celiac exactly, but rather 'just' gluten intolerance.

Now that we know the 'standard' blood test blows, we want to find an informed doctor who knows that it's not very accurate too, and will try to work with us to find answers.

Testing is only important to me to know just how cautious we need to be. I would also like to know if its an autoimmune disorder.

Please give me any advice!

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