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shelbysmom

Still No Diagnosis, With Positive Blood And Dq2

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I need some opinions from all you parents out there! My 2 year old daughter was given a celiac panel when she was in the hospital in January with a 15 day long stomach virus. The TTG came back "slightly high positive" and the EMA came back positive. She is also DQ2 positive. Her pediatric GI did the EGD the following week, and the biopsy came back negative. He says that her small intestines look perfect, he even did the special stains that there was absolutely zero damage! She is very symptomatic, with alternating constipation/mushy, stinky stools, stomach aches daily, mild bloating, small chest, low weight, irratability that I would call extreme at times, Reactive Airway Disease, and sick all of the time. Not to mention, the two stomach viruses that she has had in her life have lasted 10 and 15 days, with the rest of the family sick for no more than 36 hours! The docs explanation for the positive blood, but negative biopsy is that it could be a false positive blood panel. When I asked him, yesterday, how often he has seen a false positive TTG, he said just a handful of times. When I asked if how many times he has seen a false positive EMA, he said never! No diagnosis yet though! He wants to recheck her blood in May, and says if she is still positive, then he will diagnose her a celiac without another biopsy, as he would consider two positive blood panels a positive diagnosis. But why? Why do we have to wait if he has never seen a false positive EMA!!! He says I could put her gluten-free, as that is my choice, but if I can just wait it out a couple more months, we will have an accurate reading and diagnosis. He is sending me for a Celiac panel, as I already have autoimmune thyroid disease, and claims if I am a Celiac, then most likely my daughter is going to come back positive for sure. Did any of you have to go through months of waiting and giving your child gluten, before being diagnosed? Also, has anyone else here had a positive blood, negative biopsy child diagnosed a celiac.

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With a positive blood test and negative biopsy, many doctors will give a celiac diagnosis with a positive reaction to the gluten free diet. It seems like each doctor sets his own standard for making this diagnosis. Yesterday we heard of a doctor who would not give the diagnosis even with partial atrophy of the villi. In the experience of the posters on this board, a positive blood test that is a false positive would be extremely rare, even a TTG, let alone an EMA as well. With both blood tests positive, I would think a positive response to the diet should be sufficient. However, he is her doctor, and for a child the diagnosis is important for them in negotiating the school system and requiring them to provide for her special needs. You could either seek another opinion, or do what the doctor requests, but it does seem a shame for her to have to continue to suffer in this way. Bear in mind that the diagnosis is extremely difficult in children under five, that they often actually give false negatives.

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It seems like each doctor sets his own standard for making this diagnosis.

This is what frustrates me so much about diagnosis with celiac - it seems to vary on the doctor what is considered "good enough".

I would ask him "what do you think could be occurring now to raise her antibody levels that won't be occurring in May? what cause for change are you looking for?"

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We had positive bllod test, have the gene, and negative biopsy. Went to a new GI and he said they biopsies were not even done right, laid on the slide the wrong way, and the one he could make out did have damage. I would get another opoinion. We had to drive 2 hours to a bigger city and more educated drs.

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