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Venting~no Dx Yet

ryebaby0

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ryebaby0 Enthusiast
ryebaby0
Posted

Grrrrrrrrrrr.....in late August, my husband went in for a celiac screen (my son was dx 12/03) and the tests came back "inconclusive". (Gliadin IgA negative--but present, IgG very postiive, and tTg "borderline" i.e between 20 and 24) Soo, the family doc wanted to scope him, I said how about we run EMA and the genetic DQ tests first? (This was in early November, the first time they had time to see him after the August results) The doctor agreed, we got the script for a full 5-test celiac screen.

So, he went back in a month ago, got stuck again. We waited. And waited. And called, and called, and called. First, the results weren't back. Then they were in the wrong file. Then they were "doing research", then it was "the lab ran the same tests but they have different names, so we're researching whether they are the right ones" and FINALLY this week the doctor's office says "they only ran the IgA and IgG and tTg, your insurance won't cover the rest" which is complete garbage........ They offered to have him come in AGAIN and get stuck AGAIN and they would "let" us pay for the tests.

We switched doctors :) but are wondering the value of an "official" dx at this point. The second tests did show a still-elevated IgG and a tTg that is now 24. DH is asymptomatic, but the tTg makes us think that he is sustaining damage that is just not bad enough to show yet. Yet being the operative word!

Suggestions, input, advice?

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