Update: Well, I'm kind of happy to report that all of this led to as close to a diagnosis as I'm ever likely to get! As I've written in a separate thread at http://www.celiac.co...cause-ttg-rise/
my daughter (with biopsy-diagnosed celiac) recently had a doubling of her tTG for no apparent reason. One thing led to another, and I eventually discovered three certified gluten free products that we were using that contained tiny amounts of trace gluten, less than 20ppm. Two were flours and one was a spice. We only used small amounts of these - and again, they were certified by the GFCO and not mislabeled by FDA standards. We're talking really tiny amounts here! But I removed these products from our diet, and just three weeks later my daughter's tTG had fallen again. Her local GI and a celiac specialist at a reputable children's hospital have both agreed that the trace cc less than 20ppm is almost certainly the cause of her tTG rise.
And the thing is that my fat malabsorption went away once we eliminated these too! I haven't had the fecal fat test redone, but the problem is obviously solved, and everything seems completely normal - for the first time in as long as I can remember. I am thrilled. My own GI looked at this evidence, after having ruled out every other cause of the fat malabsorption that she could think of. And she looked back at my health history (including the long gluten-light period before testing), biopsy results, and vitamin and mineral tests and concluded that I have "presumed celiac". She said she was documenting it in my chart. It's not a "real" diagnosis by prevailing standards, but she finally concluded (and I totally agree) that the overwhelming weight of the evidence points to celiac, and indicates that my tests were most likely false negatives.
Separately, the celiac specialist we just saw for my daughter heard just the basics of this story - including the fact that only 4 biopsy samples were taken for me, and none from the duodenal bulb - and said that I should obviously assume I have celiac too. And he wasn't put off by the fact that I have DQ 7.5 (i.e., only the alpha allele of the most common celiac gene).
I am so relieved to finally have a somewhat-official diagnosis in my chart. Although it makes no practical difference in what I do - I'd already realized that I have to be just as strict about the diet as my daughter, and was doing that anyway - it is just a huge relief to have that recognized as necessary by doctors. After 34 years of doctors dismissing my symptoms and thinking it was all in my head, I'll hopefully never have to hear that again!
greenbeanieMember Since 10 May 2013
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