I Don't Understand How My Son Tested - Three Times
Posted 01 November 2012 - 04:53 AM
Experience is what you get when you didn't get what you wanted.
Posted 01 November 2012 - 01:21 PM
Right before the procedure I handed the GI my lab results showing pretty clear positive on the full celiac panel. She was taken aback, "You have celiac!". Yes, that's why I told you last week I have celiac. And that's why I faxed the results after talking to your nurse three weeks ago. And that's why I faxed them again after telling you that I have celiac last week. And that's why I'm handing them to you a third time...
I then said, "It seems like I had lots more tests done, how about we do all those tests on him today while we have him under." She said no at first that she would suggest I get the gene test (ummm). But after the procedure she told me that she would order the gene testing on him and the full celiac panel, the "plus" panel, from Prometheus. I'm very happy. I asked her about other conditions and she doesn't think Crohns or colitis I guess because she doesn't think they could hold in stool. But she took some biopsies from colon for microscopic colitis.
Nothing stood out visually, a little redness that might be inflammation in colon and in esophogas and she took lots of biopsies, scattered in the upper intestine. She also said she requested lab to do special staining to look for is it "lymphocites" (sp)? Some sort of celiac marker.
Posted 04 November 2012 - 06:25 AM
Posted 04 November 2012 - 10:11 AM
I'm just trying not to get too hopeful. I know gluten-free will help with the diarrhea since it did for the one week I took him off. But I would be so happy if it would help him grow, concentrate more and have less clumsiness.
Either way, I have him scheduled to see a celiac specialist GI at the end of the month. I figure if she specialized in absorption issues, even if it's not clear celiac, she can help me test for deficiencies and monitor levels, which other doctors seem to have ignored.
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