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I Don't Understand How My Son Tested - Three Times


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18 replies to this topic

#16 Darn210

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Posted 01 November 2012 - 04:53 AM

Hope everything goes smooth today . . . and hope you get some answers!!!
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#17 megsybeth

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Posted 01 November 2012 - 01:21 PM

So we're back and everything went well except for the poor GI and her team who had to deal with my unsuccessful home clean out and the nurse's two unsuccessful clean outs once we arrived. Well, you can imagine.

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.
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#18 Cara in Boston

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Posted 04 November 2012 - 06:25 AM

Good for you. Now that he is done with all the tests, you can go 100% gluten free with him while you wait for results. DON'T give up if the tests are negative. The "final" test is the diet. If he responds positively to it, you know what you need to do.

Cara
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#19 megsybeth

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Posted 04 November 2012 - 10:11 AM

Thanks, Cara. We'd already been pretty 100% gluten free at home since I went off and I took the baby off and was planning to take DS off after testing. My husband is really sweet and supportive. I told him that once my son is a little bit older we could probably bring regular bread back in the house, but right now he will just have too hard a time seeing his dad eat things he can't have. He said, no, I don't need bread.

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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