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#1 Jinxy'sMom

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Posted 12 October 2004 - 04:03 PM

Hi to all. My name is Heather, and I am expecting to get a celiac disease diagnosis shortly. I had some tests done at the beginning of the year, the IgA and IgG were mildly positive, but the tTg and the rest were neg. At that point I had no symptoms other than a vitamin B deficiency for years and years. I have in the last 6 months developed what appears to be DH - it looks exactly like the pictures I've seen. It comes and goes, but seems to be staying for now. Based on what I've read, I think my case is relatively mild since it's only a little itchy. I'm going in to see my GP on Friday to ask for a referral to the gastroenterologist. I don't think it's necessary to have the skin rash biopsied, since most things seem to be pointing to celiac disease. I also have T1 Diabetes which I understand is a risk factor.

Does anyone think I should see a dermatologist as well?

Much as I would rather not have ever heard of celiac disease, I have learned that it's best to face up to health problems and deal with them straight up. I look forward to becoming an active member and making some new friends.

Oh, and that's my Jinxy in my avatar, ain't he a handsome fellow?
Jinxy's proud mom
Heather
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#2 lovegrov

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Posted 13 October 2004 - 05:45 AM

Actually, a DH diagnosis might be less expensive, easier and less invasive. According to all the celiac experts, if you have DH you have or will have celiac. The recent NIH consensus conference on celiac even wrote into its report that a biopsy is not necessary for anybody diagnosed with DH because that in itself is a diagnosis of celiac. And the prescription is the same -- go gluten free.

richard
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#3 Jinxy'sMom

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Posted 13 October 2004 - 08:34 AM

That's interesting, Richard, thank you for your reply.

I'm obviously not as informed as others, but I'm concerned because I've read that quite a few folks get misdiagnosed from skin biopsies not being done correctly. Right now the rash isn't too bad, but I want to get rid of it as soon as possible. When I ended things w/ the GI earlier this year, he wasn't opposed to an endoscopy and I kinda feel like it'd be best to have a concrete diagnosis, plus, who knows how long this has been going on? What if there are some cancer cells in there? Wouldn't it be wise to check just in case?

Jinxy'sMom
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#4 lovegrov

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Posted 13 October 2004 - 08:48 AM

If your doctor wants to do the endoscopy to check for other things as well that would be between you and him.

A warning that the small bowel biopsy isn't always accurate either. Doctors take too few samples or the samples they do take miss the damage or the lab can even misread what they get.

richard
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#5 Jinxy'sMom

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Posted 13 October 2004 - 08:58 AM

Definitely food for thought. I have to wonder, though, if my ins will cover my gluten-free sessions w/ my dietician if there's not an absolute dx of some kind.

Guess we'll see on Friday. This'll be pretty much the first time I've met this doctor.
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