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Has anyone ever had a small bowel biopsy come back negative for celiac but then have a buccal smear come back positive? I just got my results from my endoscopy/biopsy come back negative for celiac. I cried. I have an autoimmune skin disease that is horrible, and I want so bad for it to be dermatitis herpetiformis because this would suggest that I can help or cure it by going Gliten free.

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Did you have serology done?

If so, was any of it positive?

Have you had the rash biopsied for DH?

The smear you're taking about is a DNA test?

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Yes, DNA test. my gastro told me its the next and last step when it comes to testing for celiac. We would have to self pay.

I have had the rash and blisters biopsied seven times. I've been to four dermatologists. The last one named what I have but even he is guessing as he says I've had it for so long that my cells have changed and he doesn't know what it looks like. He has even shared my results with a panel of docs for answers, to no real avail.

Did you have serology done?

If so, was any of it positive?

Have you had the rash biopsied for DH?

The smear you're taking about is a DNA test?

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Well, what name did he give the rash? Is it a differential of DH?

Genetic testing tells you if you carry the most common genes associated with Celiac disease, it doesn't tell you of you HAVE celiac disease. The genes indicate you may develop celiac disease, not that you do have celiac disease. And, some people have genes that are not common - especially people of Asian ethnicities. They are looking at some different genes there. There are a small percentage of people without the typical dq2,8 genes who are dx'ed with Celiac.

Also, DH people are harder to scope since damage tends to be patchier. They also test negative on at least one test (commonly) and are more likely to test positive on others. What tests did they run? I assume they biopsied your skin specifically for DH?

Have you tried a gluten-free diet to see if it helps? What about a low histamine or amine diet? Does the rash respond to iodine?

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Wow, Pricklypear, you are a wealth of information. No, my dermatologists did not screen specifically for DH. This disease started two years ago. My PCP referred me to a dermatologist, who then referred me to another and then to another and so on. Everytime I would mention to the last one, who I've been seeing the longest, about celiac and DH he would just say he didn't think so, there was no point. Perhaps I should trust be knows what he's talking about, I just figured maybe the easiest answer could be possible.

Also because weeks before my first blister, I had just had surgery and thought that could have triggered the disease as well.

Anyway, I recently went back in to my dermatologist because I and had my baby and he wanted me wean off the prednisone again and back onto dapsone. Before he came in, another dermatologist I had never seem came in first and asked if I had ever considered going gluten free. I said no and that I had mentioned it to my doc several times. She winked at me and said, go see a gastroenterologist. And I said something else, and she just whispered again... Go see one. So I did.

He immediately thought it could be celiac and DH. So I guess I need to ask more questions about the specific tests they have done. I've had my blood taken numerous times. When pregnant I got a blood allergy panel done, and came back with moderate allergy to yeast, whey and dairy and a couple other things. But I also have been on prednisone for two years and was told it could skew results.

Well anyway, that's a long post, so I have some thinking to do and information gathering, the diagnosis I was eventually give was Linear IgA bullous dermatosis even though I don't feel like that's what it is from the studying I've done. It doesn't even look like it, but I'm no doctor. Very frustrating and lonely sometimes. But through the magic of prednisone and dapsone, I'm leading a pretty normal life at the moment, sometimes things get very bad and I feel terribly low, but here and now, I'm doing well. Just wish I could have more control over my health.

Well, what name did he give the rash? Is it a differential of DH?

Genetic testing tells you if you carry the most common genes associated with Celiac disease, it doesn't tell you of you HAVE celiac disease. The genes indicate you may develop celiac disease, not that you do have celiac disease. And, some people have genes that are not common - especially people of Asian ethnicities. They are looking at some different genes there. There are a small percentage of people without the typical dq2,8 genes who are dx'ed with Celiac.

Also, DH people are harder to scope since damage tends to be patchier. They also test negative on at least one test (commonly) and are more likely to test positive on others. What tests did they run? I assume they biopsied your skin specifically for DH?

Have you tried a gluten-free diet to see if it helps? What about a low histamine or amine diet? Does the rash respond to iodine?

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Effin a.

You respond to dapsone?

They biopsied your skin and intestines while you while on pred or just coming off????

Well, unless you've been off pred and ALL STEROIDS, even topical - for a long time don't bother with testing.

Get your test results. See what they did. But if you have a dx of Linear by biopsy that's one hair off DH - and the test is a subjective one - meaning someone is making a judgement call. Find out if they did a differential for DH when they did that biopsy and test. You may have ro call the lab and ask them directly.

If you can live on dapsone a bit and are back on gluten (and you're off steroids a long time) and they did the wrong (incomplete) serology you may have a slight hope. Get your labs, post them here.

Effin a. That derm could have ordered serology. Effin a.

Yes, I think there's an excellent chance you have DH. I'll double check but I don't think linear iga responds to dapsone. EDIT : just checked and Dapsone is used with linear iga so that doesn't help differentiate.

Any chance you can go back to the other whispery derm and get a dx from HER???

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Something else - if they took the linear iga biopsy from the lesion itself it would probably not show DH because a DH biopsy comes from the clear skin next to the lesion - because the lesion degrades the iga pattern.

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Here are the testing procedures for both DH and linear iga:

http://m.arupconsult.com/Topic_DermHerpetiformis.html

http://m.arupconsult.com/Topic_LinearIgADz.html

It looks like the biopsy should be good to see DH if they took it correctly. I'm guessing they didn't get far enough away from the lesion to see the DH pattern OR they took it from an area that had been inflamed. That's the EXACT problem my derm warned against trying to biopsy me because of the nature of my rash. Where did the clear skin start where the granular iga hadn't been destroyed? Or, if you were on steroids that could have affected it also.

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