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Could It Be Dermatitis Herpetiformis?

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Hello all,

I found this site a couple of days ago and I must say what a wealth of information! I have just joined, and need to ask if anyone can help. I'm at my wits end with this, and it's starting to really effect me at work and in social situations....

About a year ago, I had some small blister type thing rise on my my face. It was about the the same level as the bridge of my nose, between my cheek and my nose. At first I thought that I had got some sort of fungi infection, and the Doctor also thought that (but I was in a country at the time with poor health system). After using the cream that given (which I think was just an anti fungi and steroid) it got a little bit better, but continually came back.

When I got home to the UK about 3 - 4 months later, it was getting considerably worse, extending over the bridge of my nose, and to the other side of my face. So I went to a dermatologist once I was home. Again, there was no really conclusion, she gave me a steroid again, with double base moisturiser. This again didn't seem to work too well, and by this time I'll a little reluctant to keep on using steroids.

This was going on for some time, and I never got to the bottom of it. One thing that seemed to help was small amounts of exposure to the sun.

Anyhow, at one point it REALLY flared up across my forehead, and on my cheeks and my nose. This time it showed no signs of going away at all.

At this point, my mother (who is celiac) was reading her Celiac subscription magize and came across an article about DH. This was the first I had ever heard of it. So I went to my GP in the UK, who gave it a cream with and Antibiotic, a steroid, and anti filamentary properties. Also antibiotic tablets and an antibiotic gel. I showed him the article and asked if it could be DH. He said it was very unlikely, but the can do a blood test. I've have test done before for celiac, and also a Biopsy years ago, which have all came back negative. And this one too came back negative.

Anyhow, with the pounding of antibiotics, the spots and blisters subsided, but only to return even worse as soon as the course was finished. Now there is problems on my eye brow and all over. It's such an unsightly thing on my face, and I've just started a now job in Asia, so I'm not hopeful about the knowledge about Celiac over there.

Now....the question. Can my blood test be negative, and my biopsy be negative, but still have Dermatitis Herpetiformis? My mother has always been adamant that I have celiac, because of always over sleep upset digestive system and a few other symptoms (which are light compared to hers when she get's glutened), but I have always taken the test results for blue.

Has anyone ever experienced anything like this, or have any info at all? I would be indebted to anyone that can help!

I know it's a long and maybe incoherent ramble, for which I'm sorry :|

Thanks,

Itchy Faced Tom

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Yes you can have negative tests and still have celiac. That is the case for up to 30% of us. Your derm can do a biopsy of the skin NEXT to an active lesion and tell the lab they are looking for DH. They need to do a specific test for DH to find it. Still a risk of a false negative though.

After you are done with all testing for celiac it would be a good idea to give the diet a try for at least a couple of months and see if it helps. It would be a good idea to avoid iodine during the trial as it can keep the antibodies active.

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