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Too Late To Test For Dh...

gatita

By gatita
in Dermatitis Herpetiformis

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gatita Enthusiast
gatita
Posted

I've had this itchy rash for two years on my left upper back (right where I can't reach it, drives me mad!). Last year, another spot appeared on the back of my scalp. Early this year, another itchy patch on my lower right belly.

It's not symmetrical, and psoriasis runs in my family, so I figured it wasn't DH. But it looks nothing like my brothers' psoriasis, which is all red at first, then has big rough white patches in on it and isn't very itchy.

Here's the problem with getting a biopsy: I've been gluten-free for two months. So is it too late to get a biopsy? Does this even look like DH at all?

http://i1269.photobucket.com/albums/jj589/rashola/rash_zps0e5b5e4c.webp

Any thoughts would be appreciated, thanks!

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JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Gatita - Just your one picture looks so much like my rash (you can see more of my pics on the DH photo bank post). Not that that would be much help to your because I tested negative for DH, much to my surprise and disappointment. However I had been gluten-free for a couple years before getting the rash and there is a good chance the biopsy was not taken in the correct area. I suspect I had some cc in my breakfast cereal and that is what caused the outbreak. I stopped eating the cereal before the biopsy was taken. My rash was extremely itchy, very bilateral and on my neck, elbows, knees, hips, lower back neck and shoulders. Also, of note, for 4 or 5 years before my major rash came I would get an occassional rash here and there, very similar looking to the major rash but on a much, much, much smaller scale. I thought of it as bug bites, but in retrospect it may have been the beginnings of DH - all speculation on my part, though.

I understand the gluten antibodies live in the skin for 2-10 years and it would therefore make sense that the biopsy would continue to come out positive for that length of time but it usually doesn't. I honestly don't understand the physiology of why it doesn't, maybe there just aren't enough antibodies. SqirmingItch is very knowledgeable about this and will most likely have an answer for you. Or perhaps someone who has tested positive after being gluten-free will pop in.

If you can find a dermo in your area who is a DH pro go to him/her - they should be able to help you. Unfortunately a good number of dermos know diddly squat about DH (such as the one who told me I couldn't possibly have it because DH doesn't itch). The important thing it that the biopsy must not be taken from the lesion itself but from a clean area near the lesion.

squirmingitch Veteran
squirmingitch
Posted

Jane is right -- most derms don't know diddly squat about dh. I will add that the biopsy has to be taken from a CLEAR area adjacent to an ACTIVE lesion. Yes, in all probability you are too late to get a biopsy. As to why if the antibodies are still active in our skin for sooooo long & we still keep breaking out; we won't test positive on the biopsy I speculate it's because testing (biopsy) is not sensitive enough to pick up the antibodies. I sit here with a major outbreak like gonzo & think the same thing --- "Gee, I wonder if I went & had a biopsy now, wouldn't it, shouldn't it come out positive?" I got my outbreak from what I now call being "iodized". Too much iodine. But in my heart & head I know a biopsy would be negative. I haven't found anything in the medical literature that gives any hint as to why the biopsies at this point would be negative so I can only guess it's due to the specific sensitivity of the tests.

Here is a link that will explain much about dh.

I also think your photo looks like what dh looks like in certain stages. And I agree with Jane about the beginnings of dh & can now connect things that were taking place in my skin as pre or even early dh.

gatita Enthusiast
gatita
Posted
  • Author

Thanks so much to both of you. At least it's one more test I guess I don't have to take! I agree, it's strange that you can still have the symptoms but the test can no longer pick up the antibodies.

And I also thought of this rash as bug bites at first, but of course bug bites don't last a year or more, so that's when I knew this was something else. So far it's pretty small and with being gluten-free now, I hope it stays that way.

It is so frustrating to see so many doctors out there who are so clueless about all of this. I can't believe that about the derm who said DH doesn't itch!!! :blink:

Thank goodness for this site and you all!

squirmingitch Veteran
squirmingitch
Posted

Welcome to the board!smile.gif

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