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Was It Dh?

KCG91

By KCG91
in Dermatitis Herpetiformis

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KCG91 Enthusiast
KCG91
Posted

OK so, when I was diagnosed DH was on my list of scary things to worry about at a later date. Now I keep thinking back to a horrible horrible skin problem I had two years ago, when I was very stressed and began having slight gastro symptoms. I still occasionally get much milder versions of the spots. 

It's around my neck and chest and it usually itches first, then teeny little spots (like actual small acne spots, either white or clear fluid) appear. These itch and can burst with a cracking noise (sorry, TMI). When this first happened the itching was so unbearable I remember running out of a lecture to cry and splash cold water on myself on the loo. Just couldn't bear to have anything (clothes) on the area. That lasted for a few months but now it isn't so bad - I would say for the last year to eighteen months (I was diagnosed three months ago and have been gluten-free since) I sometimes get the same thing but the spots are in much smaller quantities so the severity of the itching is less.

 

My doctor (prior to celiac disease diagnosis) diagnosed this as hives and then folliculitis. It isn't really a problem now (and the chances of seeing a dermatologist while it is active are next to none) - I just wondered what you guys thought.  

Apologies for all the 'just wondering' posts at the moment - now I feel that I have a good handle on the lifestyle I'm poking into other little curiosities a bit more!

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squirmingitch Veteran
squirmingitch
Posted

You'll probably always wonder. It's really hard to say. It could be & it could not be. It sounds like it very well might be when you describe it & how you ran out of the lecture & went for cold water & how you couldn't bear clothes on it plus the cracking noise when they burst --- I call it a popping sound but I could see it being described as a cracking noise. There can be many skin issues related to celiac. Bottom line is that you are gluten-free now & that's the answer to the whole shebang so just continue & be very vigilant about your diet or you might get that chance to find out it's dh & that's something you definitely do not want to do. And there's no point in trying to get a dx of it since you're now gluten-free b/c dh can't be biopsied after going gluten-free & it wouldn't matter anyway b/c you've already been dx'd celiac so you don't need any more than that. DH is not a separate disease; it is the skin manifestation of celiac disease. 

KCG91 Enthusiast
KCG91
Posted
  • Author

Thank you - and yes I probably will always wonder! I was just curious because I've never really got to the bottom of it, so thank you for your answer :) Yet another reason to stick to my guns over CC (I like eating gluten-free, but the three shared houses I move between are ... challenging!) I'll remind them how frantically itchy it was and would they really want to be responsible for that?! ;) One last question - does it definitely go away on a gluten-free diet, or does it linger a while? Just because I still get tiny break outs sometimes.

squirmingitch Veteran
squirmingitch
Posted

It can take up to 2 years or even longer for the antibodies to get out of the skin. That's why those of us with dh are truly rabid about not getting cc'd. The rash is sensitive to the tiniest amount of gluten & then you know what you get --- antibodies under the skin that will take ages to go away. I'm at 2 years & 2 months STRICT gluten-free on Feb. 1st & still have places but I gotta tell you ---- it's a darn site better than it was!!!!!!!

MGR Apprentice
MGR
Posted

Hi Katie,

Together with my gastric, joint, foggy, etc issues, I also get this burning, itchy painful rash around my body. I get it at the back on my to thigh towards the buttocks, around my neck, scull - the first thing is also this horrendous burning sensation, where the first thought is - I want to cut my leg/ head/ neck off to be free of this sensation. I also get them inside and around my mouth- it is the first think also that appears when I accidentally ingest gluten. I am still learning with this gluten free life and still seem to cc myself without realising and have got a beauty in and around my mouth at the moment- I just had a glass of fruit juice this time!!

I have seen photos with people with horrendous cases- i can't even start to imagine how they must feel! My uncle has also got it and he's had a really rough time with it, as he gets it quite badly! I am lucky!

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