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DH or something else??

RY1974

By RY1974
in Dermatitis Herpetiformis

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RY1974 Rookie
RY1974
Posted

Could this be DH?  I also get this on my elbows, feet, behind knees, scalp, and my forehead.  Currently my dermatologist just says its contact dermatitis and is sending me to another allergist for a second option.

 

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squirmingitch Veteran
squirmingitch
Posted

Tell us how it acts please. Just looking at pictures doesn't give much info.

It could be, it could not be. The best way to find out is if you're eating a gluten diet to go to a derm & INSIST, INSIST on getting a dh biopsy. Make sure they do it right. Read a couple of threads here & you'll find links to info. that tells exactly how it's to be done and it's NOT ON a lesion so make sure they don't pull that little number on you. They work for YOU, not the other way around. Make them prove it isn't dh by doing a biopsy the correct way. Do NOT take any oral steroids or get steroid shots within 2 months prior. You're going to have to be extremely firm with them but don't let them deter you from the course. Challenge them to prove what it isn't because they can't prove it's contact dermatitis.

RY1974 Rookie
RY1974
Posted
  • Author

Extremely itchy and keeps me up at night to the point I was taking cold showers at 3am.   Currently my ears, scalp, feet, and chin just will not stop itching, my elbows have the rash and look purple. Eventually the rash will heal and leaves scars that seem to be purplish in color.

I have not tried gluten free diet yet.  Waiting for all the testing to stop.  The new allergist i am seeing tomorrow specializes in skin disorders.

squirmingitch Veteran
squirmingitch
Posted

I don't care what she specializes in, you MAKE her do a dh biopsy. I'm not being mean. Please understand that. It's just that I've heard this a thousand times before - no, a thousand one hundred! 

Here's another thing ~~~ get her to order a eTG aka TG3 serum (blood test). That is specific for dh. 

Oh gosh! Don't you just hate the ones in your ears???!!!!! Nah, we hate ALL of them! I swear though, when those suckers get going in & on your ears it just drives you stark raving mad!!!!!

You've convinced me there is more than ample reason to strongly suspect it's dh. 

Here's a tip..... the patterning the lab will be looking for is very easily destroyed by scratching so pick you out some prime places that are new & maybe, just maybe you haven't scratched them to smithereens thus far, and make some super thick gauze bandages & place them over those places so even if you reach to scratch (& we know you will! right?) the gauze will remind you & hopefully help to protect it. The biopsy needs to be taken from a clear area adjacent to a fresh lesion. No steroid creams okay? Not till after the biopsy.

BTW, if she wants to put you on steroids after the biopsy be warned, 99% of the time there is such a backlash of the rash the moment you go off the steroid that you will wish you were never born.

A dx of dh IS a dx of celiac disease & no further testing is needed.

Please come back & update us after you see her tomorrow. In the meantime you have my heartfelt sympathy. Take those cold showers & grit your teeth. Hopefully you will soon be able to go gluten free & start getting some relief. 

 

squirmingitch Veteran
squirmingitch
Posted

Oh, one last thing.....

ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.

cyclinglady Grand Master
cyclinglady
Posted
46 minutes ago, squirmingitch said:

Oh, one last thing.....

ICE PACKS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

You'll feel better. Hey, you have a tub? Want to join the polar bear club in the privacy of your own home? Fill that thing with cold water & dump a 5 or 10 lb bag of ice in there. I'm serious.

I sit in an ice bath after a long training (running or riding).  It speeds my recovery, I swear!  

squirmingitch Veteran
squirmingitch
Posted

Any news?

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  • 3 weeks later...
annacat4 Newbie
annacat4
Posted

I have a rash identical to yours and it is sooo itchy and burns and is hot! I get flare ups at random but always have itchy spots . My ears are always extremely itchy! Please let me know what your diagnosis was! 

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