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DH Rash

Lynny

By Lynny
in Dermatitis Herpetiformis

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Lynny Newbie
Lynny
Posted

Hello, I  have been told that I do not have Celiacs by two derms who did blood panels.. which is great.. however this rash i get is most definitely DH. I have studied it on so many sites and its the only one that comes up. I can not figure it being anything else. My question to you guys is can I be sensitive to gluten and get this rash from ingesting it?  Not be a true celiac but gluten sensitive?? I have had stomach issues most of my life but nothing crazy, just tons of bloating and gassy symptoms. I do not have any bathroom issues.. just the skin.. Im struggling to try and figure this out before I lose my mind... Thanks! 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

Did you get skin biopsies?  Some celiacs are seronegative.  They might not even have intestinal damage.  Instead most of  the antibodies (and damage)  are in the skin.  I do not have DH, but suggest you scroll though the DK section and get tips.  Specifically on how to coach a derm properly on how to biopsy for DH (or find a celiac-savvy derm).   It is NOT the same for other rashes from what I have read. 

I do not think a person with a gluten sensitivity can have DH because DH is celiac disease.  It just presents differently.  

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I hope you find relief!  

Metoo Enthusiast
Metoo
Posted

Hello.  If you really think its DH, and the dermatologist doesn't give you another answer.  Then you could ask for a dapsone trial. 

I had negative skin biopsies...however it was the most intensely itchy rash of my life, after being gluten free for 2 weeks and ingesting gluten it got worse.  Since my derma was stumped, he let me try dapsone.....which cleared the DH, well mostly still on dapsone.  I now have a positive DH diagnosis and celiac diagnosis even though the biopsy was negative.

My derm never did the blood work to check before the skin biopsy.

selectivefocus Enthusiast
selectivefocus
Posted

There are theories out there stating that non celiac gluten sensitivity simply means your body isn't damaged enough to pop hot on blood tests. All that's really saying is if you keep eating gluten, you're just as bad off as a celiac who has been diagnosed.

Do you really need a definitive diagnosis to change your diet and  see if that helps your rash? You don't. I am celiac. My daughter had what looked to be DH for over a month, and her pediatrician would not test her for celiac. She said she didn't present as a typical celiac so she wouldn't test her. I changed doctors, but I immediately took her off gluten in the meantime. The rash was gone within a week.

You don't need a doctor to change your diet and see if it helps. 

 

  • 4 weeks later...
Sonnyvitoleo Newbie
Sonnyvitoleo
Posted

Yes, I have had skin biopsies but it was negative. Would an endoscopy be the only way to rule out or in DH?

Olivia Newbie
Olivia
Posted

What did yr skin biopsy show if it didn't detect DH? I have celiac disease as well as DH... the rash from hell. Dapsone was a G-d send. I had DH for 4 yrs before I was diagnosed w/ celiac. If you do have celiac related DH eating gluten for 3 weeks prior to an endoscopy will be horrible for you. I don't think taking dapsone is a good idea if your rash is not celiac related as it makes you very anemic. I didnt realize how dangerous anemia was until I ended up in the hospital. You need constant blood work done every month to monitor your levels. I would find a dermatologist & a gastro dr versed in celiac. They are hard to find but they are out there. Good luck.

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