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So Is This Dh?

bigkane

By bigkane
in Dermatitis Herpetiformis

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bigkane Newbie
bigkane
Posted

My wife has been telling me for a couple years now, that she suspects I have celiac disease. Now I have developed a really aggravating rash, it's very itchy, and even though I haven't been scratching it, it's raw. My question is, does anyone think this is DH?? Open Original Shared Link

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rosetapper23 Explorer
rosetapper23
Posted

Yes, I think it's QUITE possible that you have DH. Have you considered going on a gluten-free diet? If so, please eliminate iodine for a while, too, since it exacerbates DH. (P.S. Give your wife a kiss! She's a smart lady!)

squirmingitch Veteran
squirmingitch
Posted

Yes, I think it's QUITE possible that you have DH. Have you considered going on a gluten-free diet? If so, please eliminate iodine for a while, too, since it exacerbates DH. (P.S. Give your wife a kiss! She's a smart lady!)

Ditto!

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Well, it's sure in the right spot for DH. Do you have it anywhere else? It looks similar to my rash. I'd say the only way to know for sure is to have it biopsied but unfortunately that isn't always accurate.

Jane

bigkane Newbie
bigkane
Posted
  • Author

Well, it's sure in the right spot for DH. Do you have it anywhere else? It looks similar to my rash. I'd say the only way to know for sure is to have it biopsied but unfortunately that isn't always accurate.

Jane

Thanks for the replies. I currently have it also on my inner thighs on both legs midway down to my knee, and it's starting in my underarm area as well. I went to the Doc today and he's sending me to allergist. So we'll see what's going on hopefully. He did prescribe a steroid dose pack, but I'm not sure if that'll help.

rosetapper23 Explorer
rosetapper23
Posted

If they end up doing a biopsy, INSIST that they biopsy the clear skin NEXT to the lesions. If they biopsy the lesions themselves for DH, they will come up as false-negatives. Very few dermatologist know how to correctly biopsy for DH. Good luck there!

JaneWhoLovesRain Enthusiast
JaneWhoLovesRain
Posted

Thanks for the replies. I currently have it also on my inner thighs on both legs midway down to my knee, and it's starting in my underarm area as well. I went to the Doc today and he's sending me to allergist. So we'll see what's going on hopefully. He did prescribe a steroid dose pack, but I'm not sure if that'll help.

Someone correct me if I am wrong, but I believe should it come to you having a biopsy the steroids will affect those resuls (false negative). Just something to keep in mind.

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rosetapper23 Explorer
rosetapper23
Posted

I think you're right--steroids might skew the biopsy results. The poster should have been referred to dermatologist and not an allergist.

squirmingitch Veteran
squirmingitch
Posted

Steroids, topical or oral will make a biopsy of the rash, or a celiac blood panel or an endoscopic biopsy NEGATIVE. No steroids should be used for 2 months prior to any testing.

Yes, the op should have been referred to a dermatologist.

And to top things off; generally celiacs with dh test neg. on the blood panel & endoscopic biopsy.

AND for the skin biopsy you MUST be actively consuming gluten or else you get a false negative.

Some links:

Interesting Reading on DH:

Descriptions of DH Types:

Help for the Itching, Stinging, Burning, Pain of DH:

DH Photobank:

Newbie 101 for celiacs

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      Thank you so very much Scott.  Just having someone understand my situation is so very helpful.  If I have one more family member ask me how my little itchy skin thing is going and can't you just take a pill and it will go away and just a little bit of gluten can't hurt you!!!! I think I will scream!!
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      It is difficult to do the detective work of tracking down hidden sources of cross-contamination. The scenarios you described—the kiss, the dish towel, the toaster, the grandbaby's fingers—are all classic ways those with dermatitis herpetiformis might get glutened, and it's a brutal learning curve that the medical world rarely prepares you for. It is difficult to have to deal with such hyper-vigilance. The fact that you have made your entire home environment, from makeup to cleaners, gluten-free is a big achievement, but it's clear the external world and shared spaces remain a minefield. Considering Dapsone is a logical and often necessary step for many with DH to break the cycle of itching and allow the skin to heal while you continue your detective work; it is a powerful tool to give you back your quality of life and sleep. You are not failing; you are fighting an incredibly steep battle. For a more specific direction, connecting with a dedicated celiac support group (online or locally) can be invaluable, as members exchange the most current, real-world tips for avoiding cross-contamination that you simply won't find in a pamphlet. You have already done the hardest part by getting a correct diagnosis. Now, the community can help you navigate the rest. If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch:  
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