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Finally, A Diagnosis Of Dh

mamasaidso

By mamasaidso
in Dermatitis Herpetiformis

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mamasaidso Apprentice
mamasaidso
Posted

I am just a few weeks into celiac diagnosis and yesterday my new dermatologist confirmed DH on my arms. That's the only place I have rashes. The itching and burning is starting to ease up a bit on the diet. She gave me TMC-compound to relieve itching and seems to work. I've had five years of wondering what this is and no doctor has been able to diagnose it. So I'm hoping when it clears up i can have chemical peels to help with the scars. Would be nice to wear short sleeves again. I'm just relieved to finally know what this is.

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Ursa Major Collaborator
Ursa Major
Posted

Congratulations on your diagnosis. Even though having celiac disease isn't fun, it is good to know what to do to feel better. I hope your rashes clear up soon.

You do know that it can take one to two years for deposits under the skin to clear, and outbreaks are still possible during that time, right? Mind you, they will likely be milder, and it doesn't have to happen.

Plus, when you get glutened (which is pretty inevitable) you might get outbreaks.

ravenwoodglass Mentor
ravenwoodglass
Posted
I am just a few weeks into celiac diagnosis and yesterday my new dermatologist confirmed DH on my arms. That's the only place I have rashes. The itching and burning is starting to ease up a bit on the diet. She gave me TMC-compound to relieve itching and seems to work. I've had five years of wondering what this is and no doctor has been able to diagnose it. So I'm hoping when it clears up i can have chemical peels to help with the scars. Would be nice to wear short sleeves again. I'm just relieved to finally know what this is.

It is good you finally know. You may want to watch out for iodine in salt and in stuff like vitamins for a bit. I would rethink the chemical peel idea. The scars will fade and if they are really troublesome there are cosmetics that can cover them. You don't want to risk furthur damage by burning the skin. Be careful of all toiletries and such as well as foods and as Ursa said the deposits will take a while to leave the skin. Until then even small amounts of CC may reactivate.

mamasaidso Apprentice
mamasaidso
Posted
  • Author

Thanks for replies. I had a funny feeling that this may take a while to heal. Didn't realize it can hang around that long under skin, but doesn't surprise me in the least. I am constantly learning something new about this. So, I should avoid iodine? Does that mean shrimp? Why does iodine aggravate this? Guess I have more research to do. I have had no gluten for two weeks and today my arms are on fire. I must have slipped somewhere. Maybe my vitamins? I think I need to go to the coping forum. :(

You guys are great. Thanks so much for your help. Will put peels on back burner for now and focus on healing from the inside. :)

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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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