Is there a fix for Dermatitis Herpeti... - Gluten Free Guerr...

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Is there a fix for Dermatitis Herpetiformis.

dwaage1 profile image
7 Replies

After living with DH for 3 years and being on Dapsone the same, I am wondering if anyone has a good practitioner who understands this condition and can help get to a solution. I'm very discouraged regarding my lack of progress, and the probability that taking Dapsone may be causing permanent damage internally. I have been treating at Mayo Clinic, but the doctors are just as frustrated as I am. Help.

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Henbur profile image
Henbur

I had same thing still hanging about after 2 years then I got prescribed steroids for a heart condition where meds were really affecting my asthma. I took the antibiotics for a couple of months to manage asthma until I'd had my heart procedure. Anyway the patches of DH cleared up as did a verruca I'd had 3 yrs. GP suggested it was coincidental but the verruca and those pesky blistery sticky itchy patches of skin were not budging despite ongoing treatments so I personally think the steroid played a part 🤔

Ericd2477 profile image
Ericd2477

I am in my second year now but only got diagnosed 2 months ago. I did notice that when the doctor tried Antibiotics my skin patches cleared up for a couple of weeks. I cannot take the Dapsone because of other conditions however the Gluten free diet appears to be starting to reduce the itchy patches. Long way to go I think. Good luck and let us know if anything else works for you.

Lisahelen profile image
Lisahelen

Mine rear up when i have milk, gp agrees but cant get consultant to arrange for allergy test. So im pretty much self diagnosed, no milk/dairy no spots, back on milk and up they pop. You could see if going lactose free helps.

Hil101 profile image
Hil101

When a biopsy confirmed that I had DH, I told the consultant I didn't want to take Dapsone because I looked it up and was unhappy that the side effects included heart problems. He replied 'yes, it's a serious medication' (!!). So he suggested I use Dermol instead of soap and quite a strong steroid ointment, mometasone furoate 0.1% (ointment stays much longer than cream) sometimes branded as Elocon. When the patches are mild, I use milder cream such as betnovate RD (ready dilute). When it itches like fury, I run it under a cold tap to reduce the inflammation if it's somewhere such as my elbows. Over time, combined with gf diet, the DH has almost disappeared and I just get the off bit every now and again on my elbows or buttocks. Best of luck, hope this works for you

dwaage1 profile image
dwaage1 in reply toHil101

Thank you a lot. Best news yet.

Fatima66 profile image
Fatima66

Hi, I have DH but I decided not to take Dapsone, if I keep off gluten I don't get the rash. I think I may be allergic to soy lecithin. I would try to get off Dapsone.

Jacks profile image
Jacks

Mine cleared up with a super-strict GF diet, and I mean super-strict, probably within a year of diagnosis and going GF. And reducing halogen compounds like iodine and halides, even down to avoiding sea salt! It was hard because I ate a lot of (sea) fish. I am now able to eat normally - for a coeliac anyway! I'm just grateful I no longer have the blisters, itching and burning. Might be time to reassess your diet and look at the labels again.

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