And on a Positive Note...

[suek54]

Hi

Diagnosed with dermatitis herpetiformis (skin biopsy) December 25, following 7 months of the most awful top-to-toe rash. Immediately started on 50mg Dapsone,which helped no end but couldn't put the lid on it entirely, still lots of outbreaks. Now increased to 100mg. Brilliant!  Skin clear, feeling good, bloods all good. Im (an active)72 yr old with other autoimmune conditions, including hypothyroidism and Addison's Disease, so am totally steroid dependant. So, this is just for anyone new out there, struggling with this challenging condition...hang on in there, it does get better. 

Sue

PS after considering all the helpful advice by the lovely people on this forum I decided not to take supplements and stuck with my daily porridge, though swapped to certified gluten-free oats. 

 

[Scott Adams]

Thank you for sharing this — it’s really encouraging to hear from someone who has come through such a difficult stretch and is now seeing clear improvement. Dermatitis herpetiformis can be so exhausting, especially when the itching and outbreaks just won’t fully settle, so it’s helpful for others to hear that Dapsone, careful monitoring, and staying the course with a strict gluten-free diet can make a real difference. I’m glad your bloods are looking good and that the higher dose is helping so much. Your message is a hopeful reminder for anyone newly diagnosed that, even though DH can feel overwhelming at first, things really can get better with the right treatment and support.

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:

 

[DebJ14]

I was diagnosed back in the late 1960's with dermatitis herpetiformis.  Unfortunately, the letter from the dermatologist said nothing about gluten free and only came with a prescription for steroid cream.  I just scratched and scratched when that prescription ran out.  Years later I was prescribed Dapsone, but once again no mention of a gluten free diet.  Finally, almost 20 years ago I was officially diagnosed celiac and allergic to Casein. When I showed them my letter from the dermatologist they were appalled and said even then they should have known better.  To make a long story short, after 10 years of being totally gluten and dairy free I still had bouts of dermatitis herpetiformis and needed meds for the rash.    About 10 years ago my doctor had me go totally grain free as well as staying dairy free.  In a few months the dermatitis herpetiformis went away and I have only had 3 episodes, and each time was after being accidentally glutened. I have not been glutened  since 2019 and the dermatitis herpetiformis has not come back.  I take nothing, topical or oral for the dermatitis herpetiformis.  I suggest you read the book No Grain No Pain by Dr. Peter Osborne DC.  It was very helpful.

[suek54]

Oh Wow Deb, what an awful trial you've had with dermatitis herpetiformis. I just can't imagine how you have coped. You must be such a strong lady. I'm very glad to hear you have found a way through. No grain. Very interesting. 

Not sure exactly why it got such an extreme hold on me, top to toe - age, Addison's, lack of medical recognition - probably a combination of everything but Dapsone has been such a game changer. I'm just about clear of rash now and hoping the nerve damage and joint inflammation will give up too before much longer.  One day at a time. 

Sue

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