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What Is Your Dh/skin Issue Experience?

Di2011

By Di2011
in Dermatitis Herpetiformis

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Di2011 Enthusiast
Di2011
Posted

I am getting more and more curious about everyones experience with DH and other skin issues that are or seem to be associated with gluten intolerance / celiac or have cleared or clearing with going gluten free. Can you tell me about your history and any positive response to gluten-free ?

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lovegrov Collaborator
lovegrov
Posted

I took dapsone for DH for 20 years and the DH cleared almost immediately after I went gluten-free. Haven't had it since.

OTOH, I developed psoriasis AFTER I went gluten-free..

richard

itchy Rookie
itchy
Posted

Diandliam: I think it would be wonderful if you could collect up information about people's experiences with DH.

Can I suggest a questionaire, so that people's responses are somewhat quantifiable.

Many of us have 'citizen's diagnoses', so we might as well start learning about this disease via citizen's research.

If that's what you had in mind.

Di2011 Enthusiast
Di2011
Posted
  • Author

Hi Itchy,

I've been thinking about this all day. You really got my analytic/maths/science brain working overload. I once had a very well paying job that was highly data/analytical. That was ditched a couple of years ago and I now, in hindsight, blame gluten. Now poor and my brain is seriously in need of stimulation that isn't specifically related to my own itching and other issues.

It might take a while, but as of tonight I am working on it.

Thanks

Di

squirmingitch Veteran
squirmingitch
Posted

My dh hasn't left me yet. Haven't been gluten-free long enough being such a newbie.

However, I've been wondering if anyone else has noticed any correlation between two things. So this is along the lines of what you're asking Di....

I used to get a lot of keratoses (skin tags) which itched. Now I know that virtually everyone gets or will get those as we age & some people more than others. But I began getting them when I was about 30. The odd thing is that since I began getting the dh blisters I haven't gotten any skin tags & the ones I had no longer itch.

Has anyone else noticed anything of that sort?

Di2011 Enthusiast
Di2011
Posted
  • Author

The more I read about skin disorders the more I read how few have a known cause. One of the reasons I decided, early in my massive DH outbreak, to avoid specialist is because I had read of so much mis-diagnosis and diagnosis of issues without known causes(for me as a non-medical person, that seems like no diagnosis at all).

I had a living nightmare going on, at the time, that someone might tell me I had atopic dermatitis.. "atopic" really got me itching. I could just hear myself "so it ain't usual and that is all you have to tell me???"

I have had what I thought were ingrown hairs (missing the hair) on my legs (especially lower leg) for years and years. At least since I was in my early 20s. I am now 38. I would now classify it as either a less itch-intense DH or some sort of pore blockage. They present much like the DH on other parts of my body.

I've had blackheads around my nose/mouth area that are fast clearing on my diet and no new outbreaks. Hard to pin point to gluten specifically because of my very restricted diet though.

I have something resembling rosacea and I've been pretty red/white blotchy all over for a long long time. It is definitely a lot less intense the last couple of months.

The "pimples" I've long had on my chin especially but also other areas of my face are now clearing with no new outbreaks. I am convinced these are DH/gluten related because I never had traditional pimples and never thought they looked like them either.

I've had weird "white heads" (white hard ball like centre) for a few years and these have all cleared gluten free. I now believe they were milia (singular is Milium). In fact it was one of the first unexpected things that happened to my body gluten free. I was rather surprised! I was gluten free but before I was on restictive regime I am now.

In general I've always been an itchy scratchy person.

I can't attribute all of these things to gluten because of my very restrictive bathroom/laundry/diet routines but I know that all of them are improving out-a-sight.

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