Dermatitis Herpetiformis

[hose1975]

Hi,

I have not yet had confirmation of what I suspect to be a problem with gluten (either a sensitivity of full-blown coeliac) but wanted to ask a question about dermatitis herpetiformis.

A year or so ago I had a single spot come up on my lower leg. It looked like a little round blister and was mind-meltingly itchy. It burst when I scratched it too hard, too close and the itching died down. However, it has left a slightly raised, purple mark where it was.

I understand that DH does not necessarily have to be symmetrical, nor does it have to be widespread but if you want it biopsied you need to get down to the GP while it's still active. I've not had anything quite like this since and I'm certain that it wasn't an insect bite of any kind.

Does this sound like it might have been DH? My skin generally itches like buggery most of the time and I occasionally get intensely itchy bumps but this is the only that I know of that's left a permanent mark.

I have tested negative on IgA tests but my diet may not be particularly high in gluten and might have skewed the results (breakfast is usually oats, lunch is soup and supper is about the only meal that contains gluten, and then only 40g of pasta).

Any advice much appreciated.

[1stgls]

Mine look like burn blisters, and the skin covering the fluid is very soft (almost like cling film) yes it itches! The purple skin under the fluid fades after about a year. My blisters could not be mistaken for bites, even at the beginning, (think large, soft, translucent slugs)

[Lexy]

It could possibly be dermatitis herpetiformis. I started getting these kinds of itchy blisters on my legs, not knowing what they were, a few years ago and they were the first clue that I might be suffering from dermatitis herpetiformis and led to me to seek diagnosis. But for much longer, since teenagehood, I've had them on my face, neck and chest, back and then later on my arms and hands (and finally legs) which ALL the doctors always claimed were acne. Been on countless facewashes, pills, creams, sprays, etc etc - nothing made a difference. The blisters were always pretty symmetrical, although I never thought about it at the time. And now my scars are symmetrical too! The itching drives you mad. But I still get the blisters - even in the scars - whenever I'm exposed to something my body doesn't tolerate (it's much more than just gluten because I think my digestive system is wrecked by 40++ years of having the wrong food and drink) which is an ever-growing list! I don't know if this is a helpful answer or not? What I've found is that dermatitis herpetiformis varies from individual to individual, although there are general similarities and common experiences. I'd recommend trying to get a medical diagnosis. My blisters weren't 'active' at biopsy so the dermatologist wouldn't give me a firm diagnosis although he said he was 99.99%certain that I suffer from dermatitis herpetiformis... sigh. So I have excluded all forms of gluten and a whole host of other items from my diet. It largely works, but every now and then I get a flareup and I have no clue what the cause is. Frustrating doesn't even cover the emotion it inspires... Good luck with your journey! I hope you get a resolution soon!

[Towels]

Hi hors 1975

I've been been on a Gluten free diet for 8 years now. I was diagnosed with ceoliac disease after I had a biopsy from the gut in hospital after years of feeling unwell. I also have DH the skin problem your talking about. I kept getting a few blisters on my buttock. These blisters were very itchy and painful. I kept going to my GP who gave me steroid creams. I said to my GP a want to see a dermatologist as I was really fed up. The dermatologist at the hospital referred me for a biopsy while the rash was full blown. The biopsy showed I had DH. I stick to a stict Gluten free diet,but if a little Gluten gets into my diet I get the blisters and pain in my Buttock. My advice is to ask your Doctor for a referral to see a dermatologist. GOOD LUCK

[Hil101]

I was diagnosed as coeliac, having had lifelong symptoms and 'eczema'. The eczema worsened, while on the gluten free diet, to spots on many parts of my body including my calves (the spots were blisters which burst before being noticed). They were maddeningly itchy. It was then diagnosed as DH by skin biopsy. With strong steroid cream treatment (I refused the medication dapsone which is prescribed for leprosy too, I was told), it eased and with longer on the GF diet it subsided. Nowadays, I get blisters on my buttocks and elbows if I have even invisible gluten. Sometimes I get skin symptoms but not noticeable gut ones. It's a good warning system and the steroid cream is enough to knock it back provided I don't eat traces of gluten. It's very manageable now, though my elbows can be a bit unsightly.

[mh22]

I have been coeliac since birth now (65) DH was diagnosed when (30)

I understand that they are both linked......coeliac can only be diagnosed with endoscopy biopsy

DH is REALY REALY ITCHY. can be diagnosed with skin biopsy. I am STRICT GLUTEN FREE, and have pills for the DH, bloods checked 3 monthly,,, I still have the odd itchy spots....

eating out is a NO NO..hope this helps

[Totoro123]

Hi @hose1975 , your symptoms are really similar to what I’m experiencing at the moment. Did you get an outcome of what it was? I’m going back to the docs as also wondering whether these itchy blister/ bumps could be DH relates to coeliac? Feeling quite anxious about it all so any information would be great. Thanks 😊