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Hi, New Here, Help Needed!

Ukbird

By Ukbird
in Dermatitis Herpetiformis

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Ukbird Newbie
Ukbird
Posted

Just wondered if my symptoms are like anyone elses. For 5 years i have had itchy skin and digestive problems. For the last 18 months i've had what i thought was ibs. This summer i started with a horrible itchy rash that was symmetrical on my upper arms, elbows, hands, shins and ankles. Some were itchy bumps, others were blisters on my fingers and toes that i scratched till they turned into blood blisters and i had to burst them. I had positive ANA and my dermatologist was convinced straight away i had DH. He took a biopsy from my back where there were no spots and told me it was negative and discharged me. I had gluten this weekend and spots have reappeared on my arms, buttocks and now my back, quite mild at the moment but itchy. Does this sound like DH to anyone? Any help appreciated. Ps my dad was never investigated but he was an itchy person with a few spots and he died of stomach cancer.

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Cath4k Apprentice
Cath4k
Posted
Just wondered if my symptoms are like anyone elses. For 5 years i have had itchy skin and digestive problems. For the last 18 months i've had what i thought was ibs. This summer i started with a horrible itchy rash that was symmetrical on my upper arms, elbows, hands, shins and ankles. Some were itchy bumps, others were blisters on my fingers and toes that i scratched till they turned into blood blisters and i had to burst them. I had positive ANA and my dermatologist was convinced straight away i had DH. He took a biopsy from my back where there were no spots and told me it was negative and discharged me. I had gluten this weekend and spots have reappeared on my arms, buttocks and now my back, quite mild at the moment but itchy. Does this sound like DH to anyone? Any help appreciated. Ps my dad was never investigated but he was an itchy person with a few spots and he died of stomach cancer.

I am not an expert, but it is my understanding that the biopsy has to be done properly. It has to be taken from the skin right next to an active blister. You say your doctor took the biopsy from your back where there were no spots. Would he be willing to test again when you have an active outbreak? Or better yet - maybe you should find a new dermatologist who is more familiar with DH. If you have a local celiac support group, that would be a good place to look for an experienced doctor. I found a good dermatologist and a good gastroenterologist by googling my city name along with the key words "celiac" or "dermatitis herpetiformis." Both times it pulled up the website of my local support group and times that doctors had spoken to the group.

Again, I am not an expert, but it sounds like classic DH to me.

Cathy

hayley3 Contributor
hayley3
Posted

Sorry, I don't know what you have but I had the itchy bumps on my fingers that turned into blood blisters, but I'm not dx'd. I quit eating processed foods, which got rid of alot of gluten I suppose and it went away. Never thought about it again until I read your message. I'll be curious to see if anyone else has had the itchy blood blisters. I can't remember if I had them on my toes or not but I think I did.

I had a bad rash on my arms for years that they never figured out what it was.

  • 3 weeks later...
muddy puppy Newbie
muddy puppy
Posted
Just wondered if my symptoms are like anyone elses. For 5 years i have had itchy skin and digestive problems. For the last 18 months i've had what i thought was ibs. This summer i started with a horrible itchy rash that was symmetrical on my upper arms, elbows, hands, shins and ankles. Some were itchy bumps, others were blisters on my fingers and toes that i scratched till they turned into blood blisters and i had to burst them. I had positive ANA and my dermatologist was convinced straight away i had DH. He took a biopsy from my back where there were no spots and told me it was negative and discharged me. I had gluten this weekend and spots have reappeared on my arms, buttocks and now my back, quite mild at the moment but itchy. Does this sound like DH to anyone? Any help appreciated. Ps my dad was never investigated but he was an itchy person with a few spots and he died of stomach cancer.

It kind of sounds like it... (though I'm no doctor,) but I've heard that a skin biopsy is not always accurate. I have have very severly itchy skin for about 4 years now, though I've had at least some itchy spots my whole life. Depending on where it itches, its different. Most of my body its just dry, raised, red, and irritated, but if I scratch the palms of my hands I will get little blisters and if I scratch alot those blisters will bleed. On places like my neck and shoulders, I will get these hard little bumps that take weeks to months to go away. They are not blisters, and feel like they are deep under the skin. One of the worst places to itch.... eyelids. Yes thats right, my eyelids always itch, are always red, and puffy. I haven't worn makeup in years! I gave up on Doctors a long time ago... they got me nowhere. I called my last dermatologist asking questions about gluten, (right before I went gluten free) and she told me she highly doubted it was the cause of my problems. Well, I have before and after pictures for her. The best thing you can do is just stick to a 100% (as best you can) gluten free diet and see what happens. It took a few months to really see results, but part of that is because there is a lot of trial and error. Most people think oh, ok, give up bread, pasta, cake, cookies and obvious stuff like that... but who thinks that much of salad dressing, bbq sauce, mayonaise, hot dogs, sausage, bacon, marinades, ice cream, etc... etc... The only thing I can say, is one has to be diligent.

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