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Weird Dh Stories

minton

By minton
in Dermatitis Herpetiformis

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minton Contributor
minton
Posted

Okay, my first DH patch showed up in 6th grade a day after I saw a brown recluse looking spider on my leg. The patch was on the top of my foot and grew steadily and looked alot like the description of a brown recluse bite except the skin was not dying, just peeling off. So my first guess before diagnosis was brown recluse attacks.

When it spread to a patch on my inner calf, I panicked and exterminated my whole room thinking it was brown recluses.

Then the doctor got involved years later and said it was probably plaque psoriasis. I calmed down and tried to treat it and hide it. The treatments BURNED but I kept trying. I started crying during treatment applications. Then it spread to my face. I could barely eat from pain.My lips got it. Talk about embarrassing!

I had it that way, constantly spreading, for about 8 years before I met my new doctor. The gluten free diet cleared up and he said it was probably DH, not psoriasis. I didn't tell him about the spider panic. Looking back, I can laugh at myself. Even though the DH is starting up on my legs again, I can laugh and know what it is. No more room exterminations for me!

Anyone else have funny stories on their road to diagnosis of DH?

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flourgirl Apprentice
flourgirl
Posted

Over the years I've had several really bad cases...and thought it was a sensitivity or allergy to poison Ivy......as my Dr.s believed, too. Before my diagnosis of Celiac, I had a really bad rash. I was sure it was poison Ivy but didn't know how I'd gotten it. I recognize the plant and avoid it. Nothing I did relieved the burn and itch. As it spread, I washed every tool I was using outside, threw out my clothes and shoes that I'd been wearing (even tho' I had washed them I thought some of the oils were remaining in my clothes). Then I realised that a neighbor down the road was burning brush over a period of many days, so I blamed him for burning Ivy in with the brush. Maybe the oils were traveling in the smoke.

By the time I had my endoscopy I was covered head to toe with rash. I knew by that time that it couldn't be poison Ivy because I had it on the bottom of my feet and on my hands. My feet were so bad (my job had me standing 12 hours a day) that they were peeling and bleeding. What fun!

ravenwoodglass Mentor
ravenwoodglass
Posted

I had DH from about age 7 and it would cover my arms and legs and I also was told it was poison ivy. My Mom could never figure out how I would get into it in the wintertime and one doctor explained I had poison ivy 'in my blood'. A lot of bunk of course. He prescribed these incredibly painful shots with a serum that the nurses would have to heat in hot water to even get to go through the syringe (they don't use those particular shots anymore). I had those every year for ten years and when I would complain about the shot my Mom would threaten me with her mothers remedy. My Grandmother, in the early 1900's, used a scrub brush on my Mom's lesions and then would pour salt on them to dry them up. Can you imagine!!!!!!!

flourgirl Apprentice
flourgirl
Posted

I heard the old poison Ivy, sumac in the blood bit, too. I had it so bad one time it was everywhere. Doc at the time said there was nothing he could do just go home. It got a lot worse! It was years ago, though, and maybe they really did believe it got into your bloodstream to spread. I hope they don't still pass on such bogus info!

kenlove Rising Star
kenlove
Posted

For 15 years I was told it was mango rash (The Hawaiian version of Poison Ivy!) and not to eat or work with mango and cashew trees. Needless to say the rash didnt go away. When I was finally diagnosed with celiac and dh confirmed, I was so happy I could eat mangos again that I wolfed down 5 big ones at one sitting!

Ken

I had DH from about age 7 and it would cover my arms and legs and I also was told it was poison ivy. My Mom could never figure out how I would get into it in the wintertime and one doctor explained I had poison ivy 'in my blood'. A lot of bunk of course. He prescribed these incredibly painful shots with a serum that the nurses would have to heat in hot water to even get to go through the syringe (they don't use those particular shots anymore). I had those every year for ten years and when I would complain about the shot my Mom would threaten me with her mothers remedy. My Grandmother, in the early 1900's, used a scrub brush on my Mom's lesions and then would pour salt on them to dry them up. Can you imagine!!!!!!!

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