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Does this look like DH?

Michellelle

By Michellelle
in Dermatitis Herpetiformis

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Michellelle Rookie
Michellelle
Posted

Hello everyone..... Does this look like DH? It’s real itchy, and even on both sides of my body. I’ve been diagnosed with everything from ezcema, to contact dermatitis, to now,  my third doctor for a third opinion who said it’s DH. She ran 4 different blood tests which all came back positive for celiacs. She did not do a biopsy. I have the rash on both elbows, both knees, both legs from the knees to the feet. I have started Dapsone and a gluten free diet, only one week in with no change, I have a referral for GI and I am seeing a nutritionist next week for deficiency in iron and vitiman d. Any ideas? Thank you so much. 59ee5b623c8ed_IMG_23582.webp.1bd5d1ccdfa34b3a6a94249220fd51e3.webpIMG_2356.webp.712168bbc1540128222a7b069b8354ff.webpIMG_2355.webp.461bbaab8b757adf9d43b471fe150dda.webp

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Victoria1234 Experienced
Victoria1234
Posted

Looks a lot like mine did. Does it ever go away? Mine would sometimes go away (at least the bumps) and turn purple ish. Thought my skin would never be normal again. Is the red part where you scratched it bloody? I did too.

took quite a while gluten-free to go away. Even a crumb would bring it back at first. It seemed to take forever to get over it. It was less than a year but more than 6 months.

what were your blood test results? Feel free to post them here so we can help you out.

make sure to follow all our beginner tips to avoid cc. I'm sure you want your dh to go away as fast as possible.

Michellelle Rookie
Michellelle
Posted
  • Author

Hello, thank you for responding. Here are the lab results.                           

    Range

  Endomys Ab Ttr    1:320  *@  [<1:10]

Range

  Gliadin IgG Ab    128  H@    [0-19]        Units

  Gliadin IgA Ab    204  H@    [0-19]        Units

Range

  TTG IgA           >100  H@   [0-3]         unit/mL

The doctor said there was no need for a biopsy, since I had been using steroid ointments with no luck, and I also had a patch test done with an allergist with no luck. My allergist told me with out a biopsy it can’t be DH for sure so to continue avoiding fragrance which I had an allergy too. The rash does almost go away, the bumps take forever, like a few months. Maybe because I keep scratching....  but before it clears up all the way it blows up all over again.

I’ve made some big changes real quick. Hoping to learn how to avoid cc by seeing the nutritionist. I have read that it can take forever to heal on diet alone. We’re tou also taking dapsone? I’m currently on 25 milligrams. I will also look into beginner tips so I can take care of myself the best I can. 

 

Thank tou for realinding. :)

Victoria1234 Experienced
Victoria1234
Posted

I don't remember if I used dapsone anymore. It was 10 years ago, lol. I remember them trying lots of things. My dermatologist wasn't the smartest as they dx. me with dh but didn't tell me that meant celiac. Still annoyed by that. 

Your blood numbers look pretty conclusive!

do you have any other symptoms? Some people with dh don't have many other symptoms. I had super bad gut pain along with my dh.

Michellelle Rookie
Michellelle
Posted
  • Author

How long have you been free of DH? Did you have damage to your small intestine as well? How do you avoid cc? Do you still enjoy eating out? I am only putting things together since I’ve been diagnosed. I have had this rash for a year..... but I have always had slight symptoms. Stomach aches, gas, constipation... lately sore joints. I’ve had all kinds of blood work. For RA, ANA, Thryoid, HIV, and more. Celiacs was the only culprit to date. I have seen three different doctors this year and I have had close to 15 appointments. I feel like I finally have the right answers. I am happy I’m not in this alone. 

squirmingitch Veteran
squirmingitch
Posted

Go to the coping section & pinned at the top is the Newbie 101 which will tell you how to prevent cc. Sorry, that's all I have for tonight as it's been a long, long day for me & I am more than ready to turn in. I'll respond further tomorrow.

I'm sooooooooo glad to hear you finally have an answer!!!!! 

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