Thank you so much for this. I was diagnosed with DH at age 24, after over a decade with this disease. No trace in the blood work, so it took a specialised private doctor to catch it, and I had to find them myself. In Norway, which should be more aware of this since more people seem to have the gene for developing this, there is almost no information availble. I have contacted the Norwegian celiac assosiation, but thet said they have no one that knows anything about DH, and referred me to my doctor. I have tried to talk to my doctor, but he doesn't know what it is or what to do, so he basically sent me on my merry way. I adhere to a strict GF diet, but I still get flare ups from time to time. Hearing that is normal felt so good! That DH waxes and wanes is something I have experienced, but I was blaming myself for not being strict or good enough. I am so interested to learn more about my disease, and for the first time in forever, I finally have some new info. I am so grateful
I’m in my 60’s. I’m not diagnosed even though I’ve been to many doctors with visible symptoms. My latest break out of torturous itchy blisters all over my arms, neck and chin was after taking iodine. The worst reaction ever, worse than those from wheat. I’ve been gluten free for years. My thyroid developed a bump. I looked on the net to find answers. It said most likely goiter starting. Haven’t been using iodized salt so that made sense. Started liquid iodine. The bump went down. Then I got the blisters. Not right away either, but when they hit, it was so bad. No help from doctors. I will ask about dapsone. We need iodine, so it’s like we are doomed to have one health issue or the other. Avoid iodine, get goiter. Take iodine, get blisters. Any research or answers??
It's like sending someone with vitiligo to get a biopsy, it like a looks unique! wake up ! and is easy to see. And definitely feel for the patient, if you're listening?!
Read more here www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/ We recommend going to your doctor and requesting a screening for celiac disease.
And when you have this rash you don't need to be going around with biopsies or them trying to give you wheat along the way. got it without a biopsy,. I told her I needed something called dapsone. Yeah the dermatologist didn't even Recognize it because he was in the rainbow com. If you see Dap son is helping me then that's what it is! I mean I literally cannot eat food if you don't give me the prescription! Not going to put a bunch of scars on me! For no reason and you should've took more than one. Oh who else is in the rainbow community looking under the microscope. Yeah I'm not doing this anymore I even raise the prescription to 300. Because you guys kept playing with the delivery date and the mgs ! you would say it was gonna be delivered and then I had to go all the way back to the pharmacy on fire because you didn't even send it TWO times! so glad im an Aq. Not gonna give me an anibiotic anymor for the 2 most paiful rash in the medical world. It's the same as with Asians cannot process alcohol. not rocket sciene. I didn't develop any symptoms like anemia numbing I don't have any stomach pain I don't get tired I work out and eat food as I did before and I don't have any symptoms!
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This is the best DH explanation I've heard on this subject so far.. Thank you so much.
You're so welcome! We're so glad you found this useful. :)
Thank you so much for this. I was diagnosed with DH at age 24, after over a decade with this disease. No trace in the blood work, so it took a specialised private doctor to catch it, and I had to find them myself. In Norway, which should be more aware of this since more people seem to have the gene for developing this, there is almost no information availble. I have contacted the Norwegian celiac assosiation, but thet said they have no one that knows anything about DH, and referred me to my doctor. I have tried to talk to my doctor, but he doesn't know what it is or what to do, so he basically sent me on my merry way. I adhere to a strict GF diet, but I still get flare ups from time to time. Hearing that is normal felt so good! That DH waxes and wanes is something I have experienced, but I was blaming myself for not being strict or good enough. I am so interested to learn more about my disease, and for the first time in forever, I finally have some new info. I am so grateful
Thank you for sharing your story and we're so glad that you have found this video helpful! :)
I’m in my 60’s. I’m not diagnosed even though I’ve been to many doctors with visible symptoms. My latest break out of torturous itchy blisters all over my arms, neck and chin was after taking iodine. The worst reaction ever, worse than those from wheat. I’ve been gluten free for years. My thyroid developed a bump. I looked on the net to find answers. It said most likely goiter starting. Haven’t been using iodized salt so that made sense. Started liquid iodine. The bump went down. Then I got the blisters. Not right away either, but when they hit, it was so bad. No help from doctors. I will ask about dapsone. We need iodine, so it’s like we are doomed to have one health issue or the other. Avoid iodine, get goiter. Take iodine, get blisters. Any research or answers??
And the reason why is because it looks unique I mean it's easy to identify that's what it means!
It's like sending someone with vitiligo to get a biopsy, it like a looks unique! wake up ! and is easy to see. And definitely feel for the patient, if you're listening?!
I tried emailing the Canadian Celiac Foundation and never heard back. Also left message and no reply either.
Hi there, please email clientsupport@celiac.ca and be patient for a reply!
Are the villi laying flat or are they "broken off/dead"?
the villis are eroded which affects nutrient absorption but once the gut starts healing nutrient absorption should improve.
Is there any other way to treat this expect gluten free diet and dapsone?
Currently, the management for celiac disease is to adhere to a strictly gluten free diet.
How is this diagnosed????????? I was treated for scabies 5 weeks ago but it's back! PLEASE HELP!
Read more here www.celiac.ca/gluten-related-disorders/dermatitis-herpetiformis/
We recommend going to your doctor and requesting a screening for celiac disease.
And when you have this rash you don't need to be going around with biopsies or them trying to give you wheat along the way. got it without a biopsy,. I told her I needed something called dapsone. Yeah the dermatologist didn't even Recognize it because he was in the rainbow com. If you see Dap son is helping me then that's what it is! I mean I literally cannot eat food if you don't give me the prescription! Not going to put a bunch of scars on me! For no reason and you should've took more than one. Oh who else is in the rainbow community looking under the microscope. Yeah I'm not doing this anymore I even raise the prescription to 300. Because you guys kept playing with the delivery date and the mgs ! you would say it was gonna be delivered and then I had to go all the way back to the pharmacy on fire because you didn't even send it TWO times! so glad im an Aq. Not gonna give me an anibiotic anymor for the 2 most paiful rash in the medical world. It's the same as with Asians cannot process alcohol. not rocket sciene. I didn't develop any symptoms like anemia numbing I don't have any stomach pain I don't get tired I work out and eat food as I did before and I don't have any symptoms!