Thank you for this topic! I was diagnosed almost 4 years ago by my Gastro. with CD and Although not verbatim DH, he said "And you skin will clear up". I have stayed gluten free, but the eruptions are still coming in waves... I didn't know about the iodine connection, so that is being eliminated now..I don't the itch all the time as bad as the pain-feels like needles. One dermatologist gave me pramosolone for it - and it helped alot, but he never took a biopsy or diagnosed Gluten intolerance in any way. I was sent to Denver University by my allergist for a biopsy but The derm said to stop digging. it is just acne and did no biopsy. I would have been saved alot of misery if she had done one. So I say THANK YOU ALL for this information you are sharing. THe coal tar and prescription info will be used. THANKS! I can't say it enough.
I find it frustrating as other say they have DH and have never been told they also have CD. Of course I did get my DH diagnosis from a dermatologist in 1978. I would think by now they would know. Recently a friend had thought she had DH and went to a dermatologist and took a document saying you can't have DH and not CD. Her Dr. was surprised. So maybe not alot has changed.
I have DH as well. I was diagnosed in 1982, just after my daughter was born. I also mostly see the fact that I have invested gluten by the breakouts. I was told in '82 that I was gluten intolerant but nothing about celiac. I recently had an endoscopy done and my intestines were perfect, no damage. I did have the gene test completed and It came out positive. I think I need to find a new doctor because if he had told me that having DH made me a celiac I wouldn't have spent $800 for the test.
I use a prescription on my rash. It is Fluocinonide. I've used it for 20 years and it never fails to help. I also have a prescription for Dapsone (tablet) in case it ever gets really bad. Haven't had to use it.
I can't add much more than whats already written but to add welcome and I have DH too. I found 1 lotion that took the edge off but didn't take away the itching. You asked about complications - by the time I was Dx'd I had the rash from ankle to upper thighs, whole butt, and from upper arms to fingertips. My legs itched the worst and would scratch till they were a bloody mess. I was afraid of scarring but there was none, it took a few months for it to heal but you never would know today. Mine started on my hands and if I touch gluten I'll get some of the blisters to form. I've read that it's like shingles where the 1st place it attacks is where it will first reappear, it seems to follow that pattern for me. I don't care that the Mayo Clinic says the molecule is too big to pass through the skin, my skin begs to differ.
If you have been diagnosed with DH, you must stay on a gluten free diet. There is a clear link to it being caused by gluten in the diet. Have you checked our sticky topics for more information? Here is a link explaining it from the Alamo Celiac website www.alamoceliac.org/acaboutdh.html
Yes, I have it. I diagnosed with it in 1978 and at that time was just told to avoid wheat. I didn't learn that if you have DH you are Celiac. After I got my skin clear up I started adding wheat back to my diet as it was a pain to stay off it. Many people who have DH also are allergic to iodine, which I am. DH is what tells me I I have had gluten now as I very seldom get stomach issues. When I have an out beak which is seldom I use a cream that has cold tar in it. It is the only thing that help. Hope you get over it soon. I know how you feel and the itching is terrible.
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