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Dermatis Heretiformis


missybean

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missybean Apprentice

Hello, I'm wondering if I have DH. My primary believes that I do finally but I haven't had a skin biopsy therefor not a firm diagnoses. I have suspected celiac for a couple of months since I got pregnant and many aillments have become worse. I was most gluten free before pregnancy....I thought I had a bad candidia problem and seemed to have a major improvement on that diet. When I became pregnant I started eating more grains and alot of my proir symptoms became worse again.......diarrhea,joint pain, worsening of hives and the list can go on. Anyway I was getting this awful itchy,prickly sensation all over my body for the past couple of months. Sometimes I feel like I'm going to lose my mind. Mostly the rash looks like tiny pin pricks and has kind of a peachy pink hyperpigmentation. Mostly the rash is on my hands is between my finger on the tops of my hands and all over my feet on top. After my doc suspected DH she said go 100% gluten free which I have and I have noticed and massive improvement. No more diarrhea, acne started getting better, skin stopped itching within a week or so and I had this hyperpigmentation on the tops of the knuckles and on my ankles and the top of my foot for almost 2 years and I just noticed the other day, Its gone! Weird. No doctors could ever tell me what it was...it was really dark too......dark brown and i'm really fair skinned. People would always ask what it was. It was imbarrassing. Now I started itching again and i have noticed I have a red rash on my elbow that is really sore looks like little hives, the skin between my finger looks extremly dry and looked like it might crack and bleed and now I have one area where there is a red hive with a scab in the middle of it and it is really sore. I made an appiontment with the dermatologist and I'm going to ask for a biopsy but I wonder do I have to be ingesting gluten to get an accurate test or is the fact that i'm having a blister a sign that I accidently ingusten gluten? I also have large hives all over between my breasts and on my breasts and a have these blood blister looking things everywhere on my breasts too. I have also noticed these blood blister looking things on other places like between my legs on top og my feet where it itches. When I see pics of what DH looks like...mine doesn't look like that. Mine looks for like hives or blood blisters except for the blister I got the other day. Are ther different severities of DH?


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missybean Apprentice
Hello, I'm wondering if I have DH. My primary believes that I do finally but I haven't had a skin biopsy therefor not a firm diagnoses. I have suspected celiac for a couple of months since I got pregnant and many aillments have become worse. I was most gluten free before pregnancy....I thought I had a bad candidia problem and seemed to have a major improvement on that diet. When I became pregnant I started eating more grains and alot of my proir symptoms became worse again.......diarrhea,joint pain, worsening of hives and the list can go on. Anyway I was getting this awful itchy,prickly sensation all over my body for the past couple of months. Sometimes I feel like I'm going to lose my mind. Mostly the rash looks like tiny pin pricks and has kind of a peachy pink hyperpigmentation. Mostly the rash is on my hands is between my finger on the tops of my hands and all over my feet on top. After my doc suspected DH she said go 100% gluten free which I have and I have noticed and massive improvement. No more diarrhea, acne started getting better, skin stopped itching within a week or so and I had this hyperpigmentation on the tops of the knuckles and on my ankles and the top of my foot for almost 2 years and I just noticed the other day, Its gone! Weird. No doctors could ever tell me what it was...it was really dark too......dark brown and i'm really fair skinned. People would always ask what it was. It was imbarrassing. Now I started itching again and i have noticed I have a red rash on my elbow that is really sore looks like little hives, the skin between my finger looks extremly dry and looked like it might crack and bleed and now I have one area where there is a red hive with a scab in the middle of it and it is really sore. I made an appiontment with the dermatologist and I'm going to ask for a biopsy but I wonder do I have to be ingesting gluten to get an accurate test or is the fact that i'm having a blister a sign that I accidently ingusten gluten? I also have large hives all over between my breasts and on my breasts and a have these blood blister looking things everywhere on my breasts too. I have also noticed these blood blister looking things on other places like between my legs on top og my feet where it itches. When I see pics of what DH looks like...mine doesn't look like that. Mine looks for like hives or blood blisters except for the blister I got the other day. Are ther different severities of DH?
ChemistMama Contributor

Yes, you'll need to be ingesting gluten for a postive biopsy (or a positive blood test), but you'll have to be on gluten for several weeks, which, if you're already gluten-free, could be quite painful and uncomfortable. You could ask for a biopsy, since the gluten does stay in your skin for awhile, but I was gluten-free for 2 months and then had a biopsy and it was negative (taking dapsone proved that it was DH!). You could also try the iodine skin test, there are several threads about how to do that, it was how DH was previously diagnosed before blood tests and dapsone. Good luck!

ravenwoodglass Mentor

For blood tests and an endoscopic biopsy you have to be on a full gluten diet. DH is a different matter. If you have an active lesion that is all you need. You don't need weeks on a challenge for it. The doctor will need to biopsy the area next to a lesion to look for DH not the lesion itself. If you have no active lesions then you might want to do a short challenge, just long enough for lesions to appear.

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    • Scott Adams
      If you have DH you will likely also want to avoid iodine, which is common in seafoods and dairy products, as it can exacerbate symptoms in some people. This article may also be helpful as it offers various ways to relieve the itch--thanks for the tip about Dupixent, and I've added it to the article:  
    • Scott Adams
      I just want to clarify that what I posted is a category of research summaries we've done over the years, and nearly each one shows that there is definitely a connection to celiac disease and migraine headaches. The latest study said: "the study did indicate some potential causal associations between celiac disease and migraine with or without aura, as well as between migraine without aura and ulcerative colitis...this study did not find evidence of a shared genetic basis..." Anyway, there is definitely a connection, and you can go through more of the articles here if you're interested: https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/migraine-headaches-and-celiac-disease/
    • SusanJ
      Two months ago, I started taking Dupixent for dermatitis herpetiformis and it has completely cleared it up. I can't believe it! I have had a terrible painful, intensely itchy rash for over a year despite going fully gluten-free. See if your doctor will prescribe Dupixent. It can be expensive but I am getting it free. When the dermatitis herpetiformis was bad I could not do anything. I just lay in bed covered in ice packs to ease the pain/itching and using way too Clobetasol. Dapsone is also very good for dermatitis herpetiformis (and it is generic). It helped me and the results were immediate but it gave me severe anemia so the Dupixent is better for me. Not sure if it works for everyone. I cannot help with the cause of your stress but from experience I am sure the severe stress is making the celiac and dermatitis herpetiformis worse. Very difficult for you with having children to care for and you being so sick. Would this man be willing to see a family therapist with you? He may be angry at you or imagine that your illness is a psychosomatic excuse not to take care of him. A therapist might help even if he won't go with you. Also do you have any family that you could move in with (with the kids) for a short time to get away? A break may be good for you both.
    • knitty kitty
      @tiffanygosci, Thiamine deficiency is a thing in pregnancy for "normal" people, so it's exponentially more important for those with celiac disease and malabsorption issues. I studied nutrition before earning a degree in Microbiology because I was curious what the vitamins were doing inside the body.  See my blog.  Click on my name to go to my page, scroll to drop down menu "activities" and select blog.   So glad you're motivated to see the dietician!  We're always happy to help with questions.  Keep us posted on your progress! 
    • tiffanygosci
      Thank you for sharing all of this, Knitty Kitty! I did just want someone to share some commonality with. I did not know This one Deficiency was a thing and that it's common for Celiac Disease. It makes sense since this is a disorder that causes malabsorption. I will have to keep this in mind for my next appointments. You also just spurred me on to make that Dietician appointment. There's a lot of information online but I do need to see a professional. There is too much to juggle on my own with this condition.<3
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