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Does Dh Always Itch?
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I've had spots that appear mostly on my hands, wrists, and arms for about 6-7 years now. I've also had them show up on my legs, tops of feet, my lip, elbows and occasionally my back. I always thought it was eczema or psoriasis, but am now wondering. The spots usually present as small, round dry spots that will grow in size but are typically barely raised. Generally, they don't itch much, are just very dry and rough. Occasionally, these areas will itch like crazy for a day or two, but then go back to just being a nuisance and quite unsightly. They are usually pink and dry, but sometimes will turn into a "lesion." When they are itchy, they are bright red/maroon. I never get the blisters that are typical of DH. My spots will last for months, and once they are gone the skin is white. Hence, I have lots of white spots up and down my arms. Biopsy of a spot on my leg was inconclusive, but doc said her gut feeling was that it's the early stages of psoriasis, that it can sometimes take years to fully develop. I've seen pics here that look very similar to mine, so now I wonder if I should have had it tested for DH (I know this must be done on clear skin adjacent to a lesion). But because it doesn't constantly itch, I also wonder if could be DH??

I have one area that I know has to be DH. It's at the top of my butt and tingles/itches before an eruption. While it's active, it itches like crazy, but can be tender if scratched or rubbed. It's always in the same place. If it rears its ugly head again, I will definitely call to have a biopsy done immediately.

Thank you for any thoughts.

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I have been gluten free for over 3 years. I still have a very small amount of lesions on my back and butt . They only itch to the maddening degree they used too if I get glutened or consume to much iodine .But I always can feel them .

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Mine only itched to the point of insanity while I was still consuming gluten. Once I stopped, it's like an itch that's constantly there in the background but not an acute, insatiable itch.

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Mine only itched to the point of insanity while I was still consuming gluten. Once I stopped, it's like an itch that's constantly there in the background but not an acute, insatiable itch.

You described it very well . I sure dont miss that madding want to rip your skin off itch at all

' shudders even thinking of it ' :ph34r:

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About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

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About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

I have to extremely careful about the amount of iodine I consume.

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I have to extremely careful about the amount of iodine I consume.

Thank you. I will do check this out. Really appreciate your suggestion.

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I'd say if you don't have the itch, sting and burning (like being in a nettle patch) the rash isn't DH.  It also presents on both sides of the body.  It's weird but true.

 

You may want to consider the breakout at the tailbone area could be Shingles.  My doctor told me that if the nerves in that area are inflamed, Shingles can pop out.  I usually had Shingles run along my sciatica nerve (on thigh) but I first broke out at the tailbone area.

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About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

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I have been gluten free for 2 1/2 years. I still have DH outbreaks but they are not as severe as they used to be.  I am very sensitive to iodine. It will cause an outbreak within hours. I used to break out all over but now it seems to be confined to my arms and across my shoulders and back and on my buttocks but in a much smaller area than it used to.  I was one of those who seemed to improve immediately and couldn't figure out why I would have major breakouts for no apparent reason.  I believe  I have had this build up under my skin for so many years that it will take many years to get rid of it.  I had skin issues, allergies as a child & I am now 60 yrs old. I also had the migraines, joint issues, asthma, seasonal allergies, etc for all these years. I so look forward to the day that I do not itch.  Don't give up hope, for some of us it just takes longer.

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About 15 years ago, I developed an unbearably itchy rash over most of my body, that lasted almost a year. Thankfully, it eventually cleared up but after that, I would, from time-to-time, develop itchy patches and also experience major flare-ups 2 or 3 times a year that would last about a month or so. Last August, I developed a horrible, prickly, burning rash over large parts of my body that lasted 4 months (until December). After eating a muffin one day and experiencing a major flare-up shortly afterwards, I decided to go on a strict gluten-free diet. Within a week, I was almost rash-free! What a gift to be free of that horrible itch and to have soft, clear skin once more! But sadly, my joy was short-lived! For the last 3 weeks, I have been struggling with extremely itchy patches on my arms, hips, back and face - strangely, the rash always seems to return in the same places on my body. I had a biopsy done, which came back stating that the results were consistent with an allergy to medication! I was not taking any medication! No blood tests or any other tests have been done - the dermatologist and my family doctor did not seem to feel that it was necessary. The fact that the rash cleared up so quickly after eliminating gluten completely from my diet (I am hugely vigilant about this) suggests to me that I have a sensitivity to gluten. In addition, my digestion seems to have improved (very little bloating, gas, and constipation now), I have more energy, and I am experiencing much less joint stiffness and pain. But, why oh why, am I experiencing this dreadful rash again?! Thankfully, although it is still bumpy and very itchy, it does not seem to be as extensive (at least, not yet) as it was back in the fall! But, the mysterious rash continues to be very uncomfortable and, at times, I feel as if I am unable to cope. It is certainly a dreadful thing to have to live with, that is for sure! I am wondering if there is anything else I can do. Would taking a probiotic help? When people are sensitive to gluten, might there be other related foods that could also trigger attacks? If anyone has any suggestions, I would be very grateful.

I was diagnosed with DH before Celiacs and suffered from the skin rash for 5 years before being diagnosed.  Even after switching to a gluten free diet, the rash persisted.  My dermatologist suggested going on Dapsone and within hours of my first dose, the itching began to subside.  This May, I will have been on Dapsone for one year and it has been my saving grace from itching and the awful blisters. 

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    • Squirmingitch, I forgot to mention best of luck to you during the storm! I hope you are safe and that your home isn't impacted too badly! I'm on the coast in SC so we will see some storms from it but nothing near as bad as what you will have. Take care and good luck.
    • SquirmingItch, I really appreciate you gathering info for me! To answer your questions, yes, I'm on Dapsone now and have been on it for about 4.5 weeks. I have been gluten free for the same amount of time. I started on 50 mg of Dapsone which didn't seem to help much. I spoke to my doctor about it and after about a week she raised it to 100 mg. Since then I did notice a huge improvement in both my rash and itch. I no longer have any active rashes and my itching isn't completely gone but it's very minimal. I have been getting weekly blood tests done and will soon be moving to monthly.  My DH skin biopsy was done before the gluten free diet and Dapsone. My results for the skin biopsy came back as inconclusive, but even with those results, my doctor was convinced I had DH. I specifically asked her about the fact that she took the biopsy directly from the lesion rather than next to it and if that affects the result. Her explanation was that if it's a fresh enough lesion that isn't scratched, there should be IgA antibodies present. But she said that an inconclusive result isn't surprising because the IgA antibodies come and go from the skin so quickly that it can be very difficult to get a positive result, even in someone who is positive.  That's when she decided to run the celiac blood panel on me. And even though those results came back positive for the deamidated gliadin and negative for tTg, she still is very convinced that I have DH. I am happy that my doctor seems to be certain, but I would just feel better if the results were more definitive. The one other thing I am waiting on is I have been asked to attend grand rounds at the local academic hospital in 2 weeks. I guess grand rounds is where all of the academic dermatologists and dermatopathologists get together to review certain complicated cases. They will meet with me, review all of my pictures, biopsies and blood tests. My situation has been so complicated so they asked me to come. I am hoping maybe then I will get some more answers. 
    • It sure is, it really is. 
    • shellyb, I have info. for you & you may yet be able to get an official dx from your dermatologist as she sounds like she would be willing to learn. If you are dx'd with dh it is definitive & no other testing is needed. You don't need to see a GI. Im in FL & have had a long day watching Tropical Storm Hermine & making preparations for it's track which is over where I live. I'm tired! I will have links for you to reputable medical info. on the rash but it make take me till tomorrow or even longer if we lose power.  I'll be back as soon as I can. Question: You're on Dapsone now? How long have you been on it? How is it working for you? Are you getting the proper testing at regular intervals to make sure it isn't doing bad things to you? Were you gluten free before the skin biopsy?
    • Thank you so much for your quick response, GFinDC. While I wouldn't be completely opposed to another skin biopsy, I already had 4 done (3 were done prior to my dermatologist suspecting DH) so I don't love the idea of  yet another hole and scar on my body. Plus, fortunately I don't have any fresh lesions now, which I believe is needed for the biopsy. I wish I would have known to see a GI before going gluten free but I was so desperate to get any relief that I started that and Dapsone as soon as my doctor mentioned it to me.  My rash is definitely symmetrical and I have it in all of the "classic" DH spots although it basically spread over my entire body. As much as I'd like a more formal diagnosis, I really don't think I can go through all of that again. It was so bad that not only was I getting no sleep but I had to change my sheets every morning because there was blood all over them. Sorry, TMI. The worst part is that this all developed during my ninth month of pregnancy and got much worse after I delivered my baby. So not only was I dealing with this insanely itchy rash but I had a newborn and a toddler to take care of.  My daughters' pediatrician did mention doing DNA testing on me first and then my daughters to see if there's any concern that they may be susceptible. I may just go that route for now. I was just curious if others have had similar test results to mine and how did their doctors treat it? Thanks again!
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