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My Story, Testing Questions
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9 posts in this topic

I am a 39 yo female & I have struggled with "acne" on my back, neck, scalp, face, and lesions on my abdomen, legs too (many of the lesions being symmetrical) since I was 14. Only the past year, in researching gluten did I discover this condition called dermatitis herpetiformis. It has been a horrible thing to have to deal with since all along I thought I had severe acne andI have spent $$$$s on product & MD visits without any relief. At the end of last summer, I decided to give a gluten free diet a try. My skin is nearly healed completely. I am so relieved. While my DH, which is what I believe I had, was more like acne - the pustules would crust and weep and take weeks to heal. I have also experienced swollen itchy eyelids & raised, pink flat rashes on my neck & back of my thighs over the years - which appear more like the DH pics I see on this forum. I am so irritated with all of the doctors I've seen that didn't help me. A while back I even had a derm do a large biopsy from a lesions on my back, but of course he didn't even mention DH. I am pretty adamant about not going back to gluten merely for testing. I think my 14 yo might have it too. She is breaking out just like I did at her age. I see my doctor in Feb and I really want her to give me Dapsone. My daughter doesn't want to be tested. So- since my skin cleared on a gluten free diet, do you think this is DH? Or am I just allergic? Any thoughts or suggestions on my story is appreciated. Thanks.

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Most of those with DH describe it as being intensely itching, as being also burning/stinging and painful. Is this the way it felt for you? I am not familiar with acne being described in this way.

BUT, it has cleared or is clearing on a gluten free diet. Yay!! If you don't want to go back on gluten for testing, you will have to be content with self-diagnosis if your dermatologist was unable to do it for you. She is unlikely to do so rectroactively. I assume this is not the same derm. who did the biopsy of the lesion. As you will have learned, the correct way to biopsy for DH is from clear skin immediately adjacent to an active lesion, so this biopsy was not destined to diagnose. :(

An allergic response would create different symptoms in your body, like hives, anaphylaxis; whereas an autoimmune response would create the kind of symptoms you are describing.

I suppose my question is, if your skin is clearing without having to resort to Dapsone, why do you want to have it prescribed? It is a medication with many adverse side effects and not one to be taken lightly. When symptoms disappear in the absence of gluten, it is reasonable to assume that they are caused by gluten and will return if you resume eating gluten. If the rash is in fact DH, then that is a diagnosis of celiac in and of itself, the skin version of celiac. Even if it were eczema or some other rash that was caused by eating gluten it would be reasonable to avoid gluten. The fact that your daughter has similar issues would tend toward the DH diagnosis since celiac is a genetically based condition.

Welcome to the boards, and I wish you continued good health as your skin continues to clear. :)

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You should be aware that dh can present at any time even if you are gluten free until all the antibodies are out of the skin & that can take 2+ years. So you have relief now but you may flare again. That is what is so hard about dh. If people suspect they have it & go gluten-free & it clears & then months later, still gluten-free, they have a return of dh then they can think gluten was not the problem at all & it's possible that it wasn't. It's possible they did not have dh & just as possible that they do.

What I'm about to say is all conjecture on my part based on what I have learned & my own experience as well as what others here have reported. You are 39 now & say this has been happening since you were 14. That's a long, long time & if it's dh then it would follow that you have a bazillion antibodies built up in your skin. They are not likely to stay quiet from now on out. You follow my reasoning? Then too; it depends on the severity of the manifestation of a particular persons dh. DH presents in quite a few different ways. I believe the water blister presentations are the most severe form of presentation of dh. From what you describe, yours did not get to that point so perhaps (hopefully) you will be a "short timer". And if we follow that same line of reasoning then your daughter @ 14 should have a quick & easier road of it.

I agree with shroomie about the Dapsone. Were I in your shoes, before I tried Dapsone, I would try limiting iodine intake if/when you get flares.

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writer73

Someone posted a site that I have been reading. It may help you with your skin issues. Personally, I don't see how someone could say their DH was like acne.

I am taking Dapsone because I told my PCP I could not take another day of the INTENSE itching, burning, stinging of this rash. You can read about Dapsone and I am being carefully monitored via lab work monthly and seeing my doctor. She started by taking lab draws every 2 weeks but since I didn't have a negative reaction, she orders them monthly.

Here is a site that was posted, it may help you.

http://celiacdisease.about.com/od/symptomsofceliacdisease/a/Skin-Based-Manifestations-Of-Celiac-Disease-Can-Take-Many-Forms.htm

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I've read DH can present in different/varied types of rashes/lesions that is why - considering the stubbornness of my skin issues is why I considered going gluten free. I figured it had to be an internal matter rather than external-hygiene, soaps, lotions, etc and from the relief I'm finding from a gluten free diet I am pretty much convinced its autoimmune related to gluten. The lesions were horribly itchy resulting in a compulsive need to touch, rub, squeeze, and itch. I am having added relief from using calmoseptine cream.

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my 26 year old daughter has had boils in her groin, mostly under the underwear elastic line in her leg creases, since she was 3 years old. i took her to several docs for it and no one had a diagnosis. she had terrible acne, incuding cystic acne on her cheeks, neck and back, throughout her teenage years. i had the same thing - absolutely terrible acne for probably 10-15 years and even now still break out sometimes. i had boils in the creases of my legs as well, although not the level of issue with boils like she has and i haven't had them now for a long time.

i got diagnosed in november and all 3 of my kids went gluten-free. for the first time, her boils are healing. it took about 6 weeks to begin to fade, but they finally seem better. they have been a nightmare - she's seen dermatologists and even took Accutane for 4 months. talk about a terrible drug and it didn't do a thing for them.

i wonder if DH has more forms than just the one symmetrical itchy-blister appearance and researchers haven't connected all the dots yet on it.

there is an RN here who specializes in celiac disease that we've consulted with - she told me that it was very likely DH that was causing my daughter's boils. the RN was diagnosed through DH herself, and she's been completely gluten-free for 6 years. she said it takes a long time for the antibodies to leave the skin. after 6 years, she still has some itching on her legs - and she's fanatic about no gluten. she says she gets sick for 10 weeks from a literal crumb of gluten.

i think docs simply don't know much about celiac around here. i've been to many and mentioned my stomach problems to every single one and not one ever suggested celiac disease. my mom had ulcerative colitis, and after researching celiac disease, i'm certain she had it as well. i would trust my own experience and research over the doctors, unfortunately.

anyway, all of that would support your thoughts and experience. you might want to just give it a little more time before trying a powerful drug - if you can stand it, that is.

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As described in Henry Weightman Stelwagon's book describing the different forms of DH there is a papular presentation of dh.

Link to the sticky at the top of this dh forum which links the book:

http://www.celiac.co...ns-of-dh-types/

Medical definition of papule:

http://medical-dicti...nary.com/papule

http://www.medterms....articlekey=4762

So the papular presentation is not a blister.

The book was reviewed in 2007. See what they say about his book.

http://www.ncbi.nlm....ubmed/17942031/

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In addition to DH, I have had (what I've always assumed is) body acne since puberty that never went away (I'm 28 now) despite having extremely dry skin. Since going gluten free, I have also replaced all my bath and body products with gluten free alternatives, as well as moisturizing my DH lesions, acne (or whatever) breakouts, and my keratosis pilaris with organic virgin coconut oil. In the few weeks since I've started all this, the acne on my back has almost completely cleared up. I have absolutely NO acne on my face and neck now, for the first time in my adult life, and I'm even on my menstrual cycle right now.

I know there's some debate regarding topical gluten absorption, but using strictly gluten-free skin products has been amazing for me, personally. Because I started the gluten-free diet and the change in body products around the same time, I'm not sure which of these things are the actual source of my suddenly (nearly) acne-free skin, but I suspect it's a combination of all of it. My DH is still atrocious, though, so I'm going to get more serious about going low-iodine and try to ride this out till the antibodies are gone. That's where the coconut oil comes in though - I've found it helps the itch somewhat, especially where it dries and flakes off.

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What I've found - I tried every cream, lotion, ointment etc for YEARS..with NO relief-from hypoallergenic to prescription. Many of the products even seemed to exacerbate it. Now, since going gluten free in my diet, my skin is turning around for the better. I can actually use lotions and creams that before gave me now relief. I am glad you, KD, suggested the coconut oil - because I had tried that prior to going gluten free in my diet - because now that I am gluten-free - it is really helping. Like I mentioned before I use calmoseptine also which really helps.

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    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of all grains, with the exception of rice which I reintroduced using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
    • I'm not sure I just had the endoscopy, and I've had a  songram. 
    • Thanks and I'm seeing a doctor in three months may have to make it sooner.    Thanks for all the replies.
    • Hey guys so question. I still am going through some of the motions to finally be diagnosed. I has a really bad case of acid reflux a few days ago and now i feel soo sick. Im still eating gluten because i got a negative biaopsy test but ive been told thag i more than likely still have it because its really hard to detect. Well i drank beer last night and had a poutine today stupid i know and now i feel soooo sick. And only felt really sick after the poutine. Now my question is can your symptoms get worse all of a sudden??  I have many other symptoms thaat read celiac deisease for most of my life. But since all doctors told me you have anxiety ibs and fibro at 28 years old. I just baiscally gave up and figured this was going to be my life feeling like crap for the rest of my life. Any thoughts??? Thanks guys. Sorry for the novel lol
    • A negative result from a biopsy that is. 
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