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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Is It Possible To Get Dh In Genital Area?
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Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) :rolleyes: with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.

It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.

I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.

By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...

Thanks!

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Yes indeed, this can happen :D I am sorry you get it in this area. For me, this is one of many areas where it can happen. The first time I really freaked out and thought my beloved of 7 years had given me herpes. But of course, it tested negative for that. So what could it be? Well.... there weren't too many other possibilities. Horrible, painful and embarassing about sums it up.

You are far from alone.

I was actually diagnosed through DH biopsy.

You can get it anywhere. No kidding!

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Me too and was it painful! That was what finally got my attention enough to put it all together. It takes at least a couple of months to clear too so don't get rid of your cream.

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Thanks for the replies so far. I wonder how many people get this and don't even know what it is. I can't tell you how many boxes of Monistat I bought thinking it must be a yeast infection... :rolleyes:

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Well, this certainly dots the "i's" and crosses the "t's" for me. I lived exactly what you are talking about before going gluten free. The terrible itching, and extremely painful...every cream I tried barely touched it. I too, remember showering was painful, and probably the worst of the itching was after showering for several hours. This went on for several months for me, now, I can't remember if this was just before I went gluten free or not. Must have been, I have never suffered from it again. I did have DH on both elbows once, after using Tresemme, then never again.

Amazing what gluten does to some of us!!

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Oh, I think it is fairly common but people aren't brave enough to talk about it.

In my case, after 18 months of being gluten-free, I do not get DH much at all. The last time I got it in the area was after a major glutening a few months after going gluten-free. Since then I had a couple of small outbreaks on arms, hands and feet from lesser glutenings. I would like to tell gluenmommy that there is hope. Having something lke this really makes it easy to stay on the diet! :D

I am going to venture a speculation. In my case this came on late-- the last year or so before diagnosis after having active celiac for over 23 years. Maybe when your body starts depositing the anitbodies in you skin like this, you have a fairly advanced case? I also am more sensitive than other celiacs (I got sick at a gluten free cooking class!) So maybe this is some kind of indicator.

Good luck to all of you! May it never ever come back!

Death to DH!

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[

font=Tahoma]I have to say Lisa hit the nail on the head with summing it up as "horrible, painful and embarassing"! I get it on the crack of my behind and have seen many doctors including dermatologist who have done biopsys and still didn't get a diagnosis. They could tell what it wasn't but not what it was. After ten years of unexplained rashes I finaly figured it out in March. After doing a nutritional cleans that happened to be gluten free and thirty days of no out breaks I put the peices together! Since then I have broke out twice - once when I failed to check the label of a vitamine/supplament that contained wheat germ and another when I failed to read the ingredeints in a bottle of lotion. The thought of loading up on gluten in order to get a positive diagnosis through a biopsy makes me ill, I think I might try the DNA testing.

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Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) :rolleyes: with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.

It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.

I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.

By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...

Thanks!

I can really relate! I've had it in the anal area for years and tried over the counter creams to no avail. The water in the shower would burn the area. The area gets so scaly for me after the bumps come out. Mine should clear up after my endoscopy on 7/29 and I go gluten free. I've gone gluten free in the past and it really clears it up nicely.

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This is true for me too, in fact I only get the reaction in the genital area and no where else (which seems unusual to me?) I've been dealing with this for four years. If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures. The itching is enough to drive someone mad in the worst moments. More recently I've started seeing the rash appear on my penis, which is really pretty terrifying. With each year the outbreaks seem to be spreading on my body. I've been leading a very strict gluten-free diet for over a year, which really helps stop outbreaks, but I inevitably get some sort of cross-contamination every month or two and have to deal with a new flare up. I'm realizing I must be extremely sensitive. My dermatologist prescribed the steroid cream Cloderm, and this helps reduce the rashes within a few days. I hate to use this cream on such sensitive areas of my body since it runs the risk of permanently thinning my skin, but so far I have found nothing else helps and during an outbreak out I get desperate. I'm thinking about trying Dapsone as soon as I have health insurance again. I wonder if others have found Dapsone helpful?

Sorry if that was TMI but I feel like people really need to talk about the embarrassing reactions so that we know we aren't alone in this.

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Hi, Jogo and welcome. That does sound painful.

This is a 2009 thread so you won't likely get replies from the people who started. You bumped it and it's interesting to me because I used to get a rash on my hand I thought was herpes whitlow. I had clear, tiny, intensely itchy blisters that would come up on my index finger. They would itch/hurt so badly I'd scratch them open. I could never figure it out because I'm not a dentist, and I don't have genital herpes or cold sores. Now I think it was DH. It took a couple years gluten-free for me to stop having the itching, though it stopped blistering sooner.

I can understand your reluctance to use Cloderm. There are some posts around here on eating low-iodine as well as gluten-free for DH. You might search for them. Perhaps if you can get the iodine out of your diet you won't break out as badly when you get CC'd.

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If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures.

Hey that sounds like me! Finally some others with the same problem. I have been suffering like this for years; in fact, it is the sure way for me to know that I've had gluten from somewhere. My main symptom from gluten is bowel pain, but sometimes with just a slight discomfort I don't know if it was gluten or what, but then the next day a new fissure just pops open in "that area" and then I know for sure.

They can take weeks to heal, but I've found something that helps me heal fast. I soak in an sitz bath for a bit after using the toilet, then apply pure aloe vera gel and dry my rear end with the hair dryer. Keeping the area as dry as possible is helpful for healing.

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If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures.

Hey that sounds like me! Finally some others with the same problem. I have been suffering like this for years; in fact, it is the sure way for me to know that I've had gluten from somewhere. My main symptom from gluten is bowel pain, but sometimes with just a slight discomfort I don't know if it was gluten or what, but then the next day a new fissure just pops open in "that area" and then I know for sure.

They can take weeks to heal, but I've found something that helps me heal fast. I soak in an sitz bath for a bit after using the toilet, then apply pure aloe vera gel and dry my rear end with the hair dryer. Keeping the area as dry as possible is helpful for healing.

I have the same symptoms but they extend into my perineal area (the area of my episiotomies). Does anyone else have these symptoms? Do you tell your doctor? Is there medicine that eleviates these symptoms? Please respond.

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Yes.

It's often misdiagnosed as herpes, especially if a herpes test comes back positive.

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I have the same symptoms but they extend into my perineal area (the area of my episiotomies). Does anyone else have these symptoms? Do you tell your doctor? Is there medicine that eleviates these symptoms? Please respond.

Yes they can vary, sometimes mine are around the anus, at other times they come in the episiotomy area. Sometimes they can be really long and extend all the way along the perineal area. ;-(

My doctor didn't give a medicine, just told me to keep the area clean and dry and don't wear underwear in bed.

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Yes they can vary, sometimes mine are around the anus, at other times they come in the episiotomy area. Sometimes they can be really long and extend all the way along the perineal area. ;-(

My doctor didn't give a medicine, just told me to keep the area clean and dry and don't wear underwear in bed.

This is an old post; originally begun in 2009 & then someone bumped it in early 2012.

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I'm new to posting on this forum but I have been on this site for the past year and finally come to the conclusion that I have DH and have had it since 2005. I to have this on my groin area and my perineal area. I felt that I should add my comments with others because DH does not always appear in a predictable way. I have been gluten free for 6 years and corn free since 2008. I can't seem to clear the DH though. It goes from bad to worse. Currently I'm doing minimal iodine exposure and am eating foods on the salicylate diet in the negligible and low categories. The rash seems to get worse. The first two weeks after starting this approach I felt greatly improved and then the rash flared even worse than before. I'm using a mixture of 50 percent zinc oxide and 50% sunflower oil to control the unbearable to some degree but the DH seems to keep spreading. I'm at a loss. Any suggestions?

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Are you absolutely positive you are not getting cc'd? DH is sensitive to the smallest amount of gluten.

Have you checked your shampoo/conditioner for gluten-free status?

Do you use any hand lotion or other products that you may get on your hands & then ingest when you eat something from your hands?

How long have you been using the zinc oxide? And where did you get the idea that zinc oxide & sunflower oil were the thing to do? When you say the dh is spreading; do you mean you just keep getting new lesions? Or do you mean spreading to more portions of your body?

I'm wanting to say it might be the zinc oxide. I can't tolerate the stuff & that was before I went gluten-free. Haven't tried it since. I only tried it b/c I wanted to use a sunscreen & all the "normal" sunscreens I was allergic to. The zinc oxide didn't seem to be much better for me.

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I don't know a lot about DH but .... could it be something else? You have been gluten-free for many years, maybe its something else?

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I tried zinc oxide and it did nothing for me either.

Try Benzocaine ointment over the counter...Walgreens makes one called Pain Relieving Ointment and it works temporarily for the burning stinging itching pain of DH.

Do you eat eggs or dairy? Both can be high in iodine.

Are you following the thyca.com low iodine diet to minimize iodine? I ask because they give a lot of information about where you could be getting iodine that you would never suspect. Such as canned goods. Canned goods have a lining that contains iodine. I knew at one point I was reacting to canned goods. At first I attributed it to the fruit then I realized green beans from a can did the same thing. Then I found out about iodine in the lining of cans and ditched the canned goods.

Do you live with gluten eater's or kiss a gluten eater? This includes humans and animals.

If you are still having active lesions after 6 years gluten free, I'd recommend getting a biopsy done to make sure it is DH and not something else. It doesn't sound like it has ever cleared. Have you ever been free of the rash since 2005?

Re-visit everything. Pots and pans...if you didn't change them, change them now. Clean the cupboards again, check personal products. Re-new the colander and the toaster.

Are you eating products that are certified gluten free? Some things are made on shared lines and that is not required to be disclosed. Only Certified is tested for gluten, so I would only use Certified gluten free anything at this point if I were still having DH.

Just throwing some ideas out there for you. Hope you feel better soon and thank you for sharing so others know how DH can present.

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I'm new to posting on this forum but I have been on this site for the past year and finally come to the conclusion that I have DH and have had it since 2005. I to have this on my groin area and my perineal area. I felt that I should add my comments with others because DH does not always appear in a predictable way. I have been gluten free for 6 years and corn free since 2008. I can't seem to clear the DH though. It goes from bad to worse. Currently I'm doing minimal iodine exposure and am eating foods on the salicylate diet in the negligible and low categories. The rash seems to get worse. The first two weeks after starting this approach I felt greatly improved and then the rash flared even worse than before. I'm using a mixture of 50 percent zinc oxide and 50% sunflower oil to control the unbearable to some degree but the DH seems to keep spreading. I'm at a loss. Any suggestions?

Anything greasy on my sores seems to prevent them from healing. Keeping them as clean and dry as possible does it for me, though that is a big challenge in the perineal area especially in summer!

As some one else mentioned, it flares up with the smallest amount of gluten.

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I had to really baby my DH. Before I knew what it was I sprayed an antifungal on it because it seemed to help. I think it helped because it had a numbing agent and it made it feel dry. The numbing part was great, but the dry part wasn't...it ended up making it worse - more irritated.

My best luck was with Vanicream lotion as far as keeping the skin soft and stopping irritation from scabbing.

My DH was under my arms - pits and surrounding area (actually, my actual pits were unaffected - they were white bullseyes in the middle of the red rash). I did have terrible underarm b.o. from it since the scabs captured the stink and clogged up the pores...

I had a brief episode down my butt crack and that was about the time my derm put me on steroids and a wham-bam double antihistimine that was also an antipsychotic - which was pretty handy since I was quickly losing it as the rash grew and itched down my butt. Luckily, when I got off the steroid the rash didn't come back except under my arms...so I don't have any more advice about dealing with DH down yonder.

My advice, baby it with a moisturizing lotion. Ice it (sorry, I know that could be interesting). Try to keep it dry when the blisters pop by airing it out.

I assume a doctor has looked at this rash and excluded other dx? Can you get it biopsied? Can you try dapsone?

Also, it can take a while to drop iodine levels...and some people struggle with one particular iodine source (egg yolks and seaweed were bad for me). In the beginning weird stuff set me off, but I was also newly gluten-free.

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Thanks for all your input. This past Sunday I went to a celiac expo hoping there would be a vitamin, shampoo & soap company represented but there wasn't but the quality of gluten and corn free products was amazing. My wife and I cook everything from scratch so we can control the food content. My wife got a blood test at the expo so will see if she is developing a sensitivity to gluten. I do have a Dr appointment near the end of this month. Perhaps we can start some testing again. The last time I had testing done nothing could be found. I mirrored many of your experiences, the Dr's just don't know. The last guy I saw told me, after I told him I was pretty sure I have DH, that many people are sensitive to gluten and the he went to a web site and pulled up one of the pictures that shows an individual with the the "mosquito bites" all over his/her body a told me that this is what DH looks like. At this point I just left knowing that he hadn't a clue about celiacs or DH. Oh, the zinc combo was created to relieve the itch and dry the area from the blisters. For me it works pretty good but it is very messy. If I'm not mistaken, zinc is one of the ingredients in calamine lotion. Calamine lotion was what someone here said helped then so I just played around with the non harmful ingredients. Sorry for the long post but I am really getting discouraged. I an looking closer at cc, and shampoos etc. thanks for all your comments and this forum is a marvelous thing . Thanks, Jack

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Jack, I hope you can find the culprit. BTW, I use Suave Shampoo & conditioner & it's gluten free. Crest toothpastes are gluten-free. Do you have pets? Cats or dogs need to be eating gluten-free or you can get cc'd from them. The lick their bodies with their gluteny tongues & we pet them or we kiss them. How about your medications, have you checked them? Both OTC & prescription. Does your wife eat gluten? If so, does she brush her teeth before you guys kiss? Personal products, creams, lotions, powders that she uses topically & then you nuzzle or kiss her could gluten you. How about things you are eating? gluten-free flours & such --- are they all batch tested, certified gluten-free? Maybe you are a super sensitive. I'm just trying to give you some avenues to explore here.

And last but not least, some of the literature states that it can take up to 10 years for the antibodies to get out of your skin. I surely hope this is not your case; I really do! But it might be so if you can rule everything else out.

Keep us updated & I hope you begin healing permanently soon!

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And I'll just have to trust you on the "drying out" thing. Because mine never benefitted from drying out, that just made the skin more irritated and painful. Especially moving my arms.

I struggled to keep my rash moisturized so it didn't crack and bleed. Only time I had to dry it was at night when the blisters popped, and I just used a towel packed under each arm. As soon as they drained I'd need to moisturize or it would feel like dried plaster and hurt like hell to move my arms.

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