I have what may be a DH rash, but I began a gluten-free diet before my doctor recommended having a biopsy to confirm the diagnosis. My doctor’s recommendation for a biopsy was based on, in her words, a ‘low-positive’ tTG IgG result (My IgA result was negative, but total IgA was not tested). The rash has been so terrible and disruptive that I couldn't bear the thought of completing a gluten challenge to be diagnosed, so I thought I would rather wait and see if the gluten-free diet affects the rash over the next several months.  I’ve been eating gluten-free for six weeks now. After a month on the diet, I felt like the rash was receding: it was flattening out, not as itchy, and it was no longer affecting my ability to function in the daytime or sleep at night. About three days ago, I noticed increased itchiness and some of the previously receding rash patches have become inflamed again. I’ve also noticed new hives and intense itching on other patches of skin where no hives have popped up yet. The rash seems to be relapsing and spreading to new areas. These are my questions:

-I’ve seen from other posts that a DH biopsy can be falsely negative if a person is no longer eating gluten. But if I have active rash, how can there not be IgA deposits in my skin that a biopsy would detect?

-If I am ‘relapsing’, or the rash is spreading, is it a definite indicator that I have accidentally gotten gluten in my diet? In other words, does DH ever spontaneously relapse on a clean diet? If it only relapses and spreads when there’s gluten in the body, does that mean I haven't been perfect on the diet as I supposed I was, and could probably have a diagnosis through biopsy?

I’ve read that DH can be difficult to diagnose, and other skin issues can look like DH rash. I am still chasing a definitive diagnosis because I’m concerned that if the rash I have isn’t DH, I may be letting a different medical problem go undiagnosed and untreated. Thanks for reading this. I appreciate any thoughts you can offer.

So, I was diagnosed with Celiac disease along with dermatitis herpetiformis (DH) at age 9. Over the last 10 years or so I have been gluten-free, but would occasionally have mild break outs due to incidental/small exposure, but the breakouts were mostly confined and occurred in the same areas. Now I am 20 and have been on an extremely strict gluten free for 2-3 years. Starting about 7 weeks ago the rash came with more severity than it has since I was initially diagnosed over 10 years ago. Like I said I have been gluten-free for the majority of my life, and am not sure what I could have eaten to cause the flare up. The sores are coming up in spots that they have never shown up before, specifically the lower half of my back, both legs, arms, and buttox. Some areas have healed, but new clusters continue to appear. As of 3 days ago I have been using aczone gel (dapsone), triamcinolone cream to help the sores, I was also prescribed the antibiotic doryx. I am aware high Iodine foods can cause the DH to become worse.

 I believe that this breakout is being fueled by some "Gluten Free" pizzia sandwiches, with the first ingredient of Millet Flour, They were labelled gluten free, and this is really the only new item I have introduced lately. I have not had any breakouts within the last year and am really worried about this particular break out as I know what has already shown up will take months to heal. I have never had the rash continue to appear for more than a month and it has been 7 weeks since this began and I can feel new spots trying to emerge. The prescriptions have provided relief over the last 3 days and seem to be inhibiting the rash to a degree. I am really hoping they are effective in controlling this breakout. So I am looking for opinions:

Any other ingredients other than gluten (I am currently avoiding oats) that Celiacs/DH have had reactions to? 

Why is the rash appearing in places it never has before and why so severely ?

Any other suggestions to help me get my skin back to normal? 

I am in my early 60's and just heard from a sister that she was diagnosed with Celiac. I have never had digestive issues with gluten and so was not concerned. I did browse the internet to read about symptoms and when I learned about DH, it struck a nerve. For about the last 20 years, I have been having episodes of very very itchy bumps on my upper hands and fingers. It only shows up on the tops of my hands and I can go months between episodes.

I have been taking allergy shots forever due to my being allergic to my cats and so I thought that it was just another allergic reaction to my cats saliva. But now I am wondering if it might be DH. If I understand correctly, I would have to go running to my dermatologist when they appear, and before I scratch - almost impossible since they are SO ITCHY!

I took a couple shots of what my hand looked like this last time, after I had scratched a lot. The only thing I find that works is some left over lidocaine patches that I still have from when I had shingles a couple years ago. I cut them to size and then wrap my hand in gauze to keep the patch in place and then leave on for about a day.

What do you think?

Okay, it seems that I can't upload pictures. Someone tell me how to do that, please.

Thanks

Just met with my new GI Doc down here in Florida.  I was armed (and dangerous) with as much info as could be used to "educate" him, should the need arise.

Pleasantly, he was very knowledgeable about Celiac and DH.  We had a very good discussion for about 1/2hr.  He DOES want me back on gluten for 2wks before the endo.  He said that it was his experience that it's important to establish a baseline reaction in the villi to determine the effectiveness of eliminating gluten. 

He also made the point that for a small percentage of Celiacs, eliminating gluten still doesn't fix things.  He had a term for that, but said it's important to be able to contrast/compare to a baseline.

So...the bad news is I'm supposed to go back on gluten for a min of 2wks.

The GOOD news is, if you've gotta go back on gluten, Thanksgiving might not be such a bad time to do it

Just sayin.

Jim

This may be purely anecdotal, but I'm wondering if there's a connection between progesterone levels and DH flare ups.

Back story: For as long as I can remember, I've had a very irregular period. I've averaged about 3 cycles per year, but it's improving since going gluten free about 5 months ago. Over the past several years, I've tracked my cycles as a way to prove to my doctors that it was really that serious. Because of this, even being irregular, I now know when I'm about to "start." I've also noticed that my DH tends to flare really bad in the two weeks leading up to my period. Those last two weeks are when progesterone levels increase sharply. (Look up a chart of hormone levels during a cycle and you'll see what I mean.)

I know I saw a post on this forum about the progesterone-DH connection. It wasn't very detailed though and my searches have turned up very little. So does anyone have any info about this? Is it really that significant, or is it all in my head?

Hi there, I am new to celiac.com so bear with me.

Without going through my whole long story (similar to most here).  A year and a half later, still having a difficult time with GETTING the skin biopsy.  I may have a chance this week which I can post in a bit.  But my question is, if my skin is NOT producing enough eruptions or an eruption the DAY I go in, will the antibodies still show up?  It has been horrible all year and NOW that i might finally get somewhere, this week its calmed down a bit, but still there.  But is it enough?  I have NOT been able to do gluten free yet, that I so desperately need, because I keep being told if i do that WHEN and IF they ever dang test me, it won't be accurate.  I can give more background in a bit....but the doc that will do it (i think) is NOT the one who told me I 99 percent have it.....THAT doc wouldn't do it, cuz he felt unethical charging me a lot and sent me BACK to the uninformed HMO one....long story.  Even though I begged him to please do it anyway, I would sell my house at this point to get this DONE so i can help heal myself.

Thanks:)

WOW...i know its a few years old...the topic post....but yes this was ALL me...

thats why I couldnt figure it at first.....I originally got the big, raised, elongated type OVER AND OVER in the same spot....for months....i showed this to the docs...to no avail....

then the clusters....also the description of it eventually looking dried up....its kinda wierd...ones I was trying to save over time....are there, but look funny and old...and not current..

then a few months after THAT (where i am now), im not getting the huge ones so much...i am getting little tiny bumply ones...around the neckline and face....still liquid comes out...but these look more pimple like than the other ones...are those the bullous types i guess?  i wish i wish i wish i had known THEN to take pictures...i took them months later..but now what you see are scars...kinda outlines of where they were...i dont think my back will EVER come back....i used to have a beautiful neckline...sadly...i dont think ever again...you see all these vesicle type things....active or not....the outlines are stil there....but back THEN i couldnt get them tested.....but the descriptives from this book are great....i may like to read the whole book.

Thank you so much for the info. 

Hi all -

I have been broken out in hives for about four months now. This is after going back on gluten for several months so that I could be tested (didn't want to take any chances!). I tested non-celiac. Shrug.

Anyway, the hives had nearly cleared up after I started taking high doses of vitamin D. I am usually deficient in this and now live in a very northern climate.

Then I ate my husband's homemade pasta two days in a row, and the hives have come back worse than ever. I'm now going gluten-free again of course.

But I hadn't thought about this being possible DH until this event. The hives are mainly on my torso and occur anywhere skin would rub together or clothes might be tight. So it's around my armpits, across my waistband, where my underwear lines are (I'm a lady), and under my breasts (bra line). It sometimes appears to be around my hair line behind my ears like the picture below - the skin will be itch and rough-feeling but not fully break out.

The hives occur very mildly in the crook of my elbows and behind my knees. Basically more like eczema, but it doesn't look like eczema. It looks exactly like this: 

No blisters, but raised bumps that will seep and scab if I scratch them too much. They are insanely itchy.

Can DH occur in the locations I've mentioned but NOT the hands, or outer elbow/knees? And no blisters.

Thanks.

This is the 4th time I have had this rash. It begins as a burning, tingling sensation on my right thigh and then on the left thigh. Within minutes, I have hundreds of tiny, pin-head size bumps that begin spreading down both legs, usually to both sides of abdomen spreading to meet in the middle. In the past, My thighs look as though they have been burned, it is so red. It has been on both arms and shoulders and on my upper chest; this time it was both wrists. It is always symmetrical. I have never in my life had any rash or bug bite that was this intensely itchy. It is worse in the late afternoon and at night. The bumps eventually crust over, leaving white, dry flaky patches but they have never oozed any liquid.

The first time I had it (following a bout of subacute thyroiditis), it lasted 2-3 months. My family doctor tried oral steroids and 3  different antihistamines. The Vistaril helped me sleep, but nothing helped the itch. Then I tried Clobetasol with minimal relief. After doing a lot of research, I eliminated gluten - and the rash begin to clear a week later. My doctor said it was probably coincidence. By the time I finally got in to a dermatologist, there was not much left to see.

This go around, I got in to a dermatologist within days. He mentioned Grover's Disease, allergic reaction, and 4 or 5 other possibilites, including DH, although he said DH was low on his list of possibilities, as he said I did not have it in the typical areas. He did a punch biopsy (on a lesion) and sent me home with a prescription for Clobetasol. I tried it for 3 days and gave up. I was still up all night itching. Back to the gluten free diet and 5 days later, the itching lessened and the rash is starting to go away.

My family doctor did do a blood test for Celiac disease (don't know exactly what tests) and it was negative. The only local doctor recommended on this site is a gastroenterologist and I really don't have many GI sypmtoms, although I have been diagnosed with IBS many years ago.

All of the pictures of DH I have seen show rather large blisters and mine does not look at all like that - but eliminating gluten seems to be the only thing that helps. What do you think?

I get a spotty rash on my torso after eating gluten that is very itchy but slowly disappears after I stop eating gluten. It looks like pictures of DH before it blisters, just like this: 

I always assumed it was some kind of eczema (which I also get from gluten), but it looks different and it is a lot itchier. I've never continued eating gluten to see how bad it gets.

Does DH behave like this or would it still blister regardless of whether I quickly stop eating gluten? Any advice greatly appreciated

I have been dealing with a horrendous rash/bug bites for the past six months. First biopsy (on lesion) that was taken of the lesion suggested arthropod. Put on prednisone for 4 weeks and gave me permethrin just in case, though doc did not think scabies). Did not respond to prednisone (only that new bumps did not show up and still itchy after permethrin). Other three family members at home have no signs. Went to another derm who also did NOT think scabies and did another biopsy which suggested possible pemphigoid but not strongly. Went to another derm who said I had scabies and nummular eczema and gave me oral ivermectin. When my bumps were still there with only mild improvement he gave me a shot of triamcinolone right before my 2nd and last dose of ivermectin. Finally bumps were going away though large nummular-looking ones were stubborn. However, once the triamcinolone started wearing off, the bumps/bites started coming back, many of them in the exact same spots (I could tell because of the scars that I had). Went to fourth derm who suggested DH but my blood tests came back neg. So she took another biopsy (on the lesions, not next to them) and said the results suggested arthropod reaction.

My question is if one has dermatitis herpetiformis and a skin biopsy is done ON the lesion, can pathology come back to suggest an athropod hypersensitive reaction?

I am 49 female and I think I am about to lose my mind. Have had GI symptoms for several months, nausea and stomach pain after eating and constant diarrhea for no good reason. Recently dx with type 2 diabetes and controlling with diet and A!C down significantly since dx due to change to diabetic diet and then I get this recurring rash which I had exactly a year ago and I have patches of blisters on my knee foot, face, ankle and several fingers and toes and it itches like crazy and the pictures on the internet of DH look exactly like what I have except mine is less severe but it is spreading. My face feels sunburnt and under my eyes are all red and puffy and my eyelids are swelling. Even my ears feel red and hot and I have patches of red in my eyebrows even. My nose is also completely red and I have several lesions on my face.

Made apt with family dr but not the one I normally go to bc he was out into March and I can't wait or handle this itching until then. The one I am seeing is a little jerk but of course had availability and I have dx myself anyway. With all those symptoms I am pretty sure I have celiac. Question is if he won't order blood work or biopsy of skin I will have to go see a specialist and from all the reading U of C in Chicago has a great department for this and it is an hour from where I live in Indiana so I can go there. I figure tho it will take several weeks to get in there so in the meantime what do iI do. If I go gluten-free now and/or convince Dr. Jerk to give to Dapone will my test results be inaccurate or falsely negative bc I have been gluten-free and taking the medication for a while? I want an accurate dx and I just have to ask this Dr. Jerk to do what I want and hope I can get in fast at UC

So questions is what to do before get to UC and Is UC as good as it appears to be from my reading. If Dr. Jerk won't give me any blood work orders, biopsy or even Dapone what else can I do to combat the rash but also have correct results and UC? Any help is appreciated. I am so upset and can't work like this and well you all know the story, I will lose my business and my house and everything. PLEASE HELP I NEED ADVICE!! Thanks. Crystal. The main thing I need is just for this itching and burning to go away !!

Hello everyone! I've been a reader and watcher of this forum for about 4 years now. I first got a terrible rash back in 2011 at age 57 and after researching what on earth this awful itchy rash could be, was directed to this website and this forum. It turned out to be a Godsend. To make a very long journey and story short, I went gluten free after determining that what I had was DH. It took about 13 months for this terrible rash to finally clear up after becoming strictly gluten free. It was maybe the most miserable year I ever had ever had in my life. The itches would wake me up 4 or 5 times a night, every single night. I scratched till I bled, and tried everything possible to stop the terrible itch. I can see why at one time it was called the "suicide itch"! I have had minor flare-ups now and then since it cleared up in 2012, but they were very minor, and very manageable, that is until I went to Italy last fall. I was there for two weeks and I was not going to miss the wonderful pasta and pizza that is offered there! So that's what I did. I ate like a pig! I started on dapsone a week before I went and for the two weeks I was there, just to stop anything in it's tracks. Well, I went off Dapsone when I got home because it made me extremely tired, and boy, did I pay! I broke out in a major rash from the gluten I had consumed. The rash lasted about 2 months, and was mainly the back and sides of my scalp, my elbows, knees, and the small of my back, but it itched like crazy! During Thanksgiving with my family, my niece who sells doTerra brand products, got me to try their Deep Blue Rub, a lotion with essential oils in it. It really worked for me stopping the itch!!! I'm not trying to sell anything, or endorse any product, but wow, did it help me get through the month or so the rash was still around after Thanksgiving. It has a strong smell (pleasant however) and I just wanted to pass this along to the members or anyone struggling with DH. I know how terrible it can be and this product really worked for me. I hope this will help someone. It's not cheap but a little goes a long way. I will be posting more now that I've joined the crowd here, and offer any help that I can from someone that's been there.

Hello, I am 55 female diagnosed with lichen sclerosus which is also on my legs and mid section.  Since that diagnosis I have also been diagnosed by my doctor and her physician's assistant as having gluten rash and was told to NEVER eat gluten again.  My dermatologist that I go to for the lichen sclerosus also told me to never eat it again.  Three years ago I had an endoscopy and blood test for Celiac which came back negative.  my rashes that aren't the lichen sclerosus are indeed blisters that itch on both sides of body, mostly on shoulders and upper arms, back of scalp/hairline and mid/lower back, sometimes fingers and here and there.  They do scab over quickly, are tiny and itch mostly before actually becoming blisters and then scar a light brown color.  Is it possible I have dermatitis herpetiformis when three years ago my bloodwork *iga* was negative and my endoscopy was normal.  Unlike most people, I am hoping to be diagnosed wrong....whereas it seems everybody else is wanting and looking for a diagnosis of celiac/dermatitis herpetiformis and their doctors won't give it.  Thank-you!

Over the last year or so I have been breaking out it a rash from &%#@.  I finally find out it is from a gluten allergy and have been told I need to avoid all gluten.  It feels SO overwhelming.  Please give me some good news!  Feeling......really overwhelmed.

I wasn't going to post until after I have a diagnosis, but I've been reading the forums now for days and feel the need to say "hi."

Short story, I've had eczema my entire life (I'm over 50 now) and have basically learned to live with it.  Until a few weeks ago when I happened to google "rash on buttocks" and it led me to DH.  Add that to the odd rash on my arms (last winter) and the rash on my legs that I thought were bug bites (last summer) and it just all seemed to click.

I was at my GP two days later and she said I had an "uncommon" rash on my buttocks and sent me to the dermatologist for a biopsy.  I saw him two days ago, and he said "your rash looks like a common case of DH."  He did do a biopsy, so now I wait.

So now I wait, it's a bit odd and nerve wracking.  All the photos and my experiences tell me this is exactly what I've had all my life.  One dermatologist did test me for celiac using a blood test about 7 years ago when she said my rash looked like a celiac rash.  I was happy when it was negative.  Now I know that doesn't mean I actually was/am negative.

I'm feeling a bit conflicted right now, I almost rather have an actual positive diagnosis than just a wishy washy one.