Hey guys,

I am a new member but I've been reading this forum as a guest for a few months now. I think I might have DH based on the different symptoms others have talked about on here. I have an angry red rash all over my lower legs/ankles. It shows up on both sides of my body and currently looks like big open sores because I can't stop scratching it. It's been hanging around for 5 years now, some spots will heal and leave purple looking scars and new areas will open up. I also have a patch on my head and on my neck. I went to the dr and asked him to do bloodwork, he told me it came back negative for celiac and that it didn't sound like that's what I had anyway. My symptoms include horrible migraines (that usually start about 30 mins after drinking beer, eating pasta dishes, etc.) joint pain, gastro issues, infertility, etc. The doctor told me that since I wasn't throwing up all the time and losing lots of weight it probably wasn't Celiac and that my leg was probably eczema (i know I'm new here but I know there are lots of different symptoms of gluten issues so I don't think he knew what he was talking about). I don't think it's eczema though because i've had tons of different steroid creams prescribed by allergy doctors over the years and nothing helps it.

I was thinking about going to a dermatologist to get the rash looked at to see definitively what it is, but I stopped eating gluten about 4 weeks ago and already I'm seeing improvements in the rash and the itchy level. However, I was eating at a restaurant and think I may have been cc'd because about 30 mins after lunch my legs started itching like crazy, as well as my hands and fingers. I was wondering if it's worth it to go to the doctor if I already know that cutting out gluten is helping?
Do they give you something like a prescription to help with flare-ups? I would do almost anything right now to stop the itching. It seems like it's worse now than it's ever been (maybe because my body had a chance to heal a little and is now more affected by smaller amounts of gluten?).

I don't want to have to go back on a gluten diet after getting a small taste of freedom (4 weeks migraine free is longer than ever in my whole life) but I don't know if there's a reason you should go get a formal diagnosis. Any help would be appreciated!

P.S. I saw somewhere in a thread that someone mentioned photo boards? How do I get to those? My rash looks like the DH pictures I see online but this seems to be a more reputable source than just googling it.

Feb 1, 2014 I noticed bumps on my elbows and the itching was so intense! I also saw some on my hip bones on both sides and again intense itching. I saw a dermatologist and she diagnosed me with Eczema and gave me a prescription for a steroid cream. I used it for a  few days and it seemed to help. But then I started getting a burning feeling and bumps on my shoulders and the back of my neck. It itched like crazy. I itched them into scabs. I did not see any oozing. I also got them on the sides of my butt, my thighs, in which I itched bruises and broken blood vessels. My back has bumps up and down my spine. I went and saw my Dr. a few days ago and she ran some bloodwork and said she would not test for Celiac because its a waste of time, that is mostly comes up negative. She referred me to a dermatologist which I need to try to make an appt with. As of yesterday I have noticed alot less itching and no new outbreaks. I have to say the only other symptoms I have are bloating and stomach distention, tired and VERY anxious ALL the time. Does DH subside for a bit? For 2 days now the itching is minimal BUT I also have refrained from scratching for a few days even though it really itched. Any ideas??

Hi.  Bad mom here.  I am over 4 years gluten free as is my daughter.  The house and kitchen are gluten free.  My 11 year old and I have this down.  EXCEPT for the fact that I am an idiot.  I switched us to a new shampoo without reading the label (insert head smack here) and after my daughter broke out with a terrible rash on her scalp I *duh* realized that WHEAT was right there on the label had I bothered to actually read it.

We tossed the shampoo 2 weeks ago but we are both still miserable.  At this point we are using homemade soap with castile oil and rose oil.  Neither of us have experienced this kind of contact rash before.  Back in the olden days before I was diagnosed my rashes DH rashes (from eating gluten) lasted about 3 weeks.  

Does anybody have any experience with this?  Is there anything else I can be doing.  We are so itchy!

TIA

Hi. I'm currently undiagnosed and wondering whether I have DH and if this could help me reach a diagnosis.

For about 17 years I've had occasional outbreaks of a rash on my chest. There are occasionally pus filled sores and it gets really itchy. It never seems to go beyond my chest but occasionally I'll get one or two sores on my back or crotch. It's not really responded to any of the creams or antibiotics I've been prescribed.

Most descriptions of DH say that its on the arms. It doesn't appear there for me. Does this sound like it could be DH?

I also get sores around the back of my neck and scalp, raised pimples, very dry flaky skin/dandruff, but sometimes big flakes. The closest description I've seen online for this has been seborahic dermatitis. Unless that could be DH also?

HI all,

I've been lurking for a month or so reading all your posts and conversations about DH and I think I have it. What a bummer this is.

      It all started last August when I started having heart palpitations and dizzyness which I immediately went to my ND because she could see me faster than my MD. She checked me over and couldn't find anything wrong so she gave me some supplements for high BP and sent me on my way.

      For the next couple weeks things did not improve so she ran a test on my adrenal glands and found that I was seriously depleted and that's why my heart was pounding and I was getting dizzy every day. She also, at this time, suggested I go gluten free to aid in the healing of my adrenals. Wonderful I thought, I'm officially not dying, and I immediatly started feeling better with the hormone supplements she gave me.

     Then, a few weeks after going gluten free, a rash started to appear on my fingers. Now, I've had this rash before and my MD had diagnosed it as dishydrotic dermatitis. The rash would always fade after a few months of sterioid creams.

This time though, it was more severe than it has ever been before and I started to worry since it was so painful and irritating. My ND counsuled me to go on the GAPS diet to heal my gut and she told me the rash would improve once I had healed my gut.

      This was three months ago and the rash continued to get worse until, one day, I googled "gluten free then rash" and I scored a hit in this forum. After about 3 seconds of reading about DH I knew it was a match. I immediately removed iodine from my diet and saw almost immediate improvment. This grew my confidence and I added a few GAPS diet friendly items such as: spinach, almonds, honey, and some other veggies. My hands reacted badly so I reverted back to a diet consisting strictly of chicken and broth again. This is a difficult diet to maintain for an extended period of time and I am starting to feel pretty down about it.

     Having now read some more on the forum, I realize that I'm probably sensitive to salicylates too. ARRRRRRGGG! Let me tell you how many foods are 1. gluten free 2. GAPS diet compliant and 3. salicylate free. ALMOST NONE. I pretty much subsist on bananas and chicken these days and it suuucks.

I understand that the DH will eventually fade and I will be able eat iodine rich foods again but I guess i wanted to tell my story so people could weigh in on my situation, you know, in case I'm missing something.

I am kinda worried about the salicylate sensitivity though. Is this related stricltly to the DH, the potential leaky gut, or do I have another issue all together I should be pursuing?

Thanks in advance for your advice, stories, experiences, and help.

PS I'm a 35 year old male. Otherwise healthy body and mind, just looking to get better. I've gone from 210lbs to 175 lbs on the restricted diet.

Does anyone know how to treat these bumps? Got glutened earlier this week and they've popped up again and are driving me crazy!

Hey everyone. Just wanted to say I am new here but I appreciate all the information everyone contributes. I was recently diagnosed with gluten intolerance. I do not have any of the digestive issues that come along with it but I get a terrible rash (DH) primarily on my knees, elbows, buttocks and now face and upper back. I have been trying to detox and strictly watching what I eat. I have been eating nothing but fruits, veggies, lean meat and drinking water like mad the last month and a half now. The only thing that seems to keep my skin under control is if I take a corticosteroid. If I stop taking it, within a few days I start to get the rash again. Does anyone know of a good detox to help balance the gut and flush gluten? I am currently on a probiotic, fish oil, drinking apple cider vinegar and eating sauerkraut by the forkfull. Thanks in advance for any advice and help.

In good health!

Hi Guys,

I have a recurring problem with dry skin on my scalp, I have been to the doctors many times for this problem yet I seem to spend more time struggling with this problem, rather than getting any relief from it. The doctors have diagnosed me with dermatitis, and tell me that the skin will always flare up, but since my problem never really goes, I am concerned I may have something underlying that is causing this problem!

My main concern is constant small flaking skin on the scalp; I wake up everyday in small patches of my skin, but I also have oozing behind the tops of my ears which crust. This symptom often returns on it own without any trigger such as itching. When I look through my hair I often see patches/dots that are not there. I also find my scalp itches like crazy if I don't get to wash my hair. I would describe my scalp feeling dry, tight, and burny. It has nearly got me to tears its felt so bad at times!

The doctors have prescribed me previously hydrocerin crème, betanove scalp application and a antibiotics. But nothing really helps and the initial skin problems are returning a few months later. I've tried all the sensitive shampoo, t-gel nizorals! 

Does this sound like a celiac problem? 

A bit of background, very short version: (I have made other posts with the looong version)

My DS (age 6) had what I thought was DH on his bum/hips/lower back. Derm said it wasn't active and come back in 6 weeks to look for changes and potentially do a biopsy. We kept feeding him gluten hoping for a flare, but low and behold it cleared up on its own almost completely. This left me stumped, frustrated, happy for his relief but confused.

squirming itch, you said if it's DH it will undoubtedly return, and possibly with a vengance.

So here we are:

https://flic.kr/p/npNShL

This is way worse than his original rash which just looked like mosquito bites. This is raised and lumpy and awful. When I laid eyes on it I felt like I had been kicked in the stomach. Then I convinced myself it was poison ivy. Until this morning when the backs of his ears were inflamed and itchy. Then I noticed a few spots on the back of one knee. 

Does this look like DH to you?

Our 6 week follow up to the dermatologist is next week. I just called and the doctor's awesome office manager is trying to get us in on Friday. 

I'm mom of a newly diagnosed Celiac teen.  She has always has an "itchy rash" in her "elbow pits" as we call them since she was little.  It comes and goes.  She was diagnosed ~1 month ago after being in extreme abdominal pain with nasuea, BAD gas, and diarrhea for ~2 months.  She also suffers from depression/anxiety/panic attacks.  Obviously this whole ordeal has been quite stressful.  A week or so ago, she was glutinated and also in extreme stress about school.  An itchy/burning rash popped up again in the elbow pits and down the front of her arms to her hands and also both knees.  I have compared it to pictures of DH and it's pretty much a match.  

My questions are:

1.  Does stress and/or gluten cause flare ups?

2. What do you use to calm the itching/burning? After trying cetaphil, cortisone cream and oral benadryl; she found some SolarCane and it finally gave some relief.  The bumps went away in about 24ish hours, but the itchy/burning feel lasted 3-4 days.

Thanks!

Last week I was suffering from some DH breakouts and hives (new makeup issue).  I went into my local Wallgreen's and decided to pick-up some new gluten free lotion to try.  I sampled Dove Cream Oil (extra dry skin/advanced formula) on my itchy arms and hands in the store.  I laughed to myself thinking, "I'm either going to feel a little better or a whole lot worse in about 30 minutes."

I liked the way the lotion felt on my skin and decided to purchase it.  I noticed on my drive home that I was no longer itching on my hands as I had all morning long.  I waited a few hours and my hands felt soft and calm.  I decided to go for the gusto and apply it to my whole body.  Same result.  My DH on my stomach, back, legs, and shoulders were no longer driving me insane.

I had a peaceful nights sleep for once!!!  So, I have been religiously this cream to my body for the past few days.  I actually feel normal.  WOW.  I forgot what that was like.

I am pleased to announce that my skin is calm.  No new breakouts.  My DH spots are healing & I have a new sense of hope that I can experience some relief!!!

It is very early on, but I really wanted to share this good news.  I know how miserable this itching can be and if this helps anyone else I will be so pleased.

Thank you.

Hi there, I am posting on behalf of my husband.  I have some questions and need some help from you guys, please & Thank you!! I want to be detailed, but I also don't want to go on and on and on.

Husband was basically born with Ulcerative Colitis, when he was in his late 20's they decided to remove his colon and give him an intestinal pouch (weird, right? called a J-Pouch).

He had a endoscope done a couple years after the surgery and they found that his Villi were flat. They told him to eat Gluten-Free for 3 months to see if his villi would rise again, and if they did rise, the doctor said that would mean that Gluten caused the flatness, therefore my husband would have Celiac's...

He ate gluten free (he was completely miserable) and he went back for the check up and they found that his villi were still flat. Because of this, they said he had Celiacs.

My husband, being stubborn, decided that he wasn't going to eat gluten-free anymore. Just being stubborn, he told himself that this Celiac's thing isn't real and doesn't exist, though, I think he was just joking...

Anyways, my husband never had Any stomach issues or any problems what-so-ever to make him think he had Celiacs, besides the flat villi.

Do to having an internal pouch (basically, his small intestine is now his colon....) he does go to the bathroom a lot and it's usually loose stools (TMI?) but all of this is expected from his J-Pouch, he never had stomach cramping or any other Celiac's symptoms... So he kept eating gluten, and we began to forget he was even "diagnosed" as having Celiac's.

Okay - fast forward like 8 years -

It's now June 2014, and in february 2014 my husband pointed out that he has a rash on his buttocks that's extremely itchy.  We thought, well, that's gross, but let's see if it goes away. Then a couple days later, he has bumps and a rash across his eye lids. We thought, well maybe he caught something weird, so we decided to go to the doctor. 

The skin doctor tells him that he has a fungal infection on his rear end, and maybe a bacterial infection in his eye, and takes  a skin culture. That comes back negative for bacteria. So, my husband takes some medicated lotions and pills and we wait it out. Though, we are never satisfied with thinking that it's a fungal rash. We go back for check ups and now the doctor says it's Eczema and gives us more medication. 

Weeks pass, and the rash is changing and spreading and finally, it almost 100% clears up.

I start googling pictures and I come across DH (the gluten rash) and we think it looks a like! Then we are reminded that my husband was once thought to have Celiacs! Maybe we found out what this is after all!

We have a final check up with the doctor and my husband asks him if this rash could be related to Celiacs, and the dermatologist laughs and says no, it's not. It's Ezcema! See! the medicine I gave you made you better therefore if it was DH, it wouldn't have cleared up.

We don't know what to believe. So at the beginning of April, when we thought the rash was all gone, we see it on his eyes again, and then his neck!, and his buttocks again, the back of his knees, his ear, his neck, his elbows, EVERYWHERE. It even spread to his cheeks and his scalp. My poor baby.

I basically made him start to eat gluten-free because we couldn't afford more doctor appointments. He's been gluten-free for about 3-4 weeks now and the rash is still itchy and still not going away!

We scheduled another appointment with a different Derm hoping they'll test his for DH.

my question is... Should he start eating Gluten again before this Dr appointment next week? How soon does he need to eat it again?

Also - does having flat villi be a symptom for something other than Celiac's? Could he be misdiagnosed for Celiacs if we find out this rash isn't gluten related?

His attitude has been so deflated over these past few months, and I just want him to get better. and he wants to eat Gluten so badly. I'm just tired of these doctor visits when they aren't listening to our experiences with his stomach and skin problems.

Any help?advice? anyone go through this?

Hi Everyone, 

I have Gluten sensitivity. I've been gluten free since February 5th. Beginning three days ago I began using a hand cream with vitamin E and to my surprise on the third day of use I happened to be in the sun and I got a terribly itchy rash in all the places I used it. The rash was particularly bad on my forearms. I had a similar rash on my scalp and groin, however, it cleared up since going gluten free. In addition to the rash I also noticed my anxiety and depression has ramped up considerably. My initial thought was this was a reaction to the sun, however, this didn't make any sense because I've been in the sun many without this type of reaction. We happened to read the ingredients on the hand cream and noticed "wheat germ oil". In looking this up I noticed it is refined so that gluten may not be a problem but I am allergic to wheat also, a slow reaction allergy, igG.

My sense is that my immune system ramped up to cause these reactions. Can anyone tell me if this might be a typical DH rash?

Thank you,

Frank  

Ive just been diagnosed with celiac disease a few weeks ago and I have the dh rash on my face, elbows, buttocks and knees. I have been gluten free for these few weeks, and have been given dapsone to reduce the imflamation of the rash. I am taking 50mg per day and the dermatologists says this medication is for long term. However I have read dapsone is a pretty strong drug which can deplete nutrients in the body. I wanted to know if there was any other alternative to dapsone such as a cream which will reduce the rash especially on my face?

I have been diagnosed with celiac a few weeks ago and have been gluten free ever since. I began getting a rash approx. 8 months ago on my buttocks, then I spread to my elbows and knees. The last 2 months I got a rash on my face but I wanted to know if there is a possibility that the rash on my face is not dh and is something else? I have been given dapsone medication to reduce the immflamation of the rash for 2 weeks now which has been effective to some extent. Is it possible to have more that one skin problem at the same time, because the rash on my face seems to different. The rash on my face seems to be red and thickened. it is quite sore if I massage or rub my face and becomes even more red when massaged without any moisturizer.

Hello everyone, I'm new here so please be kind

Anyways, I have had an extremely itchy rash on my leg for around two years.  Small white bumps which I've scratched until they've bled and then crusted over, and scratched all over again...you get the picture I'm sure!

I went back and forth to the Dr who prescribed emollient creams, steroid creams and moisturisers which didn't help at all.  I kind of just resigned myself to having this rash on my leg and got on with life.

A couple of weeks ago the same rash appeared on my right forearm.  Very itchy small white bumps and not particularly dry skin either.  In  the past few days the same has appeared on my left forearm. 

I googled the rash and it looks pretty much like DH. The symptoms of coeliac ring true with me also.  Ever since I was a child I have suffered from chronic constipation.  Numerous doctors appointment, special diets which included fibre drinks and actually sprinkling fibre on every meal and even operations the cause of my constipation was never resolved so again, I resigned myself to thinking this was just something I had to deal with.  When I was around 16 I started getting pains in my bones and joints, so much so I almost had to repeat a year of school as I struggled to walk.  A doctor diagnosed me with growing pains.  These pains are still kind of there and some days they are better and sometimes they disappear for months and then sometimes it's painful for a good while.  I suffer from migraines, and have cut out my supposed triggers but still get them now and again.  I've had several bouts of severe depression but am now off all tablets.  I feel tired all the time and could literally sleep at the drop of a hat!

recently in the past year I have had diarrhea maybe once  month which is unusual for me but I thought maybe it was just my constipation getting better.   Does think sound at all like coeliac and DH?

I went to the Dr today and explained all this and she seemed dubious but agreed to get a blood test for coeliac.  She also prescribed steroid cream and moisturiser.  From what I read, and I may be totally wrong with this but could the blood test come back negative but I still could be gluten intolerant?  I've not changed my diet at all so have been eating normally as I understand you have to do this before you get tested.

I;m so sorry for rambling, feeling a bit confused!  I asked to be referred to a dermatologist but the Dr said she wanted to take the itch out of the rash first.  The steroid creams I've had in the past haven't worked and I'm presuming that because I'm still eating gluten I will be effectively "feeding the itch".

Anyway, thanks you so much for reading and any advice would be gratefully received.

Thankfully I found this thread!!  Think I'm suffering with DH.  Going through this process.  I found this cream through a Google search.  Has anyone had success with it?  I know I have to make some serious diet changes but this seems like a good thing to use for some relief and helps with scarring. Also, I'm reading a lot about gluten free but I was told the best things is to go GRAIN FREE??  Any thoughts on that?  So overwhelmed.  Thanks for your time!

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