After lurking around these forums I am finally making a post. Just looking for some insight/advice from experienced people, so thank you in advance.

I will try and make this as short as possible I promise!

For as long as I can remember I have had GI issues. The usual bloating, gas, diareah, constipation. Had food allergy test and blood test when I was maybe 10-13 years old and of course nothing. Just the usual "Irritable Bowel Syndrom". Fast forward to last year-I am now 28 years old-

• I started to get incredibly itchy bumps on my elbows that lasted maybe 3 weeks. Never went to doctor and eventually just went away
• A couple months after that I got another itchy rash but this time on my thighs (not the groin but the top of both thighs, symettrical). This was so itchy that I went to my doctor. Doctor said its probably contact dermatitis. Gave me a cortizone cream that did nothing.
• 2 weeks later went to Dermatologist. Dermatologist did not know what it was but said looks like eczema. Gave me corbetisol which i think did help but not for long.

Around this time I started to read about celiac and gluten. Immediatly i thought this has to be it so I tried gluten free and rash went away. However I dont know if it was the clobetasol or the gluten free. Here are some other interesting facts that should be factored in:

• around this time I find out my first cousin (my dads brothers son) was just diagnosed with Celiac by blood test and endoscope
• My dad has Type 1 diabetes since age 10
• my uncle, his brother has type 1 diabetes since age 9
• reason for including this is the auto immune connection

So at this point im kind of doing a gluten free diet but really only about 70%. The rash comes back and i go see a different dermatologist. He has no idea what it is. I ask about DH, and he says hes only seen 4 patients in 25 years with DH but he says ok ill do a biopsy. He does a biopsy ON THE INFECTED SKIN which is a no no. Plus the rash was 3 weeks old and already itched to the point of bruising. Of course biopsy comes back negative for DH. Doctor says its def not the alternative diagnosis's listed like eczema, scabies, etc. So 3 doctors literally said "i have no idea what this is".

So, finally on to my question. I went 80% gluten free for the past 6 month with no rash and it did help with the GI symptoms. However, I NEED a diagnosis to be 100% gluten free or else I just cheat. So 3 weeks ago i started eating gluten again pretty heavily. The rash is just starting to appear on my thighs again. Its never appeared on the elbows except the first time.

Is it possible to have a 3 week lag time from starting to eat gluten and getting the rash?? Everything I read says usually 24-48 hours but its never been that way for me. Both times I reintroduced gluten it was about 3-4 weeks until the rash appeared. Right now i am trying to get into a derm who is knowledagble on DH but thought maybe you guys could give me some insight or thoughts.

Thanks a ton and sorry for the long post!! Oh and I will post a picture as soon as I figure out how to.

From the first time I got the rash. Does this look like DH to anyone? Bruising is from itching so hard. Same thing on both thighs. Thanks.

Is it possible to get outbreaks of DH in areas that are not Knees, Elbows, Back, Shoulder Blades?

Hello,

If you have been tested positively for DH can you please share with me about the locations of the outbreaks on your body? 

My dermatologist insists that my itchy, recurring rash is not DH, but maybe a contact Dermatitis that my non-existent cat gave me, or from poison oak despite that I am no wilderness girl these days...I have been told by a gastroenterologist that I most likely have Celiac as I have been dealing with all the things....all the symptoms and I have never had a biopsy. 

I have this "OMFG WT!!!! AHHHHH" rash all over the backs of my legs, shins, and a couple spots on my arms right now, I swear, I can't believe how intensely the itching is, my goodness!!!

If you can share the locations of your breakouts with me, it will help to inform and answer the question:

Is it possible to get outbreaks of DH in areas that are not Knees, Elbows, Back, Shoulder Blades?

Please document your rash in photos, print them out & take them to the derm @ your appt. The rash may not look like your photos or be flaring when you see the derm. You can't rely on just telling the doc what it looked like, you need to show them!

Do NOT get a biopsy if you have taken oral steroids or used topical steroids in the past 2 months.

DO NOT go gluten free or even gluten light until AFTER the biopsy has been performed. 

Hi all! Been reading a lot of the topics on this site and finally decided to make a profile. Ive been diagnosed with celiac and dermatitis herpetiformis for about 7 years now & treating it with dapsone. My dermatologist did a skin biopsy that confirmed. So no question about  what the rash actually is, I know it's definitely DH. The dapsone did keep the rash under control, as well as (trying) to follow a strict gluten free diet. although i would indulge sometimes when i was first diagnosed, i've learned that it's just not worth it anymore as my rash has gotten worse over the years… it was just manageable with the medication b/c even if there was possible cross contamination, i feel like the dapsone helped the rash to not come out? if that makes sense… 

Anyway, now i'm pregnant and haven't been taking any dapsone. & i must've gotten glutened good because my rash is back and in full force! My doctor says taking the dapsone as needed shouldn't cause any harm… but i think she's an idiot and it's far too strong of a drug soooooo i just haven't been taking it.  I don't want to risk the possible side effects it could cause to an unborn baby. 

i guess my question is, how long after getting glutened does it typically take for the rash to heal and subside? it's been 3 weeks since i ate a restaurant that i'm pretty positive had some cross contamination, and its been just a few days since i drank a decaf skinny vanilla latte from starbucks (Their light syrups DO contain gluten)  SO STUPID!!!!!!! i'm just curious to know how long i'll be dealing with this particular outbreak because it is making me miserable. maybe i'm also just here to vent too! DH SUCKS!!!!! lol   Also, what's the deal with all this iodine and salacylates sensitivity talk a lot of you keep mentioning?? I don't think i'm quite ready to cut iodine out of my diet just yet, as i've read that it can be crucial to the brain development of babies…  Theres quite a bit of it in my prenatal vitamin. however, i don't know if it's been worsening my outbreak, i think (& really hope) i just got glutened real bad… 

thanks for reading! i appreciate any and all feedback !!!

Hey all -

I was newly diagnosed in April, and I went completely gluten free a few days later (with some mistakes at first, but I am learning a whole lot here!).  The rash that was used to confirm my blood panels is DH but I never received any treatment for it, despite that I have had it for 13 months now.  It is on my scalp.

Instead of getting better with this gluten free diet, it's getting worse.  It's spreading and spreading and feels like I have 1000 fire ants all biting me at the same time.  I tried everything, even apple cider vinegar, but no relief.

This morning I insisted on seeing the endocrinologist that diagnosed me.  I told him if he didn't help I was going to scalp myself, that I simply couldn't take it anymore.  He looked it over and sat and thought about it for a while.

Then he told me to get 20mg Pepcid and to take it twice a day.  He explained it was a level two histamine and should calm the irritation.  He also prescribed Thiamcinolone .1% lotion cream and told me to use that twice a day as well.  Has anyone ever heard of this, and did it provide relief?  There's nothing wrong with my stomach.  I did do a search on here but didn't see this discussed.

Back in late 2011, I joined this forum after having self-diagnosed my DH / Celiac condition.  Needless to say, I got a wee bit jaded after recovery / healing, backslid, and DH is back with a vengence.  This time bringing intense Edema in my hands, wrists, forearms, feet, ankles, and calves.  Beer was my downfall.  I've been again gluten-free for over 2 weeks, but my DH hasn't peaked yet ( ie, new small lesions still manifesting in a diminishing fashion ). 

The Edema I now have drove me to the emergency ward 2 days ago as I didn't know if it was my Kidneys, Liver, or Heart ( I'm 56 years old ).

Blood tests for Kidneys, Liver, and Heart came back negative, so it's Celiac.  All I was given was Atarax for itching, no diuretic ( I'm taking Diurex on my own ).  Fluid build-up is scary ( can't even see my right ankle bones ).  This time around DH got my eyes too ( yes, eyeballs itching - used anti-histamine eyedrops as suggested elsewhere here ).

The Edema causes me continuous pain and burning let alone the DH nightmare I've once been through.  Still using Vanicream ( moisturizer ),  Witch Hazel for itching, but the Edema is excruciating at times.  As for my eyes, I used Zaditor anti-histamine eyedrops with better-than-average success.

Thus, short of a worsening Edema condition, I'm left to Diurex, time, abstention of gluten ( and of course my favorite beer ), and prayers that God will help me heal again.

Edema tip:  Use pillows to elevate feet and hands if necessary for daytime rest periods, and night time sleep.  If I come across a " magic bullet " I'll report here.

Peace & healing to all, and don't forget:  Be Love,

WF

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Hi everyone!  I am new to this forum as I just discovered I have DH.  I had been diagnosed with a severe case of Herpes Simplex 2 for about 5 years before my doctor performed extensive testing that showed I do NOT have HSV 2.  I had always loved my whole grains, thinking I was eating healthy; little did I know!!  Only a month into my gluten-free diet, I am still having DH symptoms.  I am trying Dapsone for the first time, so we will see how it goes.

The point of this post is to find out what treatment options work for the rashes and blisters, what you have found effective or ineffective.  I would really like to know how other people deal with this ailment in their day to day lives.  

I prefer to use aloe vera directly from the plant.  I have found this to be extremely effective in healing the rashes more quickly.  I also use an rX lidocaine (2.5%) cream which alleviates the itching and burning.  And rX steroid cream applied 2-3 times a day seems to help as well.  I take epsom salt baths and rinse my mouth out with salt water (I get DH orally) which burns but helps heal the lesions faster.  I am one of the unlucky ones who gets the rash in my buttock/genital area (sorry if TMI).   Using the lidocaine and steroid creams mixed with aloe really helps!  

Also, what do you guys tell people who ask about the rash?  Mine tends to resemble a burn in the early stages on my hands, so I just tell them I had a kitchen accident or something.  I wish people would mind their own business, but I realize that the rash looks horrible and people might think it is contagious.  

Thank you for replying to my post!  Bless you all 

Hi Lovebetter, and welcome to the forum!

There have been studies linking PPP (and all psoriasis) to food intolerances. My PPP was getting really bad, and I decided to try gluten free to see if it helped. It did at first, but then it came back when I ate gluten free cornbread. It turns out that I am HIGHLY intolerant of corn, as well as gluten. Now it seems that tree nuts bother me too.

I have had times when the PPP is totally GONE, and then I get into corn (it is in EVERYTHING ), and it comes back. Gluten and nuts are easier to avoid. If you go with nothing but meats cooked plain, brown rice, and broccoli, cauliflower, squash or asparagus for a few weeks, I'd be willing to bet you will see mahor healing.

Then, you can start slowly adding other foods. To check out the corn thing, just get yourself some gluten-free cornbread like I did. Within a day or three of eating it, you will know. Then, after you've healed again, try adding nuts. Then nightshade veggies (tomatoes, potatoes, peppers, and eggplant). Once again, if they cause a flairup, you'll know you can't tolerate them. Once you've healed again, try yet a different food.

I'm thinking it's going to take me a year or so, but I WILL find out exactly what else bothers me.

As for biotin, I don't think it helps with the PPP, (it's the diet that does that) but it DOES make my hair stop falling out, and I feel better when I take it.

One other thing I have read about is candida. There are some who think that ALL of our food intolerances come from having rampant yeast overgrowth throughout our systems. To get rid of that, we need to stop all sugars, and keep the carbs as low as possible. (That's why I eat a lot of brown rice - it's WAY lower in carbs than white rice. Besides, many brands of white rice are dusted with corn starch to keep it from being so sticky.) Then you need to find some GOOD probiotics. Some have only acidopholis - we need as many different strains as possible. AND we need to find it without wheat or corn!

If there is anything I can do to help you, just let me know. And don't forget, there are a BUNCH of very knowledgable people on this board who can help us both.

Hi bartful and everyone, 

I'm new to the forum, but had a google before I joined and I like what you have to say.  I have been battling what I now think is possibly psoriasis for about 3 years.  It started as an itchy pus-filled pimple on my right knee.  I didn't think much about it(splinter or gravel?) but it just wouldn't go away..soap  and water, dettol, iodine and many other treatments just made it more itchy... I was a bit stressed: living in the hot, wet tropics and studying/working with two small children.

I scratched it and it grew into a small sore that would sometimes weep or suppurate (no surprises there) but  it would not heal.  i'm generally pretty healthy, but have put on  about 10-15 kg s a mostly stay at home mum.

I'm 42 years old with no skin conditions in my past or family. I have noticed my skin is generally getting drier. I have had  gestational diabetes, and my excess  fat is abdominal in general...so cortico-steroid, stress related.  I have a pretty healthy diet...no fast food, lotsa salads, I eat meat..(.and would like to stop), lots of berries fruit and fibre. No alcohol...but I have developed a coffee addiction.

Anyway started to get worried as it was incredibly itchy and went to doctor again.  I thought it may be fungal, or even some nasty viral or bacterial infection. I treated with antifungals (Lamisil, Hyroderm, iodine, Scabies treatments and too many others to name) religiously as prescribed, took antibiotics and eventually it did get infected.. a large sub-cutaneous lump formed just above my knee and there was 'bruising' and shooting pain up my thigh just inside the quad muscle....I had swollen lymph glands in my groin and armpit.  It became something that actually frightened the doctor and they tested for meliodosis, and other flesh eating anaerobic bacteria.  I developed something close to blood poisoning and cellulitis at once and  thought I'd die.

I was pumped full of antibiotics (again) and recovered, the knee lesion slowly reduced and disappeared.....briefly. The next wet season it just started up again and grew bigger (you can imagine how hard I tried not to scratch it).  I actually poured on really hot water to get some relief.

I was very worried it may be contagious, kept it covered with gauze and would wash sheets and everything it touched everyday,... kept  it really clear of my children, stopped shaving my legs,  wearing shorts, skirts or going swimming.

I had been to a number of specialists by now... no answers.

Anyway it started to spread to my lower legs, Both knees, ankles, elbows, hands and fingers, toes and wrists...always a few blistery papules then raised red, spreading lumps that flaked and peeled in biggish scales...all incredibly itchy...I thought it must have something to do with diet and reduced my gluten intake...raised it with doctors and specialists who took scrapings and told me' it had nothing to do with diet'.....fell badly off diet.  Living in a regional town, access to specialists was pretty limited and the main one I saw literally wrote "It could be anything"...I was discouraged to say the least and continued my google searches and slowly circled in on dermatitis herpetiformis.. or psoriasis, .although I hadn't eliminated eczema, psoriasis or some other form of dermatitis (including any contact dermatitis...so you can also imagine what I was doing at home....cleaning with pure soap, organic this, lemon-juice, salt, clove oil and vinegar...and rapidly going insane).  I raised this with my doctors and specialists who continued to prescribe expensive creams but not decide what it was. I  had allergy testing (on my back) which caused further itching and frustratingly hard to reach or verify what had caused which reaction!)  oooh I lerve that doctor!

So anyway, 

I have 'had a falling out' with my Specialist. His parting words 2 yrs later, were "oh that's definitely psoriasis, I can see it clearly now, its developed and is clearly psoriasis, incurable, you will have periods of relative relief, but its hereditary and there's sure to be someone in your immediate family who has it."

Well that gave me hope (!).

So about 3 months ago it I found another specialist (its a small town so they are likely to know each other and get along very well) "Its psoriasis' no doubt at all".

That's fine, medication includes now $50 salicylic aqueous cream (nothing new there) and $30  Diavobet (nothing spectacular there... except the cumulative price, when I go thru a jar and tube a month and have to go back to the specialist every 2mnths  another $120 to get the prescription).and it seems to be just holding the rash steady.  I notice some reduction when I'm not stressed,  don't eat dairy or gluten and use a great quality moisturiser/barrier cream  eg: with emu oil, beeswax, jojoba, sausage tree extract...all good.  all expensive.

I am finding the diet difficult (to say the least) . I recently  "broke out": ate a Litre of icecream (unheard of previously) and am really  paying for it now ....both ankles swollen, itchy and or currently sore...like 2nd degree burns....cannot wear shoes!

So I think there's a link.

I have also noted bloating, gasrto-intestinal pain, nausea, and  gas and bowel 'issues' when I do eat something glutinous like bread. I have yet to convince a GP to do anything more than a blood test. So I'm suspecting a coeliac/IB link.

Its time for the elimination diet....now that is really daunting.  I really don't know how to start. Is dairy a big issue usually? Is red meat an issue? Has anyone tried the really high fibre path yet?

What do you (all) think it is?  and how do you get onto the elimination diet?" If you go with nothing but meats cooked plain, brown rice, and broccoli, cauliflower, squash or asparagus for a few weeks"...can I add pumpkin to that list?

I take multi vits, vitC and probiotic...I have yet to check if they have any gluten or dairy added....any advice readily sought. 

One thing more I should add is that I am of the "healthy gut biota camp"  I suspect all the antibiotics I took helped in the last few years (since having babies and coming into contact with parental-related gastro, coughs and bugs in general. I would like to draw attention to the great work being done by Dr steven Simpson and all the others on gut flora and fibre in the diet. For an example see Catalyst PT 1 and 2.

Not that i'm keen on a  transpoosion, just yet,....and anyway this skin disorder seems to be associated with duodenal (upper small intestine), and perhaps liver/gall fat metabolism?  Anyone have any clues about that side of it?...gut feel?

i really hope to hear back from anyone who has ideas to add or help to offer.

yours Scratchy

Hi,

 I'm a first time poster from the UK. I thought i'd sign up and discuss DH problems with you guys rather than my family who don't suffer from DH and i can't relate to them when i talk about this problem.

I'm 31 years old and i was diganosed with DH when i was 17. I first had symtoms when i was 14 and it took the doctors 4 years to finally diagnose me with DH. That was a horrible 4 years of my life suffering almost every night with the blisters, itch, burn.

I was put on dapsone which cleared my skin almost instanly and i've been on dapsone since. I've had a few attacks in the past while on the Dapsone. Especially eating alot of seafood and read that having a lot of iodine can trigger an attack?

During the last few years my diet has been a bit relaxed, not worrying about gluten free and relying on the tablet.

Recently i've been suffering from a bad attack (it's lasted the last 4 weeks which is the longest i've suffered since i was 17) I'm panicking a bit and wonder if its possible i've build a tolerance to dapsone? I've been to the doctor who has reffered me to a specialist.

I'm now completely gluten free - strict! (for the last 4 weeks) and will do so for the rest of my life. I'm still suffering a little with my skin though which is getting me down. I'm wondering should i cut out iodine from my diet? During the last few weeks i've had a lot of eggs and potoatos and wondering if thats triggered an attack? I've now cut them out my diet as well as milk.

I descovered there was wheat proetin in my shampoo so changed that and i've read that flouride in toothpaste can trigger an attack?

In the future i'd love to come off Dapsone and be completely gluten free - medication free.

Thanks for reading and would love to hear your replies.

He is 10 and has had  white bumps on the front and back of his leg for 2 years. We had him seen and and the pa at the derm.'s office said she did not know what it was but thought it was an immune response and that it would go away. Well of course they have not gone away and are getting quite worse. Most of the bums are white like little marbles under his skin. They are oval in shape and about the size of pencil erasers. Some are bigger. They are grouped together right behind his knee on one leg and then he has a few on the knee cap. A few are red on the back of his knee. They feel very raised and hard to the touch. He says they itch. They look quite funny as well. What do you think this is? Any advice would be helpful.

I have confirmed celiac. Ds did not test positive. But has always had very sensitive skin. He carries an epipen because his skin is so sensitive. 

What do you think this could be and how do I treat the itch? We will go back to the derm. this week and will not see that useless pa.

My doc says my Psoris on my one heel is more than likely caused by my Celiac. I have been gluten free for many years and successfully so.... BUT those darn restaurants get me every time. I am on my 3rd bout of Poison Ivy or so I thought. Kinda strange that I have a spot on my shin that I shaved inadvertenly (not noticing the raised fluid filled rash) until it was too late. That spot took forever to heal. BUT I notice that this time around it's the same exact spot that is itchy and starting to raise up. I find that to be too coincidental to be poison ivy again. Anyone have their rash resemble poison ivy? Not to mention that the itch is insane.

Thanks...

I don't know if I have celiac but I want to get tested. About a year and I half ago (I was only 17), I got a bit sick and then after a few weeks I got these blistery things on the right side of my forehead (my right, your left). I went to a clinic and the nurse looked at it and said it looked like shingles. So I went to a doctor and told him what the nurse said. He said it must be and told me how my immune system must be pretty bad because most people only get shingles when they are older. I was under a bit of exam stress at the time. I've been feeling kind of sick the past few years. It's hard to explain. I was quite chubby as a child and as I got older I just lost weight. Not for any particular reason. I assumed it was because I grew but even though I'm quite skinny my body doesn't feel or look very good. 

I also have become pretty pale and I'm not sure if I'm anemic but I think I'm going that way.

So I researched stuff about celiac and the dermatitis herpetiformis pictures seemed to match what I had better thing shingles.

My "shingles". I had a headache for about a day before the stuff appeared on my forehead. It was a kind of sharp pain and my shingles were a bit itchy. I've heard that they're not as itchy as dh but how itchy is dh. It was itchy to the point that I sometimes felt the urge to scratch it which I admittedly did a little bit once or twice. The one time was after I came out of the shower and it peeled off a bit. Kind of like wet paper. That's the best way I can explain it. It looked a bit purple-ish.

I was gone in about a week. I was on meds for shingles but who knows if that even helped it go away?

I didn't take any pictures but I wish I did

Edit: I also just wanna add that I do still have skin conditions. I have acne which could actually be dh. I also have red bumps (which are often filled with white fluid) on my legs, the back of my arms, my chest and (worst of all) on my back. By worst of all I mean there're lots there..