Dude note: To help celebrate and promote Celiac Awareness Month, I will be writing 30 blog posts over 30 consecutive days (weekends excluded) with the theme “30 Days of Helping 30 Celiacs”. Each post will be aimed toward helping one specific person or group of people. If you or someone you know needs help, guidance, advice or a shoulder to cry on, please contact me and I will do what I can to help. On the 31st day, you’re on your own. Totally kidding.
Today’s 30 for 30 blog post is for: All people suffering from dermatitis herpetiformis, but specifically Monika, who asked me to highlight DH this month, since it’s a pretty common celiac symptom and it’s rarely talked about on this site.
So where was I? Oh yeah…Jimmy Kimmel.
Just kidding. Today, by popular demand, we’re going to talk about DH.
What exactly is dermatitis herpetiformis?
Dermatitis Herpetiformis (DH) is a severe, itchy, blistering skin manifestation of celiac disease that is genetically determined and is not contagious. The name, dermatitis herpetiformis, is a descriptive name and is not related to either dermatitis or herpes, but is a specific chronic skin condition. The rash may occur in the form of small lumps, like insect bites and in some cases form fluid filled blisters. These small blisters are called vesicles. However the rash may appear hive-like, persisting in one area. DH can flare and subside even without treatment. The rash usually occurs on the elbows, knees, and buttocks. When the rash subsides, which it often does spontaneously, it may leave brown pigmentation or pale areas, where pigmention is lost. (source: celiaccentral.org).
(Dude note: Above is a revised description of DH as my first description was totally lame…my bad.)
I hear about DH from many in this community but I have never written about it. Kinda one of those things that since I don’t have it, I wouldn’t know what to say about it. But I got a request from a fellow celiac to please talk about it so we can give those suffering from DH some Gluten Dude love.
And being that her email was so dang cute and pursuasive…how could I resist?
So Monika…your itch wish is my command.
You mentioned that May is Celiac Awareness Month, and you’re going on your month of helping us in that awesome way that you do. I was hoping I could ask a bit of a favor…*bats eyelashes*
In a recent post, the person who emailed you mentioned having two Celiacs at home with Duhrings disease. I got kind of excited because Duhrings/Dermatitis Herpetiformis is so often forgotten in the Celiac conversation, or at best is usually just an afterthought “oh yea, and you might get a rash…and now back to crapping your pants…”
For some background info…for about 20+ years I got run of the mill diagnoses of eczema/dermatitis, and we never thought much of it. As a kid, my mom get special soaps, creams, fancy bath stuff, plain cotton clothing…and I just dealt with my ever worsening itching and pain. I’d have these awful reactions and not be able to function. I’d be freaking out with an anxiety attack, crying over my computer trying to handle all the constant work that grad school throws at you while wanting to tear my skin off and die.
I tried researching if this could be something specific, I even tried looking up autoimmune diseases at a friend’s suggestion…and I just couldn’t find much. I eventually figured out some kind of wheat connection after the awful linguini incident of ought twelve. I sorta ran with that as it was all the information I had to go off of…and I didn’t really know what to do with it.
In the way that so much of the population is oblivious to Celiac, I knew nothing of it. I had a coworker a couple years back who had some stomach thing, that’s it. It wasn’t until my sister started talking about Celiac that I started to figure this out a bit. When my rashes stopped, and I kept researching, I finally found a mention of DH and nearly started crying. I finally found something that described what I had.
It’s really fitting for me that May is Celiac Awareness Month, because the end of April marks my one year totally gluten free anniversary. The amazing year that I finally figured out my DH and immensely improved my quality of life by changing my eating habits. I feel amazing, and I want to shout it from the rooftops.
Here’s where that favor from so many paragraphs ago comes in…Dearest Dude, I guess I just wanted to ask you to highlight DH a bit. You’ve mentioned it in the past and, along with all the work you do, I love you for it. Maybe a tinge more though? I find that most times it isn’t even mentioned by name, just as “rash” under other Celiac symptoms.
The best description I’ve heard is this it’s like “rolling in stinging nettles naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas…” Which is so much more than “oh yea, you might get a bit itchy.”
So far this link has had the most comprehensive information, and it’s what I share with people if they ask:
http://blog.glutenfreeresourcedirectory.com/dermatitis-herpetiformis-when-celiac-disease-gets-under-your-skin/
So, pretty please with a cherry on top? Do me a favor and give us 15-25% of Celiacs with mutinous skin a bit of the spotlight?
Thanks Dude!!
<3 Monika
You’re quite welcome Monika. Happy to get the word out and show some lovin’ for those suffering from DH. My heart goes out to you.
How many of you folks out there suffer from DH? Inquiring mind (mine) wants to know.
Monika
“wanting to tear my skin off and die”, my dear sweet Monika, you obviously have DH!
Your description is even better than the “rolling in stinging nettles” quote, which was how I diagnosed my DH, bless dear Emeritus Professor Lionel Fry’s heart, the internet and our fellow sufferer for that description.
I’m 18 months GF this weekend and my DH is almost in complete remission as long as I stay away from any food that even looked at a wheat facility – thanks again to the GDude for this valuable insight!
My skin was so bad, including cancer, that my dermatologist didn’t consider DH. Being 100% (as possible) Gluten Free has almost cured me! Could say lots more about this subject but off to see Mom’s cancer Dr this morning for results of CT scan from Monday! Let’s all hold our breath together!
Hap
We can breath again now!
Mom’s “Stage 4 B cell Mantle cell Non Hodgkins Lymphoma with tumors including her lungs and 89% cancer cells in her bone marrow in April 2013 is now headed towards REMISSION!!! Chemo was halted (horrible side effects) in Jan’14.
Mom’s began eating gluten free in Nov ’13 and her ONLY TREATMENT since Jan ’14 has been eating GLUTEN FREE.
Mom’s wonderful oncologist smiled today and said keep doing what we are doing. These results are hard for the Dr to believe but the proof is in CT scans and blood work! This is Mom’s 3rd round of Stage 4 Lymphoma since 1998.
If we had only known to be free of gluten sooner! Staying GFF and go back for CT Scans again in August!
Hap
PS I love my dermatologists and they take good care of me but it’s just that I was so sick and my body looked like a Christmas tree when I first saw them that the answer did not appear to be simply that I was eating gluten. They had to get rid of the cancer first which was obviously now caused from the AI response from the gluten.
i want to use this medium to thank dr.unuareghe for the great work her did in my life, i was diagnose of herpes 2015 and i went to most of the medical hospital and they prescribe different kind of drugs for me which i took and no improvement i was searching through help when i saw for the internet for help when i saw a post of a post of how dr. unuareghe cure herpes and they drop his email there so i have to email he and he replied me without delay, i complained to he and he has me how long i have been suffering the sickness, i told he every thing he need to know about me, so i make the purchase and he send the cure to me through courier service which i received after three days, so i applied the cure as instructed by he for six days and i went for test to confirm, i can t believe what i see when my test result came out,my result came out negative and ever since then i have not have any outbreak, please help me to thank this wonderful great ma for helping me with his Africa herbal medicine, am so happy that am forever free from this deadly disease, if you are suffering of any kind of problem you can get in touch with he through his email dr.unuareghecuringhome@gmail.com
Ready to tear skin off. Aaaaahhhh!!! Rash only started this week
Sorry about the cancer situation.
I know it well.
I’ve recently deducted on my own after seeing dermatologists, etc I have DH. I finally asked for skin biopsy and got a ,” oh that’s a good idea!”
I found the pics of DH rash online.
Anyway my question is how long did it take for your rash to go away? I’m only 3-4 weeks GF.
I think the rash is quieter but still itches like crazy a few times a day. I want to rip my skin off!
Thanks
Cray, I was diagnosed with DH several years ago after going through 3 years of (here’s the way I put it) having an all-body (with the curious exception of most of my chest) rash of white hot mettle against the skin. Mine eventually progressed to even in my inner eyelids and the skin deep into my ears. However, I have never had to go gluten free, and although gluten is the trigger, I have no signs of having celiac disease in my guts. I still eat what I want, but have to take medication all my life. According to my dermatologist, it is likely safe to take dapsone (the antibiotic that brought leprosy to heal) in low doses for all or most of my life. In my particular case, I have almost no rash or itch unless I forget to take my pill. I also have to get liver tests every six months, to make sure the dapsone hasn’t damaged it (I’m six or so years in, and so far so good). Another effect of the DH for me is thyroid gland destruction over time. This is known as Hashimoto’s thyroiditis, which can occur with or without DH, but coincides frequently with DH. I have to take thyroid supplements to replace what my broken thyroid gland is no longer producing. Over time, it is believed the gland will cease to function altogether, in which case I’ll need more of the artificial stuff. I’m not saying that your experience will be the same as mine, or that you can definitely go back to eating gluten (especially if you’ve been diagnosed with having celiac disease) but I hope sharing my experience with you will give you more information to chew on, and just possibly more options. Whatever the case, with DH, at least for me, nothing is/was more important than having that rash gone (I tore all my clothes to shreds when I had it, could almost never get more than an hour of sleep at a time, and was very close to suicidal). Wishing you well, and be strong my friend. Brian.
I hope 🙏you had great resultson your CT scan!! I am currently dealing with day five of my DH (self diagnosed at the moment) due to one dr stating its scabies another swimmers itch and another food allergies.. i have been dealing with celiac for over a decade and have had all those diagnosis listed but what I.have now is new and horrable!!! Blisters lesions pimples etc on freakin fire for past five days and horrable nights!!
Just realized that I had been contaminated, terminated, kind of new that I was but I couldn’t quite figure it out. Do not buy one A-day vitamins for women had been on it for over a month all of the symptoms fall into place and due to the severe contamination I contamination I am assuming DH Has now arrived And is truly unwelcomed! I do go into a dermatologist in 2 weeks now that I’m back to being diligent and reading every label I am hoping to receive some relief. I am curling on prednisone however It is not helpful for this condition. I am living off of absent salt and oatmeal baths for Some relief. If anybody As any suggestions I am so open to feedback. Thank you Carla
I don’t want to leave out my eternal thanks to Jennifer Esposito either because I found the “stinging nettles” quote @ 1 am after Jennifer’s sweet voice woke me up at 12:30 am (from my gluten induced stupor) explaining Celiac symptoms and I started googling. Out of all of my horrible Celiac symptoms, DH ranks right at/near top with its pain infliction.
Hap
FYI for other DH sufferers – my “squamous cell skin cancer” on my back was same “squamous cell” lesions in my esophagus. In that regard, I’m grateful for the DH informing me before Esophageal cancer had a chance to kill me. Although the cream my dermatologist gave me did keep me from jumping off a bridge a few times. I sure am happy those days are behind me!
Hap
Can you please tell me what cream you doctor prescribed for DH? I have been diagnosed with DH, and after being gluten free for about 7 weeks, my skin is still burning, especially my arms. Any info would be STO appreciated!
Take baths with Epsom salt every day.
Nothing worked for me except the hair dryer believe it or not. It has saved me. I cook the area where the rash is with the hair dryer 6 inches away from the bare skin and move it closer until the point you can’t take it but don’t burn yourself. You will be able to tell that point once you try, and it will be the best feeling pain you have ever felt. I do this a few times a day with a flare up I get mostly from cross contamination and I don’t need any ointments or pills. The relief lasts a few hours and only takes 30 seconds plus it seems to heal much faster. I get the rash in the same spots on my hips and lower back. Obviously don’t do this if the rash is on a sensitive area like your face. Try it and be amazed. Reply if this works for anyone else, I am curious…
I am a celiac, d x’d about 8 years ago. Have suffered from the “rash” for much longer, for which I believed, and had convinced my drs, was recurring shingles. My pcp dr just now put this together, that the rash is not shingles, but DH. Now I know why it never made any difference in my out breaks if I took the anti viral medicine or not!
Two things that have helped me: I take Gabapentin for another issue with nerve pain in my cervical spine . But it helps the rash pain as well. Helps a lot,seriously, especially at night. This makes sense to me because this rash pain and itch are caused by the inflammation of the nerve endings. (It would certainly be “off-label” use of this medicine, but it really does help me. I suspect the Lyrica might work the same way, because it is prescribed for nerve pain issues as well. However, that’s a guess on my part.)
The other thing that has been my saving grace is sunburn spray (Solarcaine) or aloe lotion with lidocaine. Make sure it has the lidocaine, as that is the numbing ingredient. The spray works best for me because I get the rash on my back a lot, along my spine. (Which is why we were convinced that I suffered from recurring shingles.) The aloe would be beneficial to the skin healing, but I can spray where I can’t reach to apply a lotion. Guys, you all need to try this! It has saved me from wanting to “tear my skin off and die”!!
I always thought I was careful with my diet, apparently I haven’t been careful enough!! Thank you Gluten Dude for all you do! Your site is amazing!
eliminate iodine (well severly limit) as it can make the DH rash worse even with GF diet. I found I also need to eliminate dairy and other grains too as they are too close to gluten for my body to distinguish yet.
Linda, hi! Ask your doc about dapsone. I was diagnosed with DH a number of years ago (3 years of a hitherto inconceivably painful rash that took over (almost) everywhere the body has skin, but without any internal evidence of celiac disease), and low doses of dapsone got rid of the rash almost overnight. I know your post is fairly old, so maybe you’ve already found this, or some other solution. Wishing you excellent health and lots of happiness. Brian.
You know, I’m now starting to wonder if my “psoriasis” isn’t psoriasis after all…
It certainly couldn’t hurt to ask your medical team to take a skin biopsy for analysis! That’s the most reliable way to determine whether a rash is DH. Good luck, and I hope you feel better soon!
I’m thinking the same thing. I was diagnosed with Psoriasis over 20 yrs ago. I’ve been to numerous doctors/dermatologists and have taken most all creams available including Embrel injections for approx 3yrs. I have an appt with a Specialist my Dr has referred me to next week. I hope he has some knowledge of DH. I feel this moment a my last hope. The rash is so bad I have prayed to die many times, and it’s so hard to explain to someone how horrible the symptoms are.
Hello. Twenty-four years ago I developed a horrid rash on my hands. When I saw the doctor, she looked alarmed and asked how I burned myself. I told her I didn’t, but that they just itch and burn unbearably and I had a strange desire to scratch with a razor-blade, or to even chop my fingers off (sounds so morbid, but DH is morbid). She found it difficult to believe. Although I never touched the chemicals in the printers at work, she was convinced I was being burned by them. Even after I left that job the pain never ended. Some hydrocortisone creams gave slight relief, and one cream that worked cost over 100 dollars per month…I couldn’t afford to continue with it and I later discovered it was carcinogenic anyway.
A couple years ago I decided our family would go entirely gluten-free due to behavior issues with my children. It helped them, but after a year I was astonished to discover my hands were completely clear and comfortable without obvious scarring. I was elated!!! For the first time in over twenty years I wasn’t suffering from ANYTHING. Even my asthma no longer bothered me, and severe environmental allergies seemed to disappear.
I cheated over Christmas and consumed very little gluten, and DH came back. I told a naturopath that I strangely found relief when I put my burning hands under hot running water. He said to continue doing that when the itching was unbearable. That’s how I get by until I heal again. I run my itchy fingers under very hot water until I feel a sort of mini-explosion in them. The itch is completely (though temporarily) gone, and my rash oozes like crazy and then crusts, but at least I can function and am no longer desiring to scratch with razors or chop them off. I know that as long as I obsessively avoid gluten, it will go away again. This is reminding my why I must NEVER EVER eat gluten again.
hey , I was finally diadnosed with DH rash in May of 2014. I had horrible itchies from my 20’s on, and had alopecia areota. It was in May of 2014 that the DH rash really raised it’s ugly head. Dr’s thought that I had scabies and gave me poisoning cream for my skin. Went to a different doctor and she had enough insight to suggest the DH rash. Dapsone, steroids, and a gf diet were the start. The rash was the worst. I had tore my skin up so much on my forearms that the doctor said I was on a path for getting sepsis if I didn’t stop. Well I got some, grapefriut seed extract and diluted with warm water, stood in the shower and just soothed my skin, then put some fresh aloe on, it was a relief for a few hours. I relate to the hot running tap water, cause that’t what I also did. It hurt and felt good at the same time. I couuldn’t even wear a shirt with sleeves. Anyway, my family is plagued with chrons disease, and irritable bowel too. Maybe heridity? My mom said she has a cousin that lost all her hair, even her eyebrows and lashes, don’t know if it’s related? I won’t eat gluten anymore, I don’t EVER, EVER, NEVER want this rash back. I have suffered enough! I still get bumps around my hairline, and my skin itches , like a deep down burning itch, inside out, and it travels. If I scratch in my leg, it gets all fired up, red and itchy bumps, burnig, then I’ll touch my back and moments later it happening on my back. It’s awlful. I have learned to take a antihistamine every 3rd day so it won’t manisfest. hair, thyroid, joints all bad.
I want to thank you so so much my wife has alopecia and now we can fight it instead of just treating the symptoms with expensive BS the doctors gave her telling her there is no cure. People like you who are brave enough to share you personal experience will save so many lives more than doctors ever will. I have celiac disease and have suffered from migraines almost daily for my entire life so bad I have wanted to kill myself to stop the pain. I know now my mother also had this disease as she had every single symptom yet was told by doctors she was insane for 40 years until she was misdiagnosed with having fibromyalgia and given morphine patches that killed her. I have heard hundreds of people describe what we go through and yet doctors deny it because their flawed belief system says we don’t exist and we are crazy and only 1 % of the population has these diseases. You understand how alopecia can destroy a woman with stress and make her lose confidence and I want you to know you have helped someone and that until I saw your comment we had no idea gluten could cause hair loss as the alopecia web pages claim it is just some mystical immune disease that comes from nowhere and cannot be cured in any way or explained with an rationality, yet as soon as I saw your comment and typed in celiac and alopecia I got tons of information the doctors and alopecia web md sites do not even mention I’m guessing because their god’s at big pharma can’t make money off a gluten free diet and so all they can prescribe with their pharmaceutical bibles is drugs like steroid injections and crème which do nothing but mask symptoms and require a life long dependence. Thank you so much I can’t thank you enough and want you to know you have really helped someone and you have done so much just by sharing your personal experiences. Also you should thank and appreciate your doctor who at least was intelligent enough to test you because the many doctors my wife and mother saw did nothing.
I can relate to both of your comments. I have DH and have vitiligo. Both are auto-immune diseases. My daughter has Alopecia Areata and celiac disease. My son has T1Diabetes and Celiac. All auto-immune diseases. All the doctors have tried different things until we decided to take life into our own hands. We completely removed the gluten, malt, barley, etc from our diet. Our daughter was 90% bald on her head. After she and our son were diagnosed with celiac we removed gluten – 100%. That damn rash (DH) that I had for years that no one seemed to know what it was, began to disappear. When I get “glutened” some how it creeps back in. But here is the most amazing thing about our daughter. Her hair growth is now 95% full on her head. There is not one doctor we have seen (and we go to the best doctors in the Seattle area) will claim that the removal of gluten has caused the hair re-growth.
I hope this comment finds some of you that suffer from various auto-immune diseases. I know that the best doctor in the world is “you”.
Thank you for sharing your story. True True
D M Brewer….I can so relate to you and nightmare of this never ending rash…..my right arm and right leg can look like raw hamburger at times. Th itching is crazy making
I’m getting better at staying away from gluten and I do see an improvement in my skin. But I just some advice on what to buy to cleans and moisturizer my poor damaged skin!!!! Oh and my scalp too!!!
Hhheeeellllllppppp!!!!
cathyworthy1057@gmail.com My dad had celiac and nearly died in 1970 which was before diagnosis was common. I skated along and never knew I had symptoms until a few years ago. However this is not my whole story. My mother and father were both sugar addicts as well as their other problems and the sugar and starch addiction feeds bad microbes in the gut which is a set up for all these diseases. You asked it this might be a hereditary condition and there is a book that describes the connection between Chrones, IBS, thyroid, joint pain, and skin rash as well as gluten, casein/milk and other food allergies. The connection is the gut microbes you inherit from your mother and her mother before her. The book is Gut and Psychology Syndrome by Dr. Natasha Campbell-McBride. The book describes the various medical conditions that are linked to imbalances in the microbes in the human body and the damage which can happen to the lining of the intestines, allowing toxins from bad microbes, and undigested food particles to leak into the bloodstream. The book describes a whole protocol of healing which will reverse your skin condition and other issues you may not even know you have until they begin to disappear. I am on this site because I stopped following the GAPS protocol and began eating the gluten free food substitutes: white starches instead of wheat flour. I started allowing complex carbs back into my diet but stopped having broth and well cooked veggies. I stopped eating fermented foods and started eating sugary foods again. And now… I have a back rash, and have had a new episode of brain fog. Recently, a doctor suggested I take Nystatin thinking I was carrying around too much Candida yeast and the result was the development of GERD due to killing off something which was keeping my stomach health in balance. The GAPS Diet is far more gentle, and health giving. It will kill off bad microbes (starve those little buggers) while it feeds the good microbes and offers nutrients to heal and seal the gut lining, which are the cornerstones of the GAPS protocol. Take some probiotics as well to help get the good guys established in your gut. We have some excellent GAPS practitioners online who can offer counseling for your condition. Look for a certified practitioner by visiting http://www.GAPS.me which is Dr. Natasha Campbell-McBride’s site. The die- off reaction will probably cause the skin rash you have to recur, since this is a major symptom of your body being out of balance, so be sure to ask for help knowing how to deal with that when it occurs. When you heal the gut, the problems are repaired at a deeper level and they don’t recur unless you totally abandon eating healthy foods and taking your probiotics. It’s worth it!
All grains, not just gluten. 1 am 62. Macrobiotic eating in 1983 damn near killed me. Most doctors said it was topical. Liars and ignorant to boot. Potatoes and some beans can break me out. Avocado has as well. Processed foods, foodbars, treats, ready made herb mixes and my list goes on. Scumbag manufacturers do not have to disclose all the ingredients all in the name of secret proprietary blends. Screw them all. Stay whole. Be particular in your choices. Stay away from all sweeteners except pure greenleaf stevia. San Francisco Herbs is trustworthy. Honey can be dangerous as well. It is your body. Do not be a sheep stupid consumer like I used to be. I ruined my teeth too. The health movement is full of scammers and liars. I know. I have been with these guys and women.
Going gluten and dairy free cleared up all my DH as well as asthma and allergies. I would highly recommend to anyone.
Can you have lactose free milk?
Amen to that!!! I want to Thankyou guys for discussing dh on this sight!!!! I’ve been struggling with the same thing! It was diognosed as exima…. But it always have flared up and caused me the most torturous seasons of pain and apsolute discomfort…. Thankyou Lord For opening my eyes to this pool of study and the actual skin problem I suffer from!!!!
Power to the people with DH!
I was diagnosed with DH first. Actually, I was diagnosed by a top-notch dermatologist with a severe wheat allergy. He took one look at my inflamed elbows (seriously radiating heat), the rashes on my feet and the back of my head (hairline), etc. and it took him all of 30 seconds to tell me they were caused by wheat. That was over a decade ago. He never suggested medication (thank goodness). He just said, “stop eating wheat.” Long story short, one thing lead to another and I was eventually diagnosed with celiac disease via DH. It took a long time after being on a GF diet for it to completely go away. I do, however, have red elbows to this day. No itchy blisters, but they’re permanently red. If I get gluten cooties, it takes about 24 hours and my elbows start itching. I don’t get the horrible stomach aches, but the blisters, canker sores, and flu-ish feeling comes shortly after. It seriously took a long time (years) before all the rashes totally cleared up.
Great post. *Bats eyelashes* =)
Melissa
Hey Gluten Dude, great article, and thanks for highlighting this terrible condition, Monika! I’ve suffered on and off my whole life with DH. As a young girl in junior high school (about when it started) I’d tear at the skin on my elbows in any way possible just to try to make the itching and burning stop. I’d take anything to my skin: butter knives, hair brushes, school notebooks, etc… All in an effort to satiate a mad desire to stop the itching. My poor mom and our nurse practitioner didn’t know what to do with me. They tried steroid creams, oatmeal baths, different detergents, etc. They chalked it up to eczema and topical allergies. In college I had a flare up on my wrists and face and the doctor told me I had scabies. I was treated with a harsh insecticide that burned my skin. Another time, after walking into the emergency room with swollen lips and a rash all over my face making it almost impossible for me to eat, a doctor told me to just rest and “put Vaseline on it”. Finally, after dealing with flare ups for almost 20 years, two Januarys ago I was diagnosed with celiac disease via biopsy and found out what I had been suffering from for so long! I had one small flare-up immediately after discontinuing gluten and haven’t had a problem since. I still have discoloration on my scarred elbows, but I can certainly handle that! If I could go back in time, I’d slap all those “medical professionals” that dropped the ball with me. I can’t imagine going undiagnosed nowadays! Thank you for illustrating the maddening symptoms of this terrible disease!
You know what they give you for that rash??? OATMEAL BATHS!!! And then they wonder why it’s not getting any better!!!
I **suffered** from eczema/atopic dermatitis/contact dermatitis from infancy. I had periods of time in elementary school, middle school and high school when I would miss a week or two of school because of these horrible blistering burning rashes on my neck and face, and the school was scared I was contagious.
Of course, this was all on top of mysterious gut and neurological issues. Years. Years. Years.
It wasn’t until 5 years ago when a wonderful dermatology nurse practitioner took one look at my elbows and said “DH”.
I credit her for saving my life.
The Oatmeal Baths from hell!!!! I had a terrible, egotistical dermatologist from the Air Force that would not listen!!! Just regular eczema from him. Take an oatmeal bath and put Euclid on immediately after. Made it so much worse!! Thankful my allergist was in the same practice as his dermatologist wife who happened to walk by and noticed. So grateful for that 5 years ago.
Diane, is Euclid like Eucerin? That’s the other thing I kept getting prescribed (and cortisone). Never worked. Ugg.
The “brand” I would get from the military pharmacy. It is like Aquaphor.
Oh yeah. Had that, too. 🙂
Gahhhh, oatmeal baths?! I feel so bad for you. Why not use cracked wheat as an exfoliant while you’re at it. UGHHHHHHH.
p.s. It’s so sad to read about doctors who don’t listen to their patients. 🙁
I too have Dh. It reared it’s ugly head while still in hospital from cleiac but they never addressed this issue. The focus was on my blood labs anemia, renal failure etc. It first appeared on my left temple and few months after I survived and at home my eye lids got all red itchy and flaky. I had never heard of Dh (or celiac at that point) and was convinced from dermatoligst i developed allegic reaction to makeup. duh!!!! I had small bouts of rash on elbows, knees for many years but always thought it was from body lotion or bath soap etc. It never was very bad and never had it on my scalp or eyelids. So I accepted this as being from makeup. Then the 2nd attack hit my eyelids really bad even being gluten free for six months. It was to the point of my eyes being nearly swollen shut and was difficult to see. After waiting for weeks to see derm (only nurse not the doc again) was given rx for hydrocortisone cream and told once again it was dermatitis from something coming in contact with my eyes. frustrating is putting it mildly. but w ith the cream and going thru the night sweats, leg foot cramps, of the withdrawl from gluten and all the other wonderful things that this disease brings the rash got better and no longer have it. Only when I accidently (wait staff at restaurants i no longer eat at) I would get mild outbreaks , but now only on my elbows knees and back of my scalp. After being treated for ibs for so long until i ended up in the hospital I pray doctors would become more aware of this disease. Right now i don’t know if it is lazy or assembly line medicine to see how many patients they can get in and out in one day. After your brief visit they never give anythought to what really may be causing your symtoms and i am sad to see they don’t really care just get your insurance card and your co pay. I know that sounds harsh but i feel it is this way with a great many doctors.
Like that term celiac cooties lol.
So, what was the cause? I also had the experience like rash on my eyelid and almost could not open my eyes. Now the rash on my feet. I have Celiacs and have been avoiding gluten. I wonder did you every find out what triggered your outbreak?
Sweet and White Potatoes blew my eyes away! Such red disgusting pain. All grains cause other problems. Forget the vegan doctors that are lying to us. They are killing us one by one. All in the name of compassion. Get well and stay well. Do not play with fire. Study the diet of eagles, bear, fish, deer and other animals. Eyesight and strength says a lot to me. Avoid the alcohol and tobacco. It is in the same family of problems.
My son, Erin has both the ‘normal’ if Celiac can be considered normal type of Celia and DH–he never had DH before college and then, because they can’t seem to keep his food from getting cross contaminated, he came home, sick and covered in that horrid rash, which is a very accurate description of the disease. Thank you for again shedding light on this and Monkia, I sincerely hope you feel better soon!
Dear Gluten Dude,
I was diagnosed with Celiac almost 6 months ago and one of the first things I noticed after going gluten free was that this terrible rash that I had on the tops of my feet and covering my legs for three years was receding. Doctor’s had tried to treat it with steroids and creams to no avail. It has taken time to clear up completely and every time I get glutened it rears it’s ugly head again causing uncontrollable itching and misery but I’m so thankful that I have a name for it and know what causes it.
Hi Charity,
I’m just seeing your post now. I’ve been suffering wits a rash similar to one you described. I have it on the top of my feet, ankles, and legs. Sometimes on my stomach too. I’ve cut out gluten for about 6 weeks, but it seems the rash gets better for a few days thenow flares up. I’m being as careful as I can to avoid gluten. How long did it take you to heal? What happens now that you’ve been gluten free for over a year?
That happens to me too. I’ve been diagnosed celiac for over 5 years (unofficially had it for at least 7) but only recently figured out I suffer from DH after accidentally eating gluten. It takes me 4 to 6 months to heal and flare ups occur during the healing process. I literally just read about nightshade vegetables/fruits causing flares while healing as they leak from your gut…I can eat them just fine when I’m DH-free. Healing for me is really 2 steps forward, 1 step back during the healing cycle.
During my worst flare up two years ago, I went to at least a dozen different doctors and not a single one knew what to do or what it was.
That was a cute letter Monika! I’m sure it will help many people. Sometimes I wonder if DH isn’t more poorly diagnosed than even celiac? I am a dietitian and sometimes when I see a patient with horrible rashes I start asking them about all kinds of celiac symptoms.If I recommend that someone get tested for DH they look at me like I’m crazy…why is this dietitian talking about my skin? That’s not what I came here for! Well I know of one person who came back for GF diet ed because they tested positive. Thanks to him and your letter I will keep doing it. Thanks for your letter and to the Dude for posting it.
GD-
Great post. I haven’t heard about DH before, I hope this blog reaches the people that are suffering because of this awful condition.
xo-
Jersey Girl
________________________________________________
“Cash: I went into a coma and I was there for 12 days. They all thought I was dying and they couldn’t diagnose what was wrong with me. They finally came up with a diagnosis of Shy-Drager syndrome. It was few months later they realized I didn’t have that so it was Parkinson’s. And then it was not that. Then finally it was autonomic neuropathy. … And I’m pretty well resolved to the fact that that’s what it is. And it’s a slow process of the nerve endings.
King: No cure?
Cash: No, I don’t think so. But that’s all right. There’s no cure for life either.”
Interview with Johnny Cash and Larry King
The “rash” is one of the symptoms that actually convinced me to eat gluten free (in combination of others). I had been to many doctors for other symptoms but did not associate the rash with any of them and didn’t bring it up (wish I had of now). I have always been super sensitive to new laundry detergents and poison ivy and such, so when the rash appeared on my right forearm I thought I had poison ivy. It was SO itchy and yes, it burned too. I would take hot, HOT showers for relief every night (only temporary). I also itched on my lower back, but did not have a visible rash. Over the course of about 6 months and changing every know laundry product/soap/lotion I had to hypoallergenic, I saw NO relief. In fact, it was slowly spreading towards my wrist. I felt like a leper at work ( I’m a teacher) and my 3/4 sleeves were no longer covering the rash. Finally, while doing some internet searches and reading Wheat Belly many of my symptoms just added up (anxiety/panic attacks, heart palpitations, itchy RASH, bloating, extreme fatigue, emergency bathroom trips….too many to list here). I went completely gluten free and felt relief from the intense itch within a week and it was disappearing within two weeks. I have been rash-free for about 1 1/2 years now. I only had one reoccurrence after eating Chinese food (which I never eat out anymore). In my early gluten free days I thought I was being safe eating a Chinese dish made with rice noodles and “soy” sauce. I had a rash on the same spot on my arm by the next day. Yikes! That’s when I found out that “soy” sauce is not always made with just soy. Lesson learned! The only time we eat Chinese now is if we make it. The benefit…no wheat. The bonus….no MSG!
P.S. Now when I see people with chronic skin problems, I always mention that they should talk to their doctors about possible gluten issues.
Thanks for your story and timeline. It has been 3 days without gluten and I’m still itchy. I have struggled with this for 3 years and just now found what I think may be what could help me. THANK YOU!
After 8 years being clear of DH I was rudely reminded of the intense itching and burning that comes with this horrible rash. It has been almost three months since I discovered the issue (coffee has a very similar protein to gluten (termed cross reactive) that some with DH/Celiac/GS cannot tolerate it) and still my rash is raging. It took me about 5 months previously being completely gluten, dairy and coffee free before it totally cleared. I think it varies from person to person. I would gladly eat dirt if I could insure this insidious rash would never return. I hope your rash clears very soon!!!
Thanks for this topic! I get DH and it is terrible. I thought it was eczema or contact dermatitis. I bought creams and lotions. But it seemed like nothing worked. When a doctor suggested that I go GF, it cleared up quickly. It was a very happy time in my life. Now it is one of the symptoms that lingers longest if I get gluten exposure. I can’t shave my legs and definitely can’t use Nair or wax when it happens. Then again the rash is so ugly on my legs that I don’t want to wear dresses or shorts.
Another grateful follower of your blog responding to your question as to “who out there has DH?”.
I got my DH diagnosis exactly a year ago tomorrow after struggling for over 4 decades looking for answers.
What a difference a year makes! I’ve learned so much from you GD and from other elders like Irish Heart and The Patient Celiac.
Love your description:
“rolling in stinging nettles naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas…”
Yes, that sums it up nicely. Small wonder it’s called the suicide rash.
Most grateful to you for all that you share. It made my journey towards healing a whole lot easier.
I have always struggled with stomach issues and was mis-diagnosed for years. About 9 years ago I broke out in a terrible itchy, blistery rash and they sent me to a dermatologist that recognized it right away. I was floored when he started asking me if I had any stomach issues. I told him that I was “lactose intolerant” because I was told that for years. He then asked me if lactaid worked…….it was the first time I realised NO it didn’t, I was still always sick! He took a skin biopsy right there, followed by blood work and a referral to a specialist to do a intestinal biopsy. DH and classic celiac.
My 3rd child began to suffer from skin issues as a baby. She did not have the typical blistery rash but she was always itching, often until it would bleed. She was always so uncomfortable. Her first summer was awful! At 8 months the heat triggered it so much more. In the meantime she also began to have diarrhea on a regular basis. After many trips to many doctors she was finally diagnosed at 2 1/2 years old. She has been on a gf diet for about 8 months now and her skin has gotten much better but she is still struggling with it a bit.
Upon the diagnoses of my youngest child, we tested the other 2 kids. My other daughter, who was 4 and never showed any symptoms was positive! 3 out of 5 are celiac! We are now a 100% gluten free home and I have become an expert at making everything gluten free so that we can enjoy wonderful bread and baked goods just like everyone else. Thankfully we have very supportive friends and family and now most events that are not in our home are celiac friendly 🙂
Miserable painful condition! I actually self diagnosed myself and went into the dermatologist during a break out for a biopsy. I was told it was not herpetiformis but they would biopsy it anyways. The results came back positive and they handed me a paper with a web site for gluten allergies. Really! Finally got more tests done for confirmation and steering clear of gluten has changed my life. I haven’t broken out in over a year, all it takes is one glut toning aka poise ing to break me out. Yes, scratching your skin off is quite accurate..
i have been diagnosed with celiac for a year and a half and dh just popped up a few months ago. it is so not fun. i realized it when i tossed something out in my fiances trash barrel and my hand hit a subway wrapper. 5 mins later burning, itchy red rash all over my hand
Jen
It’s probably not DH.
You can have an allergic reaction to contact with wheat, yes, but true DH results from raised antibodies in the blood stream and that means eating gluten, not just touching it.
“When a person with celiac disease consumes gluten, the mucosal immune system in the intestine responds by producing a type of antibody called immunoglobulin A (IgA)”, explains John Zone, M.D., CDF Medical Advisory Board Member and Chairman of the Department of Dermatology at the University of Utah School of Medicine. As IgA enters the bloodstream, it can collect in small blood vessels under the skin, triggering further immune reactions that result in the blistering rash of DH.”
Hope this helps!
I have what I’ve been told is keratosis pilaris. I only have Google Images to go on, but it looks sort of similar to DH. DH sounds much itchier and painful, though. I still hate showing my arms in public because inevitably someone will comment on my “rash”.
Me! (raising hand…) Long story short, it was 1.5 years after a nurse practitioner dx me with DH in my ears that I discovered DH is associated with Celiac. Prior to that I’d mostly avoided wheat for a few years, since I knew it caused me problems (including what I know now was DH on my face). But that was when I went totally gluten free. That was 2.5 years ago.
For the sake of posterity, and for others who may read the comments and be searching for more answers, going GF alone didn’t quite do it for me. I subsequently found I also have to avoid things with MSG and other free glutamates, as well as sulfites, and most recently high oxalates. While quitting the gluten and other stuff helped a LOT with the itchy part, I had started eating some stuff high in oxalates; such as almond flour, chocolate, spinach and macadamia nuts, and my ears and behind my knees were irritated again. I just spent over a month barely being able to hear out of my left ear, until it finally unblocked about 2-3 weeks after cutting way down on the high ox foods. No more almond flour for me!
I’ve had oxalate excess and probs with salicylates, histamines & other stuff too. For me yeast (any kind) seems to be almost as much of a trigger as gluten. Sugar aggravates it also, maybe because it feeds the yeast. Is yeast a problem for you too cia_marie?
Yeast doesn’t seem to be much of a problem for me, I don’t think … but I also very rarely eat anything yeast-y. I have recently cut way back on the carbs (sugar / fructose) and that has been helpful. And supplementing vitamin C (sodium ascorbate) has really helped my skin as well.
Thanks for replying cia_marie 🙂 This is an informative blog on the subject: http://www.glutenfreegigi.com/the-connection-between-celiac-disease-and-yeast-allergy/ I didn’t think I was eating yeasty food either but noticed flare-ups after I tried some raw food with nutritional yeast (kale chips, cashew cheese, etc), and realised previous unsourced flares could be linked to consumption of naturally occurring yeasts like saccharomyces sp. in kombucha and many other fermented foods and in some probiotic blends, etc. I might try vit C after I’ve been low-ox for a while and cleared my ox stores, as excess amounts are apparently converted by the body to oxalates. PS Like you I also have probs with glutamates and sulfites.
I also diagnosed my DH with the help of the internet. After having an itchy, blistery rash for over 30 years, I began to worry that my skin was breaking down. The itching is so intense that the heavy scratching, which causes the blisters to break and scab, is an immense relief. So, you scratch and scratch and with age, the skin doesn’t heal as fast as it once did.
A quick search of symptoms on the internet came up with “dermatitis herpetaformis”. The pictures looked exactly like my rash. I wrote it down and showed it to my doctor, who was familiar with celiac. She ordered blood tests, which came back positive and I quit eating gluten. What a difference after 4 years! I’ve had a chance to live with skin that feels normal and it’s great.
Very dry skin and icthyosis have been a problem all my life and I’ve seen dermatologists over the years. None of them figured out what the itching, blistery rash was, except that catchall diagnosis, atopic dermatitis, which means “haven’t got a clue.” I’m very grateful I never suffered intestinal problems or some of the other severe problems other celiacs have. Until I began reading about celiac, I had no idea the damage it can do. On the other hand, if one of those doctors had been aware of what dermatitis herpetaformis looked like, I might have been spared having hypothyroid, early menapause and maybe the painful periods I had for years.
A shame that, as this is Celiac awareness month, you couldn’t use a definition of DH that mentions Celiac. Or doesn’t use the made up term ” gluten allergy”.
http://www.cureceliacdisease.org/archives/faq/what-is-dermatitis-herpetiformis-dh
http://www.cureceliacdisease.org/archives/faq/how-is-dermatitis-herpetiformis-dh-diagnosed
You’re right. I rushed it a bit this morning. I should have done a better job. A crazy life leads to poor decisions.
Lima Bean
With all due respect, I am not picking on you but only wish to encourage you and GDude.
I would not have used a critical sounding “A shame that” and instead simply offered your definitions of DH, which were very good.
GDude used “celiac” in the “headline” and 2 more times before Monika’s email. GDude also prefaced his comments with his caveat “Kinda one of those things that since I don’t have it, I wouldn’t know what to say about it” when he asked for our comments.
After reading Jennifer Esposito’s blog post today and trying to comprehend all of the UNPAID advocacy work for us and for people who need to be informed about us that is performed by GDude, IH, Jen E and so many others in our Celiac/NCGI community, I just don’t believe any criticism of them can be justified.
GDude (IH and Jen E and others) should seldom feel compelled to apologize for any commission or omission of theirs and we should each be more than willing to step in and volunteer our time, knowledge and encouragement to help them along.
Again, this is not a criticism of anyone but offered only for encouragement for each of us to assist when we can and not sound negative toward each other. Seeing that GDude will post his 10,000th tweet tomorrow, I really have a very hard time comprehending all GDude has accomplished in regard to celiac advocacy in a few short years, while creating a successful business and a beautiful family all while suffering from the ravages of CD like the rest of us.
GDude, you should never feel like you “should have done a better job” after all that you have done and are doing every day. I would much rather each of us keep supporting and encouraging GDude, Irish, Jen E and all of our other dedicated UNPAID advocates than ever make their “jobs” more difficult or make them ever feel like they want to “close up shop.” They are saving and improving lives with their efforts and we need to encourage them to continue for as long as they are physically and mentally able.
Respectfully
Hap
Hap – you have no idea…… Lol
I think GD understands, per our past history, that I would like to see him use more ” reliable” sources for his educating of the masses. It took me less than a minute to go to the U of C site and get an accurate definition of DH. However, I understand that The Dude and I have different reasons for what we do. The U of C site & actual scientific data are not always what makes for good Internet/ tweets/ successful blogs. Is that GD’s fault? Not really. That is just what his readers/the public seem to want. I think people will learn a little while they are entertained, so it’s all good.
For some reason, my spell check wanted to change my mis- spelling of entertained into ” intertwined”. Now that would make for some REAL entertainment! Lol
Lima Bean
Thanks for letting me know The Dude understands and everything is good between you two from past history. Whatever “intertwining as a form of entertainment” The Dude and anybody else in the community engage in is really none of my business as long as Mrs Dude doesn’t mind since she seems like such a nice lady. I would add a yelllow smiley face here like everybody else but I’m not allowed for some unknown reason.
I’ll close my eye and go back to sleep now since all is peaceful within our community. I was worried The Dude and Jen E might both simultaneously quit after all of the hot steaming bovine piles they’ve waded through the past few days.
I will vouch for Lima Bean’s integrity and character.
You have no idea how much work she does, quietly and without fanfare for celiac awareness. She chooses to keep her anonymity, but I know her well. She has a different delivery, for sure–she shoots from the hip. lol but her heart is huge.
I try to keep my anonymity too, but sometimes that’s not possible.
And honestly, I also felt the use of “gluten allergy” is seriously misleading and I never use the term to describe celiac.
I mentioned this to GD last night and was thinking about saying something this morning on here. I was surprised to see she beat me to it.
And if Lima and I had been paid all along for our advocacy, we would own yachts and be in Tahiti by now. 🙂 We’re just not
as public about what we do. We leave that to the bloggers.
But we are watchdogs, if you will.
GD likes Lima and vice versa. I like both of them.
It’s all good. 🙂
Well Lima
If The Princess Warrior vouches for you then that’s good enough for me.
Since I shelled many a Lima Bean for my Grandmothers and still like eating them after all that work, I’m glad to see your impeccable reputation has not sullied the integrity of Lima Beans everywhere. I sure am happy I bought some GF cornmeal yesterday – y’all are making me hungry now!
It’s all good folks. It was lazy writing on my part and I should have done a better job. I put a new description of DH in the post, taking out the old one.
Dude,
sorry if I seemed a bit harsh.
It’s all good.
Wow! Not only do you all do a fantastic job of celiac advocacy, what I just read is a shining example of discussing differences of opinion and getting along with others. Well done everyone!
Heading over to Jen’s blog to see if I can leave her an encouraging comment too,
Thankful
Well, that’s because if you don’t have gluten head, you are a happier, more cooperative and intelligent person. 😉 and play well with others!
LOL! Love the “rolling in stinging nettles…” description! I had a serious case of DH! It covered my arms, legs, back, butt, my hairline… everywhere! And it wasn’t just a “flare up”, for me it was constant. It never went away. It would itch so badly that I couldn’t wait to get home and grab a comb or knife, or anything sharp and just go to town for a good 30 minutes just scratching everywhere! I would also apparently scratch in my sleep or subconsciously b/c all over our house were blood spots… on my sheets, my couch, my clothes… disgusting. Not only that, but they looked like chicken pox, and everyone (even strangers!) would come up and ask me what was wrong and if it hurt. Really? Who does that?
Because I also had kidney failure at the time, my docs all thought it was due to the toxins in my blood, or that I had what was called “Kyrle’s Disease” (which apparently no one knows anything about…doctors, nor internet.) Ugh. I tried the horrid oatmeal baths, lotions, and even special medication from my dermatologist, but nothing helped. I held back from going out too often b/c I couldn’t hide it very well unless I wore a floor length bodysuit and gloves! It was very embarrassing! It wasn’t until I went to my GI doctor that I finally had an answer. My GI…not my dermatologist!?! When he pointed out the rash on my chest/neck area and asked what it was from, I told him I had no idea, and he suggested it could be due to my celiac, and that not a lot of people get both the GI issues AND the DH. Lucky me! Sure enough, after going GF, it started disappearing! It took a full year to go away completely, but I still have spots that have weird pigmentation from it. I’m just glad I’m not ripping my skin apart anymore!
Thank you for covering this issue! You’re right, too many people refer to it as “just a rash” when it’s SOOOO much more! And, it’s yet another piece of the puzzle to this ever enigmatic Celiac Disease!
It’s terrific that Monika wrote in and wonderful that you’ve highlighted DH here, GD. I’d like to add a couple of things. First, and the most important, when biopsies are done for DH, they are often done incorrectly. I know because my son has DH although he has no official diagnosis. The Physician’s Assistant (PA) for his dermatologist did his biopsy incorrectly. The biopsy has to be done a short distance away from the lesion, not on the lesion itself. Inflammation in the lesions can destroy the IgA deposits and, therefore, give false negatives. A biopsy on the lesion itself, a very painful lesion as Monika describes, is what was done in my son’s case, without warning, without anesthetic, etc. (The correct procedure is discussed here: http://celiac.org/celiac-disease/dermatitis-herpetiformis/) It was such a painful and humiliating experience for him being a teenager and a boy. Boys don’t cry, right? He held it in while in the office, but literally sobbed in the car afterwards. Honestly, it still hurts me to think about it. I felt like I’d betrayed him somehow.
After that experience, I did research and learned that the PA had done the biopsy incorrectly, but my son refused to go to another dermatologist for further testing. In addition, many who have DH will not test positive for celiac although DH equates to celiac. (My son also tested negative for celiac through blood testing. Genetic testing wasn’t done at all and not even the full celiac blood panel was done initially. I had to point out the right tests to the doctor, a GI who diagnoses celiac.) A proper diagnosis of DH means you have celiac. Generally, a celiac blood panel is done and if it’s positive, there’s no need for a biopsy as many with DH will not test positive via biopsy. This info is discussed in the article I linked to above and in many other expert publications.
So much in our whole celiac/non-celiac gluten sensitivity arena is “gray” vs black and white. It can be hard to get on the right path and go forward for many. Fortunately, my son has been gluten free for 7 years after he decided he knew that gluten caused all his issues even without any positive test results. His DH will sometimes return if he gets accidentally glutened, but not always. It seems it takes a hefty dose for his DH to return, but he has other GI and neurological symptoms from ingesting any gluten.
Thanks again,
Shirley
My dermatologist did not even know what Dermatitis Herpetiformis was! She had to call several of her colleagues and they were not much help. I didn’t know this until after the biopsy. My primary care doctor and I both were pretty sure that it was DH but needed a biopsy to confirm. I had been gluten free for almost 3 years at this point. The DH mirrors itself, right knee, left knee, right shoulder, left shoulder, right butt cheek, left butt cheek etc. Mine was right at the panty line in the crease of my rear end and leg. When I went for the biopsy I wasn’t feeling well, my Primary Care Dr. had put me on a cholesterol drug forgetting that I had gallstones and problems with my gallbladder and this drug actually gave you gallbladder attacks. So I was having one when I went for my biopsy. I was pale, sweaty, sick to my stomach and couldn’t concentrate, so when she started to core out a 4mm hole from the crack of my butt I was so confused and I was trying to ask her what she was doing because she was nowhere near the DH!! Two holes she made it was extremely painful and uncomfortable and of course the test came back negative. When I went back she admitted to me she had no idea what she was really doing because she didn’t know about the disease and admitted her mistake, even her nurse told me she knew she was wrong. A couple of weeks later I found out she had passed away from a brain tumor that she knew she had and was still working with. Did this cloud her decisions? I’ll never know. And the DH is still active no matter what I do.
Dana
I am full blown celiac and DH and my symptoms were symmetrical & identical to your DH locations (except no “panty line” for me) ALL OVER. As I said above, I looked like a Christmas tree when my dermatologist cut my second 3 inch circular plug out of my back to get wide enough margin to remove the cancer. I asked her what we could do if all of my other 150 lesions turned cancerous & she said only remedy was surgical excision. Not really an option because wouldn’t have had much skin left. Thankfully I discovered the gluten connection the following year and no more cancer surgery needed. Now my skin is almost back to predisease days with exception of the 4 inch and 3 inch scars in my back. I plan to tell my grandkids, if so lucky, about the hatchet fights I got into.
I commented to you since you said your DH is still active. After a year of GF, I only thought I was gluten free when GDude helped me realize that I can’t eat anything that even comes near a wheat facility. This preciseness regarding what goes in my mouth has resulted in a noticeable improvement of my skin almost clearing up completely.
Must be very diligent about everything because it takes very very little to cause a flare up and it takes so long for flare up to heal for me but well worth it!
Hope you can reach complete remission with your DH!
I am newly diagnosed as of late 2013, when I found your blog I was like “this is great”. I read tons of your previous entries, and just absorbed all the info I could. When I read this the other day I went “holy shit”. Now mind you I have not been diagnosed with DH-nor did I even know it existed until right now, but for the past couple of years I would get this HORRID rash on my toes, both feet, and it itched to the point I wanted to cut my toes off. It burned, it was maddening. There was one winter night I literally went out and stuck both my feet in the snow. No one could explain this, I went to the dr who just gave me an allergy pill and told me to take a baby aspirin. (she thought is was raynaids disease). Now maybe she was right, but since going GF I have not had the issues with my feet/toes at all. I just want to say thank you for this site, it is great.
I have been gluten free about a year and DH reared its ugly head about 6 weeks ago! It is aweful! The nettles description is pretty darn acurate. It is the itchiest darn thing I have ever encountered. More than chicken pox, poison oak and mosquito bites combined. Since I am already gluten free this flare up tells me that I must have some gluten hidden some where in my diet. 🙁 I have no idea where. Grrrrrrr!
Shannon – I found out that the jar of hand cream I keep in my kitchen has gluten in it (has vitamin E added, which comes from wheat). So I was fixing my food, washing my hands, putting on hand cream and then sitting down to eat… since I got rid of that my DH is so much better.
It took me 40 years to diagnose my self with DH. I’ve been to over 10 dermatologists and apparently they don’t know about DH. I’ve been diagnosed with dermatitis, eczema, psoriasis, staff infection, possible scabies, possible ring worm, ect. All I ever received was various steroid creams.
The point is that if you have DH, you will probably need to diagnose yourself. Thank god for the internet. My DH has moved to different locations over the years but, I never experienced a remission. Stopping gluten 4 months ago has made it 80% better. I just had a bloody scratch session though. I’m not sure if I am getting trace gluten in my diet or what? I know that I did have 2 accidental exposures these past 4 months.
What made me figure this out is my 4 year old daughter started having the same problem. I thought she had chicken pox. By the time she went to the pediatrician, she had tiny water blisters. The dr said they were warts and they would go away in a year. After much scratching they popped and scabbed. I took her back and got the standard eczema diagnosis.
After much research, I found images of DH and knew it was what we have! I told the Dr to do a celiac panel on her and it was positive. My non DH son also tested positive! His panel was only slightly elevated and Dr said his could be a false positive.
Her skin is not completely healed and I’m wondering how long it will take for my skin too. I read somewhere up to 10 years!! Yikes!! I also read that people with DH are very sensitive to even the smallest trace of gluten. I’m trying to be careful on our diet as I want to be in remission and hopefully reverse my neuropathy and other problems too.
Jennifer
Hi Jennifer. After almost 2 years gf I was about 90 percent better. Frustrated after being so diligent I went to the internet for more answers. Found out that the protein in milk mimics the gluten protein in some Celiacs. Went off milk and yogurt and my rash is 100 percent better. Skin is still different but not itchy. Hope this helps!
Hi Jackie
Thank-you for telling me this because I have been slowly coming to the conclusion that I need to back away from dairy which will be so hard for me. I love cheese, ice-cream. It might be worse than giving up gluten. I think I’ve been in denial about the need for it. I also suspect I may have a problem with corn. Even non GMO corn! I think sun flower seeds too. Basically all my favorite foods. I am determined to be itch free. I keep putting it off but I will start a diet of rice, beans, almonds, fruit, vegetables, meat and potatoes. I’m switchedtrying to cut sugar too but not because of the itching!
Try milk from grass-fed cows. I had the same problem with DH and could not tolerate dairy on many levels. I was researching online and came across some interesting info about how much grain cows eat, and why milk from grass fed cows was better. Sure enough, I can now have dairy in my diet. My kids, who have all tested positive for lactose intolerance, can also have the milk from grass fed cows with no problems whatsoever. It is nice to have some dairy in our lives again!
great information thank you so much I want to continue eating cheese I can not drink milk at all don’t really care to but I love cheese and like supporting grass fed anyway as cows are not supposed to eat grains.
I didn’t have the gastro-intestinal symptoms of celiac, but DH and (I know now) lots of brain fog and fatigue. Developed the rash on my hands – palms and between my fingers – which got worse and worse over three years. Saw several dermatologists, general practitioners, and allergists, everyone just said it was eczema. Finally I went to a naturopath and she knew what it was.
Even though I’ve been gluten free (with a few slip-ups), for over a year I still have frequent outbreaks. I hate having it on my hands! I’ve given up things I love like gardening and drawing with charcoal because it’s just too painful. I wonder if my hands will ever heal.
Please persevere, and be obsessive about avoiding gluten. I’ve cheated with gluten a few times, but can always recover by being obsessively gluten-free. It can take a year for me. I have healed within a month when strictly following the GAPS diet. It is so very worth persevering! You might feel better in other ways as well.
I never knew the hands were involved. I’m having a skin biopsy done next Sunday. I have what they call a typical celiac rash. Symmetrical on my stomach, back, buttocks, upper legs and was on my neck (under my hairline at the nape), elbows and knees. Kind of a burning, very very itchy rash that someone described as rolling in nettles…and I agree. I’ve had diahrrea for a year, been lactose intolerant for over 15 yrs. My hands were one of the first symtoms with diahrrea. They have been diagnosed as exzema but nothing soothes them. They break out in tiny itchy watery pimples then disappear but are so dry they are cracking an bleeding. Can anyone suggest products to help?
Mary, for me, keeping the hands moisturized but not wet helps. I also quit wearing gloves for gardening, because the friction of gloves against the rash made it worse. I just cover my hands in Vaseline or olive oil and go out and get dirty. Make sure your hand cream is gluten free – I had some gluten hand cream in the kitchen, was using it and then touching my food, getting glutened from that. When I have a breakout, getting my hands wet definitely brings on the worst itching. Use gloves for washing dishes, keep the showers short.
Also – this is not scientific, but anecdotal: I’ve started taking a curcumin (turmeric) supplement every day. It has anti-inflammatory properties and if I get accidently glutened it seems to cut the response time down by several days.
Finally, like many others here I now only eat food from wheat-free facilities, where the manufacturing process does not allow any cross-contamination. That has helped.
Dapsone! Although a gf diet is a must! The dasone works wonders! The blisters are gone within 2 days!
I was misdiagnosed with Herpes Simplex 2 for 5 years. At first, none of the doctors knew what the hell this rash with blisters was that occurred in my genital area, orally, on my knees, elbows, hands, and feet. So they put me on super high doses of antivirals and told me I must be HIV positive to have Herpes that bad bc they had never seen anything like it before! That’s what you want to hear from a doctor: “Hmmmmm, I’ve never seen this before.” Needless to say, I am not HIV positive. After dealing with these flare-ups for 5 years, at least one every 4-6 weeks, I demanded they do extensive testing to verify my condition. Guess what? Multiple tests were negative for Herpes. My dad found DH on a website and then it all made sense! I stopped eating gluten and symptoms went away almost immediately. But living a gluten free lifestyle is frustrating, unrewarding, and can drive you downright mad! Luckily, my partner is very understanding and is even willing to give up gluten himself. Gluten is in just about everything, so let us work to demand more gluten free items and not just the pretend gluten free ones that claim less than 20ppm won’t hurt us!!
Lauren, I have a very similar story. Originally diagnosed with HSV2. Only when I had blisters pop up on around my hairline did my Dermatologist refer me to the Chief of Dermatology at a well known hospital did I finally get help. I had blistered fingers, elbows, knees(classic symptoms) and genital area. He did biopsy and confirmed DH. I had a weak positive Celiac test in 2010. I originally took 100mg daily of Dapsone for 5 years and recently cut to 50mg per day. As long as I take it no breakouts. I sometimes are doing so wel lI forget to take it and still okay.
Most recent I am having the digestive symptoms and my celiac blood test was negative. I do have an appt with GI. My dermatologist said if you have DH you have Celiac
and no need for a biopsy….so confused on why the test would now be negative…Waiting for the second test results!
I’m so glad I saw this. I have just returned from my doctors in tears. I have had very itchy, painful blisters on my face since Feb this year. They look very much like little clusters of herpes. I have had 5 courses of antibiotics and 4 courses of antivirals, with nothing making any difference. I saw a doctor last week who brought up coeliacs and since then did a bit of researching and discovered DH. It just explains my symptoms perfectly, the timing of it all coincides with me increasing my carb intake (and thus my gluten) and also explains my life long history of GI problems.
But I went back to my doctors surgery today and saw a different doctor who told me it wasn’t coeliac- he said that only affect the skin on the face if you have an iron deficiency and it would be sores at the corners of my mouth. He also said coeliac doesn’t affect your immune system (I’ve been feeling really unwell the past week or so) and wouldn’t explain why I’m feeling so run down. He suggested further blood tests and casually suggested HIV like it was a common cold. It took all I had to not burst out crying there and then. He then said I didn’t quite fit the ‘HIV profile’ so he’d hang off testing for that for now. I left there feeling so hopeless. I’ve spent the last while googling HIV to figure out if it’s possible I could have it (I’ve been with my partner 13 years and other than herpes like blisters, there’s nothing else to suggest HIV). Thankfully I somehow found this article and comment about HIV which has brought my head back round again. I’m so sure I have DH and coeliacs. I’m just beginning to wonder if I should just forget trying to get tested and just quit the gluten.
Hi LYDIA
“He also said coeliac doesn’t affect your immune system (I’ve been feeling really unwell the past week or so) and wouldn’t explain why I’m feeling so run down.”
This is an astonishingly stupid thing for a doctor to say.(and I;’ve heard a lot of stupid stuff from doctors) This doctor has absolutely no idea what he is talking about, period.
OF COURSE CELIAC AFFECTS THE IMMUNE SYSTEM!…IT’S AN AUTOIMMUNE DISEASE !! AND IT AFFECTS EVERY ORGAN AND BODY SYSTEM. (not yelling, honest, just emphasizing!) 🙂
Find the other doctor who made more sense and have a biopsy taken from the area adjacent to the blisters. If you have DH, you have celiac.
Make sure you find someone who knows what she’s doing. Here, maybe this will help?
http://celiac.org/celiac-disease/dermatitis-herpetiformis/
Good luck, hon!
Irish heart
You are just one amazing woman!!!!
Good luck Lydia! Irish knows what she is talking about.
Camille.
You took the words right out of my mouth…
Thank you for the straight talking encouragement!! 🙂
It’s all over my face so I’m a bit worried about a biopsy due to scaring. I know it’s a bit vain and I’m a bit of a mess at the moment anyway but if I could resolve it through diet and not be left with a scar, then the diagnosis doesn’t seem that important.
Oh and I think I’ll be using “rolling in stinging nettles naked with a severe sunburn, then wrapping yourself in a wool blanket filled with ants and fleas…” as my description from now on!! It hits the nail on the head!
(1) A biopsy scraping will give you a definitive diagnosis.
(2) If it is not DH and you go on a GF diet to “self treat”, this diet will do nothing to help those blisters which will leave you scars as long at you continue to flare and itch.
(3) Anyone can ‘self-diagnose” but the truth is, if it is not DH and you try to treat this rash with a GF diet and nothing changes, then
you still don’t know what’s going on.
I am saying all this to ask: wouldn’t you like to know what is causing the rash?
I know I would.
In any case, it’s your call. Best wishes.
Irishheart,
I think it’s great that you are replying on this thread, but not sure your info is accurate. First of all, skin biopsies can be expensive (especially for the many of us who don’t have insurance) and yes, they will give you a diagnosis that is certain, but why not try to go gluten free first and save some $$? Also, if you decide to go gluten free and the rash doesn’t clear, that is because it takes TIME. Everything I have read (hours and hours of research) says that it can take up to 2 years EVEN with a gluten free diet. I “self diagnosed” because I had the terrible rash, but could only afford a blood test, well the blood test showed VERY high antibodies for gluten. That was enough for me, I have been gluten free since May. I refuse to have a skin biopsy because in order to have the test be accurate, you have to consume gluten again, and I REFUSE to do that. Anyway, I guess if you have the $$, and have not gone gluten free yet, a skin biopsy is a good idea, but the person should be aware that even with a gluten free diet, it can take up to 2 years for the “rash from hell” to go away.
Thanks Jana for your reply.
Yes, I am well aware that it may take up to 2 years for DH to clear.
My point to Lydia was…she could go on a GF diet without benefit of DX and then what…wait for 2 years to find out?
Lydia may not even have celiac. Lesions and blisters and
rashes of all kinds occur for a variety of reasons, not just celiac..
In fact, DH usually appears symmetrically on the elbows, knees, buttocks and scalp. It is not often found solely on the face.
That seems like a long time to see if she’s right, don’t you think?
She could opt for the celiac panel, of course, but it can be negative in some people with DH (and in those with active celiac with villous atrophy too).
6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy.
Ludvigsson J, Bai J, Biagi F, Card TR, Ciacci C, Ciclitira PJ, Green P, Hadjivassiliou M, Holdoway A, van Heel DA, Kaukinen K, Leffler DA, Leonard JN, Lundin KE, McGough N, Davidson M, Murray JA, Swift GL, Walker MM, Zingone F, Sanders DS; Authors of the BSG Coeliac Disease Guidelines Development Group. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014 Jun 10.
I was just giving her the facts. It’s up to her to decide what to do.
Wow Irishheart, you are very knowledgeable! And yes, DH is usually not just on the face. I had it on my face, but not before it was on my body. It actually spread to my face before I figured out that gluten was the culprit. I did not not have a “celiac blood test” done, just a blood test to see what I was allergic to. Do you think high “allergy” antibodies in the blood for gluten also means celiac? I am pretty sure what I have is DH, but since you are so knowledgeable, I thought I would ask…….thanks for all your replies.
I have a horribly itchy rash that started around a year ago on my stomach then went to my arms and thighs. Went to a dermotologist and they took a biopsy and skin scrapings. Results came back “inconclusive.” So doc gave me cream for scabies even though he knew that’s not what I had. Life became complicated, so never got around to doing that treatment. Rash became worse and spread more on my thighs, arms, calves, and neck. Went back to the dermatologist office and saw another doc there. Since the first doc did a biopsy, 2nd doc said I couldn’t have DH. Said I just had eczema and gave me a steroid cream. I put it only on my calf to see if it would help. The itching did subside, but then I started getting new rashes in other places! He said that was fine, just use the cream on any new rashes and it should go away this summer. Well, now it is the worst yet! I’m losing sleep over this. Cant sleep cause it’s so itchy! Scratching myself til I bleed. Not sure what to do. Return to the same office and demand a new DH test? I really think they did it wrong the first time. (It was a dr.’s assistant) Go to another doc and get a celiac blood test? Yes, I could just go gluten free, however, I’m a baker, so I want to be positive that this really is what’s going on. Because in addition to giving up gluten, I would also have to give up baking cakes, right? :'( Any advice??? TIA
Rachel, my advice to you would be to go gluten free and see if anything changes. If you haven’t tried it, how can you rule out the fact that it could be DH? You would not have to stop baking cakes, you just have to stop eating them. The alternative is having the rash. I myself was never tested for DH, or celiac, but I KNOW I have it. I have had the same rash everyone describes for almost a year now, and went gluten free in May when a blood test came back positive for very high gluten antibodies in my blood. I still have the rash, but it is better, and under control. I REFUSE to start eating gluten again just to be tested. I have also given up sugar, alcohol, and dairy as well, and the rash still comes, but goes away quickly. Don’t wait and rely on stupid Dr. tests, take charge of your life and do what YOU can to take care of yourself. NO ONE will take care (or know you) better than YOU.
Thanks for the reply Jana. Since this post I have gone back to the doc. They did 2 biopsies. It came back positive for “arthropod attack.” And he did other tests that were negative for DH. So judging by the look of my rash, the doc said he’s going with scabies. Odd thing though, I have had this rash for over a year and no one else near me has it, not my husband who shares the bed with me or my 3 small children who are constantly all over me. I did do the recommended scabies treatment but I am still itchy and have even got a few new rashes. I really don’t want to go back to the same doc because he’s just going to give me more scabies medicine. I just thought scabies was highly contagious. So I really don’t understand. I guess I don’t know much about a diagnosis of “anthropod attack.” I’m assuming he didn’t actually SEE the scabies mite but enough evidence that backs up the diagnois that a bug is biting me. I just really thought that this was DH. I have so many of the other side effects of having a gluten intolerance. I’m so confused and very frustrated! Started taking benadryl to help me sleep at night and not itch, but it’s not helping and I wake up in an awful mood. Agghhh! I don’t know what to do! 🙁
Dear Rachel,
Just eliminate all gluten from your diet. Promise yourself to persevere obsessively for a year and see what happens. Not only did my rashes and eczema disappear, but also my hay fever and asthma. Amazing results.
Both my shins started itching November three years ago. That time of year we had the fireplace going more I thought perhaps it was dry skin. I’ve had dry skin all my life but never had the itching like that before. It was like comments on here, maddening crazy itching! Mine wasn’t bumps that itched, it was like dry skin that itched like crazy, but after scratching over it 5 or 6 times it would immediately turn in to hives , then it would start bleeding. Since the itching did not start out as bumps and it has only been on my shin and calves, I am not onfident that it is DH. I went to the dermatologist and she said it was dry skin. Gave me some ointment that didn’t work. Went back and saw another dermatologist at the same office, she said DH and gave me another cream, but said absolutely nothing about celiac disease. That didn’t work either. Went to two other doctors, one being an asthma and allergy doctor, and had multiple allergy tests done. Both doctors reported I had no allergies that would cause me to itch like that. One day my husband suggested I might be allergic to gluten. I had a blood test done and it came back borderline. I stopped eating gluten for five and a half months. I did not feel any better at all, my stomach would still hurt and I would be in the bathroom 30 minutes after I ate for 30 minutes, almost every time, and my legs were just as bad as before. I’ve tried Sarna lotion, it stops the itching but doesn’t do anything for healing up my legs. Another doctor put me on prednisone for 8 days and my legs cleared completely up! My legs were clear and itch free for 2 to 3 weeks then it came back again. I read avocado oil was good for your skin and would relieve itching so I added a little to my Palmers cocoa butter lotion. It seemed to clear up a little bit but not completely. Around that time I started using essential oils. The peppermint oil stops the itching almost immediately but it seemed it was drying my legs out also. Now I combine the peppermint with a coconut carrier oil. I am going to figure this out so I don’t have to go through a third summer not wearing shorts or capris or being able to swim. Thank you all for your comments, input and suggestions. I’ve seen some things on here that I’ve not been aware of so I will research those and hopefully my legs will get cleared up. Doctors and tests say I don’t have IBS, they’re not convinced it’s celiac either, so I’ll continue reading and researching and figure out what this is.
Yours sounds remarkably like mine. Shins and then spread around to calves eventually. I’ve been on every cream, but the itching still drives me mad. I have so many marks on my legs it looks like chicken pox just from all the scratching. My derm put me on an antibiotic to clear the marks, and prednisone for 16 days which did help it calm down but it is still there and it still itches, although not as much. The derm is clueless as to what it is and has biopsied it twice which just showed inflammation and eosinophils, which is basically an allergic reaction. I’ve been gluten free now for over a month and I’ve heard it takes awhile to go away if it is gluten. I’ve tried cocoa butter and coconut oil just to keep it from being so dry because I refuse to put any more creams on it that contain steroids. I’ve heard that a rash can rebound something terrible with steroid creams so I’m trying to go all natural. Still haven’t quite figured out what it is, but I’m like you and have dealt with this for two summers now. Can’t wear shorts or dresses that might show my shins. There is one thing I haven’t tried if it is something like an overreaction of my own immune system. I had a friend at work who had idiopathic hives all her life and finally found an allergist who gave her 6 months of Cellcept, which is an immunosuppressant. It dropped her immune system enough so that it rebooted itself and the hives went away. I might just find an allergist that will try the same thing for me.
They say arthropod attack when it looks like inflammation from a bug bite. Mine said that as well, but since it’s been there for 2 years and no one in my family has it either, it isn’t a bug bite, it just favors what a bug bite might look like. (which is an allergic reaction) It’s not scabies. It’s not even a bug. They just say that because they have no clue.
Sounds like Demodex Brevis. Google it, then reward yourself with a beer, and a pizza, you deserve it.
It would be great to hear more stories……makes having the chronic rash a little easier.
One other complaint I have about my DH is that I cannot afford the $889.00 tube of Dapsone cream. Insurance will not help pay for it unless it is for teenage acne. The medical world does not really have concern for Celiac or DH..at least in my state.
No Jennifer, it does not. That is why you have to help yourself. Dapsone is poison. Stay away from it. I use steriod ointment when the rash flares up. Costco pharmacy tried to charge me $850 for it, I told them to look into a different way to give it to me, and they are giving me smaller doses and working around it for me. And I don’t have insurance! You have to fight, and ask for them to do things differently for you. You have to be your own advocate. I highly recommend to anyone going through this, to cut out ALL processed foods! Even though they claim to be “Gluten free” they can still have up to 5 parts per million traces of gluten in them!
Oops! I meant 20 parts per million. “Certified Gluten free” foods can have no more than 5 parts per million….they have to be tested.
Jana, did Costco try to charge $850. for steroid cream or for Dapsone cream. I know it’s not good for you so I thought I would use the cream instead of pills. I thought I would only use it on my DH skin area if necessary to prevent me from scratching my shin off and getting another infection like I did last time. Do you think the cream is too harmful? Why?
Jennifer, no, Costco tried to charge me $850 for a steriod ointment called Clobestasol. It works really well. I was told by my Dr. that Dapsone cream is not effective in controlling DH, but is used for acne. I was on oral Dapsone for 2 months and started having peripheral neuropathy and muscle fatigue side effects. No medicene is worth losing motor skills over. Because there is no cure for DH, you just have to make yourself as comfortable as you can. A VERY strict gluten free diet, and the steriod ointment together work well for me. But don’t get me wrong, I have been through (and continue to go thorugh) scratching hell as well. 🙁
I tried to find a research study of Dapsone gel on someone with DH. It seems there is only one. The study had one participant…a 14 year old boy. He showed some improvement. The study did not say if he was gluten free or not?
I do want to try the gel. I am 80% better off gluten but I want my DH completely gone. I’m guessing I should stop other foods for awhile like dairy and corn. It’s hard for me because I love food and wheat was such a big sacrifice itself.
Question for you guys: does anyone have REALLY dry skin? I have parts of the rash (that are healing, or not, I can’t tell) that are so dry that the skin is slowly flaking off. I know, that sounds gross, but that is what’s happening. Anyone else have this? I used to be happy about it, because I thought things were healing, but lately, it’s just dry skin with more bumps on it. 🙁 Anyone else dealing with this? HELP!
I was lucky that my DH cleared up when I went GF. But, I continued to have seriously seriously dry skin. And, then roseacia. Nightmare-ish. Last Spring, after numerous trips to the doctor for skin creams and sinus meds, she had me go through allergy testing (againagain) and I started immunotherapy. I tested heavily positive for dust/dust mites, plus cockaroach and horse (??). Started shots in May and my skin has not looked this good in, well, forever!
Not saying this is what everyone with dry skin is going through, but it is really a miracle for me. I would have never guessed. But, my doctor said she was hoping this would be a result.
Jana – I have the same issue with the DH causing dry, dead skin. I have had a DH break out on the palms of my hands for about a year now and I think the most frustrating part is how it appears to heal, but then a day later your skin is reddish purple, cracking, and blistering. The best remedy I’ve found is two fold: (1) before bed I “pop” the blisters with a sanitized needle and then use an antibiotic cream on the now weeping blister holes, and (2) use Burt’s Bees lemon butter cuticle cream during the day to protect the skin. It is probably a terrible idea to burst the blisters, and I am in no way a medical professional, but it is the only way I have found to stop the burning terror the blisters cause as they form/expand.
Celiac’s runs rampant along the branches of my family tree (dad, sisters, aunts, uncles…you get the idea) and yet I am the only member of my family that “lucked out” with DH. My true frustration with DH stems from the fact that I have been gluten free, casein free, egg free and artificial sugar free for around 10 years. I had some DH break outs in high school (which were misdiagnosed as everything from ring worm to contact dermititis) but those went away when I was put on the totally gluten free diet. You can imagine my surprise (and grief!) when the palm of my hand burst out in a DH rash the day after Thanksgiving about a year ago and has not gotten better since.
I found that friction from wearing gloves – like gardening gloves, and ski gloves, made the rash on my hands worse. Now I coat my hands with olive oil before putting on gardening gloves (and wash the gloves now and again) and it helps.
Thank you for your reply Bea, I have the rash on the palm of my hand right now. I hate it. And I have it worse than anyone because I am a HAIRDRESSER! Yes, folks, I am doomed. Even when I have a few days off and it starts to heal, I go back to work and it explodes again!
In all honesty though, I hate the fact that is on my body more than my hands. A month ago I cut out sugar, alcohol, dairy, and of course grains, and the rash improved, but then came back again and is now healing. Although it is healing, I NEVER get my hopes up, because after it heals, it always comes back. Thanks for your reply, it does make me feel better to read other stories, I don’t feel so alone.
Keep em comin!
Here is something else that helped me: The rash on my hands hurt when I got them wet, so I put a jar of hand cream (Cetaphil) in the kitchen to use after washing my hands – before preparing food, and again before eating. You guessed it, this hand cream has gluten in it (from being fortified with vitamin E), and so every time I touched my food I was putting gluten on it. Once I figured this out I have had MUCH better success being completely GF, and now the rash only flares up once in awhile.
Dear Jana,
I am answering you down here as it is getting a bit slim for reply space up there.:)
Hon, first of all, celiac disease is not an allergy, so it is never diagnosed by “allergy testing”.
Without high antibodies on the celiac panel plus a positive biopsy for DH, you really cannot say you have DH or celiac for that matter.
A gluten free diet for you or anyone will not really clear the blisters or hives or lesions or rashes unless gluten antibodies are creating them in the first place. Many people have rashes of all kinds–I did–but it was not classic DH, it was just a rash likely fueled by celiac disease before I went GF. I get a rash from eating other foods high in histamine, too. Not everything is caused by gluten.
I’m afraid you have “self-diagnosed” incorrectly based on invalid testing. Sorry, and please don’t kill the messenger. I just dole out information I have learned as a celiac advocate for nearly 4 years.
Cheers! IH
Thanks for your reply Irishheart, I know celiac is not an allergy, but the rash I have is exactly what I see online and, it is exactly how everyone else describes it. What would be your advice to me? I don’t have insurance, and will not consume gluten to be tested. (I have been gluten free since May) What would you do if you were in my situation? Would love some input….
I can’t tell you what you should do, hon, that would be wrong, but if you feel better off gluten and the rash is resolved, staying the course is probably the wise thing to do. No point in being sick and in pain.
I just typed out my whole DH story on my phone and Safari crashed and it all got deleted -.-
Long story short, self diagnosed after rashes got really bad and I was mind blown to find out celiac has a skin affecting variation and that was my problem all along. Cut gluten, bilateral rashes on elbow area showed signs of healing and return of color.
Nothing you put on your rash would probably heal the skin without the root cause of gluten protein present in the gut.
*typing from my phone is the worst right now, keeps crashing safari so I will finish this post and reply to any questions or anything*
I put Natures Plus Ageloss First Day cream, as of late, and this has been thee best treatment with good results thus far. It calms the redness and soothes the itching, also promotes healing. DermaE makes a Psorzema cream that helped a lot with the symptoms but not completely. Coconut oil and hemp oil work great for the dryness.
I think most people need to be tested for what else could be causing their problems to recur. There are so many ways gluten can sneak it’s way in your system, and everyone has different severities. Be careful when eating out, start prepping as much of your own food as possible, and take care of your gut.
Look up leaky gut or intestinal permeability. I have yet to know if I have that, but it’s likely.
My question is, has anyone developed other problems in addition to the rashes? I’ve read hair loss and alopecia are common with celiac as well! And I am losing my hairline!! As far as I know, it may reverse in time, I just want my hair back! I don’t even care if I can’t eat gluten, especially if it’s not meant for us to eat.
Anyway, Celiac Disease and Gluten Sensitivity are very complicated and are becoming far too common!
I have DH and off gluten almost 1 year. I have lost hair in the past…mainly at age 16. I believe I may have a yeast problem? I’m doing the skinny gut diet right now..which is GF. It’s only day 4 but I see improvement in my scalp/ear itch problem.
I want to thank you so much for sharing your personal experience you never know how much you will help other people when you post because doctors and scientists like preachers and religions try and pretend they are the authority on things they know nothing about. I have celiac disease and have just discovered it after suffering 36 years with migraines and scarring my body from itching it constantly. Now I know my mother also had it as she had every symptom and was told for 40 years that she was mentally ill and then misdiagnosed as having fibromyalgia and given morphine patches that killed her. The reason I want to thank you is because my wife doesn’t think she has celiac disease just because her skin doesn’t bubble up like mine but she has alopecia, always is itching her ears, has hyper thyroid, dizzy spells, asthma has a hard time concentrating and because of your post I will now be able to help her. The doctors did nothing but give her steroid crème she because she refused the injections this is an outrage that doctors are so ignorant of disease and seem to only have knowledge in what products to sell you that do nothing but mask the symptoms. Her mother and her sister also have been diagnosed as being gluten intolerant only because brave people like you who have shared and not because a doctor was intelligent enough to check for it because based on their ignorant and dogmatic system of belief only a tiny minuscule amount of people in our population could ever really have this disease and so the rest of us are pretending or have some made up incurable auto immune disease they can’t even explain the cause or effects of the utter hypocrisy is enough to make you crazy by itself. So thank you so much from the bottom of my heart alopecia can destroy a woman’s confidence and leave them devastated no where on any alopecia web site have I ever heard a correlation of hair loss to gluten intolerance but as soon as I read yours and another girls comments and typed in alopecia and celiac disease a ton of information came up thank you.
I haven’t been officially diagnosed either but after a lifetime of digestion problems, general poor health and a year of awful painful and itchy rashes on my face (and scalp and occasional my arms) a GP eventually suggested coeliacs and it was as though EVERYTHING that had ever been wrong with me finally made sense. They messed up my test so I just decided to try GF to see if it helped as I was becoming desperate. I thought if it worked, I’ll maybe tackle getting diagnosed at a later point. I’ve now been GF for almost 4 weeks (with one accidental ‘poisoning’) and my skin has completely healed- I’m just left with redness where all the sores were which is totally manageable and I’m sure will gradually reduce. When I accidentally ate gluten, I got a few tiny blisters but they went away after a day or 2. other symptoms have improved too but I have been dealing with a few new things- like bad nausea and unusual changes to my digestion. I’m just riding this out and putting it down to my body adjusting as my diet is really not that different- I had an extremely healthy before (all whole foods) this and actually only ate foods with gluten in them about 3 days a week and more when on holiday or at an occasion (which now explains why I got ‘food poisoning’ so often!) .
I thought my hair had got thinner all over this past year but wasn’t sure I was imagining it. As I also got DH on my scalp, I wasn’t sure if the thinness was a result of me scratching it- I tried not to but it was SO itchy! It would totally make sense though if you were deficient in any vitamins or minerals. Do you take any supplements now? It might be worth trying some.
I live in hope that once my body heals, the majority of these additional symptoms will rectify themselves. I find out new things all the time where I’m realising ‘that’s coeliacs too?!!’. I think it just gradually affects everything.
My approach to all of this is that my body has been dealing with a substance that’s like a poison to it for absolutely years and it’s going to take a while for it to get as well as it can. I am just going to try be as patient as I can and stick to a GF diet while eating nutritious food to try give my body what it needs to recover. I’m also taking some additional magnesium, vitamin B12, probiotics, plus a good all rounder vitamin to try help my body recover.
It’s not an easy thing to deal with but I’m just grateful it’s a disease that doesn’t require daily medication and that it’s something I’m fully in control of (providing food is clearly labelled!)
Yes I eat super healthy and clean and have for the past 3 years, started realizing it was DH about a month ago. I’m vegan so I relied on organic wheat every now and then, if it’s a genetic thing then maybe I just gave my system a better chance at reacting to the gluten. I work at a health food store so yes I’m supplementing with a bunch of different things, which could also be why my symptoms are sort of mild, and havent gotten too much worse. In terms of the gut, taking B12 and probiotics are a good idea, I’ve learned that drinking bone broth and consuming gelatin (from organic sources) is one of the best ways to heal and seal the gut. Glutamine is really important too. Right now I am taking turmeric, quercetin, and a really high quality multi. Make sure to check supplement labels to say no gluten, it could be risky otherwise.
A crazy thing about me too was I saw a Blood type diet book for cancer once so checked what it said blood type B should be eating for healing. There are these sugar binding compounds that are in all foods even animal flesh called lectins (wheat has the worst lectins) and technically it can mess with certain people based on their type. Tell me why I get to the grains category and it says blood type B should never consume grains!! It was so weird reading that after self diagnosing DH. It even said we do very bad with corn, so I think I will be dropping that too, and have already limited it. Fyi corn actually contains glutens and probably affects a lot of us. If it’s not organic corn it’s just Monsanto garbage anyway so watch out.
From what I’ve read, it can take up to a year or more to fully heal the DH rashes, so I am assuming it may be the same for the hairloss. If it was on your scalp maybe it could go either way, but if it’s alopecia, the follicles have been attacking themselves. My scalp never got itchy but I never had any rashes other than my arms. Hopefully it will reverse. I read some anti-arthritis meds worked very well In reversal.
I think a paleo diet is our best option, for me I am paleo-vegan, but may someday find myself eating clean healthy meats.
Hi all, I have commented before, and have been gluten free for about 8 months now. I am so incredibly depressed right now because my DH is back. It is so hard to know if you have been accidentally “glutened”. I took my kids to a restaurant called “Five Guys Burgers and Fries” and ordered a protein style burger (without the bun) and fries. Then the next day I took them to Taco Bell and ordered the Cantina bowl with no meat. (I got lazy and didn’t want to cook for a couple of days) And the next day, the rash came back. I have since then, looked up the things I ate at those restaurants, and they seemed to be gluten free, but how can you be sure?????? THAT is my question, should I just stop eating out forever? I am desperate for answers right now, can anyone help?
I never knew the hands were involved. I’m having a skin biopsy done next Sunday. I have what they call a typical celiac rash. Symmetrical on my stomach, back, buttocks, upper legs and was on my neck (under my hairline at the nape), elbows and knees. Kind of a burning, very very itchy rash that someone described as rolling in nettles…and I agree. I’ve had diahrrea for a year, been lactose intolerant for over 15 yrs. My hands were one of the first symtoms with diahrrea. They have been diagnosed as exzema but nothing soothes them. They break out in tiny itchy watery pimples then disappear but are so dry they are cracking an bleeding. Can anyone suggest products to help?
I’ve found the best product so far to help with the dryness and cracking is ‘Okeeffes Working Hands’ cream. It’s like $8 in America and I got it in Australia for $10 on some online pharmacy. Definitely been the most helpful, after trying all those natural products and getting nowhere. Give it a try! Everyone raves about it.
Hi all, I have commented before, and have been gluten free for about 8 months now. I am so incredibly depressed right now because my DH is back. It is so hard to know if you have been accidentally “glutened”. I took my kids to a restaurant called “Five Guys Burgers and Fries” and ordered a protein style burger (without the bun) and fries. Then the next day I took them to Taco Bell and ordered the Cantina bowl with no meat. (I got lazy and didn’t want to cook for a couple of days) And the next day, the rash came back. I have since then, looked up the things I ate at those restaurants, and they seemed to be gluten free, but how can you be sure?????? THAT is my question, should I just stop eating out forever? I am desperate for answers right now, can anyone help?
Sometimes there is a sauce that has gluten. I went to a similar burger place called The Counter and even though I hate to ask, they let me know that none of their burgers(even without buns) are gluten free. The fries are fried in oil with breaded stuff and are also not gluten free. Chipotle is my favorite fast food place. Burgers and fries are easy to make at home. I get frozen burgers at Costco, put them in the oven with the fries and it is simple as a fast food night. You can use paper plates!
Thank you for your reply Jennifer. I never thought that a burger could be not gluten free. It is so tricky. As for the fries, I figure if you go to a place that doesn’t sell anything fried instead of fries, there is no cross contamination. But I know that sometimes, they use a seasoning that contains gluten. So frustrating, if you let down your guard for one day, you could be in trouble! 🙁
Hey Jana (=
I just now discovered this site as I was putting stuff together for my brother to read up on, just in case he comes across some of these conditions/issues down the road [=
He’s a couple of years younger & we are now into our 40’s.
I’ve been dealing with gluten issues since about 8 & only found out what was causing it all late in my 20’s with the help of online health communities to help diagnose my symptoms that others also have.
I learned early on not to trust doctors & so I only really had a couple of them look at me which ended up with prescriptions for various creams or ointments (helped temporarily, never a cure).
Anyways, I’ve been GF for 12 yrs now even though I did relapsed early on after being off gluten the first 2 yrs thinking I could just go back to eating regularly like anyone else… wrong!
Not only did the usual symptoms returned, a couple of newer ones popped up & were nastier than the others – confused, it took a few weeks for me to finally realize what was going on & have been totally GF ever since!
Reading these posts, I just wanted to share that any time one eats out or that someone else had prepared the food, there is a big probability of cross-contamination (even if the ingredients don’t have gluten)… actually, the chances that cross-contact with gluten is still possible & very likely.
Most would consider oats to be GF, even though most of them sold out there are cross-contaminated either from the field where crop rotation with barley, rye, or wheat is the norm or from the mills/processing facilities.
There’s a reason why one could buy/find GF Oats (organic or non), but never GF barley/rye/wheat 😉
Even so, some would not consume oats or risk any chances whatsoever.
In a nutshell, everything I consume is bought, cooked, or prepared by myself… whatever I buy, I always look up the ingredient lists & any allergen warning on the label.
Fortunately for me, I have no problem consuming many other foods out there that some completely cannot such as diary, GF grains, nuts/peanuts, wine… though, I stay away from all artificial sugars & most oils except for organic virgin coconut oil or EVOO – no soy, as well.
Unfortunately, one food group I can no longer have is crustaceans (crabs, shrimps,…) as it causes instant itchy reaction that’s so hellish, I would not wish it on anyone else!
It is very tough for most who have not learn how to cook to start preparing meals for oneself, but anyone can learn step by step & stop relying on others especially when dealing with these health/life issues.
Cheers!
It’s also possible there was MSG or other “flavor enhancers” in something, particularly from Taco Bell. I ate at a local fast food Mexican place a couple of years ago and definitely had an MSG reaction. That will make me itchy, along with the other stuff it does to me. I also have to watch sulfites (used as a preservative and sometimes a bleaching agent…).
I’ve never had a problem at 5 Guys. They change their gloves regularly (more if you ask), they grill buns on a different grill, and nothing is in the fry oil except fries. All are GF (minus the buns, of course). That being said, things can go wrong. Who knows. I would worry about Taco Bell. They have said corporately that, although certain items may not actually contain gluten, cross-contamination may occur, as there are numerous gluten containing items on their menu. It is really hard to eat out, just because you never know. Sorry you had a reaction.
Hey dude! My name is Sarah and I’m 21 years old and I’ve been allergic to corn all my life. I’d often get hives on my back from eating it. Just recently I started getting them back but they were like I’d never seen before and they appeared all over me. My mom informed me that they were dermatitis. The kind you get when your celiac, which my mom is. And calling it the rash from hell is definitely true. As sad as it is that so many people have suffered from this. It’s nice to know I’m not the only one with these annoying things. Thanks for posting info about it!
I HAVE BEEN WAITING FOR THE MOMENT I FOUND OUT WHAT MY RASHES WERE FOR MY WHOLE LIFE oh my god I want to cry. being a sufferer of an awful immune system that came with systematic arthritis as a child, I thought I was just going to be a sufferer of poor health from it and I learnt to accept it. however, since I was 12 I have suffered with this ridiculously painful, itchy, life ruining condition on my hands exactly as she describes ‘wanting to rip my skin off’, I say everyday I want to amputate my hands! always thought it was an onset from working in hospitality as well, however it’s gotten to the point where the blistering rashes will wake me in the middle of the night, burning like mad. it’s now spreading up my arm, and is sensitive to any sort of heat. going to the doctor ASAP to get tested, thank you so much for ending my years of googling the wrong things, you’ve quite literally saved my quality of life
That’s what we’re here for!
I am 55 and was just diagnosed with DH TODAY! I have had the insane itch my whole life. I have scars on my legs and arms and in fact have lost feeling in some places (and no, it did not stop the itching). In the 60s, there was no understanding of Celiac Disease at all. I was just considered to be a person with no self control. I can’t tell you how painful this has been my whole life–physically and emotionally. When I was finally diagnosed with Celiac about 5 years ago (due to intestinal issues), still no one mentioned DH. I have been totally gluten-free since (as much as I can be). My rashes just seemed to go away with minor reoccurrences. I went to a conference last week and could not control my diet as well as I would have liked. I came home with this rash and went to a different doctor who immediately told me what it is. I have had 50 years of unnecessary pain. I pray others find out much sooner! What can we do to make sure others do not have to go through what we have? Posting here is a great start!
Some good info here: http://glutendude.com/celiac-awareness/dermatitis-herpetiformis-the-celiac-rash-from-hell/
My route to diagnosis is rather convoluted wrt DH, but I am pretty sure I had/have it. Since youth I had various rashes that were either attributed to allergies or eczema. Things seemed to calm down outside of typical allergic responses. Then around my mid 40s I started getting really itchy skin around my eyes and my arms. Passed through range of various types of doctors and my eyes were diagnosed with allergies and rash on inside of my elbow due to eczema. The skin on the inside of my elbow was darker and I was told damaged due to scratching. Few more years later eyes and inside elbow were calm but then started insanely itchy, burning areas on the backs of both hands. Allergist said I had super sensitive skin, dermatologist just attributed it to eczema. I had to take Benadryl every night just to sleep and put cotton gloves on in an attempt to save my skin. Approximately a year later I was sent to a gastroenterologist for suspected Celiac disease as I was having arthritic joint pain, tingling in my toes, abdominal issues, and still itchy rash etc. He diagnosed me with Celiac after biopsy though found out later it was not really positive in most people’s opinions. It took within about 2 weeks of going gluten free for nearly every symptom I have to disappear. I was able to stop the Benadryl. The rashes took a bit longer and even a year and a half later I would occasionally get a mild version of the rash back but it would resolve before could see a dermatologist.
Now been 3 years gluten free, no “DH” rash, inside elbow the skin coloring is near normal, no other symptoms from pre-diagnosis related to this, but still have past point of test elevated Deamidated Glidan IgA which no one can seem to explain.
So still not sure what it is I have, but I will stay gluten free for life as it is better than living through my rash again!
Thank you Gluten Dude for this site and for a bit on DH!
That is great that you you were able to figure this out. I have had arthritis pain since I was 34 and I am 45 now so I don’t think it will go away. It is not RA thank goodness! I have been gluten free for over a year but I keep having accidental exposures. I took some homeopathic pills made by Hyland with no gluten ingredients listed on the label. After a severe DH outbreak I contacted the company and they said that the pills are made with gluten. Since gluten is in just about every single product on the planet I can’t seem to go for more than a few months without an accident.
Jennifer, so sorry to hear that keeps happening. In an attempt to lower my antibodies I was told to go on strict gluten free with no processed foods. Did this for nearly two years, but since no resolution to antibody issue I have to admit I have returned to a few processed foods (only rice cakes and crackers) and baking a few gluten free items from scratch. Funny thing is I am getting a few arthritic pains again here and there so perhaps being super strict for me is the trick, but as you said it is near impossible. As experiment may try returning to strict diet, but so, so time consuming!
I have read elsewhere that probiotics may contain gluten too and I hate to take medicines of any kind so try to keep my intake very low of anything besides absolutely essential. As there are no medication standards out there for gluten free, I would be leery of homeopathic pills as hard enough to do prescriptions pills if needed. But I do realize that for many homeopathic methods work.
Hi Ann
Thanks for writing. I did not realize that about probiotics as I take them also. I guess I will stop all supplements. I know I can avoid gluten If I shop the parameters of the market, go back on a modified paleo (with rice, potato) and never eat out. It’s not too fun but I guess it is the only way. I also need to buy expensive, gluten free toothpaste and shampoo. I am afraid to use mouthwash because I don’t know which one is gluten free. My husband bought Crest pro health from costco and I read somewhere it has gluten. This disease is expensive and time consuming!
Hi Jennifer M.
A number of years ago, because of a dairy allergy, a naturopath put me on a dairy free probiotic; they are more expensive but totally worth it. When I went to the naturopath and was diagnosed with wheat intolerance, but because my mom is Coeliac, I just went completely gluten free; however, I was still eating foods with dairy since it didn`t `”seem” to bother me (beyond snoring) even though I was previously diagnosed with a dairy allergy when I was 16. Recently, my sister found information linking the receptors in mitochondria responding similarly to gluten and dairy. So I am in the process of eliminated dairy once and for all. It also seems that hypothyroidism is also connected to the whole issue too. Although not specifically related to Coeliac`s, there is some great information located in “The Wahl`s Protocol” on autoimmune responses.
Also, I have had blisters and peeling on my hands and feet for years, but the doctor said he had no idea what it was, and that anyways, all mysterious skin rashes were treated by doctors with steroid cream. Recently, the rash started on my back, and I only just connected the whole rash with DH. Hopefully going dairy free as well will stop the DH madness.
I never took probiotics. If I could eat yogurt I would go that route for natural way. Guess I live simple life as do not use mouthwash either. There is certain amount trust with products as non food items aren’t required to check/test for gluten even if they claim to be free. Makes every day life never boring just tedious!
Hi,
I’m glad I came across this posting. I am 22 years old and have been battling with a rash for a few weeks that, based on my own research manifests itself much like DH. It started on my right elbow surrounding a bug bite, severely itchy, fluid filled blisters. I attributed it to the bug bite, but when the bite healed and i was left with a rash climbing up my arm, covered in blisters I began to become concerned.
It has been 3-4 weeks since the rash initially started, since then it has progressed all the way up to my armpit, to my other elbow and up, my butt, knees and thighs, not to mention my fingers and toes are covered and swollen with blisters.
I have seen a dermatologist who has me taking steroids (which is the absolute worst), i’ve been on them for 6 days with no relief. Every day I have woken up with more and more blisters, intense burning, itching, basically tearing my skin off to get the itching to stop. I wake up in the middle of the night bleeding from it. The dermatologist only throws more and more steroids at it, instead of trying to get to the root of the problem. Based on my biopsy, she says I have contact dermatitis…. I have always had faith in modern medicine as it has always helped me when I have been ill in the past. But this time, it’s not working and I feel as if nobody will listen to me.
After doing my own research and finding nothing that even slightly resembled my rash, I came across DH… I was beyond excited to find literature that described everything I was going through and had matching pictures (gross I know, but I was desperate)! I have decided to try cutting gluten out for a few weeks and see if it helps… since being gluten free for 48 hours my rash has already started to calm down.
After this long rant, I’m wondering if anyone else has struggled getting doctors to take them seriously, or possibly been misdiagnosed? I feel that I am my best advocate, but need support from others who have experienced DH! Thanks!!!
Sorry to hear about your rash- that sounds awful!! I think doctors can get it so wrong when it comes to things like rashes , autoimmune issues and gastro issues, I think because the symptoms of them all can be non specific and can be symptoms of so many things. My experience is that doctors can have a little too much of ‘tunnel vision’ so they make their diagnosis and just disregard any other info that contradicts this. I had years of health issues but nothing serious and over time just dealt with everything on my own rather than seek medical help but when my rash started last year- on my scalp and face, I was at my doctors most weeks for help. It was unbearable pain wise but also because it was on my face, it was quite tough on me emotionally. I’ve seen so many GPs and now a consultant dermatologist and the things they’ve told me would be laughable if it wasn’t for the fact it was about my health. The dermatologist told me you can’t get DH on your face- it’s only elbows, which I know is completely untrue. A GP also told me coeliacs wouldn’t account for my health problems as it’s a gastro disease (!).
I work in the health service and do have some sympathy for GPs- they can’t possibly have specialist knowledge in all that they see in a day and they have to make quick decisions on who gets referred and who doesn’t and they really can’t refer everyone that requests it as we’ve got limited resources. But that said- considering I can find out what DH is with a quick ‘google’…it’s a little frustrating an actual SKIN DOCTOR wouldn’t know more about it!!!
What I ended up doing when I got to a dead end with my doctor was to go strictly gluten free as an experiement- my rash had cleared in 2 weeks and my health continued to improve as the weeks continued. I went back with my ‘evidence’ and then got referred to a gastro specialist.
I’m now on day 5 of my gluten challenge so I can go get an endoscopy to be tested for coeliacs. It’s been a very long and bumpy road but it does seem to be this way for most.
Good luck with getting some relief and help!
I have been misdiagnosed for 8 years. When I started to get the blister rash my Dr said it was from an allergy. When my stomach hurt, it was acid reflux, stop eating chocolate and citrus. When I was depleted of vitamin D it was ” get more sun exposure”. Well, I changed Dr.s and in 7 days he knew what was wrong. I am actually very upset at my family Dr. We have known him for over 25 years. He just passed this off like any other complaint and wrote scripts for steroids that didn’t work, high doses of Vitamin D that didn’t absorb and antidepressants. I am so thankful to finally know whats wrong and how to fix it. I went to the health food store and bought probiotics and gamma-zymes in hopes to take care of this without all of those nasty antibiotics. I will let you know how it goes. 🙂
Oh, I should also mention I am not basing my gluten intolerance to just the rash… I have had many symptoms in line with Celiac over the years which I have ignored and attributed to being my “norm”. I feel this rash has simply forced me to face the issues I have experienced over the years.
I am so so very thankful for this site GDude! Man….I’m learning something new every day. I take vitamin E 1000gm and just bought a new bottle two weeks ago. I can’t believe it…. They came from wheat? It’s not written on the bottle ingredients. I’m shocked! I always buy creams with vitamin E especially for my skin…
I am currently working on my home and cross contamination. Three generations share a home, so I need to make some changes real quick!! Thank again.
I posted on here earlier this year about my terrible DH. It got so bad I couldn’t even have a grain of rice without my hands blistering. Since then I’ve done my own research and have actually cured my DH using homemade kefir. I strongly urge you all to start eating probiotic foods, especially kefir as it contains 5x as many probiotics and unique strains of bacteria as yoghurt and doesnt require silly incubation machines. it has changed my life in ways I can’t explain and I can happily eat gluten without any problems now!
I’ve been suffering from a rash on my legs now for over a year and my dermatologist can’t make heads or tails from it. I’ve been on creams, antibiotics, steroids, and been tested for lupus but nothing has come back positive and nothing has made it better except a strong steroid dose…but then it came back. I’m now beginning to believe that it might be celiac. I like to describe the rash as almost not very itchy until I start to scratch it and then I want to tear my skin off it itches so bad. I’m going to try going gluten free to see if it works. Thanks! I’ll let you know of it does!
Hi Michelle,
I would like to offer you a bit of advice, as I went through this almost 2 years ago. First of all, dermatologist are CLUELESS when it comes to Dermatitis Herpetiformis. You need to be your own advocate. Secondly, you need to be VERY strict with your diet in order to eliminate gluten completely from your diet. Honestly, it took me a good 6 months to get it down. And last, but not least, and this part really sucks…….it will take a good 6 months to a year for your rash to go away EVEN though you are gluten free. That was the hardest pill to swallow for me.
My advice to you is, do your research! You need to become an expert for what foods have gluten, and what foods are safe. And have patience, if you really believe that what you have is celiac, then you must STAY gluten free for the rest of your life.
I know this sounds harsh, but take it from me, it is not impossible.
Let me know if you have any questions……..I had to figure it out myself, and it would have been nice to have help from someone.
Good luck!
P.S. Once you become gluten free, and your rash starts to go away, you have to believe for yourself that you have celiac, in order for a test to come back positive for celiac, you MUST have gluten in your system. (This is why I will never be tested)
Keep us posted!
Thanks for the advice. I know I am desperate for treatment now, and I’ve heard that there is a med that will work for the rash (dapsone). I know if I get rid of it with meds I will need to stay gluten free to keep the rash away. But at least if the dapsone works I’ll know what it is. I’m one of those that doesn’t really have any of the bowel issues. (I consider it mild IBS.) I know the rash is from an allergy, we’ve figured that much out, but otherwise, not a clue as to what is causing it. I guess I’ll go back to my regular doctor and see if they can test me. I’ll keep everyone posted.
P.S. I have been putting Frankincense oil on the rashes and it helps the itch.
I use to think it was shingles or herpes ? I found out I had Celiacs and realized it was DH rash. It is painful blister like sores mostly on my neck, scalp and face. It appears if I accidentally eat dairy or gluten or cross contamination. I also get the gut pain, bloating, joint pain, ears ring, canker sores, brain fog or just feel depressed. It changes my whole personality. It plain sucks.
I use to think it was shingles or herpes ? I found out I had Celiacs and realized it was DH rash. It is painful blister like sores, itchy, mostly on my neck, scalp and face. It appears if I accidentally eat dairy or gluten or cross contamination. I also get the gut pain, bloating, joint pain, ears ring, canker sores, brain fog or just feel depressed. It changes my whole personality. It plain sucks.
I have found this site (and a few others over the last few weeks) and I think, hope, PRAY I am finally on to something. Since Nov of 2011, I have suffered from this rash, though “rash” does not even BEGIN to cover what it is. In Nov ’11, I had these small bumps on my upper right arm that itched terribly. Had no idea what they were, so I itched them, thinking they were bug bites. A couple days later, the few bumps had turned into a larger, redder, angrier section of skin covering my upper right arm. Soon after, it covered my upper left arm and was spreading to the lower half of both arms. I went to a family physician who basically had no idea what was going on. I then saw a dermatologist (by this time, it covered my arms and was making its way to my torso) and they said eczema. Well, not being a doctor, I said, sure, OK. Eczema it is. Two days later, the rash covered my entire body and I wanted to peel my skin off. The itching drove me nuts. It consumed my thoughts. The rash was red and swollen and there were some blisters, though they never got very large in size. I was able to get back in to the dermatologist, who gave me a steroid shot, some creams, and took a biopsy. After the steroid injection, it was a few more days of hiding under long sleeve and turtle necks, doping myself on Benadryl, and wishing I could get a new body before the rash started to clear up. The biopsy result came back as folliculitis. I honestly couldn’t believe it but it was getting better so I thought I was back to normal. The entire incident lasted about 2 weeks and I hated every second of it.
Fast forward almost 5 years, and I have had this rash come and go many, many times. Sometimes it occurs in different places but the most common locations are near my arm pits, my upper arms, and on my inner elbow area. I have had it turn into a staph infection 3 times, though I try my hardest not to itch. The area sometimes gets red, swollen, and looks hive-like, but it takes weeks to go away. The end result is usually brown, pigmented skin that seems a little lighter in color than the rest of the skin. I have spent so much money on doctors and creams and no one can tell me anything. It is maddening and it consumes my life while it flares.
About a year ago, I was making my last attempt at finding an answer and saw an allergist. They did some standard blood tests and it was then that I found out I had Hashimoto’s Hypothyroidism. I thought maybe, MAYBE, that is the reason for all of this. I started thyroid meds, and while I have seem improvements with other thyroid symptoms, it hasn’t seemed to help much with the rash. I still get the rash. It seems like it’s there, even if it’s not. Does that make sense? It’s like, if I itch my arm just because it had a moment of regular itchiness, within minutes my arm is red and little bumps show up. If I leave it alone, it sometimes goes away. Sometimes it doesn’t.
I came across an old article on another site that said DH was sometimes linked to autoimmune disorders (like Hashimoto’s) and can be due to Celiac’s or non-celiac gluten insensitivity. I have now been GF for 4 weeks and it’s been quite a change, but I’m committed. I have not been tested for Celiac’s and I honestly don’t plan to. Doctors have let me down quite a bit over the last 5 years and I’ve made the decision to go GF to see what happens. I started the GF diet at the onset of a rash outbreak, which finally just cleared up, so at this time I have no evidence that it will work. However, I have run out of options and I hate my life when I’m itchy so this is my next step. Wish me luck…
I realized I had a mistake in my original post… I meant to say “non-celiac gluten SENSITIVITY”
Hi Whig, I’ve had the same thing for 3 years. I feel your pain. I’ve had Rash on my upper arms and really bad on my legs too. I thought that I had hashimotos, since I had a lot of the symptoms. After several Dr.’s, including an allergist and dermatologist. Ive got nothing, no results and I’m fine. So I went gluten free about 6 months ago. I was still getting occasional intense flare ups. Just a month ago I started taking care of my gut. Acidophilus (probiotics) at night before bed and a cup of keifer in the morning. I haven’t had a flare up on my arms for a almost a month! I still itch my legs but not nearly as much. It could be that I haven’t had gluten in a long time as well and that’s why my arms are better. Honestly I’ll do whatever it takes. It’s summer and I can wear a tank top. I wish you the best and hope your better soon.
Why are you talking about skin mites here? This is for people who can’t have gluten due to Dermatitis Herpetiformis.
Do you have to be gluten free to get rid of skin mites???????
Please explain???????
It was a spammer. I removed the comment.
Hello to all my fellow sufferers of DH…I was just diagnosed with this disease after months of thinking I was being eaten by fleas but never seeing them; then thinking I was having an allergic reaction to a new drug; and then thinking it was a fish/oyster allergy. Nothing, and I mean nothing, was making a dent in the pain, sores and itching that I have been experiencing for almost a year. I have been gluten free for almost three years so I didn’t think it could in any way be related. I went gfree because my mom had been diagnosed with celiac disease late in her life and because I have rheumatoid arthritis and thyroid issues, both autoimmune diseases. WHY should I develop DH when I am a conscientious observer of the gfree diet ?? I had an epiphany yesterday…Casein. I was not dairy free until today…I drank heavy cream in my coffee and ate lots of cheese every day. Casein mimics gluten and I’m believing it’s the cause of my DH. I’ve just recently started Dapsone and I can say it’s been a huge help. Like one writer said, you feel almost like a leper with all the ugly lesions all over your body. Fortunately my face has not been affected but I’m tired of wearing long pants and shirts to cover what looks like syphlitic sores…not to mention how easily they bleed.
This is a mean disease and I’m sorry for anyone who bears it. Thank you for letting me share my story…just in case you’ve been faithful to the gfree diet and wonder WHY you’ve fallen into this pile of nettles, ants and fleas…think casein too.
Yup, I noticed that too and I’m now Dairy free. I’ve tried most dairy including A2 cow, goat, sheep, and they all bring on the DH. Even butter does, but I haven’t tried certified casein free ghee. I’ve also found bakers, brewers and wild yeast (eg in kombucha) aggravate it too 🙁
Richard–I was not diagnosed with DH right away. Suffered all this summer with it. My two GP’s didn’t know what it was and gave me prednisone. Then they said go to an allergist. He said looked like scabies. Did the laundry and home cleaning and my wife and I put cream all over ourselves ( she didn’t have any symptoms. Then went to my dermatologist. He biopsied a sample of the outbreak and adjoining skin and said DH. I’ve been gluten free for 3 weeks and only have about 4 or five skin outbreaks left. I can see the end of the tunnel. I am 68 years old. I guess it can start at any age.
Hi DH community,
I have what sounds like this. Both elbows, knees, hairline, shoulders and the worst is on by butt. Feels like I sat in Tabasco sauce. Horrible. Been going on for about three months but have had milder symptoms for about a year. Anyway, I’m going to a dermatologist soon and want to know what to ask him. Any advice? Seems like a lot of people go through the ringer to get this diagnosed.
Also, I’ve read some folks say to watch out for dairy, iodized salt, coffee, casein…pretty soon the list of ‘things to eat’ becomes meat, veggies, beans, potatoes and nuts…Any advice out there for food that is a ‘sure bet’? And how do you start the process…I’ve been GF for about three weeks and have noticed a little improvement (it sounds like it takes awhile with a strict GF diet). Anyway, thanks for the help!
-Isaac
Watch out for yeast too – brewers, bakers, wild. I find they’re all nearly as bad as gluten. You might need to try eliminations on the autoimmune paleo prohibited foods too (e.g. eggs, nuts, nightshades, etc).
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With me, I didn’t feel like I had any problem with wheat. Until I stopped it for 14 days, out of curiosity, and, tried it again. As time went on and I tried to clear up my health issues, I found corn was at least as bad as wheat, rye was a horror, and that I started to get rashes on my arms (at first only the left, then both but always starting with the left) if I accidentally (or, “accidentally) had wheat and dairy together, then even separately if there was much, then if there was even a little bit. Then, corn and even rice, sometimes. I am not sure if I can still eat oatmeal or not, at this point. I have a bunch of steel cut oats but I felt bad last time I ate them, and, I am not sure if it was because of the grain or just because I feel bad most of the time, anyway; plus the flu has been going around.
But, after I ate some Fritos and really realized that corn is a giant no-no, my detox efforts were stalled for weeks. I’ve been taking R or Alpha Lipoic Acid, heavy dosages of Vitamin C, pregnonolone (sp), as well as L-Arginine and L-Ornithine in combination with L-Citrulline. I had been losing 1” off my waistline per day, which was a good sign that it was working since I had lost over 50 lbs. and my waist was actually bigger than it had been before I lost the weight, on most days, which is why I was looking in to detoxification of my liver in the first place. As soon as I ate the corn, I was back to gaining weight and getting swollen up.
Oh, also, I had lost a lot of width on my feet once I started the detox and my feet got less thick, and, I could walk without being in immense pain on the bottom of my feet or feeling like my bones were being pushed out of place. Which did not go back to being quite as bad as before, but, it did start hurting more after eating the corn.
And, yes, I did experiments. I am sure it is the corn, not the salt. I say because everyone always tries to school me on this, as if I haven’t lived with my own body or done anything to try to figure out things until just now. Anyway …
I’m sorry for rambling, but, the point is, after all this and after finally getting the weird smell back that tells me the detox is working again, I have started getting the same kind of rash on my abdomen, over quite a large section. This is a new one on me and what I was trying to find some information on.
Specifically, I am wondering – hmm … I read somewhere that the detox itself can cause rashes and the allergic reactions to fire off, simply because your liver has not been working properly and you have components of your allergens stored in your fat cells and circulating in your blood, so that having these rashes is actually a sign that your body is clearing away all that old, built up mess.
Does this sound likely to you? I do know that I have not eaten a lot of extra wheat or anything like that, just recently, so that the sudden worsening of rashes, in feel and size as well as more places being affected, could be explained in that way.
Thank you for reading this, whomever was intrepid enough to take the journey.
Before I gave up gluten grains & oats I found oats at least as bad as wheat I even get a recurrance with white rice. Read my convo in this thread with cia_marie where we discuss trigger foods and oxalates, which seem to be a contributing factor (http://www.lowoxalate.info/papers/mechanisms.html). The rash you have n your abdomen sounds like the ‘oxalate dumping’ rash I got when I went low oxalate (http://www.lovingourguts.com/what-are-oxalates-2/). You might want to check if you’ve been eating less high-oxalate foods or moved out of a moldy environment lately as this might be the cause. Soldier on 🙂
Both of my daughters have celiac disease, but the youngest has DH as well. Her DH got so much better off gluten, but wouldn’t clear completely. Oats!! Her body sees the protein in oats as gluten (and these are clean oats) Now that she’s off oats too, her DH is improving again. The other daughter does not have DH and is not sensitive to oats.
Good to know thanks Wendy. Oats (not ‘clean’) always made my itch worse, maybe even more than wheat did. I gave up gluten and oats at the same time 4.5 yrs ago and have occasionally considered testing the ‘clean’ oats but haven’t been prepared to risk it. In light of your daughter’s experience, and the fact that even rice (brown and white) seems to bring mine back, I won’t bother 🙂
I get DH on my neck, face, scalp, arms, buttocks, perineum, and canker sores in my mouth. All is painful blisters thought I had shingles or herpes. I get them when I have dairy, gluten, or soy. I am currently off eggs, gluten, most grains, dairy, soy, and eat legumes sparingly. I am doing a lot better. I still have my coffee with coconut creamer and some sugar. I eat only organic and antibiotic and hormone free meat. I try to buy grassfed too. I try to limit processed food. I still have problems with IBS. I have multiple chemical sensitivities due to mthfr hetro 677 and 1298. I have hashimoto’s and celiac’s. My bigger issue is brainfog, fibromyalgia, ears ring and fatigue. I aslo have MAO too. If I don’t get enough sleep it can trigger my symptoms.
I didn’t read the million comments that have already been written, so I hope I am not repeating too much of what might have already been said. I am a DHer. It’s awful. I have had a ton of skin issues over my 68 years, all of which were connected to gluten, as I have them no more since being diagnosed at age 55 and going totally gf.. Mine was quite special. It made my hands look like they had been through a meat grinder, complete with blisters, fissures (at every fingernail) and cracks and redness everywhere. Unlike the gut feeling better rather quickly when one goes gf, the DH took three months to resolve, which is pretty common. But the most special part is that it was on my EYELIDS for five years before diagnosis! I heard Dr. Zone (an expert in the field) speak at a celiac conference years ago, and I asked him to confirm this. He told me that the hardest place to resolve DH is the eyelids. I don’t want to be that special again. And DH can happen anywhere on the body, not just the elbows and knees. I am proof of that. I do hope this little tale helps someone out there. And, Dude, you do know that it isn’t May yet, right?
Yes, it happened to me to have rashes on my eyelid, and it was not pretty. I could not wear any makeup and was sensitive to many ingredients in the makeup or lotions. I stay away from gluten completely and stay away from retinol eye creams or facial creams, etc. Have to live my life very carefully now to avoid rashes in, practically, everywhere. Oh, I also cannot eat cashew, and can only eat very few almonds to avoid rashes on my face or canker sores in my mouth.
I thought I had poison ivy on my forearm. Then three months later I’m still broken out and itchy. It was slowly creeping down my arm. I had to wear 3/4 sleeves and even then you could spot it. My lower back itched like crazy as well but no blisters like my arm. I took HOT showers every night to find relief, but it didn’t last long.I was having a multitude of other issues and I read something and decided to go gluten free (looking back I should have asked for a blood test, but was so sick of doctors telling me to “destress”). Within two weeks my rash was gone and the itching stopped. I fell off the wagon a few months later (you know…the early days of denial) and Bam! Rash started to reappear. So have been gluten free for over 4 years and never looking back.
Yup, glad this is being talked about because it is most commonly mis-diagnosed as Eczema. I have felt like I have been one of the few discussing it for the past 29 years. I was sent to the top Dermatologist at NIH back in the 80’s and they never even mentioned it or thought about it even when I mentioned I was told I had Celiac Sprue (what it was called back then). Constant break outs that itched and oozed, on my head, face, back of arms, buttocks, private parts, ankles, abdomen, thighs in my mouth and nose. The face, scalp, nose and mouth were the worst. Steroids and steroid creams did nothing for it. Now fast forward 29 years, it only comes back if I get glutened..which does not happen often. If I get exposed to gluten the rash takes about 9 months to clear up…and it clears up only if I don’t get glutened again. The rash can now be biopsied for DH, which is just the skin manifestation of Celiac Disease. About 25% of Celiacs have DH, however they don’t always test positive on blood test or intestinal biopsy. Our skin is the most similar organ to the inside of our intestines, so it can show on the skin! You must see a dermatologist for a punch biopsy of affected skin right next to your DH breakout. See a dermatologist who has done this before. Ask your gastroenterologist for a referral to someone who does the biopsy correctly. FYI: Dr Lefler at Beth Israel Deaconnes Med Ctr in Boston knows a lot about DH!
Like you, I went from derm to derm to derm with “eczema”, and never any relief. My whole life – infancy, and on. It’s coming up on 8 years now that a dermatologic nurse practitioner took a look and said, that’s not eczema. She did a skin biopsy, and told me to see my PCM for a celiac panel. Blood work came back negative, skin biopsy came back positive. Intestinal biopsy next …. came back positive. That NP saved my life.
But, I still had a rash, although a different rash. It kept happening, and I realized not too long ago that it’s probably been there all along, just “covered” by the DH. The only thing that helps is short-dose oral steroids. Back to several doctors, and I’ve started the evaluation for dermatomyositis.
Celiac disease is insidious. My teeth are wrecked, my skin’s a mess, my joints and muscles are shot, and I found out last year I have some eye disorders that may or may not be related. But, I would never go back to the days before I was diagnosed.
Very true. People with Celiac disease have bad teeth, and that is why I don’t like hard nuts or food. I like softer texture and chewy food. However, the people who made gluten food bars or crackers have no idea. They made it crunchy and not friendly for people like us.
Like you I had the rash. If you take over the counter medications or prescription drugs you need to check if they contain gluten. Also nuts, dried cranberries and seeds are dusted with flour to anti-cake them so they don’t stick together when packaged. I joined the celiac association. $65 per yr and worth every penny. Very good information re: restaurants in your area that are safe to eat at.
FYI. I was out for dinner this week and the restaurant served me GF bread. I didn’t think about the seeds in it and sure enough sick all the next day.
What was your eye disorder? I have one eye “flutters” horizontally when I use my peripheral vision and nobody can figure it out.
The eye disorders – the genetic one that could be related is Epithelial Basement Cell Dystrophy (also called Map Dot Fingerprint Dystrophy), and is a corneal disorder. I also have Keratoconus, and they are trying to figure out if it’s primary or secondary to chronic allergic conjunctivitis.
Have they considered muscle or nerve problems for your eye?
This type of rash is the worst! I have also had stinging nettle and its definitely not the same but both painful.
I have been using diluted tea tree oil mixed with coconut oil in a bath to soothe the itchy rash from being celiac. Honestly, it works wonders for me.
I’ve even made an oil to apply to my skin during the day. My skin is clearing up and feels fantastic.
Hello, i have just noticed a rash on my right knee that is burning and extremly itch . Did some research on line and discovered it is DH..for the last 5yrs i have been struggling with bloatedness off and on, but then continually in the last 6 months, (i only weigh 95lbs.but jumped to 102lbs) within that time frame. also stomach pains and a burning sensation in my chest after eating certain foods.WHEAT. even the simple things like soy sauce and and my body was saying not thats not for you. I would ask my husband(only in the last week)if added any wheat or anything to dinner because i feel it immediately. So i spoke to a friend who said the same thing happened to husband 20yrs. ago (he has CD)and that is definitely it! Don’t i know it! Started GF 5.13.18 and i am ready to move forward to improve my health. Woo hoo.Thank you for all the info. and support!
It’s 2018, I am new to this site, but DH is an important subject to me so thought I would share my 2017 day 25 of Celiac Awareness story. Sorry it’s so long, but I wanted to tell the WHOLE story.
Today I’m going to tell you about Dermatitis Herpetiformis, pronounced her-PET- E -formis. Also known in my household as “THE! RASH! FROM! HELL!”. From here on, I will refer to it as DH. (only because DH is shorter than T!R!F!H!)
My personal story about DH is extremely frustrating, emotional, and honestly I will probably cry as I write this. And it may get a bit graphic. I also might capitalize a lot because I WILL be yelling! Just want to say again, I am sharing Celiac info SOLELY to raise awareness in hopes of helping others. Not in anyway do I want you to feel bad for me. I have felt bad enough on my own, thank you, and dealt with it. Now I’m moving in a direction to encourage everyone to find out if they too have celiac so they can avoid much of what I went thru and still may go thru in my future. I appreciate all of you who have been there for me thru this journey. The support from my friends and family is amazing!
Okay, let’s talk DH. Dermatitis Herpetiformis is the skin manifestation of Celiac Disease and caused by the gluten protein. Reminder from a previous post, if we have celiac, we have a leaky gut which leads to leaky skin etc etc. If you have DH, you DEFINITELY have Celiac. If you have Celiac, you won’t necessary get DH.
I need to back up a few years to tell this story correctly. In September 2010 I was diagnosed with Celiac via a Celiac Panel followed by an Endoscopy. I was told to be gluten free for the rest of my life. That’s it! Sounds easy, right? I was so naive. When the gastro doc told me I had Celiac, I pictured it spelled ‘Sillyact’. True story. I had never heard that word in my life. But off I went to eat gluten free. I thought that meant no more bread, pasta, cake etc. I had very little, if any knowledge that gluten was hidden in just about everything!! I had very limited understanding of what cross contact meant. (sometimes called cross contamination) About 3 months after dx, my toes broke out in hives that itched so bad I was unable to sleep or wear shoes. I literally ripped my skin open over and over just from digging at my toes with my fingernails. Eventually a toe became infected. It was late afternoon on New Years eve, so off to Immediate Care I went. The doctor insisted I had athlete’s foot. He and I went round and round (nicely), but of course he won and I left with a prescription for antibiotics and a topical cream that would help athletes foot. I knew full well that I did not have athletes foot. Of course neither rx helped. In the meantime the intense itch was making me crazy! So made an appt with my dermatologist, who called it something else entirely and gave me a different topical rx. That didn’t work either, but over time, the hives and itching went away.
Fast forward to July 2014. I notice hive like bumps on one wrist. They itch. My palms itch. (They had itched off and on for years but I didn’t know it was DH ) Soon the left side of my scalp had hives and began to itch. Bad! Now it’s bleeding all the time. Soon this ‘itch’ spreads to other places on my body. My torso is covered, both front and back. The itch is intense! It is deep! It’s constant! Now it’s on the front of one leg. Oh great, it’s moved to my arm. I instinctively know it is coming from within. Over the next 20 months, I see 3 doctors, each of them more than once. I tell all of them I have Celiac. I tell them I know it’s got to be coming from my insides somehow, that I’m sure it isn’t topical. One doc is sure it is Candida, so I go on the candida diet and take the nasty drugs, loose so much hair I get bald spots, but still itch like mad. My (now x) dermatologist keeps saying it’s some sort of dermatitis and gives me even more TOPICAL rx’s. My PCP is the only one that very humbly says “I have no idea what this is”. (By the way, I’ll take honesty over an incorrect dx any day!!) Back at the Candida doc, his plan isn’t working, so he orders a $1200 allergy/sensitivity test. Over the 20 months, I spent $3000 beyond what my insurance paid, LEARNED ZERO and STILL ITCH!! By now my body was all but covered, I didn’t dare go out in the heat, sweat would make it even worse. (as if it could be worse) I hardly slept, but when I did, I would still scratch. Each morning I looked in the mirror, I’d see how black and blue and bruised I was from my deep, hard scratching. There was blood all over me, all over my sheets…it was not a pretty picture. It itched all day too, so many of my clothes were ruined. I had back scratcher’s stashed everywhere, even in my car. If I began to itch, I had to scratch. NOW!
Fast forward again to March of 2016. It’s 2:00 a.m. I can’t sleep. (imagine that) Once again I begin to research “rashes” and “hives”. By now I felt like I knew everything about any rash that was out there, but that night, for some reason I added the word CELIAC to my search. Thank! You! Jesus!! Oh my gosh, right there in front of me was the reason why I was itching! It was worded exactly like I would describe it! It had a name! Of course I’m crying and doing a happy dance, which woke Aaron. Or maybe it was me yelling “I know what’s wrong with me!” (I really wanted to put that in caps btw)
Looking back, I was so celiac stupid and frankly, un-educated. I had not taken seriously the idea of cross contact, did not believe it was such a big deal. Since dx, I had been eating gluten-free, or so I thought, but without the understanding that most of what I ate likely had hidden gluten. The ONLY way to stop DH is to be 100% gluten free, as in ZERO gluten. Remember, it’s the gluten protein that did this! Doctors don’t explain this. From then on, our home became a safe gluten free place. It took 8 months before my DH was all but gone. I was lucky, research says is can take up to two years of being 100% gluten free to heal. There is a med out there called Dapsone. It will help with the itch, but it has very nasty side effects. My personal choice was to not take it. I was able to refuse it because I now had hope. I knew what the cause was. I could see the end of this intense day and night itch.
Recently I was doing some research on DH. Apparently before it was understood that DH is caused by the gluten protein, it was called the Suicide Rash. Many that have had this rash sadly committed suicide. And because it still isn’t getting diagnosed very often, some still do. When I read that, I wept! I can not even begin to explain how DH tormented me. I’ve been shaking the whole time I’ve been writing this post, because I am re living my horror. I never thought of killing myself, but both Aaron and I remember how I constantly said things like “I’m going to loose my mind!” or “I can not take this anymore!” (actually it was more screaming than saying)
Did you know most every rash or hives begin in the gut? Even acne. The exceptions to that would be something like poison oak, or something that breaks you out such as handling tomatoes, or a cat scratch or bug bites for example. Rashes are thought to be topical because they’re on our skin, but in reality it’s probably a symptom of something going on in our gut. A rash, in its self, is NOT a diagnosis, even if it has a name. When you see your doctor, let this be your motto: “Treat the cause, not the symptom”. If only I knew then what I know now…. Whoever came up with “go with your gut’ was very wise.
Many get DH prior to knowing they have Celiac. Some never find out what it is because sadly most doctors treat symptoms, not the cause. A knowledgeable dermatologist can take a biopsy of the DH. If it comes back positive, that IS your Celiac Diagnoses. No blood test or endoscopy needed. Just a side note, many that have DH won’t have any other obvious symptom of Celiac. A large number of Celiac’s that get glutened will be sick for hours, even days with diarrhea and/or vomiting, migraines etc. I don’t get real sick like that, but I get DH. That’s my sign. I know I’ve been glutened if I begin to scratch. Plus I know that dang speck of gluten is doing damage where I can’t see. Being 100% gluten free is of utmost importance if we have celiac, whether or not we have symptoms. Our organs truly can’t afford more damage.
Most websites will say DH is symmetrical, if on one leg, it will be on the other. That was not always true for me. Latest info is they don’t think it’s true for most. DH does not look the same on every person so don’t be confused by the images. It can be in clusters, or a random hive here and there, or the combination of, on different parts of your body. It can come and go.
There’s more bad news about DH. Those of us who have it, we are at an increased risk of malignant lymphoma and blood cancers. People! This is why we need to be screened early in life. If I had known years ago, understood that I had to be 100% gluten free and actually ate that way, my DH would’ve never had a chance to get started.
Please. Help me spread Celiac Awareness!
“Gluten is a family of proteins found in grains like wheat, rye, spelt and barley. Of the gluten-containing grains, wheat is by far the most commonly consumed. The two main proteins in gluten are glutenin and gliadin. Gliadin is responsible for most of the negative health effects”
i only want to add that finally being diagnosed with dh was a welcome relief.
i was affected with blisters and then sores on scalp,fingers,wrists.elbows,knees,and buttocks.in my case it was symetrical.i spent 24 months trying everything o figure it out.i even had the test after the first 24 months and it came back inconclusive.so 12 months later and every cream or remedy i could try, i did try and to no avail.
i finally went to a dermatologist that performed the celiac test direct immunofluorescence test (see below)
in closing let me add that i’m 56 years old,have always been healthy with very little sickness. but since diagnosis i look back and it does explain, bloating,itching,gas,irritability,and why i never cared for maccaroni and cheese,or pasta at all, and ate very few cakes and cookies, while my brothers and sisters coudn’t seem to get enough.
i am on dapsone now which is an antbacterial drug used for malaria and leprosy since the late 1800’s, early 1900’s.
it stopped the rash IMMEDIATELY.i am also on a gluten free diet.
interestingly, if i get glutened,about 24 hours later i’ll get the feeling oas if a blister or two or three are coming, but i suppose the dapsone keeps it at bay.
i also wear short sleeved shirts again. thank goodness.
one final note, it is my understanding that it is a “super wheat” that was introduced in the 60’s that is causing these problems for folks like me.that normal wheat would not be a problem for the populace but this genetically altered wheat packs significantly more punch.
Celiac IgA Panel
Ordering Recommendation
•This is an autoantibody panel for initial diagnostic assessment and disease monitoring in celiac disease that may be associated with skin disease.
• Use for disease monitoring with semiquantitative antibody level assessments and tracking.
•To test for dermatitis herpetiformis associated with celiac disease, order the Dermatitis Herpetiformis IgA Panel instead with perilesional skin biopsy for direct immunofluorescence.
Components
IgA endomysial (EMA) antibodies by indirect immunofluorescence
IgA tissue transglutaminase (transglutaminase type 2, TG2) antibody level by ELISA
Methodology
Indirect immunofluorescence/enzyme-linked immunosorbent assay (ELISA)
ronnie
Hello… my name is Ginny… I too have developed some sort of rash/hives… it came all of a sudden… I itch from sun up to sundown… my skin is so tender it hurts to sit down. The rash is mostly on my face, neck , both arms (upper and lower), lower legs, and tops of my feet… it was so bad about a week ago, I had the hives on the palms of my hands! I’ve had this going on a month with very little relief from itching and burning… my skin is very scaly and I’ve scratched so much I have open sores and severe swelling.. my skin just bleeds with the smallest bump! I’ve been to the doctors and dermatologist several times… oh just keep taking the prednisone and visteral and everything should clear up soon are the answers I keep getting!!! I’ve been on prednisone now for over a year due to pyoderma gangrenosum on my lower extremities… I’ve developed the “moon face” and gaid over 50 pounds… if anyone has any advice on what else I can do to resolve this skin problem, I’d greatly appreciate it!!!!
Hey focace (-
you can read my 1st post above to Jana [47.1.1.1] to get a little idea about what I shared there.
Going GF [Gluten Free] is a lifestyle change when it comes to food or any other external products you use in your daily life… there’s no shortcut, stay with it for life if that’s really what is causing you all your troubles.
Spend a couple of hours reading every other person’s experience & see what works for you.
I have not taken any types of drugs (medicine) in over 25 yrs… the less, the better!
Cheers!!
I am 45 years old Male and about 4 years ago i got blisters all over my neck, back of the head, elbows, knees, buttocks. EVERYWHERE!!!! I started my gluten free life style but have screwed up sometimes when I just want to EAT THAT! I have never been 100% without DH. No matter how long I go without eating Gluten. Every now and then it just comes back and makes me want to cut my skin off!!! I am not surw why it comes back after a long time without eating gluten, but it does. Can anyone with DH drink any kind of soda pop? I can not as soon as I drink Coke or Pepsi I will be itching with in an hour or sooner. I really just wish someone could find a cure to stop the itching besides coating my body in steriods. UGH!
I do the same thing for my DH. I get in the shower change the pray to a stream, then turn it to very very hot. The relief I get from the itching from the hot water is so amazing. The problem is I am sure the hot water is not good for the skin and it only last about 6 hours then the itching comes back.
Hi. I’m new to the Gluten Dude blog, but I’ve had my DH and celiac diagnosis since 2009. Took years for it to clear up while going strictly gluten free, even the dog had to go gluten free. I was on dapsone for years to try to help clear it up and stop the itch. After 8 years, I was finally blister free. Still can get cross contaminated but I get the digestive issues first and brain fog within 20 mins of being contaminated. Then a day later I get blisters, but I usually know where it’s coming from. However, I’ve recently been getting the same DH rashes/blisters from just skin contact with gluten containing items (new detergents, soaps, or just wiping crumbs off of the counter in the breakroom at work with a wet wipe. Does anyone else also get that instant contact reaction to gluten? I hate having to ask others to clean up someone else’s mess because I can’t do it or my hands will break out in blisters.
Thank goodness for this blog and comments!
I was diagnosed with Hashimoto’s Thyroiditis 3 years ago after I had my first child in 2015. No itchiness until 2018, it started with intense itching but no rash and it had remained that way until 2020. This summer has been insufferable! I can’t handle the itching, the welts and the hyperpigmentation! I’m so depressed and miserable that at times I think I’m dieing, just slowly rotting away from the inside-out. No one can seem to figure out what is going on. The descriptions in this blog and the comments have me convinced that DH is what I’m suffering from. I see my Dr. in a week and a half and will be asking her about DH being a possibility.
Thanks again to everyone here!