The Dh Rash

[Glamour]

Does your rash go from flat and dry, to weeping, itching, hot and raised, several times during the course of one 24 hour period? Peeling and crusty, flakey at times. At other time like an ulcer? A spot might be dry with flakey skin but still oozes a clear or pale yellow watery liquid.

Worse at night or upon waking?

So itchy, that it feels like it goes thru skin, muscle and to the bone?

Skin surface is raw and tender, but you have to scratch, pinch anyway?

When you scratch it "hurts so good" almost weirdly orgasmic at times. But when you stop it stings, burns and hurts.

Lumpy when actively itching. Hurts to put pressure on it or sit?

Just when you think it might be healing, flat and dry, it goes crazy and starts weeping? Never really heals, even if you don't touch it for days and keep it moisturised? Not a normal type healing process at all.

When a spot finally "heals" it stays red for months and then turns purple?

[ravenwoodglass]

Yea that sounds like it could be DH. You could see a derm when the rash is active and ask them to speciafically look for DH. They would biopsy an area beside a lesion not the lesion itself to find the antibodies.

[esammarie]

Does your rash go from flat and dry, to weeping, itching, hot and raised, several times during the course of one 24 hour period? Peeling and crusty, flakey at times. At other time like an ulcer? A spot might be dry with flakey skin but still oozes a clear or pale yellow watery liquid.

Worse at night or upon waking?

So itchy, that it feels like it goes thru skin, muscle and to the bone?

Skin surface is raw and tender, but you have to scratch, pinch anyway?

When you scratch it "hurts so good" almost weirdly orgasmic at times. But when you stop it stings, burns and hurts.

Lumpy when actively itching. Hurts to put pressure on it or sit?

Just when you think it might be healing, flat and dry, it goes crazy and starts weeping? Never really heals, even if you don't touch it for days and keep it moisturised? Not a normal type healing process at all.

When a spot finally "heals" it stays red for months and then turns purple?

Yes, that certainly does sound like DH. I have it - confirmed by biopsy of perilesional skin and all positive antibody blood tests plus positive GI biopsy. Definitely do see a dermatologist. That's who diagnosed my rash - I thought I had some allergy but couldn't figure out to what. It was a shock to get the DH diagnosis, but good because it led to the rest of the testing and confirmation of celiac disease. The gluten-free diet has made the rash go away. I also had to get rid of all skin lotions, soaps, and other toiletries that have gluten (and a lot do!) because they really annoyed my skin. Iodine and sulfa drugs also aggravate DH. Please get yourself checked! You don't have to suffer!!!!

[Glamour]

I am on the gluten-free diet - 3 weeks. The derm I saw 2 years ago did do a biopsy, but only the places on neck and scalp, said it was eczema/psoriais. I accepted that. Gave me steroid and topicals which only thinned and damaged my skin and made rash worse. Wanted me to take prednisone, I filled it and never took it after researching it. The biopsy area has now been one of my worst sores.

I have high liver enzymes and anemia. I have to watch out for drugs that compromise this.

I am watching the iodine and now dairy. About to cut out all salt since you don't know if it is iodised in products.

I need to find a good derm that has seen DH before and will recognize it - it is simply amazing that they don't consider DH. Kaiser Permanente was the worst - it is just a mill to collect a fee after a 5 minute visit. I don't have insurance right now. I have just about lost faith in conventional medicine. The internal MD said it was nerves and maybe scabies or dry skin. That RX did not work either.

[ang1e0251]

Sure sounds like my DH. But you forgot one thing; THE PAIN, THE PAIN!

[Glamour]

How could I forget PAIN. It is like sitting on rocks. I am currently sitting on a tempurpedic pillow. Jeans hurt. The outline of the pocket is like sandpaper. Elastic in underwear is unbearable.

pants behind the knees hurts

loose, babysoft cotton clothing is all I can wear, my uniform is a long cotton tea shirt or gown , whe home alone.

[trishydee]

Oh my gosh! That is exactly how I would describe my skin issues! You nailed it! Mine is pretty concentrated on my scalp, but right now I also have some spots on my elbows, arms and face. I haven't been on any meds for DH b/c I've been trying to get pregnant for 7 years. Does anyone know of any "home remedies"? I've been taking benadryl; it makes me sleepy so I stop itching.

-trish

(I was dx'ed w/ Celiac 8 yrs. ago.)

Does your rash go from flat and dry, to weeping, itching, hot and raised, several times during the course of one 24 hour period? Peeling and crusty, flakey at times. At other time like an ulcer? A spot might be dry with flakey skin but still oozes a clear or pale yellow watery liquid.

Worse at night or upon waking?

So itchy, that it feels like it goes thru skin, muscle and to the bone?

Skin surface is raw and tender, but you have to scratch, pinch anyway?

When you scratch it "hurts so good" almost weirdly orgasmic at times. But when you stop it stings, burns and hurts.

Lumpy when actively itching. Hurts to put pressure on it or sit?

Just when you think it might be healing, flat and dry, it goes crazy and starts weeping? Never really heals, even if you don't touch it for days and keep it moisturised? Not a normal type healing process at all.

When a spot finally "heals" it stays red for months and then turns purple?

[Glamour]

I find keep it simple is best. I have purchased everything under the sun. Too many ingredients and I am bound to react to something. I think this disease makes you SUPER DUPER reactive to any kind of chemical.

I like about 1/4 cup of baking soda in a warm bath when it gets crazy. I bought a bath ball to dechlorinate and a shower filter, because of the weird reaction to warm/hot water that never bothered me before.

Sometimes I do a little cider vinegar in the bath water. Or sea salt. Also tea tree.

I am afraid of this getting infected, MRSA . I already think I have a few fungal infections that go along with this.

I use a little coconut oil in the bath, after I soak and absorb water. Lotions tend to burn or make me react. The best one is baby Shikai with Borage, but it has alcohol in it and maybe too much stuff. Lotions also make me sweat and that makes the itch crazy.

Cut back or out on dairy, caffeine (seems to bring on itch reaction)

I triple rinse all of my laundry and sheets.

[ang1e0251]

Are you guys still breaking out after going gluten-free? I took a few weeks to heal but I don't have ongoing breakouts. Are you sure you aren't getting sneaky gluten from somewhere? What do your current bloodwork test show?

[trishydee]

Yes, I'm pretty sure it was from some rogue gluten that I somehow ingested. After a while, I get real lazy about the peanut butter jar, the toaster, the butter dish, etc. But now I'm back to being vigilant and I think I'm ok now. (Although those spots do seem to take forever to heal!)

[Glamour]

I am about 3 weeks into the gluten-free diet. I have not had any official tests. I do think I was being glutened by either Kettle Chips, Margaritaville and Garden Fresh chips (same company manufactures them and they will commit to gluten-free in some foods but not the chips (sea salt could be causing the reaction too if it has iodine)

Something got me yesterday, either Oscar Meyer Turkey(kraft foods and the say no gluten but won't list as such and ingredients lists change with these products over time) or Kettle Chips (Potato)

I have been eating a lot of beans, rice, grits and wonder about these products too.

Could be from the kitchen although I am being very careful and the only user, it may take a while to get this 100% gluten-free

[ChemistMama]

Glamour,

If you've had the DH for awhile before going gluten-free it can take a long time for your body to heal itself, possibly months. I have sores that haven't healed totally for over a year (yes, OW, but they're slowly healing), but I had them for 8 months before diagnosis. I had it on my hands and elbows, and even after 3 months gluten-free they didn't subside that much. The dapsone made most of it go away after 1 week, but it

it had way too many side effects for me (no blood problems, but I got a lot of the other 'minor' side effects). I got a sample of topical dapsone and that seems to help the older sores heal.

Have you tried Sarna Lotion (sensitive) or Dermarest sensitive? They both contain pramoxine, which is a painkiller. It has saved me from insanity several times. Ice packs or cold water compresses seem to work for some too.

Along with iodine (in shellfish, your daily vitamins, seaweed, iodized salt), watch your intake of NSAIDs like ibuprofen and naproxen, they can aggravate DH too. (I've never read that sulfa drugs aggravate DH).

And yes, the scratching is hideous. When I was undiagnosed I'd wake up scratching myself, or cry in bed and not sleep because I was in such burning pain. It was awful.

[Glamour]

Yes marie and Chemist Mama, etc. thanks for the info. I am trying to be patient. I do see some improvement in skin, and mood. I have a little more energy.

I read about meds and iodine and am not taking anything. I have had the rash about 3 years, and it was really bad. I did step up the probiotics dose to twice a day. My digestion is improving slowly.

Sarna aggravates me. Using a tiny bit of coconut oil in bath after soaking is helping. I also put oil of oregano on spots.

My friend has started juicing veggies for me. She was shocked at how my abdomen is going down. She finally told me I looked 7 months pregnant.

[Happy Holly]

Are you guys still breaking out after going gluten-free? I took a few weeks to heal but I don't have ongoing breakouts. Are you sure you aren't getting sneaky gluten from somewhere? What do your current bloodwork test show?

I break out whenever I accidentally eat gluten; however, I also notice that I have problems with specific laundry detergents. When I change detergents, my breakouts get better. A year ago I changed to the Tide Free, but that now has begun to give me problems as well. Now I am using Ecover liquid detergent (don't try the powder -- it was worse than the tide).

Does anyone else have problems with laundry detergents?

[Glamour]

I break out whenever I accidentally eat gluten; however, I also notice that I have problems with specific laundry detergents. When I change detergents, my breakouts get better. A year ago I changed to the Tide Free, but that now has begun to give me problems as well. Now I am using Ecover liquid detergent (don't try the powder -- it was worse than the tide).

Does anyone else have problems with laundry detergents?

I think detergents are a major cause of aggravation. I am about to try baby detergent, like Dreft.

I double and triple rinse almost everything, and may have to step it up to every little thing.

I have also been putting vinegar in the rinse when it seems the detergent is not coming out.

I am trying to use as little soap as possible. Tide is the worst offender. Trying All Free & Clear, Ms. Meyers, Biokleen.

Rash is worse as weather is so cold and using central heat. The chemical burn and pain aspect is what is killing me right now, as well as a few flare ups.

I went out to eat, and tried to be careful, but I think the salad dressing might have gotten me. I was with a group of people, and they look at you like you are crazy when you ask questions. Waitress said she was familiar, and told me what did not have wheat in it. Said dressings were free. Bread and rolls is a big part of this restaurant, so maybe CC in the kitchen. I opted for lettuce wedge as opposed to a pre made salad.

[alaskanstate]

after eating mostly allergy free for several months, i started feeling like i was coming down with a sinus infection or the flu. i never got sick, but i did get some splotches of dermatitis on my face and neck. i think it was from something i ate. i went to the doctor, and they prescribed me a steroid. i didn't want to take it so i visited my estitician friend instead. she gave me some organic unscented shea butter and i picked up some hydrocortisone cream from the drug store. the splotches went away in a few days.

[ShoreGirl]

Does your rash go from flat and dry, to weeping, itching, hot and raised, several times during the course of one 24 hour period? Peeling and crusty, flakey at times. At other time like an ulcer? A spot might be dry with flakey skin but still oozes a clear or pale yellow watery liquid.

Worse at night or upon waking?

So itchy, that it feels like it goes thru skin, muscle and to the bone?

Skin surface is raw and tender, but you have to scratch, pinch anyway?

When you scratch it "hurts so good" almost weirdly orgasmic at times. But when you stop it stings, burns and hurts.

Lumpy when actively itching. Hurts to put pressure on it or sit?

Just when you think it might be healing, flat and dry, it goes crazy and starts weeping? Never really heals, even if you don't touch it for days and keep it moisturised? Not a normal type healing process at all.

When a spot finally "heals" it stays red for months and then turns purple?

[ShoreGirl]

Yes, yes, and YES!!! This rash makes you absolutely nuts!! I have been dx with DH almost a year now, derm asked me right away if I had a gluten allergy and I was like WHAT?? He did a bx of one of the boo boos and sure enough!! The bx site took prob 6 mos to heal. I never had a rash in my life before this and starting at 37?? It starts out on my lower legs/shin, will come up on my shoulder blade, then go to my fingers. Its bizarre. So I stopped gluten and I didnt want to add one more pill to my regimen(dapsone), and realized so many things with my body really werent normal like I thought. It takes MONTHS for these little sores to go away, it morphs when it feels like it. And recently I must have eaten something and after about 3 days-its bad again. Bigger this time. So I wonder if its progressive every time youre exposed. This has been some experience. Still havent learned what to look for in shampoo/shower/skin products yet. I use Aquaphor for a good coat of moisture and it does soothe it. Sometimes need ice packs. This whole thing gets to me sometimes-I like a freak sometimes cause you have to be so picky and people just dont get it. I feel like they think its just for attention. Im hoping Ill be able to wear a dress (without boots) by Friday, somehow I doubt it! Im glad Im not alone, thanks for posting that!!

[ravenwoodglass]

Yes, yes, and YES!!! This rash makes you absolutely nuts!! I have been dx with DH almost a year now, derm asked me right away if I had a gluten allergy and I was like WHAT?? He did a bx of one of the boo boos and sure enough!! The bx site took prob 6 mos to heal. I never had a rash in my life before this and starting at 37?? It starts out on my lower legs/shin, will come up on my shoulder blade, then go to my fingers. Its bizarre. So I stopped gluten and I didnt want to add one more pill to my regimen(dapsone), and realized so many things with my body really werent normal like I thought. It takes MONTHS for these little sores to go away, it morphs when it feels like it. And recently I must have eaten something and after about 3 days-its bad again. Bigger this time. So I wonder if its progressive every time youre exposed. This has been some experience. Still havent learned what to look for in shampoo/shower/skin products yet. I use Aquaphor for a good coat of moisture and it does soothe it. Sometimes need ice packs. This whole thing gets to me sometimes-I like a freak sometimes cause you have to be so picky and people just dont get it. I feel like they think its just for attention. Im hoping Ill be able to wear a dress (without boots) by Friday, somehow I doubt it! Im glad Im not alone, thanks for posting that!!

Do get gluten out of your toiletries. Look for wheat germ oil, VitE can also be a source. Suave, Dove and Garnier will clearly label wheat based ingredients. If you like organics Burts Bees and Giovanni have a lot of safe products. Do check out the products section of the board to see what others use and recommend.

It can take up to 2 years for the antibodies to clear the skin. That does not mean that you will have the rash for up to more years though. What it does mean is that even a little tiny bit of gluten will reactivate those antibodies. It helps to be super super strict for a while. Make sure you have checked all meds and supplements for gluten also, if you haven't already.

My DH, like yours, was extensive. Once I eliminated gluten completely I did see less new outbreaks but it did take some time for the lesions that were there to heal. Over time the outbreaks became less and less severe and within a couple years I would just get a couple small blisters even with a glutening. I hope your starts to resolve soon.

[Terrified Mom]

Try Charlie's Soap for a detergent. Get away from the chemical store bought stuff! I've been using it for several years now because it's better for cloth diaper laundry. I've found that since it rinses clean away I don't have any need for fabric softeners, either, which reduces our chemical load further. It will take several washes before your clothes will soften noticeably, as it will take time to wash the optical brighteners out from your previous detergent. It's coconut derived detergents. 100% biodegradable and hypoallergenic. 1 Tbsp is all you need for a load, though I've found 1/2 Tbsp does the job just as well.

[rdunbar]

I've been gluten-free ( and dairy, ect...) for @ a month, and have had bad Dh on my scalp and face for many years, and it had gotten way way worse over the last year. It seems like the insane itching, and oozing went down after just a week or so of stopping the dairy, and trace gluten in things like xantam gum which slips into a lot of products.I can definatly tell because now i can put my head under the hot shower without absolute excruciating pain now. visably it looks better, but in truth, it still looks terrible; but i know it is getting better.the bumps are not raised as much.

i got the book The Gluten Effect recently which says that with DH the antibodies get deposited between the layers of the skin, so it takes time for them to dissapate.Also it was interesting that some people can get the itchiness for years before a visable rash actually appears. just trying to not get discouraged, after trying a million things in the past (clueless dermotologist, homeopathy, accupuncture, and different topical things, ect...) getting off of the gluten has been the only thing to make an improvement. have to admit i'm starting to feel very excited about the prospect of this going away in time; I was starting to feel like there was something irreversably wrong with me.

hang in there.

[sandiz]

Thank you for describing it, words just wouldn't come to me. Having a bad time with it right now, not sure what to do or what to use. Doctor doesn't know anything about gluten/wheat allergies so I don't get any support. He thinks that since I stopped eating gluten in Jan that I should be fine a long time ago.

[juppygirl]

Mine is also driving me potty at the mo. 8 weeks ago I had a major reaction mostly all over my body where I only itched with no blisters, then if i scratched the itching i came up in wheals and it drove me mental - I had steroids and took 2 weeks to recover. Ii doesnt resemble the original DH I was diagnosed with. I was glutened at my Mums on Sunday and the same reaction has started again yesterday I have socks on my hands to stop scracthing and am really fed up. Anyone else have this happen?

[Antonette]

On 11/3/2009 at 8:39 PM, Glamour said:

Does your rash go from flat and dry, to weeping, itching, hot and raised, several times during the course of one 24 hour period? Peeling and crusty, flakey at times. At other time like an ulcer? A spot might be dry with flakey skin but still oozes a clear or pale yellow watery liquid.

 

Worse at night or upon waking?

 

So itchy, that it feels like it goes thru skin, muscle and to the bone?

 

 

Skin surface is raw and tender, but you have to scratch, pinch anyway?

 

 

When you scratch it "hurts so good" almost weirdly orgasmic at times. But when you stop it stings, burns and hurts.

 

 

Lumpy when actively itching. Hurts to put pressure on it or sit?

 

Just when you think it might be healing, flat and dry, it goes crazy and starts weeping? Never really heals, even if you don't touch it for days and keep it moisturised? Not a normal type healing process at all.

 

When a spot finally "heals" it stays red for months and then turns purple?

That's what I have right now!!! I can relate to every single word you said. How are you doing? 

[squirmingitch]

9 hours ago, Antonette said:

That's what I have right now!!! I can relate to every single word you said. How are you doing? 

Antonette I doubt you will get a response as this thread is from 2009. I haven't seen any of these posters around since I've been here (since late 2010) with the exception of ravenwoodglass.