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Hey Abbs,

 

I was researching DH this morning and I came across a guy named Jean-Paul Marat.  He lived in the late 1790's.  Anyway, It was the opinion, after his death, that he was suffering with a horrid case of DH.  He was a Doctor himself. Of course little was known about Celiac/DH so diet change was never a concern.  I was reading that he spent most of his life in bathtub with soothing herbs and a wrap around his head.  I tried for the life of me to find the herb mixture he used but no luck there but he used a cloth soaked in vinegar around his head to control itching there.  So I was thinking that maybe you might want to trial using a cloth and laying it on one of your areas of DH for itch control.  I don't know how practical that would be for you but I wanted to mention it anyway.

 

Colleen

Yes! This is a well know painting titled "Death of Marat"

300px-Death_of_Marat_by_David.jpg

I was an art major in college and when I came across this reference in my research I might have squealed a little. Very cool.

 

I do take lots of baths when the rash is flared up. A screaming hot bath with Epsom salts followed by ice packs is my go-to bedtime ritual. When I have to be moving about, I have a stretchy strap to hold the ice packs in place. A little ACV dabbed on the rash is nice and cooling too.

 

I should mention that that last photo is the absolute worst of it. It is better than that now, but still worse than the March picture. I feel like I am kind of working my way  out of it backwards - like, it's going out the way it came in. Ha! It just keeps flaring then receding over and over, never completely going away before it starts up again. It's a crazy thing this rash.

 

Thank you for your kind and supportive words Colleen. It means a lot to me.

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Oooo ItchyAbby it really does look very red and angry, no wonder you say its pure misery it must drive you absolutely nuts,

at the moment mine are on the back of my legs and over my derrière too so I can't really photo those, but they are at that sore stage now,

The Gastro Doctor wanted to have a look at my rash,

but when I told him It was covering the back of my legs by my buttocks he chuckled and swiftly changed his mind

I guess some Doctors are still embarrassed about stuff like that , I would have shown it to a medical audience if they would have done the biopsy for me :P

but It just seems so difficult to get biopsied in the UK

I have a patch right on my sacrum and I bargain with it often: "Please, please don't creep down my butt crack, ok?"

 

It's crazy that your doc is uncomfortable with seeing the human body! Isn't that like, his job? I completely lost all modesty this year - i show the rash to everyone! (Ok maybe not the almost-buttcrack area...)

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Abbs...I took a lot of Art History myself.  I saw the painting pic this morning.  I rather like it.  I learn something new everyday !!!  I'm glad it's getting better :D

 

Take Care,

 

Colleen

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What a great dermatologist you have, no one has even suggested a biopsy for me at all ,

I think I may have to pay a private dermatologist to get a biopsy, but I wouldn't know where to start ,

Good luck with your biopsy, hope you get some answers,

Please let us know how you get on

Well as expected biopsy was negative. I've been gluten free since July. But seeing that I already have celiac and the derm and my GI both said it is DH I'm going with that. They both said visually it is DH just can't officially diagnose it as that because of the biopsy. I asked what else it could be and he just said it appears to be the celiac rash

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I have a patch right on my sacrum and I bargain with it often: "Please, please don't creep down my butt crack, ok?"

It's crazy that your doc is uncomfortable with seeing the human body! Isn't that like, his job? I completely lost all modesty this year - i show the rash to everyone! (Ok maybe not the almost-buttcrack area...)

Mine is on the crack. Aaaaannnnndddd that's what got biopsied. Yes I was a bit embarrassed. And not the most comfortable place for a biopsy I might add.

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These are pictures of my 4 year olds blisters 

Do they look like DH?

We have seen many Dermatologists and Allergists who said they don't know what it is but it looks like DH so we had a biopsy which came back inconclusive.

We have been Gluten free for 18 months but the spots keep coming, When she has Dairy or Soy she scratched all night even with Antihistamines.

 

http://www.flickr.com/photos/ethanhobbs/10848312076/

http://www.flickr.com/photos/ethanhobbs/10848415764/

Elbow>

 

I have been reading many posts and it seems the members here know more than the doctors we have been seeing.

 

if anyone can help me identify these spots I would be so grateful and relieved as the past 2 years have been super hard living with the night scratching and bleeding. 

 

worried mom 

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I don't have DH, but the pictures look like it (to me). Actually, what I'm doing here is posting to bring this thread back to the top so that some of our DH victims will see it and respond. I hope you get some answers soon. (((((HUGS)))))) to you and your little one.

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I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!

If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!! :ph34r:  :ph34r:  :ph34r:

 

For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org/pap-fol/lowiodinediet/ for low iodine diet (of course cut the gluten). 

 

The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.

 

Read a whole bunch of threads on here & that will be your best source of info.

NSAID's make the rash flare too.

 

If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.

 

((((((HUGS)))))))

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I'm having major computer problems (repeatedly crashing) & am trying to fix it so I'll have to be brief. IMO that's dh!!!!!

If you had been gluten-free when the biopsy was done then OF COURSE it would come back inconclusive or negative. If the biopsy was taken directly ON a lesion then it was done wrong & OF COURSE it would not be positive for dh. Damn doctors who don't get it!!! :ph34r:  :ph34r:  :ph34r:

 

For most of us, iodine makes the rash go bonkers. It's like throwing lighter fluid on hot coals. The soy most likely has carageenan in it which is insane with iodine & milk has a lot of iodine too. Try a low iodine diet for two weeks. See http://www.thyca.org/pap-fol/lowiodinediet/ for low iodine diet (of course cut the gluten). 

 

The rash can present anytime until all the antibodies are out from the skin. The antibodies get deposited under the skin for those of us with dh. So she can have the rash until they all get gone. Also, you need to be rabid about cross contamination b/c the rash is ultra sensitive to the tiniest amount of gluten.

 

Read a whole bunch of threads on here & that will be your best source of info.

NSAID's make the rash flare too.

 

If I don't crash into oblivion & can get this thing fixed then I'll be back in the next few days.

 

((((((HUGS)))))))

Thank you so much for replying , thats all great information.

We have been Gluten free but I have only recently learnt about Iodine so we are going to try that too.

Reading all the info on here I know now that her biopsy was a joke as they took a sample from a young blister, we were gluten-free....and now she has a scar on her arm for nothing :-(

 

How long do you think it takes the Antibodies to get out of the skin ? 

 

Has anyone tried topical Dapson? is it worth trying on her ? at the moment I'm using a strong steroid cream on the very inflamed spots.

reading the horrible side effects i don't think i will ever put her on the drug but maybe try the topical, is it just as bad ?

 

 

We are also about to receive the results of a stool test and the dr said there is something not right going on there (our appointment is on Tuesday)

 

 

Thank you all again for replying and for the wealth of information you are sharing 

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Ohhhhhh, nooooooo, steriods, topical or oral are no nono !!!!!! Especially the oral!!!!!! They will help a lot but the second the steroids are withdrawn the rash will punish in SPADES!!!!! You don't want to put her through that hell.

This stuff is a b%$@#!!!!

It can take 2 years or more for the antibodies to get out of the skin. We are all individuals & there is truly no set time. I'm sorry. So very sorry to tell you that but .......

I'm coming up on 2 years sooooooo strict gluten-free on Dec. 1st & I'm still having the rash BUT I'm 3000 times better than I was.

Dapsone..... is she allergic to sulfa drugs? Dapsone is in the sulfa class. There are many side effects. Blood monitoring should be done. It can make her anemic. Do your research before you decide to do that. 

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Every dermo we have been to just prescribed Steriods (or eladel, protopic or other crap )each time stronger and stronger ones, and no one knew what is was and one even thinks its papular eczema..... 

I have not given her oral steroids as she is too small for such aggressive drugs which is why I don't think I can give her oral dapsone. which is why i was asking about the topical, if it helps etc ..

 

but for now we are gluten-free, Dairy free, soy free ,Low iodine, and corn and nut free.

 

she was drinking almond milk but i noticed she is better without it  

 

wishing you all good health 

 

thank you again !!!

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I think I've seen 2 postings on here (the dh forum) where ppl used the topical Dapsone (Actone? or something) & if I remember correctly, 1 said it helped & 1 said it didn't. You can give it a go & see.

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I asked my dermatologist about Aczone but since I was allergic to sulfa, said I couldn't tolerate it.

 

From what I read it takes several weeks to ease the rash. .. like 2 - 3 months.  Posting a web site if ok with the moderators?

 

http://www.aczone.com

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This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/images/external/20120622_135205.jpg

 

I don't have any pics but your rash looks exactly like a recurring one I had when I was in high school/college and beyond.  I'm 48 now.  I have been gluten free for 6+ months now and I seem to be getting some skin issues from cross-contamination.  My scalp has become itchy, especially around the hair line and the back of my ears.  Weird.  Also, although it's cleared up now, I had a patch of eczema on my chest that itched like blazes--again, probably due to cc.

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the 3rd photo is pretty much what mine look like. I was calling them hives but I guess not. To me this is as good as a blood test.I

My rash looked exactly the same.  I decided to start eating gluten again after 6 years off and the same rash appeared - after eating gluten for one month.  It is an awful rash.  It takes the strongest topical steroids to get relief.  I will resolve itself after about 8 weeks of not eating gluten.

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Hi. I'm new here to the forum. I can't thank you enough for sharing these pictures of your DH. I have been suffering for 4 yrs (Oct 2010) with this horrible itching and sores. I was told in 2011 that I had the Celiac Gene in my DNA but I didn't have Celiac Disease. They said I had IBS and dry skin instead. This came from the top doctors in the state. I too have had this clear liquid in these itchy sores and they come open on their own. Especially in the shower, I find my skin will just slide off of the sore. Sorry, I know that is extremely gross. I just want to share my story too so that it might help someone else. The dermatologists keep saying it's nerves, then they change their minds that it is an immune problem. I have stumped them is the conclusion after three and half years of treatment, numerous creams and lotions and pills, and biopsy's. After seeing your pictures, I am feeling relieved somewhat. I have been going insane trying to figure out what this is driving me mad for so long. Thank you for sharing. Now, I can stop trying to figure out what it is and go with what I have always thought it was in the first place DH. (I even had a total hysterectomy because they said it was hormones and I was pre-menopausal). I am beginning to realize that I know my body more than any doctor does. I can't expect them to know everything and I have to help myself. Even though the doctors have said that I don't have Celiac Disease, I am going to go gluten free and learn from all of you my fellow forum friends through your posts. I'm glad I found this forum and maybe someday I will share my pictures on here too. My body is horrible with sores and scars to the point I feel like a monster right now. I promise I will take the pictures now and put them away for a time when I feel I can share them on here to help others. Looking forward to reading and sharing, thanks. :)  P.S. It seems that Yeast and Vinegar might be two of my main triggers for a flare up of bumps.

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Big hugs to you sweetie! (((((HUGS)))))) If they did a celiac blood panel on you --- 60% of us with dh test false negative on the blood panel -- that's b/c the antibodies are in the skin (causing our dh - DUH!). And unless the skin biopsies were specifically looking for dh & NOT done right ON TOP OF a lesion then that's why they didn't know what it was. Read, read, read as many of these threads both on the dh forum & the other forums.

 

This will help you get started on being gluten free:

 

Newbie 101 for celiacs
 
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I think I am one of those people squirmingitch describes- I am still a half diagnosed celiac... I have already posted in other threads about my case, please excuse me if I am repeating myself.... After havering been on a gluten challenge for 8 weeks I went for an endoscopy, and the endoscopist saw mild scallopings in my intestine and said I was celiac- however my blood tests and biopsies were negative and another specialist told I wasn't - it turns out I also get skin lesions which look very much like DH- not very badly but I get them on my scull, neck back of legs feet, etc. get also flare up any time I ingest the smallest particle of gluten.... Although I have mentioned this to the doctors, they are not interested....

I have not had a formal diagnosis because I probably would have to do another challenge and I don't feel like doing this because I already had a horrendous reaction with my first one I fear I will die if I do a second one as I have been Gluten free since November.....

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MGR, If I were you, I would call myself celiac & go with the endo report which says you are & screw the specialist who says you aren't. Who is to challenge you especially if you have the endo report? Sounds like you surely have dh & that's throwing everything off as far as blood panel. The damage in our intestines tends to be patchier than celiacs w/o dh so the biopsies can be tricky to get too.

 

As we say....... If it makes you sick, don't eat it.

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MGR, If I were you, I would call myself celiac & go with the endo report which says you are & screw the specialist who says you aren't. Who is to challenge you especially if you have the endo report? Sounds like you surely have dh & that's throwing everything off as far as blood panel. The damage in our intestines tends to be patchier than celiacs w/o dh so the biopsies can be tricky to get too.

 

As we say....... If it makes you sick, don't eat it.

Thanks so much for your reassurance- This is precisely what I am doing, I'm not doing any more challenges just for their sake... I am actually quite tired of the doctors' s lack of imagination and insensitivity ...

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I hear that!

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It's sometimes very hard to tell from photos but I'm saying it's certainly possible. Considering what else you have said, that adds weight toward the side of dh but there are many skin issues & other rashes associated with celiac disease. However, I'm still going to say it seems like you tip the scales on the side of dh.

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This is a more recent picture of how the rash developed since the previous pictures. I now get reddish patches with dry flaky skin that appear before, with, and after the blisters. They don't show very well in the pic however due to being lubricated:

http://rainytown.se/images/external/20120622_135205.jpg

I don't think posts like these are very helpfully coming from people who have not been clinically diagnosed and that write about their undiagnosed rashes as if they were fact. I bet there are many hypochondriacs out there googling symtoms and may come across a photo such as yours and are now 100% sure they are gluten intolerant and thus starts have to go through a WIDE range of tests causing even more angst and anxiety since many here also talk about how hard it is supposed to be to diagnose celiac disease.

 

Your rash looks exactly like Dyshidrotic eczema by the way which tends to develope on that exact place and the cause of that is not gluten. I think that's the problem on boards like this that gluten is the cause of EVERY problem.

 

Just be careful about making conclusions. It does not benefit anyone and may make it harder to take coeliacs seriously.

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    • Hi, I was diagnosed with celiacs after extreme stomach pain, irregular bowel movements and diarrhea. The extreme stomach pain was the main reason I really needed to find out what this was, and finally I had a doctor let me know i probably had Celiacs after a blood test. An endoscopy came back positive for celiacs as well. The extreme burning in my stomach went away within a week, however the pain persisted. Whenever I ate, it became really bad, even though i was extremely careful and made everything from scratch. I even are only fruit for a whole week to make sure I wasn't screwing up. Now its been over a year, and I still have the stomach pain come back after eating almost anything other than juicy fruit like watermelon/melons/grapes.  I got tested for H pylori a year ago, came back negative. Got tested for blood in stool: negative. Went to doctors, they say they have no clue what it is.  I have tested with different things. If I eat very fatty food it hurts a lot more than other food. If I have alcohol, the pain turns into a very dull ache the next day after waking up, and it goes away the day after completely without fail.  If I fast for a day, the pain does not exist. It used to hurt, but in the last few months not anymore. If I dont eat after 6, the pain is completely gone until I eat the next day, and it can be anything, even a no fat food.  If I eat something at it starts hurting more, drinking a lot of water makes it usually go away almost completely. But that uncomfortable feeling is still there, just the major pain goes away. Im going crazy here trying to figure this out. Im 22 years old, I want to enjoy my life. It also seems to go away with exercise.    Any help would be great, thank you!
    • Found this study that looked at Sjogren's syndrome and food sensitivities. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4676776/#!po=28.2609
    • I just checked and it seems that they don't distribute in the US, which is unfortunate (though predictable given the political/economic context of dairy). If you ever come to Canada, you'll have good luck in almost any big box grocery store or convenience store - it's a pretty basic/cheap brand of ice cream. Breyer's has a lot of gluten-free products (in Canada at least). You might try those? I'd be more inclined to trust a larger company with stuff like this - they have the volume to run dedicated gluten-free ice cream/dessert products.
    • It seems as though the more I research, and dedicate myself to becoming gluten free(only 6-8 weeks now), the worse my dh is getting! I know I am probably missing some things, but my diet compared to several weeks ago, is hugely improved! I have learned that humility, and always remaining teachable will be one of my best allies in this battle. Just this morning, after making a dreaded assumtion that what I heard earlier about coffee, was not all inclusive, and that I might very well been poisening myself, with about 40 - 60 ounces of instant coffee every morning! Plus relying on a cheap variety(great value) of hazelnut creamer( just because it said gluten free, not certified! ) So off to the store for a new coffee maker, ground Folgers, and...we'll see! I am sorry to be so lengthy, but if I can save anyone, or only one person from dh of this magnitude, I will be at least a happier camper!  As I stated earlier, it seems my outbreaks have only been getting worse. I (so far) have only experienced dh, but don't know how much more I can tolerate, and find it impossible to believe that I am using "only" and "dermatitis herpediformus" in the same sentence!!! I still have two months to go in a new job, until my insurance kicks in, and in the meantime will have to see a dermatologist, instead of a gastro-intestinal dr. Believe me, I can ill afford to not tell this dr. that I had a preliminary diagnosis via, skin biopsy, that indicated celiac. This is hideous. Please, any ideas???????? Thank you for the posts I've read so far, and hopefully, if anyone is doing the instant coffee thing.... it might be wise to reconsider!   
    • similar issue with stomach ache.  I usually do not eat out much and can have a little sensitivity towards greasy food.  But an hour after eating Lays Kettle Cooked Jalapeno chips about 1/2 bag of the 8oz., I had the worst stomach ache I have ever had in my life.  Extremely painful.  I never get stomach aches.  When food doesn't agree, maybe diarrhea, but not stomach ache.  I am not lactose in tolerate or sensitive to gluten. After the stomach ache started I didn't need to urgently poop.  throwing up seemed like a possibly but never came out naturally and I wasn't about to force it.  There is something in those chips that disrupted my stomach and many other people after doing research.  Possibly inflammation in one of our organs due to one of the ingredients.  It has been 39 hours and my stomach still has a little pain.  I have already reached out to Lays today , probably will not get far with them, but maybe gain more knowledge
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