DH Photo Bank

[answerseeker]

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

[answerseeker]

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.

[hmitchell]

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/

>

 

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 

[bartfull]

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.

[squirmingitch]

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!!!    

 

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)))))))

[hmitchell]

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!!!    

 

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 

[squirmingitch]

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. 

[hmitchell]

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 !!!

[squirmingitch]

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.

[sisterlynr]

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

[RNGayle]

On 7/1/2012 at 11:46 PM, dani nero said:

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:

 

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.

[electrolyteman]

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.

[carebearblues]

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.

[squirmingitch]

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

 

https://www.celiac.com/forums/topic/91878-newbie-info-101/

[MGR]

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.....

[squirmingitch]

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.

[MGR]

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 ...

[squirmingitch]

I hear that!

[Juniper2080]

Here are some photos of my rash..let me know what you all think  https://www.flickr.com/photos/121374728@N03/

[squirmingitch]

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.

[bluewhitesky]

I found some pictures online that so far look closest to what my DS (age 6) has experienced. They might be helpful to someone else, especially a parent. The boy in the pictures is 11 years old.

 

Here is the link:

 

http://www.globalskinatlas.com/imagedetail.cfm?topLevelID=1360&imageID=3208&did=458

[danniee]

On 7/1/2012 at 11:46 PM, dani nero said:

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:

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.

[danniee]

A photo of Dyshidrotic eczema

 

http://nationaleczema.org/wp-content/uploads/2013/10/DermatitisDyshidrotic_3.webp?c82144

[IrishHeart]

A photo of Dyshidrotic eczema

 

http://nationaleczema.org/wp-content/uploads/2013/10/DermatitisDyshidrotic_3.webp?c82144

danniee,

thanks for your input, but I am fairly certain that the person you are replying to (Dani) is no longer participating on the forum. I have not 'seen her" in quite some time. 

Best regards,

IH

[Rita L]

Here are my pics. (And let me also add I haven't been officially diagnosed either so I wasn't sure if I should post or not but since the above two posters are in the same boat I decided to go ahead. I do hope someone with a positive biopsy will post.)

Some of these are rather gross, sorry!!

http://i1172.photobucket.com/albums/r571/janerane/IMG_2637.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2475.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2444.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2441.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2298-1.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2244.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2342.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2601.webp

http://i1172.photobucket.com/albums/r571/janerane/IMG_2435.webp

These were taken at various stages of my rash, I'm not sure what was taken when.

Features:

Started out with one small itch on the back of my neck, took two months for it to go elsewhere and when it did it really did!!

Jumped from neck to both elbows, both hips, back of both knees.

Severe uncontrollable itching, would come in bursts. I would have to scratch and scratch for 15 mintues, then it would get better until the next burst. Would wake in night and scratch.

Burning feeling 1-2 days before breakout.

Skin was very prickly and burned, did not like having anything touch it. Taking a shower was very uncomfortable, did not like water or the washcloth on my skin.

At times it would feel like hives. After scratching an area over and over it would become very inflamed

After a couple weeks of rash on elbows, hips and knees it spread to lower back, slowly going up spine and then spreading outwards. The elbow rash spread up and down my arms about 3 inches both ways. Then the front of thighs broke out, then the front and back of shoulders broke out, then the hip and back rash spread into my stomach. Hundreds of little dots.

Then the whole thing started going away. Total time - 6 months. It is now almost entirely gone, just a bit in one spot.

Edited to add - I've been gluten free for 2+ years and think I had some cc whch caused the rash. I stopped eating the one food I thought may be giving me this. Also started taking loratadine. Rash started to go away. I then reintroduced an oreo a week (as a test to see what would happen and also because I had an appt with dermo and didn't want it to disappear entirely before I met with him). Rash came back a bit and hung around but nowhere near as severe as before. Stopped the oreo after my appt and rash continued to disappear.

Yay! BACK of both knees.... Not celebrating it but that's where my rash is right now Mainly (which I haven't read elsewhere YET)... I have been gluten free for a very long time... 10 years or so due to Celiac. For 2 years I was treating my psoriasis on my heel as a foot fungus. BAD doctor diagnosis because my other doc was on vacation. But I had to take a medrol dose of steroids recently to fight an infection and low and behold my heel cleared up. She said that's not a fungus if it cleared up that fast. She said it was from my Celiac. I was on my 3rd bout of poison ivy this year when I got suspicious about that. She has put me on Dapsone. I have scratched the back of my knee so hard that I now have bruise marks there. Trying not to scratch but I wake myself up with the scratching. Mind you this is all from cross contaimination. I NEVER cheat. It's just not worth it to me. My rash looks the same as yours. My first one so resembled poison ivy but I didn't scratch it and it didn't spread. It was on my chest and horribly red, big blotches with blisters. I also noticed that another spot that I inadvertently shaved (on my leg) came back with the 2nd poison ivy. But thru this whole process it doesn't spread if I scratched. Just scabbed up. My 2nd bout was on my neck and chin. Just severe swellling and itching but no blisters. I started with cortison cream thinking it was poison ivy again. The itching is driving me crazy and I'm wondering how long the Dapsone takes to help with the rash?