Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter
0
dani nero

DH Photo Bank

Rate this topic

Recommended Posts

Continuing the progression of the lesions. These photos were taken today. They were much angrier looking a few days ago --- lobster red, but I could not bear to take photos of them at that point. They have been terribly painful & remain so. I have found the best thing at this point is Vaseline. And ice packs. But one can not spend all day laying on ones back with ice packs on. Life goes on & food needs to be prepared, groceries need to be gotten etc.....

I would add that these photos disprove those texts which say the lesions last a couple/few days. WRONG. Sometimes they do --- maybe in the beginning or very mild flares but an individual lesion can last for a full month or more. Also those texts that state that dh has to be blisters. WRONG. Some of what you see began as blisters, some did not --- those were the "bite" kind --- but undoubtedly ALL dh.

This first one is what the flesh eater has turned into.

8434301996_77bc217692.jpg

This is what my front looks like now.

8433219679_38c3911b4f.jpg

This is the underside of my breast.

8434308572_53555972e5.jpg


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

Share this post


Link to post
Share on other sites

Oh man!! I look at these pictures and can't begin to imagine what that feels like :unsure: I will never complain about my psoriasis again, I promise.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

Share this post


Link to post
Share on other sites

Squirmy . . . I can tell they are healing. Pray it continues to heal and quickly! I understand about the allergy to penicillin and needing a fall back drug, for an emergency. My Gpa, Dad, siblings and now my nephew is allergic to penicillin. My Gpa was given it, in error while admitted to hospital for pneumonia and died in 1963. :(

Hang in there!


Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~

Share this post


Link to post
Share on other sites

Wow, finally I find someone who has it as bad as I do/did. I am/was covered from head to toe. So bad I kept myself covered unless I was at home and even then my daughter couldn't stand to see it and avoided me a lot of the time. It is now going away. I had a dermatologist who was very helpful with the itching part by putting me on Gabbapentin which lowered the nerves reaction to wanting to itch. It worked for me at least.

Share this post


Link to post
Share on other sites

I have a patch of my finger that looks pretty much exactly like yours dani, except even smaller. It came acouple weeks ago, got super itchy, then went away and is coming back again. I am not diagnosed with dh, but I haven't had it checked out either. It's not bothering me much.

My sister, whose bloodwork is negative for celiac disease, has had eczema as long as I can remember, and I think my finger looks very much like her rashes. Of course this isn't definitive, I still think my sister's a celiac.

I also get noticeable blisters (hardly noticeable on my fingers but they're definitely there) on my forearms. That's been around for a couple of years, and they itch pretty bad, but I've never had them clump.

Now I do have dandruff that itches pretty badly and it has gotten worse after getting a bit better. I've had that for decades though, never really went to someone to talk about it or look into it. And I did get a rash on the back of my neck after eating nuts that I'm guessing had cc. (I also had an immediate burning reaction in my mouth and then nerve pain in my teeth/gums for prolly a week after.) But the rash on my neck honestly wasn't that itchy even though it was by far the largest patch of affected skin I've had. It did make its way to the back of my ears and they itched, and moved up a bit into my scalp which also itched for a couple weeks, but when that happened the skin just looked dry, no blisters anymore.

"Skin was very prickly and burned, did not like having anything touch it"

This is familiar to me. I randomly get patches of skin that will get very sensitive when anything touches it, and the skin's response to being touched just didn't feel normal aside from the burny, uncomfortableness. Of course I've never had my entire body feel like that, and no rash has ever happened afterwards. But since my finger has decided to break out again, when I touch the skin it feels like there's a coating on it, something that makes the sensation of touch on it muffled. But I never had the sensitivity that I've gotten before. I figured since I have peripheral neuropathy that my patches of skin were a nerve issue of celiac disease or just something else entirely, not a skin issue. Perhaps there is some overlap here that doctors are missing, skin has neuronal receptors.

I would not be very happy with a diagnosis of the eczema of unknown cause. Like getting diagnosed with IBS. It's only useful if they figure out what causes it or gets rid of it.

I feel so bad for all of you who have such bad rashes!


diagnosed Jan 2012, bloodwork only

June 2012 positive visual of celiac disease from gastroscopy

Share this post


Link to post
Share on other sites

I thought that a thread containing a collection of the different shapes and forms of DH could be helpful to people looking for something to compare their own rashes with. So go ahead and post your rashes here to help others find a point of reference. Please add associated symptoms and a short history.

I am however doubtful of this idea being a good one because some people might add photos that are not related and confuse people who are new to all this. I hope it will be ok and if it's not then it's ok to delete this thread and I apologize in advance ;-)

Since I haven't seen a rash that is milder than mine I think that it's actually a proper coincidence that mine is the first one :-)

These images were taken when the rash was in it's mildest form. It has sadly developed since these photos were taking, and gets pink swollen bumpy areas under the blisters. It is also starting to spread to the next finger and on the webbing between my fingers.

The rash used wake me up at night with a blistery, throbbing, itching, and burning finger when I used to consume gluten. Now it mostly burns whenever it shows up with very mild itching. The water in the blisters is clear.

http://rainytown.se/images/external/20120524_065253.jpg

http://rainytown.se/images/external/20120524_065311.jpg

http://rainytown.se/images/external/20120524_065505.jpg

Important: Please note that I'm self-diagnosed, meaning this rash is based on my own speculations based on my symptoms all put together.

That is NOT DH.

Share this post


Link to post
Share on other sites

That is NOT DH.

And that is NOT HELPFUL. Would you be so kind as to explain your reasoning.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

Share this post


Link to post
Share on other sites

That is NOT DH.

 

It looks quite mild, but it certainly could be DH.  I get blisters and red spots on my fingers all the time.  The blisters are sometimes very small, just pore sized.  Stingy, burny, itchy and blisters sounds a whole lot like DH to me.

Share this post


Link to post
Share on other sites

My finger looks almost identical to the OP Carybear. The rash on my finger has since improved and gotten worse a few times, and the blisters have gotten bigger, and the blisters look like this when a tad larger.

The dry, peeling skin is what comes afterwards, and yes, that's what's most prominent in the photos daninero posted, and I agree, that doesn't look like DH to me either.


diagnosed Jan 2012, bloodwork only

June 2012 positive visual of celiac disease from gastroscopy

Share this post


Link to post
Share on other sites

Hi

I have what I call 'classic DH' with lesions like Sqitch (sorry about that abbreviation :D) on scalp and just occasional on shoulder blades and buttocks. (Used to have it very badly on all three of those places) and have scarring to this day on back and buttocks. Astonishingly symmetrical! Lesions on scalp vary in severity but never gone and worse for iodine and thyroid meds. 

Anyway - dani nero's finger pics got me wondering because I get that and have had it on underside of forearms. Extremely itchy and I have always assumed it was Contact Eczema that arrived out of the blue at intervals. Now I'm wondering if it's a variation of DH!!

Share this post


Link to post
Share on other sites

That is NOT DH.

 

Oh my . . . Carybear, you do not have DH?  I would like to know how you diagnosed by the picture too.  Just curious.   :rolleyes:

 

I have been diagnosed with DH with 2 doctors in agreement and the rash on my hands looked exactly like 'Dani' presentation.  The blisters on my hands were extremely small, fluid came out after scratching and they eventually had the peeling dry skin.  The sting, itch and burning was intense!  I don't have a photo of my hands but wish I did so I could post.  BTW, I don't think any of us can diagnose anyone. . . just able to offer ideas and such.

 

To anyone interested. . . my skin was almost healed after being on Dapsone and I was so happy.  I decided to try to stop the Dapsone to see if I could just depend on the gluten-free diet.  After 2 weeks . . . I found out just how much the medication helps.  I am now  back on it but suffering with a renewed breakout on my stomach, lower back and buttocks.  Actually the breakout is in the same places that had been healing.   :(


Misdiagnosed DH symptoms for 30 years in the form of blisters on shoulders, scalp, sole of foot and lower back.
Type II Diabetes 1995  /   Fatty liver biopsy 2001  ~ Diagnosed with NH Lymphoma in 2007 metastasized to bones & Stage IV by 2008 Chemotherapy in 2008 ~ Breakout of rash from scalp to sole of feet. February 28, 2012 until present
Iron deficiency anemia - July of 2012  /  
Osteoarthritis. September 2012  2012 Rash was diagnosed as Eczema, Grover's Disease, Folliculitis per biopsies of the lesions. September 2012   Started Dapsone and Gluten-Free diet on October 20, 2012 ~ Diag DH 2012.  Not taking Dapsone due to sulfa reaction.  Biopsy in July 2013 indicates Lupus but my doctors do not agree on cause of rash for various reasons.  

 

~Lyn~

Share this post


Link to post
Share on other sites

Hi

The only time mine vanished (to my surprise) was when I had a course of strong antibiotics and steroids to treat a bad chest infection. It came straight back afterwards (this was over 20 years ago). 

It was somewhat helped by a long course of oxytetracycline antibiotics (sp?) prescribed for it by doc who said it was infected skin (?????????). Came straight back after and a second course had negligible effect. (Again, this is years ago)!

Share this post


Link to post
Share on other sites

that's what mine looks like. I had one on my bottom and that's what was biopsied last week. results aren't back yet but I've been gluten free since July so it could be negative. My derm said visually it does look like DH. I also had a cluster on my thigh and now I'm left with the marks, taking forever to heal.


Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

Share this post


Link to post
Share on other sites

Ok, I'll add mine:

This first one is February 2013, right after my first biopsy:

P1130004_zpsc2d1f767.jpg

This is late March 2013:

Photoon3-28-13at1102AM_zpsa1ba4d32.jpg

And this is what it turned into by Summer 2013:

Photoon8-20-13at122PM_zps88304470.jpg

It's alarmingly symmetrical, with the right side being somewhat more impacted:

Photoon8-20-13at121PM_zps7511c9f2.jpg


Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.

Share this post


Link to post
Share on other sites

oh gosh abby that looks painful. mine is only a few spots here and there.


Lori age 40

 

GERD diagnosed Feb 2012

acute adult onset asthma diagnosed April 2012

celiac diagnosis July 2013

osteopenia Sept 2013

Dysautonomia: POTS (autonomic nervous system dysfunction)

DQ2 Gene

Share this post


Link to post
Share on other sites

oh gosh abby that looks painful. mine is only a few spots here and there.

It's pure misery. :(

For three years, my rash was just a few spots (like in the first picture). Then it just exploded this year and is taking it's sweet time calming down.


Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.

Share this post


Link to post
Share on other sites

It's pure misery. :(

For three years, my rash was just a few spots (like in the first picture). Then it just exploded this year and is taking it's sweet time calming down.

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

Share this post


Link to post
Share on other sites

that's what mine looks like. I had one on my bottom and that's what was biopsied last week. results aren't back yet but I've been gluten free since July so it could be negative. My derm said visually it does look like DH. I also had a cluster on my thigh and now I'm left with the marks, taking forever to heal.

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

Share this post


Link to post
Share on other sites

Abbster,

 

Just know that we are all here to help you get thru this !!!  I hope you are able to see some improvement as quickly as possible.  I see more baths and foot rubs in your future :D

 

All my best,

 

Colleen


HAVE A SUPER SHINY DAY

 

LTES gem 2014


*Multiple AI Diseases

*General Insanity


"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

smiley-face-making-cocktail.gif

Share this post


Link to post
Share on other sites

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


HAVE A SUPER SHINY DAY

 

LTES gem 2014


*Multiple AI Diseases

*General Insanity


"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

smiley-face-making-cocktail.gif

Share this post


Link to post
Share on other sites

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.


Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.

Share this post


Link to post
Share on other sites

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...)


Self Diagnosed with DH in June 2013

MD and ND confirmed shortly thereafter

Gluten free June 1, 2013

Low Iodine July 15, 2013 - (waiting for the rash to clear...)

Other symptoms: IBS-D gone, skin on face much clearer, anxiety gone, periods regulating and less painful, and oh! this one is new: I have not had a UTI since going gluten-free (used to get them several times a year)

Currently training to become a Nutritional Therapy Practitioner. I want to heal as many guts as I can!

 

Love Heals.

Share this post


Link to post
Share on other sites

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


HAVE A SUPER SHINY DAY

 

LTES gem 2014


*Multiple AI Diseases

*General Insanity


"We cautiously travel through life to arrive safely at our death" - J. R. C. , my Son.

 

Are We There Yet? and Dad says...All you have to do it ride it out.

 

Comments/views/opinions expressed on the site are my own and are not representative of Forum Admin/Owner

Celiac.com - Celiac Disease Board Moderator

 

smiley-face-making-cocktail.gif

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Restore formatting

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

0


  • Celiac.com Sponsors (A19):


  • Member Statistics

    • Total Members
      91,981
    • Most Online
      6,255

    Newest Member
    MeganFletcher2019
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      115,602
    • Total Posts
      969,341

  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)


  • Celiac.com Sponsor (A22):


  • Blog Entries