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132 replies to this topic

#16 roxieb73

 
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Posted 07 July 2012 - 05:30 PM

Is either DH or Lichen Planus either way Gluten induced rash...

http://i82.photobuck...todrew/DH-1.jpg
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GI confirmed Celiac 08/2012
Double DQ1 subtypes(5,6)
Severe Vit D defiency
Iron Defiency Anemia
Gluten Free and on my way back to good health

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#17 Lfrost

 
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Posted 08 July 2012 - 02:14 AM

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/...0622_135205.jpg


Just a thought. I get a rash similar to this. It seems to come after a 'trigger' of some sort and is mostly worse in warmer months (the sun tends to make it worse). If it only occurring on your hands and feet, or just hands, it could be dyshidrotic eczema. The first time I got it, I was about 21 and it took YEARS to clear up. Here are some links to pics:

http://www.skinsight...cDermatitis.htm

http://dermnetnz.org.../pompholyx.html
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#18 dani nero

 
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Posted 08 July 2012 - 10:33 AM

Just a thought. I get a rash similar to this. It seems to come after a 'trigger' of some sort and is mostly worse in warmer months (the sun tends to make it worse). If it only occurring on your hands and feet, or just hands, it could be dyshidrotic eczema. The first time I got it, I was about 21 and it took YEARS to clear up. Here are some links to pics:

http://www.skinsight...cDermatitis.htm

http://dermnetnz.org.../pompholyx.html


Some of the pics look a lot like mine! I also get them in my scalp though, not my feet.. My blisters don't join either and can surface even in the winter.. It also burns when exposed to sals. It's scary to be confused once again, but thanks for the reference (i'll keep it in mind if my rash develops into something else)
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#19 dani nero

 
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Posted 08 July 2012 - 10:52 AM

Aren't there any diagnosed members who wish to post pictures ;-( I feel that this thread might be causing more speculation than a point of reference.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#20 beachbirdie

 
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Posted 08 July 2012 - 11:11 AM

This is a great thread, and you all have done a great job with your pictures. It is so helpful to compare notes on this, word descriptions just don't convey the idea as well as pictures.

It can be difficult to distinguish between dishydrotic eczema and DH. I had a conversation with a doctor acquaintance about this many months ago, his opinion was to give dapsone. Apparently it is one way to make the distinction between the two because dapsone won't affect dishydrotic eczema but DH supposedly responds to it.

For you who are not "officially" diagnosed, are your rashes improving gluten free? I had some outbreaks of rash on arms and legs (didn't take pics...darn!) that might have been DH, and my husband said I was scratching myself raw in my sleep the itching was so bad. I feel for your misery if you are still struggling with it!
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#21 Lfrost

 
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Posted 08 July 2012 - 11:19 AM

Some of the pics look a lot like mine! I also get them in my scalp though, not my feet.. My blisters don't join either and can surface even in the winter.. It also burns when exposed to sals. It's scary to be confused once again, but thanks for the reference (i'll keep it in mind if my rash develops into something else)


My blisters do not join together either. They just 'erupt' and cause dry, cracked hands and then start to blister again. I also had it through the winter. At one point I had it chronically for about 3 years. Steroid creams were supposed to help, but unfortunately did not for me. Water makes it worse, for example I cannot do dishes without gloves or it will show up. I also got a rash on my scalp at the same time, but it wasn't the same as the blistering hands.

Here is the interesting thing. I haven't had this rash in years (about 5 to be exact). We went gluten free for my son, who is allergic to wheat, but I ate garlic bread the other night. Within hours both of my hands broke out in this blistery rash. I also got cheilitis in the corner of my mouth and a cold sore (that now I am thinking is part of the cheilitis and not a cold sore after all) on my bottom lip. I am guessing that the trigger here had to be the garlic bread! I am making an appointment with an allergist on Monday!
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#22 squirmingitch

 
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Posted 08 July 2012 - 11:30 AM

This is a great thread, and you all have done a great job with your pictures. It is so helpful to compare notes on this, word descriptions just don't convey the idea as well as pictures.

It can be difficult to distinguish between dishydrotic eczema and DH. I had a conversation with a doctor acquaintance about this many months ago, his opinion was to give dapsone. Apparently it is one way to make the distinction between the two because dapsone won't affect dishydrotic eczema but DH supposedly responds to it.

For you who are not "officially" diagnosed, are your rashes improving gluten free? I had some outbreaks of rash on arms and legs (didn't take pics...darn!) that might have been DH, and my husband said I was scratching myself raw in my sleep the itching was so bad. I feel for your misery if you are still struggling with it!


My rash & my husbands are improving gluten free. But one has to remember it's not always an overnight thing with dh as the IgA can take 2 years (some med. papers say up to 10 years) to work it's way out of our skin.
As to the Dapsone; many of us will not take it, it's some scary stuff, & some of us such as myself can't take it as it's in the sulfa class & I'm allergic to sulfa drugs. So we're stuck.

One sure thing though with dh is that if your dh (& most do) reacts to iodine & dh'ers go low iodine & the rash begins to clear up quickly ---- you have your answer. Unless someone can show a study of some other skin rash that responds to iodine withdrawal.



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Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#23 rosetapper23

 
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Posted 08 July 2012 - 12:04 PM

I'd like to upload a photo of my current (and severe) DH outbreak on my face and neck to show what the scarring can look like, but I don't know how to upload photos. How is this done? The photo is on my iPhone and filed in my download file on my computer. Any help?
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#24 beachbirdie

 
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Posted 08 July 2012 - 12:36 PM

My rash & my husbands are improving gluten free. But one has to remember it's not always an overnight thing with dh as the IgA can take 2 years (some med. papers say up to 10 years) to work it's way out of our skin.
As to the Dapsone; many of us will not take it, it's some scary stuff, & some of us such as myself can't take it as it's in the sulfa class & I'm allergic to sulfa drugs. So we're stuck.

One sure thing though with dh is that if your dh (& most do) reacts to iodine & dh'ers go low iodine & the rash begins to clear up quickly ---- you have your answer. Unless someone can show a study of some other skin rash that responds to iodine withdrawal.


Holey moley. I never went to read about the dapsone before, I can see why most wouldn't want to take it. That is some dangerous stuff. I wouldn't take it either.

You've also explained why, though my rash is fading, it is NOT gone. I'm only 6 weeks gluten free. I guess I expected an instant response. Thanks for sharing that.

I'm thinking of testing with iodine. I was reading about the iodine patch test, I also think I'll get with my son and we'll both do some high iodine foods. We don't use iodized salt, I've avoided a lot of iodine because I was told it would aggravate my Hashimoto's by increasing thyroid antibodies. Not having had biopsies means we don't really know for sure, but maybe the iodine thing would answer questions for DS and me. Do you know much about the patch test?
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#25 beachbirdie

 
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Posted 08 July 2012 - 12:45 PM

I'd like to upload a photo of my current (and severe) DH outbreak on my face and neck to show what the scarring can look like, but I don't know how to upload photos. How is this done? The photo is on my iPhone and filed in my download file on my computer. Any help?


You can set up a free photo storage account at a place like photobucket or flickr. You then upload the pictures to your account, and after they are stored you can capture a link suitable for posting into a message here. You can make an entire album public for sharing, or individual pictures.
  • 0
1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#26 dani nero

 
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Posted 08 July 2012 - 12:51 PM

So far I've been controlling my rash through iodine and sals limitation.. but it would be possible that it "just happened" that the other irritants were limited at the same time (if it is eczema) which helped control the rash. I also get a coldsore-like blister in my nose that itches when I get a full rash outbreak by the way.
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Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#27 dani nero

 
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Posted 08 July 2012 - 01:05 PM

I'd like to upload a photo of my current (and severe) DH outbreak on my face and neck to show what the scarring can look like, but I don't know how to upload photos. How is this done? The photo is on my iPhone and filed in my download file on my computer. Any help?


Rosetapper are you diagnosed?
  • 0
Self diagnosed January 2012, and on elimination, low-salicylate & low-iodine diet.
Also G6PD

#28 squirmingitch

 
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Posted 08 July 2012 - 01:05 PM

Holey moley. I never went to read about the dapsone before, I can see why most wouldn't want to take it. That is some dangerous stuff. I wouldn't take it either.

You've also explained why, though my rash is fading, it is NOT gone. I'm only 6 weeks gluten free. I guess I expected an instant response. Thanks for sharing that.

I'm thinking of testing with iodine. I was reading about the iodine patch test, I also think I'll get with my son and we'll both do some high iodine foods. We don't use iodized salt, I've avoided a lot of iodine because I was told it would aggravate my Hashimoto's by increasing thyroid antibodies. Not having had biopsies means we don't really know for sure, but maybe the iodine thing would answer questions for DS and me. Do you know much about the patch test?


I was thinking about doing the iodine patch test in the beginning but I did a lot of research on it & mostly IMHO, I think it's up for grabs or a lot of hooey. I don't know.
You COULD go low iodine. Here's a link:
http://www.thyca.org/rai.htm#diet

If things don't start clearing up in a week or less & certainly if no improvement is seen in 2 weeks then you may not have dh. Then there are a few who say iodine has no effect on their dh. It's a slippery thing dh is.



  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#29 rosetapper23

 
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Posted 08 July 2012 - 01:52 PM

Dani,

I sent you a private e-mail (hope that was okay!), and in it I explained that I'm officially diagnosed with celiac, and my gastroenterologist told me that if he had seen my lesions even before diagnosing me with celiac, he would have told me that I had DH and was most certainly a celiac. My son gets these same lesions in the same locations when he is glutened, and he's officially diagnosed with celiac. The fact that gluten and iodine play a role in our outbreaks lends credence to the fact that we both have DH...and I personally believe that anyone who breaks out in itchy, blistery lesions when ingesting both gluten and iodine can be pretty much assured that they have DH. Just my personal opinion, though...
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#30 rosetapper23

 
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Posted 08 July 2012 - 03:28 PM

Okay...Dani helped me with a link that I can share with you.

This photo is not for the weak of heart--it might even scare small children. My photo shows many scars from a glutening on my face and neck that occurred more than four months ago, but which have continued to re-erupt due to the iodine in my thyroid medication. I think the episode is reaching the end, and most of the lesions are now simply scars. I have identical lesions/scars on the other side of my face, too. And, no, I do NOT leave the house without applying a special makeup to mask the lesions/scars. I use AirFlash by Dior, which is a spray-on makeup--I apply it with a small brush, though, to extend the product. It actually gives me an "airbrushed" look of near-perfection. Before I discovered it, I just wanted to wear a bag on my head. My DH was not diagnosed officially, but my celiac was...and my son experiences the same outbreaks in the same locations when he eats gluten. As I stated previously, my gastroenterologist told me that if he had seen the lesions before my diagnosis, he would have told me immediately that what I had was DH and that I most certainly have celiac. Dermatologists are so bad at recognizing DH and testing properly for it, I doubt that there are many DH sufferers who HAVE been officially diagnosed.

http://rainytown.se/...apper_photo.JPG

As for how the blisters feel as they are emerging, mine first feel very itchy and swollen. Usually, a blister forms, and once that breaks, it becomes even more swollen and itchy. It also hurts all the way down through all the soft tissues (the way a herpes sore feels). Then let the peeling begin! My DH lesions peel every 12 hours like clockwork. They get covered by a fine, dry, dead-feeling covering that itches like crazy until it's peeled off. Only then does the skin feel smooth again, and the itching is lessened; however, the pain is still there. My mornings entail peeling off all the dry coverings so that I can apply my makeup; otherwise, the dead skin covering the lesions turns white and flaky (really disgusting). The peeling continues twice a day until it drops to about once a day after 2-3 months' time. The lesions get drier and less itchy, and eventually I end up with a dark scar--at first, it's purplish in color but fades to a dark brown color. As the eruptions become less frequent, they sometimes re-erupt under a scar, which requires that I use a sterilized needle to make a hole so that the blister can drain. Then the peeling starts all over again! It's a horrible cycle that is kept alive by the iodine in my thyroid medication. Before I had thyroid problems, I avoided iodine and was able to clear up DH outbreaks in less than a week after being glutened. Now, even the slightest gluten contamination can cause DH outbreaks that last four months or longer.
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