Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Ads by Google:
Celiac.com Sponsor:                                    


Photo
- - - - -

Is It Possible To Get Dh In Genital Area?


  • Please log in to reply

31 replies to this topic

#1 glutenmommy

 
glutenmommy

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts
 

Posted 15 July 2009 - 03:21 AM

Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) :rolleyes: with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.

It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.

I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.

By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...

Thanks!
  • 0

Celiac.com Sponsor:

#2 Lisa16

 
Lisa16

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 627 posts
 

Posted 15 July 2009 - 07:03 AM

Yes indeed, this can happen :D I am sorry you get it in this area. For me, this is one of many areas where it can happen. The first time I really freaked out and thought my beloved of 7 years had given me herpes. But of course, it tested negative for that. So what could it be? Well.... there weren't too many other possibilities. Horrible, painful and embarassing about sums it up.

You are far from alone.

I was actually diagnosed through DH biopsy.

You can get it anywhere. No kidding!
  • 0

#3 ang1e0251

 
ang1e0251

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,764 posts
 

Posted 15 July 2009 - 11:02 AM

Me too and was it painful! That was what finally got my attention enough to put it all together. It takes at least a couple of months to clear too so don't get rid of your cream.
  • 0

#4 glutenmommy

 
glutenmommy

    Community Member

  • Advanced Members
  • PipPipPip
  • 25 posts
 

Posted 16 July 2009 - 03:32 AM

Thanks for the replies so far. I wonder how many people get this and don't even know what it is. I can't tell you how many boxes of Monistat I bought thinking it must be a yeast infection... :rolleyes:
  • 0

#5 darlindeb25

 
darlindeb25

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 2,324 posts
 

Posted 16 July 2009 - 03:57 AM

Well, this certainly dots the "i's" and crosses the "t's" for me. I lived exactly what you are talking about before going gluten free. The terrible itching, and extremely painful...every cream I tried barely touched it. I too, remember showering was painful, and probably the worst of the itching was after showering for several hours. This went on for several months for me, now, I can't remember if this was just before I went gluten free or not. Must have been, I have never suffered from it again. I did have DH on both elbows once, after using Tresemme, then never again.

Amazing what gluten does to some of us!!
  • 0
Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#6 Lisa16

 
Lisa16

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 627 posts
 

Posted 16 July 2009 - 06:11 AM

Oh, I think it is fairly common but people aren't brave enough to talk about it.

In my case, after 18 months of being gluten-free, I do not get DH much at all. The last time I got it in the area was after a major glutening a few months after going gluten-free. Since then I had a couple of small outbreaks on arms, hands and feet from lesser glutenings. I would like to tell gluenmommy that there is hope. Having something lke this really makes it easy to stay on the diet! :D

I am going to venture a speculation. In my case this came on late-- the last year or so before diagnosis after having active celiac for over 23 years. Maybe when your body starts depositing the anitbodies in you skin like this, you have a fairly advanced case? I also am more sensitive than other celiacs (I got sick at a gluten free cooking class!) So maybe this is some kind of indicator.

Good luck to all of you! May it never ever come back!

Death to DH!
  • 0

#7 t.goodnough

 
t.goodnough

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 17 July 2009 - 09:12 PM

[

font="Tahoma"]I have to say Lisa hit the nail on the head with summing it up as "horrible, painful and embarassing"! I get it on the crack of my behind and have seen many doctors including dermatologist who have done biopsys and still didn't get a diagnosis. They could tell what it wasn't but not what it was. After ten years of unexplained rashes I finaly figured it out in March. After doing a nutritional cleans that happened to be gluten free and thirty days of no out breaks I put the peices together! Since then I have broke out twice - once when I failed to check the label of a vitamine/supplament that contained wheat germ and another when I failed to read the ingredeints in a bottle of lotion. The thought of loading up on gluten in order to get a positive diagnosis through a biopsy makes me ill, I think I might try the DNA testing.[/font]


  • 0

#8 jkr

 
jkr

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 78 posts
 

Posted 18 July 2009 - 09:00 AM

Every time (and I mean EVERY!) I eat gluten, I break out in my anal/vaginal area (sorry -- TMI!!) :rolleyes: with small clear, watery blisters that itch worse than poison ivy. It is the most painful rash I have ever experienced. I nearly go through the roof when I'm showering and the soap or water touches it, that's how painful it is. It only happens when I've been glutened, and usually clears up within a couple of days if I am careful and avoid reexposure to more gluten.

It took me years to figure out this was related to gluten. I kept going to the gynecologist trying to figure out what was going on -- he ruled out hemmorhoids, yeast infection, bacterial infection, UTI, STD, etc. He prescribed a steroid cream which does help but I can only use it sparingly as it is a potent mixture. Once I did the elimination diet and connected the rash to gluten, I rarely even need the steroid cream now.

I know this doesn't sound like the classic case of DH because it is not occurring in the usual areas. But can it occur anywhere? I'm trying to decide if I should have this rash biopsied. And who does the biopsy -- a dermatologist or gastroenterologist? I'm afraid I will have a hard time convincing any doctor to do this since it is not a "classic" presentation.

By the way, I've been gluten-free for more than 2 months now so I don't think any blood work or intestinal biopsy would be accurate at this point...

Thanks!


I can really relate! I've had it in the anal area for years and tried over the counter creams to no avail. The water in the shower would burn the area. The area gets so scaly for me after the bumps come out. Mine should clear up after my endoscopy on 7/29 and I go gluten free. I've gone gluten free in the past and it really clears it up nicely.
  • 0

#9 Jogo

 
Jogo

    New Community Member

  • Members
  • Pip
  • 2 posts
 

Posted 30 January 2012 - 04:50 PM

This is true for me too, in fact I only get the reaction in the genital area and no where else (which seems unusual to me?) I've been dealing with this for four years. If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures. The itching is enough to drive someone mad in the worst moments. More recently I've started seeing the rash appear on my penis, which is really pretty terrifying. With each year the outbreaks seem to be spreading on my body. I've been leading a very strict gluten-free diet for over a year, which really helps stop outbreaks, but I inevitably get some sort of cross-contamination every month or two and have to deal with a new flare up. I'm realizing I must be extremely sensitive. My dermatologist prescribed the steroid cream Cloderm, and this helps reduce the rashes within a few days. I hate to use this cream on such sensitive areas of my body since it runs the risk of permanently thinning my skin, but so far I have found nothing else helps and during an outbreak out I get desperate. I'm thinking about trying Dapsone as soon as I have health insurance again. I wonder if others have found Dapsone helpful?

Sorry if that was TMI but I feel like people really need to talk about the embarrassing reactions so that we know we aren't alone in this.
  • 0

#10 Skylark

 
Skylark

    Glutenologist

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,490 posts
 

Posted 30 January 2012 - 05:09 PM

Hi, Jogo and welcome. That does sound painful.

This is a 2009 thread so you won't likely get replies from the people who started. You bumped it and it's interesting to me because I used to get a rash on my hand I thought was herpes whitlow. I had clear, tiny, intensely itchy blisters that would come up on my index finger. They would itch/hurt so badly I'd scratch them open. I could never figure it out because I'm not a dentist, and I don't have genital herpes or cold sores. Now I think it was DH. It took a couple years gluten-free for me to stop having the itching, though it stopped blistering sooner.

I can understand your reluctance to use Cloderm. There are some posts around here on eating low-iodine as well as gluten-free for DH. You might search for them. Perhaps if you can get the iodine out of your diet you won't break out as badly when you get CC'd.
  • 0

#11 mopsiecat

 
mopsiecat

    New Community Member

  • Advanced Members
  • Pip
  • 24 posts
 

Posted 20 February 2012 - 08:00 AM

If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures.

Hey that sounds like me! Finally some others with the same problem. I have been suffering like this for years; in fact, it is the sure way for me to know that I've had gluten from somewhere. My main symptom from gluten is bowel pain, but sometimes with just a slight discomfort I don't know if it was gluten or what, but then the next day a new fissure just pops open in "that area" and then I know for sure.
They can take weeks to heal, but I've found something that helps me heal fast. I soak in an sitz bath for a bit after using the toilet, then apply pure aloe vera gel and dry my rear end with the hair dryer. Keeping the area as dry as possible is helpful for healing.
  • 0
Diagnosed with celiac disease July 2004


“Socialism is a philosophy of failure, the creed of ignorance, and the gospel of envy, its inherent virtue is the equal sharing of misery.” — Winston Churchill

#12 ncallier

 
ncallier

    Community Member

  • Advanced Members
  • PipPipPip
  • 29 posts
 

Posted 14 April 2012 - 10:31 PM

If I get "glutenated" I get very painful rashes/inflamed skin on my butt (directly on and around the sphincter usually) which has resulted in many very painful fissures.

Hey that sounds like me! Finally some others with the same problem. I have been suffering like this for years; in fact, it is the sure way for me to know that I've had gluten from somewhere. My main symptom from gluten is bowel pain, but sometimes with just a slight discomfort I don't know if it was gluten or what, but then the next day a new fissure just pops open in "that area" and then I know for sure.
They can take weeks to heal, but I've found something that helps me heal fast. I soak in an sitz bath for a bit after using the toilet, then apply pure aloe vera gel and dry my rear end with the hair dryer. Keeping the area as dry as possible is helpful for healing.



I have the same symptoms but they extend into my perineal area (the area of my episiotomies). Does anyone else have these symptoms? Do you tell your doctor? Is there medicine that eleviates these symptoms? Please respond.
  • 0
English lady

#13 Lolli

 
Lolli

    New Community Member

  • Advanced Members
  • Pip
  • 13 posts
 

Posted 10 August 2012 - 11:16 AM

Yes.
It's often misdiagnosed as herpes, especially if a herpes test comes back positive.
  • 0

#14 mopsiecat

 
mopsiecat

    New Community Member

  • Advanced Members
  • Pip
  • 24 posts
 

Posted 18 August 2012 - 12:46 PM

I have the same symptoms but they extend into my perineal area (the area of my episiotomies). Does anyone else have these symptoms? Do you tell your doctor? Is there medicine that eleviates these symptoms? Please respond.



Yes they can vary, sometimes mine are around the anus, at other times they come in the episiotomy area. Sometimes they can be really long and extend all the way along the perineal area. ;-(
My doctor didn't give a medicine, just told me to keep the area clean and dry and don't wear underwear in bed.
  • 0
Diagnosed with celiac disease July 2004


“Socialism is a philosophy of failure, the creed of ignorance, and the gospel of envy, its inherent virtue is the equal sharing of misery.” — Winston Churchill

#15 squirmingitch

 
squirmingitch

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,343 posts
 

Posted 18 August 2012 - 02:44 PM

Yes they can vary, sometimes mine are around the anus, at other times they come in the episiotomy area. Sometimes they can be really long and extend all the way along the perineal area. ;-(
My doctor didn't give a medicine, just told me to keep the area clean and dry and don't wear underwear in bed.


This is an old post; originally begun in 2009 & then someone bumped it in early 2012.
  • 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.

 





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: