Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Extraintestinal Manifestations
0

18 posts in this topic

I'm curious to see if anyone can relate to my skin issues. In September '09, I developed an intensely pruritic, symmetrical rash on my inner thighs. After trying and failing with at-home treatments, I went to the doctor. She mentioned shingles, but I told her I've never had chicken pox. She prescribed me an antiviral and an antihistamine. I finished the RX, but it didn't phase the rash, so I went for a subsequent visit. She then prescribed Nystatin, a topical cream (again, didn't phase the rash). She recommended I consult a dermatologist, but without health ins. and paying out of pocket at the time, a dermatologist was out of the question. No one else in my household has had any type of rash, it hasn't spread, and I can't pinpoint it to anything in particular. The rash comes and goes and its presentation changes as well, much like my bowel movements/abdominal pain. There seems to be no rhyme or reason for any of it. Three years later (present day), the rash persists, as do the gastrointestinal symptoms. I'm perplexed to say the least. Just last year, I developed a single lesion (completely different than the other rash) on one of my buttocks. I just assumed it was a spider bite or something. Over the course of the past year, these lesions still appear in singular fashion, last for several weeks, and disappear, leaving behind a purple mark. These lesions do not itch and like the rash, they come and go. Has anyone else had this happen to them? Any suggestions or ideas what could be going on?

0

Share this post


Link to post
Share on other sites


Ads by Google:

It sounds like you may have DH, the skin form of celiac. Are you gluten free? If you are gluten free are you strict with the diet? Some of us that have DH also need to avoid iodine for a while as iodine can keep the antibodies active in the skin. After we have been lesion free for a while we do need to add iodine back in as it is an important nutrient.

0

Share this post


Link to post
Share on other sites

It sounds like you may have DH, the skin form of celiac. Are you gluten free? If you are gluten free are you strict with the diet? Some of us that have DH also need to avoid iodine for a while as iodine can keep the antibodies active in the skin. After we have been lesion free for a while we do need to add iodine back in as it is an important nutrient.

Thank you, ravenwoodglass, for taking the time to respond! I am not currently gluten free and have never been. I want to get the bloodwork done before cutting out gluten. I am thinking of bypassing the doctor and ordering the comprehensive celiac panel through healthcheckusa. It would save me the hassle of visiting the doctor, possible doctor's dismissal, etc. Please forgive my ignorance, but when you speak of iodine, are you referring to salt? I hope that this day finds you well!

0

Share this post


Link to post
Share on other sites

She's speaking not only of salt but of foods high in iodine content. Dairy, egg yolks, seafood, sea salt, carageenan (algae, seaweed or anything from the sea), potato skins. See the link below for a low iodine diet, of course, you need to keep the gluten out of the diet. And you CAN have salt, you just need to buy PLAIN, NON-IODIZED salt.

http://www.thyca.org/rai.htm#diet

0

Share this post


Link to post
Share on other sites

She's speaking not only of salt but of foods high in iodine content. Dairy, egg yolks, seafood, sea salt, carageenan (algae, seaweed or anything from the sea), potato skins. See the link below for a low iodine diet, of course, you need to keep the gluten out of the diet. And you CAN have salt, you just need to buy PLAIN, NON-IODIZED salt.

http://www.thyca.org/rai.htm#diet

Thank you for arming me with such great information, squirmingitch! I can see how you came up with your username! :(

0

Share this post


Link to post
Share on other sites




Thank you for arming me with such great information, squirmingitch! I can see how you came up with your username! :(

YVW! smile.gif You might look at these photos & see if anything looks like what you get/have.:

http://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/

It is odd that you say it doesn't itch. DH generally itches like a bear! But, what other sensations do the places have? Do they burn? Sting? What?

Could you take photos & post them? That would help a lot.

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....biggrin.gif

0

Share this post


Link to post
Share on other sites

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....

....or as I have suggested.....just a cool symbol that means "the artist formerly known as squirmy"

;)

0

Share this post


Link to post
Share on other sites

YVW! smile.gif You might look at these photos & see if anything looks like what you get/have.:

http://www.celiac.com/gluten-free/topic/94056-dh-photo-bank/

It is odd that you say it doesn't itch. DH generally itches like a bear! But, what other sensations do the places have? Do they burn? Sting? What?

Could you take photos & post them? That would help a lot.

Yes, my screen name --- one day I hope to be able to lose that. We joke what I could turn it into --- squirmingitchnomore. no mo itch, itchy not....biggrin.gif

Thanks for the link! I have googled images of DH before. Some of the rashes differ even in what they have pictured under DH. I would say that I do not have the classic presentation of DH. I do not have water or fluid-filled blisters. My rash changes in its presentation, so sometimes I think it's one thing, sometimes another. The rash on my inner thighs itches like a mother. It also burns when it is fully active, but that could be because I scratch so much! It is currently in what I refer to as remission. It, like my gastrointestinal symptoms, seems to have periods of flares and periods of remission and although I have daily abdominal pain, it is mild in comparison to what I call my flares of gastrointestinal upset. I can't explain it. I have a lesion on one of my buttocks and the purplish spots, which are the remnants of the other lesions, on the other one, but I'd be terribly embarassed to upload pics of my booty! When the itchy thigh rash returns, as I'm sure it will, I will most definitely take pics and upload them. I've had it for three years now! That's why I put unexplained skin rashes on my signature. It's just one of my lovely symptoms. I do hope you will one day no longer be squirmingitch!

0

Share this post


Link to post
Share on other sites

That the rash fades to purple is one of the trademarks of DH. And if it does that it generally leaves a scar, in my experience ( from looking at my husband's --I have not had it)

0

Share this post


Link to post
Share on other sites

That the rash fades to purple is one of the trademarks of DH. And if it does that it generally leaves a scar, in my experience ( from looking at my husband's --I have not had it)

Thank you for your input, mushroom! At about the same time that I developed the singular lesions on my buttocks (about a year ago),

I developed sublingual gland swelling as well as a bump on the way-back of my tongue. I went to my physician. She gave me a referral to an ENT and had the nurse practitioner give me an injection into my buttocks. The nurse asked me if I had a staph infection. I had just acquired the lesion, so I told her I didn't know. I know that these lesions on my booty could be something other than DH. I have now had these lesions for a year. They come up one by one, last for several weeks, and finally fade. I do have a slight purple mark where they used to be. I'm just wondering if a staph infection would spontaneously disappear without the aid of something? The rash on my inner thighs has been there for three years and it itches like crazy when it's active. I was given an antiviral and an antifungal, but nothing touches it. The physician ruled out scabies by visual examination only. I would assume it would've spread by now (three years later) and surely someone else in my household would've contacted it had it been something like scabies. I don't know. I could most definitely be wrong. I'm sorry your husband has DH.

0

Share this post


Link to post
Share on other sites

Thank you, ravenwoodglass, for taking the time to respond! I am not currently gluten free and have never been. I want to get the bloodwork done before cutting out gluten. I am thinking of bypassing the doctor and ordering the comprehensive celiac panel through healthcheckusa. It would save me the hassle of visiting the doctor, possible doctor's dismissal, etc. Please forgive my ignorance, but when you speak of iodine, are you referring to salt? I hope that this day finds you well!

I had to just drop iodized salt and take a vitamin without it. Some, like Squirmy have to drop all foods with iodine. You can have DH and other skin conditions. The itchy rash you speak of does sound like DH. Here is a helpful site for info on DH and the testing that needs to be done by a derm to diagnose it. It is important that the doctor be looking for DH as special testing in the lab needs to be done.

http://www.celiac.nih.gov/Dermatitis.aspx

Do stay on gluten until you are done with a celiac related testing and then try going gluten free to see if it helps even if the tests are negative.

I did have symptoms, including DH come and go for years before my problems became a daily happening.

Hope you are feeling better soon.

0

Share this post


Link to post
Share on other sites

I had to just drop iodized salt and take a vitamin without it. Some, like Squirmy have to drop all foods with iodine. You can have DH and other skin conditions. The itchy rash you speak of does sound like DH. Here is a helpful site for info on DH and the testing that needs to be done by a derm to diagnose it. It is important that the doctor be looking for DH as special testing in the lab needs to be done.

http://www.celiac.nih.gov/Dermatitis.aspx

Do stay on gluten until you are done with a celiac related testing and then try going gluten free to see if it helps even if the tests are negative.

I did have symptoms, including DH come and go for years before my problems became a daily happening.

Hope you are feeling better soon.

Thank you for the link and additional information!

0

Share this post


Link to post
Share on other sites

DH presents in many forms; not just as water blisters. And it presents anywhere on the body. I think it really throws people that almost all of the medical info. out there says elbows, buttocks, knees & so forth because we who have it know it can present any place on the body. My husbands does not present with the classic water blister always mentioned in the med info. yet his is undoubtedly dh & like many on this board report theirs to be. And my husbands dh tends to not itch as much as mine but it burns far more & stings quite a lot.

This is excellent info. on all the differing presentations.

http://www.celiac.com/gluten-free/topic/84513-descriptions-of-dh-types/

It is possible you could get a dx by getting a dh biopsy but you need an active lesion & the biopsy must be taken from a clear area ADJACENT to an active lesion. Repeat --- this is NOT ON a lesion but adjacent to one. A dx of dh IS a dx of celiac disease.

You should check out the doctors forum to see if you can find a derm or GI or both near you who is well versed in celiac &/or dh. Use the search box on the site to put in the town, cities or state you would be looking in.

http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/

0

Share this post


Link to post
Share on other sites

....or as I have suggested.....just a cool symbol that means "the artist formerly known as squirmy"

;)

laugh.giflaugh.giflaugh.gif Maybe an ampersand. Simply &

0

Share this post


Link to post
Share on other sites

laugh.giflaugh.giflaugh.gif Maybe an ampersand. Simply &

or *

like a star :)

0

Share this post


Link to post
Share on other sites

DH presents in many forms; not just as water blisters. And it presents anywhere on the body. I think it really throws people that almost all of the medical info. out there says elbows, buttocks, knees & so forth because we who have it know it can present any place on the body. My husbands does not present with the classic water blister always mentioned in the med info. yet his is undoubtedly dh & like many on this board report theirs to be. And my husbands dh tends to not itch as much as mine but it burns far more & stings quite a lot.

This is excellent info. on all the differing presentations.

http://www.celiac.com/gluten-free/topic/84513-descriptions-of-dh-types/

It is possible you could get a dx by getting a dh biopsy but you need an active lesion & the biopsy must be taken from a clear area ADJACENT to an active lesion. Repeat --- this is NOT ON a lesion but adjacent to one. A dx of dh IS a dx of celiac disease.

You should check out the doctors forum to see if you can find a derm or GI or both near you who is well versed in celiac &/or dh. Use the search box on the site to put in the town, cities or state you would be looking in.

http://www.celiac.com/gluten-free/forum/6-celiac-disease-doctors/

[/quote

Thanks, squirmingitch! I checked out that first link you provided. When I first presented w/ the leg rash, my physician's first inkling was shingles, but after she learned I'd never had chicken pox, she prescribed me an antiviral for herpes (which didn't phase it). While I know it can still be anything but DH, I am going to pursue getting the celiac panel this week. I feel that I have too many symptoms/diagnoses that point to Celiac disease or at the very least gluten sensitivity. I have nothing to lose! Thank you again! :)

0

Share this post


Link to post
Share on other sites

or *

like a star :)

MmmWah!wink.gif

0

Share this post


Link to post
Share on other sites

[/quote

Thanks, squirmingitch! I checked out that first link you provided. When I first presented w/ the leg rash, my physician's first inkling was shingles, but after she learned I'd never had chicken pox, she prescribed me an antiviral for herpes (which didn't phase it). While I know it can still be anything but DH, I am going to pursue getting the celiac panel this week. I feel that I have too many symptoms/diagnoses that point to Celiac disease or at the very least gluten sensitivity. I have nothing to lose! Thank you again! :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,636
    • Total Posts
      921,533
  • Topics

  • Posts

    • Did your doctor check for SIBO, H. pylori, ulcers, etc. when he was obtaining biopsies to check for celiac disease?  
    • Oh, and as I mentioned in my own post on pain, xanax. I swear. I tried it just to deal with the occasional panic I had at weird scary symptoms and clueless doctors. I am not a fan of long term use. But I recently found that .25 mg seems to aid with the neuropathic pain. It does not go away, but it helps. 
    • It does sound like a Glutening and you are just a few months into the diet.  It might help if you read our Newbie 101 thread under the "Coping" section.   Here is some information about rice milk: https://www.verywell.com/is-rice-dream-gluten-free-562354 Many, many celiacs are often lactose intolerant temorarily or permanently if you are naturally genetically inclined.  When I am glutened, I lose the ability to digest lactose for a while.   Salad?  Great but it can be rough on a sore gut!  Think soups, stews, easy-to-digest foods that you prepare yourself until you feel better.  Did your folks give you salad after a bout of flu?  Or did you stick with jello and broth?  I am intolerant still after three years to garlic and onions (the lactose resolved, thankfully).  You have a leaky gut (Google zonulin and Dr. Fasano who is a leading celiac researcher to verify that this is true) and that means you can become intolerant to anything (hopefully, just temporarily).   If you are 100% sure that you have had no access to gluten....did you eat out lately?.....then see your doctor.  Remember, celiac disease symptoms can change.  And here is the biggie.....it can take weeks, months or years to heal from celiac disease.  Two months in is nothing, really.  Why?  It takes time to figure out the diet and time for antibodies to come down.  celiac disease is an autoimmune disorder triggerEd by gluten.  once triggered it can go on and on damaging your gut especially with repeated glutenings (accidental or through cross contamination). I hope you feel better soon!  
    • I concur! I literally feel your pain as well. Like, at the moment, lol. Did you have an endo to see inflammation or damage? I am close to begging my GI for carafate or something to coat and protect. How about testing your antibodies to see if they are still rising? I read somewhere here rice milk may not be a good option.  Folks here have also suggested to me to stick with whole foods. Limit processed. Especially stuff that is not certified gluten-free, like chex. I think small amounts of gluten are in processed foids and can add up. I too reacted to lettuce the other day like I was ingesting glass. My sibling  had a food sensitivity panel done and it came back positive for a few things he had been eating a lot of. He can now eat them, but had to cut them out of his diet. Lettuce is probably on mine.  I have been drinking carrot and pomegranate juice,  dandelion root tea with hiney, aloe water, lots of squash, fish. Mild, no garlic, no onions or hot sauce. No coffee. It sucks.  Inflammation can tick off other organs, you mention a "Pain below". Not exactly sure which side, but certainly call your doc Monday. Sooner if the pain increases.
    • You should see a GI specialist before you go gluten free.  They should do a upper endoscopy to check for celiac damage.  Colonoscopy won't show anything related to celiac.  Also no you should not feel worse on gluten free, you should feel better.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,639
    • Most Online
      3,093

    Newest Member
    NickyW_UK
    Joined