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

Lichen Sclerosis
0

21 posts in this topic

Anyone have it? If so, did the gluten-free diet make you feel better?

0

Share this post


Link to post
Share on other sites


Ads by Google:

My mother in law has it.. Although I am the one with celiac disease, she eats gluten-free while she is living here... The only thing that helps it is an ointment called "Betamethasone Valerate Ointment 0.1%"

0

Share this post


Link to post
Share on other sites

I don't think those two are known to be related. Lichen sclerosis is pretty common, though. And treatable.

0

Share this post


Link to post
Share on other sites

I don't think those two are known to be related. Lichen sclerosis is pretty common, though. And treatable.

LS isn't that common. They are both autoimmune. While they may not be directly related, I personally feel most AI diseases have a connection. I've read online cases of women with LS going gluten-free and feeling better. In case you have the wrong disease, Lichen sclerosis, in a nutshell affects the skin of the labia. (or rarely the penis)

At this point my results for celiac disease are considered negative, but I find that questionable. I notice when my symptoms of LS flare up, my "other" symptoms flare up as well.

0

Share this post


Link to post
Share on other sites

My mother in law has it.. Although I am the one with celiac disease, she eats gluten-free while she is living here... The only thing that helps it is an ointment called "Betamethasone Valerate Ointment 0.1%"

Becci~ I've never heard of that med. I'll have to look into it. I've been on clobetesol for years, but wanted to stop because my main problem is thinning skin, which the clob can make worse. I started protopic a few weeks ago, but frankly it just hurts me so far! I started using emu oil with vitamin E yesterday. I had used it years ago. At the time, my symptoms were in check, but I don't know if it was the emu oil, or I just happened to be in a good phase at the time. You might have your mil look into it as well.

0

Share this post


Link to post
Share on other sites




TPT: Has eating gluten-free helped with your lichen sclerosus? I was recently diagnosed with LS as well, despite the fact it is most common in post-menopausal women, and I'm 34! It's awful. I've only had the symptoms since having my baby a year ago. There is very little research on it (of course since it's not a "man" disease or supported by drug companies), but I also found things online suggesting there is a link between LS and celiac disease. Some women have said eating gluten-free is the only thing to suppress their symptoms. I'm desperate for anything to work!

I actually had an endoscopy (with biopsies) 3 years ago, which did not indicate celiac disease, but my GI still ordered the celiac disease panel of bloodwork, which I did today. Even if I don't have celiac disease, I'm going gluten-free in the hopes it will help with the lichen sclerosus.

0

Share this post


Link to post
Share on other sites

TPT: Has eating gluten-free helped with your lichen sclerosus? I was recently diagnosed with LS as well, despite the fact it is most common in post-menopausal women, and I'm 34! It's awful. I've only had the symptoms since having my baby a year ago. There is very little research on it (of course since it's not a "man" disease or supported by drug companies), but I also found things online suggesting there is a link between LS and celiac disease. Some women have said eating gluten-free is the only thing to suppress their symptoms. I'm desperate for anything to work!

I actually had an endoscopy (with biopsies) 3 years ago, which did not indicate celiac disease, but my GI still ordered the celiac disease panel of bloodwork, which I did today. Even if I don't have celiac disease, I'm going gluten-free in the hopes it will help with the lichen sclerosus.

I was only gluten-free for 2 weeks. I am still in limbo over the whole celiac disease thing. I actually have some allergy testing scheduled for next week. After that, I will work more on diagnosising or ruling out celiac disease.

0

Share this post


Link to post
Share on other sites

I turned 38 yesterday, and was diagnosed with LS about 5 years ago. My mother was just diagnosed with it maybe 2 years ago shorly after she had a hysterectomy. She was fine until her surgery. If I remember correctly, I think I suggested she may have LS.

0

Share this post


Link to post
Share on other sites

Hi ladies,

I'm new here because my naturopath has just put me on a gluten-free diet for my LS. I'm now 34, diagnosed at 27 after my first baby, but I've likely had LS since puberty as that was when I had the burning / itching symptoms which I don't have now. I was told I have an advanced case of LS and didn't even require a biopsy to confirm (have since had one and confirmed). My LS symptoms are fisures and labia fusing with splitting and bleeding during intercourse. Since my diagnosis I have been on: progesterone, estrogen, testosterone - none of which helped. I had surgery to remove scar tissue in 2006 (which has returned) and I am now on clobetasol and Protopic which are keeping me under control with a decrease in fisure splitting and scar patches are less white and appear to be more "stretchy". I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here. Anyone noticed an improvement with Gluten-Free?? (I might also try dairy-free, but not getting too far ahead of myself at this point).

I will be going for celiac testing shortly.

0

Share this post


Link to post
Share on other sites

I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here.

That's a good first step. Systemic candida (invasive candidiasis) is probably the root of the problem.

0

Share this post


Link to post
Share on other sites

Hi ladies,

I'm new here because my naturopath has just put me on a gluten-free diet for my LS. I'm now 34, diagnosed at 27 after my first baby, but I've likely had LS since puberty as that was when I had the burning / itching symptoms which I don't have now. I was told I have an advanced case of LS and didn't even require a biopsy to confirm (have since had one and confirmed). My LS symptoms are fisures and labia fusing with splitting and bleeding during intercourse. Since my diagnosis I have been on: progesterone, estrogen, testosterone - none of which helped. I had surgery to remove scar tissue in 2006 (which has returned) and I am now on clobetasol and Protopic which are keeping me under control with a decrease in fisure splitting and scar patches are less white and appear to be more "stretchy". I have just started with a naturopth who insists that ANYONE with autoimmune disease should be gluten-free, so that's why I'm here. Anyone noticed an improvement with Gluten-Free?? (I might also try dairy-free, but not getting too far ahead of myself at this point).

I will be going for celiac testing shortly.

Please do not delete gluten from your diet until after your gluten related testing is done as the tests will always be negative if you do. They are checking for antibodies and if your not eating gluten you will not be producing antibodies. Your doctor can check for other issues without your being on gluten so you can drop gluten as soon as testing is done for celiac/ gluten intolerance.

0

Share this post


Link to post
Share on other sites

Had LS for several years and it was getting worse. Was diagnosed with celiac disease in September. LS completely gone after only a couple of weeks without gluten.

0

Share this post


Link to post
Share on other sites

I was diagnosed with this 22 years ago. It was shortly after giving birth to my second child. I am thinking I may have a problem with gluten because I had a DH type rash almost a month ago that has appeared for the 3rd time in the past six months. I am trying not to make things "fit", but it seems to make some sense. In retrospect, when the LS presented our grocery budget was $50 a week and that had to go towards diapers and formula also. We literally lived on pasta. I started out being treated with a testosterone compound which was just awful. I then went to a diprolene ointment. I now use hydrocortisone valerate. I seem to be in remission and only use the cream occasionally if I feel things might be starting to flare.

Over the course of the years, I found that I preferred a "low carb" diet and seemed to feel better. I don't know if this has contributed to the remission, but as of a week ago I have stopped eating gluten. I will be interested to see if I have any LS flares going forward.

0

Share this post


Link to post
Share on other sites

I want to add an interesting note about steroids and suspected DH.

I was in them - injections, oral, topical for DH. All helped to some degree with the DH but I had horrid side effects which resulted in my derm withdrawing them - except topical.

It wasn't til I got off the topical that my DH finally healed and remitted. I was 2 months gluten-free, not low iodone when I decided to do it. Rash blew up and then when it went down it healed (before it stayed and looked like ringworm).

Then I added an iodine containing multivitamin and it blew up - that's another story....

So, I don't know if I am allergic to steroids (I suspect I can't take them in any form as they send my adrenals into a spiral) or if this is a hallmark of DH.

So, it may be worth an experiment if your DH reaches a healing plateau and you are using steroids.

0

Share this post


Link to post
Share on other sites

All,

I have Lichen Sclerosis (LS) and after alot of research I discovered that going on a low oxalates diet gave me "immediate" relief. It's difficult to be on a gluten free and low oxalates diet - but IT WORKS! In just two weeks on the low oxalates diet my horrible LS itching has completed stopped, and in the first 48 hours the intense hypersensitivity disappeared. You can learn about LS and a low oxalates diet on this foundation website:

http://www.thevpfoundation.org and http://www.lowoxalate.info. Order the cookbook from the VP Foundation, and read everything on these websites. My OBGYN's only answer to LS was to use that cortisone cream - it doesn't solve a darn thing. It's so fustrating that doctors don't suggest going on a low oxalates diet for LS. Many women suffer with LS and they don't have to... Also there's a Yahoo Group that has success stories of women (who have LS) that went on a low oxalates diet and their LS symptoms went away! Here's the Yahoo Group url: http://health.groups.yahoo.com/group/Trying_Low_Oxalates.

Also, I've only been gluten free for 4 months. When my LS symptoms didn't go away after going gluten-free I searched for answers and thank goodness found the VP Foundation.

0

Share this post


Link to post
Share on other sites

The Yahoo Low Oxalates link is incorrect in my last posting. Should be: http://health.groups.yahoo.com/group/Trying_Low_Oxalates

Or you can google the Yahoo Group - Trying Low Oxalates. You will need to join the group before you can view the resources or participate in the forums.

I hope this information helps others with LS.

0

Share this post


Link to post
Share on other sites

I have lichen sclerosus and was just diagnosed with celiacs which is in my family. I don't know how long I had LS before it was biopsied. I don't have the burning and itching, so I figured it was part of my vitiligo. I'll start the gluten free diet later this month and I would be very happy if it also helped clear up the LS. I didn't even know that was a possibility. LS is an autoimmune and comes in packs like the others. In addition to those 3, I also have Hashimoto's thyroiditis.

0

Share this post


Link to post
Share on other sites

Brand new to the group and first post. I recently discovered I'm gluten sensitive. I also have a fairly mild case of LS, which came up quickly in 2008 during a time of great stress. Was not diagnosed with LS for a long time however! Due to LS I developed squamous cell carcinoma, which led me to research, and I self diagnosed the LS. Was finally confirmed in December!

I discovered the gluten sensitivity very recently after going on an elimination cleanse. It does make sense that the two could be related as well. I'm hoping that eliminating gluten will help with the LS.

Best of luck to you!

0

Share this post


Link to post
Share on other sites

I was diagnosed with LS almost a decade ago when I was a teenager. Flared up when I was under immense stress in university, and unfortunately went undiagnosed for a year or so before I could find a doc who knew what was up. In that time I had a bit of fusing, and was in a huge amount of pain (vulvodynia). Took a few years to recover from the damage done in that first year, using betaderm ointment 3-4 times a week, but my flares kept coming back until I went gluten-free last year. I still get mild flare ups around my period each month (mainly itching), but since cutting out gluten I think my LS has improved hugely. 

0

Share this post


Link to post
Share on other sites

ravenra I'm so glad you commented on this old post and I happened to see it!
I can only offer an example from my own experience. For as long as I've had mild gastro symptoms I've also had what the docs have been telling me is bad thrush - it had similar symptoms but didn't really come and go or react to meds like you'd expect thrush too. Both of these also began under extreme stress during my first year of uni. I found out about lichen sclerosis as a related/similar condition to thrush so that had sort of been on my mind as a possibility. I went gluten-free for two weeks last month and had absolutely no LS/thrush symptoms but I dismissed it as too much of a coincidence and that I was treating gluten-free like a cure-all. Until...I'm back eating gluten this week for a blood test (still in the early stages of diagnosis) and it's (whatever 'it' is) back. With a vengeance :( three days to go... 
 

 

0

Share this post


Link to post
Share on other sites

ravenra I'm so glad you commented on this old post and I happened to see it!

I can only offer an example from my own experience. For as long as I've had mild gastro symptoms I've also had what the docs have been telling me is bad thrush - it had similar symptoms but didn't really come and go or react to meds like you'd expect thrush too. Both of these also began under extreme stress during my first year of uni. I found out about lichen sclerosis as a related/similar condition to thrush so that had sort of been on my mind as a possibility. I went gluten-free for two weeks last month and had absolutely no LS/thrush symptoms but I dismissed it as too much of a coincidence and that I was treating gluten-free like a cure-all. Until...I'm back eating gluten this week for a blood test (still in the early stages of diagnosis) and it's (whatever 'it' is) back. With a vengeance :( three days to go... 

 

 

Agh, thrush. I feel for ya!  I was told by like 5 DRs it was yeast infection, or an STI, or a half dozen other things - which were all horribly embarrassing at the time. My family doc even told me to use diaper rash cream, despite the fact that I was getting no sleep from the itching - and even tried sleeping with mittens on!  Getting a dx was a huge relief that I wasn't crazy and that there was a legit reason that I didn't cause.

 

I forgot to add, whenever I get contaminated by gluten my LS flares up, so it does seem like there's a link.  Good luck!  

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
      921,535
  • Topics

  • Posts

    • I have 2 insurance policies, one with my husband's company and one through mine. I also stretch out the more major work into the next year, so I can make the most use of my benefits. So, a dental implant for me takes about a year for me to complete.  I have the post put in at the end of one year and the tooth made about 6 months later. Honestly, the insurance company probably hates me because I max out my benefits every year. You do what ya gotta do!  I still have to pay for some of the work out of pocket but about 75% gets covered. If you pay cash for procedures then they usually charge a lower price. Haggle with the dentist over price. They like getting cash.
    • 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.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,640
    • Most Online
      3,093

    Newest Member
    Kasia2016
    Joined