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

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

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
      103,608
    • Total Posts
      918,334
  • Topics

  • Posts

    • How do you know what's causing what?
      Hi Kam, If you are going to continue the celiac testing with an endoscopy, you need to keep eating gluten until it's done. It can be hard for vegetarians to keep their vitamin D levels up.   This Vitamin D  Council link has some good info on ways to boost your levels. https://www.vitamindcouncil.org/about-vitamin-d/
    • Blood results - odd
      Your ferritin was very low!  My result was a 2 when I was diagnosed.    I hard a hard time breathing and the fatigue was awful due to low hemoglobin levels.  But after going gluten free and taking iron for a few months, I quickly recovered from iron-deficiency anemia.  I still have hemologobin levels that are slightly below range due to Thalassemia which is genetic and my body has adjusted for it.   My B12 and folate levels are  super high.  My B12 is over 2000!  Yeah, I googled and ruled out cancers, etc.  Looks like some of us do not process man-made B12 often included in supplements.  I opted for natural sources of B-12 and folate and my levels have come down a bit.   Let us know your results.  Read the Newbie 101 section under "Coping" within this forum for tips.   Be patient.  It can take months, to years to feel good.  But it will happen!    
    • How do you know what's causing what?
      Welcome to the forum!   Well.....in theory you should be able to heal within a few months (grow new villi, etc.).  The reality is that it takes so much longer -- like a year or two (I kid you not!)  Why?  celiac disease can damage more than just the gut.  Depending on what was damaged (nerves, bones, etc) can impact healing time.  The gluten-free diet has a very steep learning curve.  It's not just giving up gluten.  It's avoiding cross contamination.  Becoming an expert in reading labels.  Learning to avoid foods processed on shared lines in a facility.  Then there are intolerances that most celiacs develop.  The most common ones is lactose.  Why?  The villi tips release the enzymes to digest lactose.  No villi tips?  Then you can not digest lactose.  Often this is temporary, but if you are one of the many adults in this world, you might already be lactose intolerant or might become so as you age.   Other intolerances that members often report include corn or soy.   Some celiacs react to oats, even gluten free.  So avoid oats for six months.  So, try cutting out dairy for a few days and see how you feel.  Then add in those items that have the least lactose:  hard cheese, butter, yogurt and see how you feel.   Avoid eating out for six months until you have seen some improvement.   Read our Newbie 101 thread under coping for more ideas!  Hope you feel better soon.   
    • Recovery diet, nutrition, leaky gut?
      I am having my endoscopy on Tuesday. I want to begin to heal my gut asap. I spent this morning in the ER with stabbing pain in my right shoulder blade, pain to the left of my belly button and vomiting. It's referred pain from my small intestine. I couldn't move or breathe hardly it hurt so bad. I NEED to get everything together to heal my gut asap. I don't want to ever go through this again. What are your recommendations? I've been reading a bit on leaky gut - anyone have good experience/links Or would the autoimmune diet be better? Are they one in the same? I know I am also reacting to casein and possibly potatoes. 
    • Celiac.com: Celiac Patients Could Get Gluten-free Stipend
      Celiac disease is a sensitivity to the gluten found in wheat, barley, rye, spelt and oats that causes an autoimmune response in which the body attacks ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
    • ChiaChick  »  Peaceflower

      Hi Peaceflower, Just wanted to say thank you for the chat.
      · 0 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,707
    • Most Online
      1,763

    Newest Member
    Ree8080
    Joined