Lichen Sclerosis

[TPT]

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

[Becci]

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%"

[Emilushka]

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

[TPT]

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.

[TPT]

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.

[taffers]

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.

[TPT]

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.

[TPT]

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.

[MedicMom]

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.

[Dr. B]

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.

[ravenwoodglass]

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.

[AndreaR]

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.

[wildwood]

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.

[pricklypear1971]

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.

[norcal-gf]

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:

Open Original Shared Link and Open Original Shared Link 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: Open Original Shared Link

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.

[norcal-gf]

The Yahoo Low Oxalates link is incorrect in my last posting. Should be: Open Original Shared Link

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.

[Squishyleo]

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.

[Sassbo]

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!

[ravenra]

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. 

[KCG91]

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... 
 

 

[ravenra]

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!