Start a diet in low oxalates to reverse Lichen Sclerosis!

I have Lichen Sclerosis. It’s a horrible autoimmune disease. Several years ago my OB/GYN told me I had Lichen Sclerosis but at the time I didn’t have any symptoms. But in the last two years the LS has gotten so bad I’ve been desperate to figure out this disease. After researching the web for months I finally found the answers: “Eat a diet in Low Oxalates”. Within 24 hours of starting a diet in low oxalates I began to have relief of my Lichen Sclerosis. (After a month on the low oxalates diet, the LS is reversing at a quick pace, and my itching has been greatly reduced).  How did I know to start a low oxalates diet to reverse LS? Based on the information from the VP Foundation, a Yahoo Oxalates Group, and Low Oxalates websites mentioned in the posting.

What are oxalates? Oxalates occurs in low to high amounts in a wide range of plant foods including fruits, vegetables, legumes, grains, spices, herbs, and almost all nuts and seeds. Meat, dairy, and eggs contain negligible amounts of oxalate. All of these foods are either low, medium or high in oxalates.  You can download the list of oxalates in all foods from this website: http://lowoxalate.info/ and once you join the Yahoo Oxalates Group download there most recently list.

A low oxalate diet generally means keeping your intake of oxalate from food and beverages between 40 and 60 mg. per day, depending upon your weight. Some people find they need a very low oxalate intake, while others can tolerate more. Each person needs to experiment and find their own level. To use the diet correctly, you will have to count your daily intake and be cognizant of portion sizes. (Implementing the diet requires study, counting numbers, and ongoing dedication).

How does eating a low oxalates diet solve Lichen Sclerosis? For me I have a leaky gut. Why or how did I get a leaky gut? I have celiac disease which caused me to have leaky gut. For some people there are other reasons why oxalates may be a problem for you. But if you have Lichen Sclerosis there is some reason why your immune system has been comprised and you will have to figure that out (but that should not stop you from trying a low oxalates diet).

Many people are able to process oxalates in their body without any problem whatsoever, but others absorb too many oxalates which can then link to calcium and form into sharp crystals that lodge in almost any tissue in the body causing or contributing to pain, inflammation, and other conditions (like Lichen Sclerosis).

Oxalate is a very simple sort of molecule. It links up with calcium and crystallizes under some conditions, including when it encounters damaged tissues. The crystals formed this way can be quite irritating and painful to tissues where they cause or increase inflammation. These crystals can be especially painful if they lodge themselves in places where they get in the way of the movement of other things through tight places.

Unfortunately,I could not find ONE specific website that explains all of this. I figured it out by reading ALL the websites listed below and putting the puzzle pieces together. If you have Lichen Sclerosis, it costs you nothing to try a low oxalates diet to see if this will work for you. Yes, it’s a very restrictive diet, and not easy to make the switch, but it’s WORTH IT!
There is a lot of medical literature showing that when the gut is inflamed, when there is poor fat digestion (steatorrhea), when there is a leaky gut, or when there is prolonged diarrhea or constipation, excess oxalate from foods that are eaten can be absorbed from the GI tract and become a risk to other cells in the body).

Important Website to Read about starting a low oxalates diet:
http://www.thevpfoundation.org/
(Purchase the cookbook which gives you more details on how to manage the diet, resources, etc.). Read the website for valuable information; the website refers to healing Vulvodynia but going on a low oxalates diet can relief the Lichen Sclerosis as well.

http://health.dir.groups.yahoo.com/group/Trying_Low_Oxalates/

(Join this yahoo group. This is where I found great inspiration that staying on a low oxalates diet actually work from people who have first hand experience of reversing their Lichen Sclerosis).

http://lowoxalate.info/
(This site explains a lot about Oxalates but centered around Autism, don’t let that deter you from all the great information on the site. They also have detailed food lists that are categorized by levels of oxalates; you can download in PDF and get started right away. They do talk about Vulvodynia on this page which is on this page, and then click on the tab:
http://lowoxalate.info/research.html

(By the way – steroid creams may give you some relief but it will NEVER solve Lichen Sclerosis.  Don’t let any doctor tell you this.  And actually steroid creams in the long run will not help you.  If possible don’t use them.  Take baths with ephson salts this will settle down the inflammation while your healing).

Other great websites on low oxalates:
http://alwayswellwithin.com/2010/04/30/the-low-oxalate-diet/

http://roosclues.blogspot.com/

**I started this website for people who might be searching the web for answers on Lichen Sclerosis – and hopefully this website will help you! I suffered so much with Lichen Sclerosis and hope this might help others.  It’s unbelieveable that  Lichen Sclerosis can starting reversing immediately just by changing your diet!! Good Luck!

You can leave a message or comment on this blog- however I won’t be monitoring these comments very often.  If you have an urgent question about a low oxalates diet you should join the Yahoo group mentioned above.  It’s an active forum with people who check the forum often!

TIP: Don’t start the low oxalates diet until you’ve read all these resources I mentioned!!  Initially the restrictive diet is a shock to your system.  If you have been eating a very high oxalate diet, especially for a long time (months to years), the symptoms at the beginning of the diet may be more severe than for someone who was eating an ordinary diet. It may be best for you to cut out the extremely high oxalate foods first for at least a week before starting to eliminate the medium oxalate foods. This way you can work your way gradually into a completely low oxalate diet.

***Update 2/18/12** I am also on a gluten free diet along with the low oxalates diet.  Most likely you may need to go gluten free as well… but if you have LS that is really bad and you need immediate relief – start the low oxalates diet first, and slowly start the gluten free after a couples months.  It might be much to start the diets at the same time.  Of course this is my opinion, and I’m not a doctor… Just from my own personal experiences.

***3/2/11 Started a Paleo diet (and already on a Gluten Free, and Low Oxalates diet).  And figured out I have low stomach acid. Started taking HCI tablets with pepsin with every meal you have protein with – O.M.G. what a difference!

***Update 3/11/12** Read all the comments below – they contain more updated information.  New links have been posted on the sidebar of this blog.

***

Disclaimer:

When you read anything on this website, you must remember that I’m not a doctor (so there is some hope for us, after all), nor am I a trained healthcare professional.  This website is for informational purposes only, and you should never rely solely on the information here if you have any serious healthcare needs (i.e.: find a trained professional).  You remain responsible for what you do with this information, determining for yourself what is right or wrong for you. 

Since I’m not a licensed physician, I can’t diagnose or prescribe for you; and any application of the information on this site constitutes the explicit waiver of any liability on my part.

34 thoughts on “Start a diet in low oxalates to reverse Lichen Sclerosis!

  1. Recently diagnosed with LS at age 62. I am following my intuition and knowledge base to date, and when I came across your blog it hit a chord with me. So I will be making my own search on this now using your suggestions for a start. Thank you for taking the time to share your experience.

  2. Anna,
    Thank you for your comment – I’m so happy you found this blog. I’ve been on the low oxalates diet for almost 3 months now and the LS continues to reverse. Even areas that were atrophying have been healing. Taking a bath in ephson salts almost every day keeps the inflammation & itching away. Good luck to you! -Admin

  3. Hi all – I too have been making some excellent progress with my LS – Life was hell only about 6 months ago, then I came upon Histamine Intolerance. I realised what I had thought was allergies over the last 40 years, was actually histamine intolerance. So I set about finding a solution. Diet was the immediate course of action and brought about releif within 12 hours. A low histamine diet, and then I discovered Histame capsules available on iHerbs or Amazon. These two things I would say have brought about an 80% or more improvement. I’ve got my life back. I’ve gone from no symptoms in the day and just minor itching at night. All sores have healed. Itching over my back has gone. Still have some minor itching in vulva area. White spots have disappeared from my mouth. .Will now look into Oxalates too, never rest on your laurels girls, all things are possible.

  4. Thanks for your post. I’m not familar with a Histamine Intolerance – but I just googled the diet and it seems very similar to a High Oxalates diet. I’m wondering if you were adhering to a low oxalates diet and that’s why the LS was reduced. Do you have a leaky gut? This is the main reason why this all possible. I still don’t understand why mainstream doctors are not informed on how to deal with LS. Giving you a cream and sending you away – they don’t look at the root problem and why its happening… Okay don’t get me started. The good news I believe LS can be reversed (depending on how much damage has already been done). Best of luck!

    • I had lichen schlerosis about a year and a half ago. It had gotten progressively worse for years before that. I finally went to the doctor who gave me the cream. He said I would have to use it intermittently for the rest of my life. I used it for a couple of weeks and the lichen was gone and has been gone since. I have not changed my diet much, but may have eaten more unprocessed foods, including more green smoothies with spinach, etc. I’m still wondering what really happened to clear up the lichen. I do have some problem with skin flexibility in the vagina area, though. Not flexible enough to have intercourse. I’m wondering if this is a permanent damage or if it can be reversed, do you have any idea?

  5. I haven’t gone into the High Oxalates diet thoroughly yet, but I do intend to. It does sound similar, and I’m always seeking further improvement. I feel I have climbed a mountain over the last 18 months and the Histamine Intolerance diet and Histame capsules were the first real breakthrough for me. I suspect that I do have leaky gut syndrome, but honestly doctors in the UK are totally clueless about all of this, and I wouldn’t lower myselt to even ask my doctor anything. He never listens to anything I say, and I have only got relief by researching everything I can. I feel very happy in the place I am at the moment, as it is infinitely better than where I was 1 year ago. I just wanted other women on here to realise there is hope, we can beat this together. Actually I hadn’t heard of Histamine Intolerance myself until I put the word Histamine into the search engine. Also I do find that I don’t have to be rigid with diet, as long as I don’t eat too much. Also drinking extra fluid tends to dilute the histamine. I do think that LS has to be attacked from the inside by dieting rather than putting various expensive creams on.

  6. Just a small addendum to my last post. There is histamine in everything we eat. Our bodies should have a supply of an enzyme called Diamine Oxidase. This enzyme neutralises the histamine in most people. But some people don’t manufacture enough of this enzyme. The result is numerous bewildering symptoms, include skin erruptions, inflamation and many other problems. The Histame capsules contain the enzyme Diamine Oxidase. I find taking them before bedtime gives me about 3 hours relief from itching. If I stick to a diet, I don’t need to take the capsules so I keep them for emergencies as they are quite expensive. I hope this may be of help to someone.

  7. I am so glad to have stumbled upon your blog. I followed you here from another LS site and everything you have said makes sense. I was seeing some improvement after I began watching what I ate, and using Emu oil topically, but I never really made the connection to exactly what I was eating. I realize that my “good diet” consists of almost entirely high oxalate foods. Grains, nuts, fruits, tea, green veggies- all things that I started to eat an enormous amount of and coincide exactly with my recent flare up. I will have my oxalate urine levels checked. Until then I will reduce and monitor my high oxalate food intake.

    Please keep up the blog updates. :-)

  8. Diana,
    I’m so glad you found this blog as well!!! All those wonderful healthy foods you mentioned that are super high in oxalates – are like poison to you body when you have a “leaky gut.” When your gut is healthy these are all wonderful foods, but until you can resolve the gut issue they are toxic to your system. Also, once you read the info from the resources mentioned above they will tell you to start taking Calcium Citrate before each meal – take 20-30 mins before a meal. This helps carry the oxalates out of your body – it really works! Leave me a comment and let me know how it goes! Best of luck!!

  9. This is a lifechanger for me!
    As a male with this disease I felt so helpless
    I had phimosis and had to have surgery.
    I had contemplated ending my suffering with suicide.
    It was that bad. I am now hopeful that I can find relief and
    pray to god that I can please find some comfort again.
    I am attempting to get as much info as I can so I can walk
    the right path for healing. I want so desperately to heal.
    I need the best way to get started. God bless you for
    posting this. I am forever grateful for this glimmer of hope.

    • I pray you find healing as well. Here’s more additional information. Most likely you have leaky gut and will need to resolve that problem. Here’s additional information I’ve uncovered about how to fix a leaky gut: http://jackkruse.com/the-leaky-gut-prescription. Going on a Paelo diet seems to be the best solution according to Jack Kruse, and Robb Wolf: http://www.robbwolf.com. Other good resources: http://paleohacks.com (search for leaky gut conversations). Start cooking with coconut flour & coconut milk only. When your on a low oxalates diet & Paelo diet no other flour is safe (Almond flour is too high in oxalates). You might try to find a good a functional medicine doctor in your area that specializes in leaky gut. Functionalmedicine.org. There is HOPE!! God bless!

    • I’m sure you will make it, I was in that same place you are in, only 9 months ago, and now I have made such positive improvement and got my life back, so please don’t despair, as I am sure you can too, with the diet, that I think is the most important thing. We are all in this together, and must report anything we get an improvement with. I am using a combination of the Low Histamine Diet and the diet recommended here and it is working very well. I also use Histame capsules and occasionally allergy pills. I do think everyone is different and we have to work at finding what to ingest. Good luck.

      • Wendy thank you for reporting back your progress – so happy to hear you’ve made more improvement!!! See my comment above posted today. In the last week or so I’ve found more information about a leaky gut and the reason the LS can happen in the first place. And steps to take to get rid of the leaky gut. I just started the Paelo diet about a week ago – I thought I couldn’t do both a “low oxalates diet” and Paelo but you can – it’s just more challenging. But I’m willing to do what it takes to resolve my health. Definitely check out the links and info above. Take care!

  10. Pingback: Histamine Intolerance | Histamine Intolerance

  11. Hi there

    I am male and was diagnosed with LS in 2008. I believe the problem started in the scar tissue left after an operation to correct phimosis (it could be that the phimosis was caused by LS but I don’t think so). Around the same time I started with chronic diarrhea which continued unchecked for possibly 12 months or so. I too was deeply frustrated by the medical establishment’s reluctance to find a cause for this problem (though this is not something exclusive to LS) and started upon a path to heal myself. I refuse to believe that humans are so imperfect that a disease like this is a normal part of the ageing process. How can it possibly be? I began a paleo diet in late 2009 and, I am pleased to say, have not suffered any further outbreaks of LS. I should also add that other areas of my health are vastly improved too, including the diarrhea which would seem to have been indicative of leaky gut. I did have a response from Loren Cordain (one of the originators of the Paleo diet concept) http://thepaleodiet.blogspot.co.uk/2010/04/paleo-diet-q-lichen-sclerosis-stevia.html

    The steroid cream that I used, whilst correcting the problem in the short term, has caused additional problems (not insurmountable) and I would advise some caution with these creams – though I don’t deny that they can be useful in the initial acute stages.

    I did try (via the Yahoo group) with limited success to persuade other sufferers that diet is probably the only true cure for this problem. I think it is really important that the message gets out there and I think this website is a fantastic resource for anyone unlucky enough to be diagnosed with this disease. I would be happy to answer any questions about my lifestyle changes – the links already provided however are excellent starting points.

    Simon

    • Hello Simon, I am also male and have just been diagnosed with LS. Is it at all feasible that LS could be brought on by switching to a Paleo diet? It just seems uncanny that my LS started soon after introducing replacement foods that happen to be high in oxalates; such as carrots, cashews, beetroots and spinach – as well as vast quatities of eggs I might add – soon after starting a Paleo diet. Any advise on how to get rid of this would be greatly appreciated. Thanks.

      • Rob – it’s not the paleo diet it’s the high oxalates foods that your eating. I’ve been on Paleo for more than a year and it has helped my autoimmune issues, but so far it has not solved my leaky gut. But I had to remove any high-medium oxalates foods otherwise that makes my LS worse. To download the latest oxalates list join the Yahoo Group (http://groups.yahoo.com/neo/groups/Trying_Low_Oxalates//info) and download from the excel spreadsheet from the site. Also, my guess is you have leaky gut this is why you have LS. Check out PaleoHacks for ideas about solving your leaky gut, and my recent blog post here: http://lichensclerosis.wordpress.com/2013/08/31/steps-to-fix-your-leaky-gut-and-solve-lichen-sclerosis. Best of luck to you!

      • Hi Rob

        In all honesty, I’m no expert. My thinking is that I probably had leaky gut and that my change in diet was enough to slow this down and/or to reverse the damage – I can’t say I’ve noticed a problem for me with so called high oxalate foods. Could it be that asymptomatic LS was already lurking in the wings in your case and it is coincidental that it happened to start when you changed your diet? I must confess that I don’t now follow what would be called a strict paleo diet. I just tend to eat whole foods and stay away from gluten grains and sugar. It did take some time for positive changes to occur after I started the diet originally so I guess if you feel like it, you could give it a bit of time to see how things go for you or like the moderator said try a more low oxalate approach – I guess it is about experimenting with what works for you. I wish you all the best.

        Simon

  12. Im new to vulvodynia, but am wondering if this is what I have been suffering from for many many years. What amazes me is the connection to autism. I have a 19 year son that I “brought out of” autism by GFCF diet among other things. Fascinating.

  13. Amazing, I went for my yearly GYN exam feeling fine routine as usual. I am 52 & menopausal. While examining me Dr. says hmmm…….He proceeds to tell me I have Lichen Sclerosis. Says come back next week for a biopsy to make sure it was not pre-cancer. He was pretty sure it was not though but just to be on the safe side. I was still very scared and very sad. He also said, “it will not just clear up”, he was very sure about that ! When he was leaving the exam room he said, “I’M so Sorry” (just like that.) Being new to this disease I never heard of I literally researched every moment I had. Reading everything I can to be pro active. I immediately began to re evaluate my diet and also found out that oxalates & gluten are also related to any skin related problems along with yeast. I was already keeping my sweets and sugar low just to be healthy. Now for the amazing part……After 1 solid week of closely monitoring everything I ate I scheduled the biopsy exactly 7 days later I went into the room ready for a painful procedure. Dr. looks looks more, hmmmm……………..I don’t see anything. He was befuddled and says well I can’t biopsy something that is not there. I was elated and relieved. For anyone reading this there is hope. Also oatmeal soap (Aveno) on the private area only. Perfume and dye free laundry soap and no softener on underwear. Learned all of this in 1 week and I am happy to say I am blessed. And yes a lot of praying. Just thought I would share this if it helps anyone out there. Sounds hard to believe but it is true. I will keep this website in my radar and continue to educate myself.~Thank-You so much~

    • Marrianette thanks for sharing your story. After 8 months of being on a low oxalate diet I have learned the root cause of LS is having a leaky guy. So please be aware – your LS could come back if you don’t address the leaky gut issues. Best of luck!

      • Thanks for the tip on leaky gut I will continue to research. We are what we eat or don’t eat for that matter. Thanks for the response. Have a blessed day.

  14. I can’t believe I am reading all this. I was diagnosed with LS in my 20′s I’m now in my 40′s. I have had fibromyalgia for over 20 years and live with it every day and didn’t want to believe that nothing could be done to relieve the constant aches and pain. I have to take pain killers to sleep at night. I found out also in the past couple of years I have leaky gut. To read that all these can relate to oxolates and something can be done, almost makes me want to cry. I’ll try to read all that I can about all the information provided and I want to thank you for saving my sanity.

    • AW – thank you for leaving a comment. I’m so happy you found my blog and that the information that might help you with your health challenges. It’s been a year since I started a low oxalates diet, and I’m doing so much better. I still have LS (although alot of it reversed) and still have a leaky gut. (The LS will never go away completely until the leaky gut still exists). I do think I figured out why my leaky gut has not healed (related to a type of sleep apnea call UARS). If your not already on a gluten free diet start there, and then I’d suggest either a GAPS or Paleo Diet – these may help your fibromyalgia immediately… and also keeping a low oxalate diet at the same time. It seems like a lot, but it’s doable once you get the hang of everything. Other immediate resources is the book The Paleo Solution & website PaleoHacks.com and the low oxalates yahoo group. Best of luck to you!!

    • @Aw stay strong. The thing with our problems is we let them take over us. Instead let’s focus on not letting our illnesses rule us. I know some things are easier said than done. But, think about it. In my case I decided to not let my leaky gut take over my life. Instead I focused on reducing stress and making changes to my diet depending on foods that agreed with me. I has helped a ton.

  15. I recently added Quercetin to my list of supplements for my LS, it has to be a high dose 900 x 2 capsules daily or even more if necessary. I have found a further huge improvement with the itching. They are not expensive 180 capsules for about £20 on ebay. Hope this might help someone else. We are all different.

    • Thank you Wendy for sharing this info! I have not heard of Quercetin but will research this a bit and try it. I’ll do anything to stop my itching, currently I have to take alot of extra strength tynenol to control the itching. I’m so against taking tynenol but sometime it’s the only thing that helps, besides take a warm bath to stop the itching attacks. I wish you good health!

  16. dear thanks for information,
    I am 25 year old male from India. few days back I have visited dermatologist because I having white round marks on my back side, nearer to neck. before six months it was just in 1-2 cm2 area of my back. but now its grown up to 5-6 cm2 area .I don’t have any itching problem nor I having any marks on my genital area. doctor has diagnosed it by physical examination that I might be a victim of LS .He advise me a paste and HCQS tablets for few weeks. after few days he will take biopsy to be sure on diagnosis.

    I am scared , if it is really LS.. but I am hopeful, by reading many article on LS, I found that this marks may disappear automatically if I am able to control on my diet.

    I need your advice
    nd thanks for nice post

  17. Hey there,

    I hope that you read this, the last comments were written a while back. I want to start both the paleo diet and the low oxalate diet, my question is: do you have a list that says which foods are allowed/ are both paleo and low in oxalate ? I`d really appreciate an answer,

    thanks for sharing your knowledge and I`m happy that you got rid of LS !

    greets, Ferdi

  18. Wow…interesting. I started with LS a few years ago on the top of my chest….my doctor seems pretty well informed about LS, but he’s never mentioned any of this. I’ve had CO2 treatments and shots….but considering the extreme amount of area that I now have it, I can’t imagine how bad another treatment could be. Last August I started a fairly vegan diet…but also gluten free, sugar free (although I’m allowed Agave…and i didn’t see it mentioned on the lists here). I stopped the creams to see if this diet might help. i also have arthritis and nasal allergies. Instead of better, my rashes have spread even more. But I did notice that during a week vacation (way way reduced stress) my rash appeared better…but I also changed my diet during the vacation.
    But I see that many of my “healthy” diet standards are HIGH on the Oxalates list. ACK….I have a doc appt this Friday with my Dermatologist and I am going to discuss this all with him. I think it is definitely worth a try. I am pretty much covered breasts to knees, front and back…..recently found a spot on my nose and wrist….oh geez. I’m 58…I have a stressful job….but do my best to reduce it as much as I can.
    Vicki

    • Let us know what your Dermatologist said… but most mainstream doctors do not believe that LS is treatable or related to oxalates. That’s a problem. Make sure you join this group to get the latest information and research: https://groups.yahoo.com/neo/groups/Trying_Low_Oxalates/info I can tell you firsthand that if you reduce your oxalate levels, you’ll reduce how many oxalates your body is producing and usually reduce the symptoms. But you’ll need to get to the root of the problem to actually get rid of LS. Don’t take steroids – it will make your problem worse in the long run. Good luck!

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