My Experience with the AIP to Treat Lichen Planus

May 26, 2012 in Categories: , , by

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Many of you have expressed your frustration that you are not seeing improvement in your autoimmune disease despite following the Autoimmune Protocol.  I have tried to give you a realistic timeframe for how long healing may take to help you find some patience with the process.  I also thought that recounting my own experience with the Autoimmnue Protocol may be helpful for you. 

As I reflect on the health conditions I suffered from in my early-twenties to early-thirties, what once seemed like disparate conditions suffered by a genetically weak me, I now clearly see as the linear progression of inflammation and autoimmune disease resulting from a gradually worsening leaky gut, developing adrenal fatigue and developing metabolic syndrome.  Rather than being the result of weak genetics, I now see it as the result of poor diet, extreme stress, and a misguided exercise routine.  My chief autoimmune complaint is a skin condition called lichen planus.  Purple-red, ridiculously itchy to the point of painful lesions in the mucosal layer of my skin appear predominantly on my ankles and wrists, but also on my shins, forearms and even torso.  Although I have never been tested, it is likely that I have lesions in internal mucosal tissues as well, namely the gut mucosa.  If this is the case, this means that my leaky gut has caused inflammatory lesions in my gut which would make my gut leakier, definitely a vicious cycle.

I have had lichen planus lesions for a little over 10 years.  Many (but not all) of them disappeared while I was pregnant (autoimmunity is suppressed during pregnancy) and nursing (and I was pregnant or nursing for 5¾ years straight), but they returned with a vengeance last summer when my youngest daughter night-weaned and suddenly went from nursing 12 times per day to only once or twice per day (this doctor-ordered forced night weaning is a topic for a future post).  They got even worse in December when my daughter weaned completely (self-weaned, phew!).  The standard treatment is potent steroid creams applied 2-4 times per day.  Stubborn lesions can be injected with steroids and oral steroids are always an option.  No doctor ever mentioned that this was an autoimmune condition (and I had 5 different PCPs in 5 different cities during this time). 

Researching solutions for my lichen planus brought me to paleo.  The dramatic improvement I saw to other health conditions inspired me to start this blog.  Performing research for this blog brought me to the realization that I had an autoimmune disease and that I should be following the Autoimmune Protocol.  I can’t tell you how thankful I am to all of you for your part in this discovery.  I am optimistic that I have finally figured out what foods and other lifestyle factors my body needs to be healthy, and that is some very powerful knowledge.  Unfortunately, I suspect that I will never be able to eat eggs, almonds, or tomatoes again.  I do seem to handle the occasional egg yolk, small amounts of spices that are ground seeds, small amounts of paprika which is from the nightshade family but is quite low in capsaicin, the occasional square of dark chocolate as long as it doesn’t contain soy lecithin, and the occasional dose of macadamia nuts which are low in phytic acid and polyunsaturated fats.

I started the autoimmune protocol at the beginning of January, with frequent slips in my resolve over the first few months (gradually getting better at really following the Autoimmune Protocol). It’s hard to be surrounded by tasty paleo baking, even feeling compelled to continue experimenting with recipes using ingredients I can’t eat.  But even though I was struggling with compliance, I did see some improvement in my lichen planus lesions, albeit small and extremely slow.  I also watched my weight creep up.  I’m not sure if my weight creeping up was a result of not getting enough sleep during this time, mostly not eating breakfast during this time, or eating too much fat and not enough protein during this time—but I suspect that allowing myself to gain some weight was critical in also providing my body with the energy and micronutrients required to heal.  And as I got better and better at avoiding eggs, nuts, seeds, and nightshades, I noticed more easily the negative effects when I did eat them.  My lichen planus became an excellent litmus for foods I can’t handle.  These obvious reactions made it easier to avoid those foods.  And as time as past, I have found more foods to eat and stopped skipping meals because I simply couldn’t think of what to make. 

The last 3 weeks have seen an absolutely profound improvement to my lichen planus.  Other than the one lesion on my ankle that has been there the most consistently and for the longest time, which now looks like a scar (actually, it might be a scar!), you wouldn’t notice anything amiss about my ankles, wrists, shins or forearms (unless you were looking really closely, but that would be weird think for you to do!).  I can still see the dry, inflamed skin that still needs to heal.  It’s not all the way there, but it’s such an amazing difference (all with no steroids too!) that I finally have that confidence that I am eating the right way.  Oh, and my weight has started dropping again too.  It could be that I’m sleeping better, eating breakfast, and eating more protein.  But I think that reducing the inflammation in my body, which is allowing my hormones to normalize, is a critical component of this weight loss (the real test will be if my weight drops below my lightest, which is only 2 pounds away now).  I should have taken a “before” photo, but who wants to document their ugly ankles?  This is a current photo of my ankle though (I literally just took it!):

 My husband was shocked at how great my ankles look when I pointed it out to him about a week ago.  If you want to see what my lichen planus looked like before, you can check out this online pamphlet from the American Academy of Dermatology  (the front photo looks like my smaller lesions; I had many lesions that were ½” in diameter and even one that was over 1”). 

What has changed in the last 3 weeks to account for this sudden improvement?  There are a couple of other things that I think have really helped, beyond finally getting to 100% compliance with the Autoimmune Protocol.  First, I started getting alot more sun exposure.  I try and always at least roll up my pant legs to my shins and wear a tank top.  I try and go outside with my kids at least 30 minutes per day.  The beach trip for Mother’s Day weekend gave me LOTS more sun exposure than normal.  Our neighborhood pool is now open and I am bringing the kids for a swim at least twice per week.  And I am still taking 10,000IU of Vitamin D3 a day (which my doctor thinks is extreme).  I am eating alot of organ meat, especially beef heart which is rich in collagen (which means rich in proline and glycine, those amino acids that are so vital for healing skin and connective tissues).  I eat organ meat for at least one meal every day.  I am drinking more bone broth (1 cup most days).  I am mostly eating grass-fed meat and wild-caught fish (still some conventional poultry and pork in my diet, but I’m doing my best with my budget).  I have stopped sprinting for now, thinking that it might have been too much stress on my body, but I am still walking, playing with my kids, and going to 3 yoga classes per week. 

Was it all these tweaks that made everything come together for me?  Maybe, but I also think that those 4 months of not seeing much improvement were actually important.  I suspect that, during those 4 months, my gut was healing, my body was gradually decreasing antibody production, and inflammation was resolving.  I think it took that time for my insides to heal to a point where I could see improvement on the outside.  As an aside, I have noticed that my mood has been noticeably better these last few weeks too (more vitamin D or less inflammation in my brain or both?).  The Autoimmune Protocol is working for me.  But it’s tough and it’s slow.  So, when I advocate patience, know that it comes from experience.

Comments

Thanks for posting your story. I’m currently dealing with treating adrenal burnout and hoping to heal severe seasonal allergies. Questions: What about the GAPS diet protocol for gut healing? Do you personally agree with using that to determine one’s ability to handle certain foods? Also, I have severe seasonal allergies (that are now year-round). That is the only autoimmune condition I have (as far as I know). Would you consider that a reason to do the autoimmune protocol or are we talking about more severe conditions?
(Thanks again, I love how informative your posts are!)

I think that the principles behind the GAPS diets are quite sound, and I recommend aspects of GAPS in conjunction with paleo for treating Small Intestinal Bacterial Overgrowth. I like the focus on bone broth and non-starchy vegetables especially.

Your severe allergies may improve once your adrenals are working properly again with just straight paleo. But I think you would likely see faster improvement in both adrenal function and in your allergies if you went full autoimmune protocol for a short period of time (maybe 2 months?), especially focusing on lots of vegetables and omega-3-rich protein sources.

I’m curious what your protocol is for treating the adrenal burnout?

I found my way here via a registered dietitian who mentioned Paleo then I started searching. I have been on the Autoimmune Protocol.. (except for a few glitches in selfish wanton unbelief), for only a short few months. I have found my allergies to be so much better. I can now pet our dog and dont wheeze and my sinuses are much better. Mostly my indigestion that was 24/7 was causing abnormal gastric re-flux that at one point I realized it was contributing to my sinus, ear and upper respiratory. I am off of the prescription for that and my diabetes meds are also gone now. But my ailments centered around unusual pain. If I eat wrong foods I actually hurt. And I have found the autoimmune diet to fit perfectly for me! And I tried so hard for it not to be true. And I ate things like tree nuts … well so many say “unless you are allergic they are great for you” Well NO, I would have taken for ever figuring out all this without this Paleo Mom Autoimmune Protocol and the warning against some items.. I feel it has saved my life. I was curious though, where does one go on the web to match symptoms with an Autoimmune condition?

I am working with a doctor (of Chinese Medicine) and following the Nutritional Balancing protocol. I had a hair mineral analysis to determine the level of my adrenals and found out I was in ‘burnout’ — low in all of my minerals (also high in mercury and aluminum).

The protocol is: I can’t have any fruit or sugar of any type. (they do allow stevia & xylitol unlike GAPS/Paleo). Also– I’m eating high protein and low carb–no gluten (mostly grain free)–winter squash and carrots are okay. I’m taking heavy doses of minerals (specific to this program), kidney support, enzymes, probiotics and taurine (along with fermented cod liver oil). I’m supposed to lie down flat as often as possible and pretend I’m on perpetual vacation (of course I have a nursing toddler and a 4 year old–so not that easy!)

I know I need to heal my gut too. I’ve been meaning to go back on GAPS (which I was on last year at this time). I need to go through the Intro diet (which I didn’t do fully because I was nursing more often then). I’m REALLY resisting it! The Autoimmune Protocol sounds even harder! I think I just feel so deprived …I’ve been limiting my diet for so long… (whine!) But it’s not just the deprivation–it’s also the expense of good quality meat and the amount of food preparation. I’m already so spent (hence the adrenal burnout) that making absolutely everything from scratch doesn’t leave me a moment to lie down in the day. (which I can only do when both kids are sleeping for a short time anyway!).
Sorry for rambling… I really appreciate your feedback and posts!

Sounds rough! I guess the only pro for going full autoimmune protocol is that, even though you would feel even more deprived, you might be able to speed up recovery (of course, there is no way to test that). and even though the meat is more expensive, if it works, you could save money on supplements (you also get to eat some fruit on AIP). But I think your approach will work (although stay away from the stevia!!!!). The only things that I would add is to make sure you eat every 4-5 hours (the whole spacing out meals thing is not good for adrenal fatigue) and do what you can to maximize your sleep (quality and quantity). I hope it works for you (and quickly!!!). Keep me posted on how you’re doing and always feel free to ask questions.

A couple of reasons. Sugar substitutes can mess with your insulin (your body releases insulin in response to the sweet taste in anticipation of glucose, but then there isn’t any glucose). The structure of stevia closely resembles a steroid hormone, and there just isn’t any long term safety data on frequent consumption (just because it is derived from a leaf doesn’t make it safe to eat, even though people use that rationale alot). Sugar alcohols like xylitol can be gut irritants.

Cinnamon can trick your taste buds into thinking something is sweeter than it is (and as far as I know, this doesn’t seem to trigger insulin release). You could try mixing some into the top, fatty half of a can of full-fat coconut milk that has been sitting still for a while as a nice treat. Also, Make It Paleo has a neat recipe for truffles made with mint oil and coconut cream concentrate. Here is the link to the recipe: http://beta.primal-palate.com/recipe/chocolate-and-peppermint-swirl-truffles/ And I’ve heard good things about the 99% cocoa Bernard Castalain Chocolate Noire Infini bars. I hope this helps!

I am so happy to find your post! I was recently diagnosed this week with Lichen Planus, but have been aware of it for a couple of months. I am toying with the idea of going full on Paleo to help treat it. I am about 85% Paleo right now. I will be looking at your post you linked to regarding the AIP. Thanks for the information!

I have had oral lichen planus for about 1 1/2 years now. I’ve been considering the GAPS diet. What are your feelings regarding total remission or healing using the AIP or GAPS diet? Do you think it can be done or do you think you will need to follow this diet for the rest of your life see the improvements that you’ve seen?

I think either GAPS intro of AIP (which are pretty close to the same thing) are effective at controling lichen planus in conjunction with getting lots of sleep and vitamin D. I’m still on the AIP. I have reintroduced some nuts successfully, but every thing else still seems off limits. I don’t think the whole thing is forever for everyone. But I do think it’s at least a few months, if not a couple of years, long commitment. Probiotics seems particularly important with skin autoimmune disease and I’m experimenting with some soil based probiotics now.

I have oral lichen planus. It acts up frequently. I was on GAPS, and it started to get better, but I felt sluggish, so I stopped. Now it’s back again. It only took 7 days. So, I’m back on GAPS, but I cannot a lot of foods. My skin is fragile inside my mouth. Citrus fruits bother me. I just ate a peice of organge no bigger than a quarter. I forgot that I cannot eat that. My cheeks and gums are sore and swollen to the point where all I can eat is pureed food like butternut squash or celery root and some bone broth. I love your blog. I have researched all over the internet to find a cure for this. You have posted the most thorough information that I have seen and the way that is is presented and layed out is a way that I process information. I’m so very grateful that you have done this. Thank you.

Sarah,
Do you mind me asking about your lichen planus. Did you have it on your nails also? I was recently diagnosed, but I have it on my scalp, eyebrows and toenails. Did you ever try any “conventional treatments” ? Thank you so much for your blog. The information you have shared with us is invaluable.

I get it on my wrists, ankles, forearms and shins. Before paleo, I tried a couple of prescription strength topical steroids’ and used to wrap my wrists and ankles in plastic wrap to increase absorption of the steroid. I was pn oral steroids a few times, but mostly for breathing/asthma issues rather than the lichen planus. Now, I use coconut oil and that’s it (also completely a symptomatic in terms of my asthma).

I was Dx with Lichen Planus in my mouth about 2 years ago. Then two months ago, I had it in the vaginal area (which is now gone – thank God) and in my scalp. My scalp still bothers me some but not as bad. Now since reading here on your blog, I think I have it under my fingernails as they all look like they have a fungus or ‘something’ under the nails. I have seen a dermatologist for everything but this new condition with my nails. Was put on steroid cream/ointment. So does coconut oil help with the lesions like I had on my feet and ankles?

Hello,

My littley 5 y/o boy was just diagnosed with Lichen Planus its on his feet and arms. He also has eczema. The eczema was not well controlled to start, and now we have the Lichen Diagnosis. I’ve tested him for allergies, he doesn’t have any to food and only to blooming trees.
I feel terrible for him, I know I need to to do something beyond steroids. Topical steroids are not helping. I am not sure what the trigger is for him, but I know that we have to do something. I would really appreciate any guidance you might have.

No. That’s what I am confused about. Should I do the autoimmune protocol? Or just the paleo.
Also, I read an entry on your site about going to a natuopath to get tested for food intolerances.
I am overwhelmed because there are a lot of options.

I would start with a standard paleo diet and see how that goes. It’s a nice stepping stone to the autoimmune protocol but also might be sufficient to see substantial improvement on its own. Also making sure to include more bone broth, organ meat, fish, and a source of probiotics (either fermented foods or a supplement) will give you the best chance of seeing improvement. I’d give that 2-3 months before tackling the autoimmune protocol. Good luck!

Questions for tamara and paleomom:
Hi, how is it going? Has your son found any relief? My 3 yr old daughter suddenly broke out all over her stomach and legs last month and i feel horrible! I found your entry (thank u paleo mom!) by googling lichen planus in kids. Any tips would be so appreciated. Dermatologist not helpful at all – no cure and no treatment but itch cream – translation – your on your own.
Do you give your son any dairy? I am willing to try this diet, i dont know much about it like where do kids get calcium/bone growth needs on paleo diet? Did u have to go full AI paleo?
After late nights researching, finding this article about your (paleomom) experience has given me hope.
Thank you!

Hey Paleo mom, my name is Allen House I am a 28 year old man and I am currently living at Ft. Benning GA. I have been suffering from LP for about 8 years now and it has been awful. Luckily I do not currently have Oral LP, but what I do have sucks! It first appeared in 2005 and I thought that it was something that I had gotten into while I was conducting training in the field. I went to the dermatologist and they took samples and told me they were not sure what it was. So for about 7 years or so I just did my best to ignore it and it was just predominantly on my shins heavily and would subside sometimes for a few months at a time. Well about 7 to 8 months ago I guess it decided to have its way with me :( What I had on my shins just went beserk and covered almost all of my legs. It is now all over my arms and it is on my stomach and back. The parts that are on my arms and stomach and back are not as sever as what is on my shins. My arms and legs kind of look like I have really bad heat bumps. My shins are terribly itchy to the point that I create sores some times all over my legs because I can not just resist the itching. When I first found it in 2005 my dermatologist put me on a powerful steroid cream and had me wrap my legs with ace bandages, it did not seem to help at all and I did that for about 3 to 4 months. But what it did do was now my shins and the skin on my legs are very weak. If I bump into anything with my legs the skin just peals right off. When I had the flare up about 7 months ago I went back to a dermatologist here at Ft. Benning and he informed me that I had LP. He put me on some type of medicine that I believe they put people with psoriasis on. Basically it makes you sensitive to the sun lowered night vision and other crazy side affects like that. I took that for about a month with very little results other than having super dry skin. Being in the Army I can not afford to have decreased night vision so I stopped the medicine. I do have some of the same problems on my private part but I have yet to talk to the dermatologist about that. It is kind of similar to what is on my legs other than not near as severe. The bumps on my arms are the typical small bumps that are shiny and do scale a little. But on my legs and my private the spots are like large rings that are shiny and do scale. My legs being by far the worst and the worst looking. If anyone else out there are having the same issues and or have had this similar stuff happen to them please offer as much advice as you would like. Because I have read that we can not be cured of it be damn there must be some kind of relief! Please Help! Sorry this message is so long and thank you for your time to read this. I type really fast and wanted to share my experience with others to see if I should go to a certain type of dermatologist that might specialize in LP. I have also ready about LS (Lichen Sclerosus) and I am not sure if I might have that or maybe both I just do not know. I think the hard part of the paleo will be that I am in the Army and I work so much and I am always on the go. Alot of times when in the field we can only eat what we are given. I am also very very picky and trust me I dont like that about my self. I have not eaten vegetables since I was a kid :( If it isnt the taste I dont like it is the texture. From the picture on you ankle that is exactly what I have except on my shins it is like that times a thousand :( Any suggestions would be so very helpful. Thanks sorry so long again lol.

Oh man that sucks! Mine started as a few patches on the inside of my wrists (could be hidden with a watch and bracelet) and my ankles and stayed that way for a long time. Every time they flared, they would spread. The last time they went all the way up my shins and forearms, with a few spots on my torso too. I also at one point has super powerful steroid creams and wrapped my ankles and wrists in plastic wrap for sleeping. And I don’t think it helped much either. Sigh.

So, I can’t recommend enough addressing diet, stress and sleep. In terms of diet, I would recommend two things above all else. Going gluten-free as much as you can (I know you won’t always have control over this) and even more importantly focusing on nutrient density. This means eating lots of organ meat, fish, shellfish and vegetables (okay, so maybe you can try a different way to cook them, or smoothies, or green juices or grind them up and hide them in a burger or something to get yourself to eat them!). Regular meat and fruit and good too. I would do whatever you can to keep your stress levels managed and prioritize getting as much sleep as you possible can. Then, whatever else you can do as part of the autoimmune protocol is going to be worth while. But nutrient density and sleep are the most important. You might try a collagen supplement (I like Great Lakes http://www.amazon.com/gp/product/B0091MQ5IE?ie=UTF8&camp=1789&creativeASIN=B0091MQ5IE&linkCode=xm2&tag=wwwthepaleomo-20), a probiotic (I like Prescript Assist http://www.amazon.com/gp/product/B0049NRWHS?ie=UTF8&camp=1789&creativeASIN=B0049NRWHS&linkCode=xm2&tag=wwwthepaleomo-20) and a digestive enzymes with your meals (I like Enriching Gifts http://secure.ttpurchase.com/D410530F-1E0B-90B3-0E0C8CEEE54A3E8E but I hear that NOW Foods Super Enzymes are great too).

There may be no cure, but you can put this disease into remission, which feels like the same thing. Hang in there!

Thanks so much for your reply! This info is so much more than any doctors have given me. To think I have lived the last 8 years with just dealing with it and ignoreing it haha. O boy the stress part might be the onlything I wont be able to fix haha my life is always stressful. If it is not normal life problems then the Army is trying to make us tougher and stressing us on purpose haha. I really think stress may be one of the main causes of it flareing up about 7 months ago because things were really crazy. And now things have started to calm down and my LP is defiantly looking better than it has in months. Now to just get this diet fiqured out :P Thanks again for your time and your input I cant wait to try and get some time of diet going to see how much it helps. Also one more question I see that you were preping for marathons and such. Well I am a pretty hardcore gym rat and I like to lift really heavy and gain weight being that I have been pretty small my whole life. I was 145 pounds most of my life and now I am up to about 185 and working towards 195. Do you think the diet will make it harder for me to gain weight and strength or help it?

When you’re stressed, your need for magnesium and vitamin-C increase. You can help your body by taking those as supplements. If you are eating enough vegetables (I know, but they are really important), good proteins, fruit and good fats, you’ll still be able to bulk up.

Allen, I have had this same problem for at least three years. My dermatologist gave me a hydrocortisone cream and another cream, but it kept getting worse. I started using Noxema on my rashes twice a day. I just rubbed a generous amount on and left it. Once in the morning and once at night. I am almost complealed of it. You may want to try this too and then add the Paleo diet to keep it form coming back. That is what I am trying now so I can get well and stay well. I hope it

Thank you thank you thank you! I want to cry I am so happy to have found you. I’ve been scared silly for awhile now. Everything I read about this has me worried that my, currently, mild case is going to get so bad I can’t eat. I’m scared I won’t be able to have a second child. I’m scared I’ll never be able to breath without discomfort. Or have pain free sex, for that matter, ever again! (I assume this crap is everywhere and causing ick in many places) I have cried so much about this as everything I read is so dismal. People with this are so sad and miserable and go on and on how their lives suck!
I went through a tough time with my infant in February, we all got the flu and I got mastitis. Then I noticed that it bothered me to breath (maybe undiagnosed esophageal LP?) and then by May I noticed lesions on my tongue. I have seen many doctors and finally got a OLP diagnosis. He just gave me steroid cream and said its not too bad and this should clear it up. I have lots of experience with steroid creams for my psoriasis and know they do not help! Anyway, I have been getting woken up every hour by my now 14 month nursling since we all got sick in February (its currently July). We have finally decided to night wean. Oh, god, I hope it doesn’t get worse! But I need sleep! My adrenals are shot. I was dairy and gluten free for my daughter because I noticed it bothered her. But now am totally alcohol (occasionally I had some white wine. For 2 years I was looking forward to being able to have a glass or two. Not in my cards.) and near sugar free. That means all sugar. I suspected it was a candida problem. I feel like skin is a mirror of your gut. Also, after my 4 day and very trying labor and birth of my baby I had very noticeable yeast overgrowth. I dropped so much weight when I started nursing that I was scared and ate a HUGE amount of nuts and avocados and potato chips to try and keep some weight on. Anyway, I know I have adrenal burnout, no menses, and my autoimmune disease that I was born with, psoriasis, is very active right now. I am a vegetarian and only eat what I make. It is so rare that I eat convenience foods. So, part of me is upset that I got this as I was so careful with my diet. But I guess you can only operate for so long on next to no sleep. And I suspect I had yeast issues for quite sometime. I ate a lot of cheese! And my daughter had a mild case of cradle cap.
Sorry, I guess I have not been able to voice my sadness and frustration. I just blew up your comment section. But it felt good. :)
So, thank you for writing something positive! I need hope. I need my mind and my soul to feel like I can get better. I really want a second child as well. You are the first person to give me hope that all is not lost. I pray I can conceive again. But I’ll give my body some time to heal. And I’ll unthaw that jar of bone broth. Yes, I had a friend make me a bunch many months ago. I guess I should have been actually drinking it. This 25 year vegetarian is going to have a tough time eating some meat again so i figured it better be the most bang for my buck! And I’m starting a candida diet. I’m looking at the immune diet thought! Thank you thank you!

Oh Amy! I’m so sorry this has been so rough for you! There is definitely hope. And this is a great place to vent. You’ll find lots of support among my readers. I do recommend reintroducing meats, but you’ll definitely want to add a digestive supplement to help digest it if you’ve been vegetarian for so long. Fish is easier to digest than meat, so that might be a good place to start. I also had a 4-day labor with my first! (only 20 hours with the second, which felt like a breeze in comparison). :)

Hi! I did a search for “lichen planus and breastfeeding” and found this page. I first was diagnosed with LP when I was 14 and it has had three major flareups since, the last two times being when I have breastfed my daughters. Since the LP went away within weeks after I weaned my older child, and remembering that my first flareup occurred at a time when I had very irregular periods, I have connected the LP to my hormone levels. Anyway, I have learned that LP is a very misunderstood condition; like others have posted here, my dermatologists have been of very little help and I find I can’t find much about LP online anywhere. I think this page has the most written about LP I have ever seen on the internet! I will look into what you are saying about diet; extra sleep is NOT in my cards right now with a wakeful baby! Also, if you know of any websites that offer more details or support for LP sufferers, I would really appreciate the guidance! Thank you!

Hi! Thank you for this page, for sharing your expirience and all the tips. I have LP for 6 months now and it’s all over me…legs, arms, stomach, back,…the worst is on the wrists & ankles….and, like Amy, I also have psoriasis, so it’s definitely time for some changes…once again, thank you!!!

The way LP has come will go as well in its own sweet time, no diets, steriods or for that matter anything is gonna help, trust me its all in the mind, these so called diets and stuff not gonna help.

Sarah–

I have autoimmune hearing loss (Meniere’s Disease) and increasing joint pain, plantar faciitis, and back pain. I am doing Dr. Hyman’s 10-day Detox Diet to get me jump-started and then I’ll transition to something permanently, I think. Do you know anyone whose hearing has been helped by AIP?

–Jan in Colorado Springs

Having a diagnosis of lichen planus can feel like a death sentence. I’m one of the lucky ones who has oral, vaginal, scalp, nails and a few body/skin lesions of LP. I’ve completely lost six fingernails and two toenails. Have vaginal scarring. Have hair thinning because of some hair follicle scarring. Have those beautiful purple lesions on one ankle. But, the worst of all has been the oral LP with chronic yeast. I have been dealing with this along with a host of other autoimmune illnesses for over 14 years now. Fortunately, I have access to one of the leading LP researchers/physicians bar none (Libby Edwards, Charlotte, NC). However, all of the steroids, DMARDS, creams, ointments, injections and most recently laser treatments has not put it into remission. To find this site, the book, and the success stories relating to following the Paleo Approach gives me more hope than I have had in many years. My hepatologist (liver specialist) actually suggested I try this. He’s a huge proponent and had heard it had been successful with LP (Sarah, it looks like your work is out there within the medical field). Wish me luck as I begin this journey. Hoping it will help with my obesity and many of those other autoimmune diagnoses I have, too. Looking forward to learning more from all of you! Thanks, Sarah, for helping us become healthier. I’m really excited!

Hello,
I was diagnosed three years ago with Hashimoto’s thyroiditis and leaky gut syndrome. I had blood tests done to determine my food sensitivities which include gluten and corn as the worst aggravators along with some kinds of fish, a few vegetables and a few fruits and many seasonings. I did good for the first year but I have slacked off in the past two years and only loosely follow the diet guidelines that I should. I immediately suffer when I eat wrong and will get migraines for which I take a prescription pain reliever with Codeine, and also a ‘sick all over feeling’ if I overdo it too many days in a row…not to mention that I can’t seem to lose weight. I’m worried about getting other autoimmune diseases if I don’t clean up my act but I am confused about what to eat. Do I just cut out the foods I’m sensitive to or should I follow a paleo diet…or possibly the AIP diet? If I had some direction I feel like I could possibly be more successful at sticking to it.

Thank you for your input

Oh my gosh! I was told I have psoriasis after years of biopsies and such. I now realize I have lichen planus thanks to your description of your symptoms. The clincher was when you said it went away when you were pregnant. The same thing happened to me! I can’t tell you how excited I am to find this out. I now know what is going on with me and how I can fix it. Thank you so much for posting your experiences.

I’ve never actually been diagnosed with Lichen Planus, but I know that’s what I’ve since I was in my early teens. Scalp, face, eye brows, nose, hands, feet, everywhere. Fast forward some 20 years later and endless tubes of Cortisone cream and I’m glad I found Paleo and now your site. I bought your book last week and dove in head first. Eye opening stuff. Already pre-ordered your cookbook and can’t wait to get some much needed recipes. Thanks!!

Hi. I have lichen planus in my mouth and my head. The medicine for the mouth seemed to make it worse. Dexamethisone. I do oil pulling with coconut oil and that seems to soothe it. Nothing has made it better yet. But my head is getting worse now. I m putting clobex on it. The dermatologist wants me to use rogaine to try to help the hair grow back. Do you know if this helps? Or is there anything that helps the hair grow back? And is there anything to help stop the progression of this?

Thank you Christina. I did recently buy the book. I love all the detail. I am reading through it now, but I didn’t see anything yet specific to lichen planus except the forward I believe. Do you know of anyone with any positive results with rogaine to help the hair grow back? I have been slowly eating better, and I will start to implement more of the paleo approach into my daily meals. I know the paleo approach takes time to work and I don’t want to lose my hair. The spot has already gotten bigger. I was hoping that maybe you knew of something that worked for lichen planus in the head that could possibly stop it as I continue to eat better and try to get more sleep. I don’t know if the medicine is really working. I also started to rub coconut oil in my scalp too. But I don’t know if it is helping yet either. Thank you.

I have no experience with this so I don’t know. I’ve had great success healing my lichen planus, but I don’t have it on my scalp so I don’t have the hairloss issue to deal with.

Ok. Thank you. I am reading your book now and starting to change my diet more and more each day, and I’ve started to go to sleep earlier too. I’m hoping your method will heal my lichen planus too as it did for you. Thank you for writing this book. I’m looking forward to your cookbook release.

Hello Sarah,

I (17 yr old guy) have genital Lichen Sclerosus since 2,5 years by now. I am really glad to read your story and that you are healing from your Lichen Planus ! Do you think that healing from LS is different than from LP ? I bought your book and I gained some great knowledge about in which way certain foods affect the body, thanks ! Would you reccomend any further treatment/ supplementation which is beneficial for dealing with LS/ LP ? (or skin autoimmune-disease in general)

I`d really appreciate an answer !

Thank you,
Ferdi

Sarah – I am so grateful for your AIP. I have had a terrible skin condition for two years, which started when I went “Paleo.” That meant I ate a lot of eggs and almonds for baking, etc. Suddenly, I had a horrible skin condition on my face — much like what you described, only a bit different. Two different dermatologists wanted to call it roseacea but could not treat it. They were perplexed. Pustules, raised red rash. Nothing worked. I removed eggs. A bit of impovement! (It appears I can eat a couple of Duck eggs a week, though).

Then I was diagnosed with ulcerative colitis — but my colonscopy was clear 7 years ago. So I found this post and removed nuts. SO MUCH improvement! The change has been remarkable. I always knew nightshades were a problem, but now I know I must work on seeds, etc.

Now I am reseaching salicylates. It’s funny how so many of them relate to my ALCAT testing. (It’s not perfect — but noticeable what I have in common between ALCAT and teh AIP.) I will continue my quest and am ordering your book tonight.

Thank you for giving me hope when no doctor could tell me what my problem was. Literally, I was at my wit’s end, and I am quite a researcher! I always assumed it was because I grew up in a literal toxic waste super site (including during my mother’s pregnancy.) I’m sure it damaged many things because I was a very sickly child — one of the first allergy cases in the late 60’s at Duke University.

Yes, I have allergies galore, but honestly, the kind of Paleo touted online cause my health to decline rapidly. The AIP diet is so needed for people like me. We’ll see if I continue to improve, but I am so, so encourage. THANK you. Kathy

Hi. I think I can help you! I have lichen planopilaris (associated with lichen planus but effects the scalp). I recently had ONE lichen planus spot on my forehead. It was there for about a year and nothing would budge it (I’ve been strictly paleo for almost four years and I agree that it’s been most helpful). A friend advised me to put turmeric oil on the spot. I did so (covering it with a bandaid. this stuff stains like crazy) and the next day it was half gone. A few more treatment and you can only find it if you’re looking with a magnifying glass! Turmeric oil is the best healer for skin maladies. I’ve been taking curcumin every day for about a year (it’s the active ingredient in turmeric) and I know it’s helped, but this is wonderful for lichen planus. I would urge you to try it immediately and post your results. Oh yes, I also have found I can’t eat nuts, no seeds but pumpkin, not much tomato either. Eggs were a problem until I started eating eggs from chickens grown WITHOUT SOY! Whole Foods sells them as soy free eggs. Made all the difference! You might want to try it. Good luck.

Thanks, Ellen — but for people like me with extreme salicylate sensitivities, tumeric would exasperate the problem. It is very high in salicylates. Since removing salicylates from my diet, my improvement has been huge. The lp spots I had are not raised any more — they are flat. The red skin/blisters on my face is fading, not gone yet, but the improvement is huge.

Getting to the root of the issue is important. I do appreciate your thoughts to help me with this, though! I hope it will work for others — but I’d be really careful if anyone out there seems to be sensitive to salicylates. They can be absorbed by the skin.

As far as eggs — so far I seem to handle free-range duck eggs once a week. Hopefully, once my salicylate sensitivity slows down, I can handle more (although eggs are not high in salicylates, it appears that the inflammation it causes makes us sensitive to everything else to a degree.) Very glad you have been able to add them back in!

Hi, having LP, could u enlighten me at all? My 3 year old daughter was dx with LP by dermatologist. It was a line down stomach around to back and bottom, raised horribly irritating rash. It looked like ezcema to me until she said LP and that there was nothing we could do. I took her off gluten and it went away. If she eats gluten it comes back. Im so thankful we found something that makes it go away. She’s been GF for a year. My question is, was she probably misdiagnosed or is this just helping temporarily until she’s older? Because u guys have to eliminate so many other things and it doesnt go away that easy. Right?
Any response would be greatly appreciated. Im confused and not getting any help from medical community. They were shocked her rash went away with wheat and tested her for celiac and of course it was negative.
Thanks!

Food sensitivities often develop over time, so you may find as she gets older that other foods irritate her LP too. Or it may just be a gluten thing and as long as she avoids that she’s fine. You really never know, but I’m glad you’ve figured it out for the moment! :) – Christina, Sarah’s assistant

Thank you ladies for responding! Ok. I will just be thankful for her relief, but be aware that she may have more sensitivity in the future. It helps to know that I wont really know yet. I’ll stop wondering too much now and go on with life. :) I feel for anyone with LP, hope my daughter doesnt have it, but now i won’t panic knowing the resources here. Bless you for your outreach to people, knowledge, and delicious recipes!

You’ll probably need to let Sarah answer fully — but I have found I have to eliminate much more than wheat — and you will have to figure out what those things are. Following her Autoimmune Protocol has helped and there is a list on that webpage with the additional items to try eliminating — and her book tells how to try to incorporate them back into the diet — IF you are able to do so. I’m still working on that part.

Thank you so much for your story!! I absolutely love your blog and have learned so much from you. I ordered your new cookbook and hopefully it will be arriving today!
Your story about your lichen planus fits mine with psoriasis almost to a t. I have had psoriasis on my hands for 6 years now and came and went with pregnancy, then got horrible after weaning my daughter. I am now pregnant again and expected it to subside or go away yet it has become even worse. The last couple months I keep getting infection after infection and finally decided to get serious about it. I have tried every other elimination diet and nothing worked. Including whole 30. So I have now started AIP. I am only a week into it. My biggest concern during this time is getting enough calories for the baby. I have been slightly underweight since I started eliminating foods about a year ago. I am now 14 weeks into my pregnancy. I have maybe gained a couple lbs so far. I’m doing lots of soup, gf beef, salmon, and trying to get gelatin in where I can. I would love any tips! Thank you again!!! You are helping so many people.

Hello Sarah,

I’ve had lichen planopilaris on my scalp for 14 months now, and I immediately eliminated a lot of suspected inflammatory foods, but I didn’t go off nuts and seeds, and I also was still eating brown rice and quinoa. I avoided dairy, soy, gluten, sugar, and night-shades. Although these dietary changes seemed to help slow the progression of my scalp condition, it is still there and has slowly spread. So, I realize now that I probably need to be even more strict with my diet, and I need to eat organ meats.

Two questions:
– Do you know if it is okay to eat sauerkraut? I seem to have read contradictory information about which fermented foods are okay on AIP.
– Also, I am already skinny and have lost 10 pounds, so I’m wondering what can I do to increase my weight while on AIP?

Thanks very much,
Bry

Hello all,
I am so happy to have just discovered this site! I am dealing with symptoms of lichen planopilaris (Ellen seems to be the only one here afflicted with this autoimmune malady), have had the rounds of dermatology and naturopath recommendations with no success. My scalp is burning, itching and hair is thinning. I am trying desperately to stop the progression to no avail as yet, and will be starting acupuncture and chinese herbal remedies next week. I will continue to monitor this site. Thank you Paleo mom! Will also look into this diet which unfortunately will not allow me to eat my favourite foods by the looks of it :( but well worth the try!!!

Hi Paleo Mom. I have Lichen Sclerosis, and I have been diagnosed since May this year. Although I’ve had symptoms for about 2 maybe 3 years. I’ve been trying to find a diet which will help me with my autoimmune disease. The problem is I have been a vegetarian since I was 10 (my choice), and I am struggling to find a diet which will help me. I have been on the raw food diet for about a month now. But I don’t think this is working. I am beginning to show signs of a B12 deficiency…namely cracks in the corners of my mouth and Dyshidrosis non my hands. Although I am taking supplements. I abstain from meat for moral reasons, and after 13 years as a vegetarian I am unwilling to compromise that just yet. Do you have any advice? How can adapt my diet to suit my condition? Thank you for your time.

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