Updated summary on my LP/LPP

One of the comments I received recently, on my few months old LP/LPP post, clearly showed areas where I need to update my readers, those who are interested in information on Lichen Planus (LP) and Lichen Planopilaris (LPP) (a form of scarring alopecia).

There has been so many comments and conversations about my experience with LP/LPP, that I forget how unorganized the information may appear. I mention things here and there, as questions pop up, and I probably need to organize it in one update/post. I will attempted here, to address all the questions I have been asked about my experience with LP/LPP:

  • I was diagnosed via two biopsies – scalp and body (neck down), in the spring of 2010.
  • In July 2010 I had my first appointment with a naturopath who has completely changed my life! But first he has changed my diet 🙂 By the summer of 2011, a year later, signs of my LP were almost gone. The rash, the dark spots (someone described them as cigarette burns looking spots) were all disappearing.
  • My LP (skin on my body) is in remission it seems…as I have not have had a flair-up in over three years, ever since the original rash went away (took more than a year for every sign to clear up).
  • LPP is inactive, I can not call it a remission, as it is sort of my health meter now – if I eat badly, repeatedly (like on vacation) I usually get flare-ups, very quick ones, they last no more than a day or two. New spots, not old.
  • Old LPP spots are healing nicely, indentations are gone. Not all of them are scar tissue, some are just thinned out hair where the scar tissue never formed. I do have some new hair growing in the scars here and there.
  • The trigger for my LP/LPP is not known  – I got better not only due to the drastic diet changes, but just as importantly, to drastic lifestyle changes – better stress management, slowing down a bit, quitting my high stress job, improving the dynamic of my family relationships, etc…trigger could be the blood pressure meds I was put on for a few months, the C-section I had, a compromised immune system after pregnancy/C-section, extended nursing (two years), a very very stressful and emotionally draining few years prior to 2010 (money, job, relationship issues), bad diet…in my opinion it is a culmination of things! One of them, or even a couple, would not have any noticeable health consequences, but all at ones – “shit hits the fan” type of moment :) – and vu a la – I get this skin thing, and a few months and a couple of biopsies later, I get the diagnosis of LP and LPP.
  • I did use some steroid and cortisone treatments, barely anything initially, as I was nursing and did not want to expose the baby to the drugs in my system. Later I did try topical treatments as well as steroid shots – nothing had a healing effect. New spots kept appearing, and with LP been literally all over my body, neck to toes, I could not possibly cover myself in steroid/cortisone creams, and expect to not develop serious side effects.
  • My scalp – since new spots kept showing up, I knew that with conventional treatment it is just a matter of time before I loose most, if not all of my hair. Doctors were not able to find the cause and address it, nor were they able to stop the progress, without potentially harming my health and immune system even more. I was not a big fan of staying on steroid shots/creams for the rest of my life. There was no reason for me to stay with conventional doctors, I knew there had to be a better way and so I have completely dedicated myself to a healthier lifestyle, healthier body and more importantly healthy mind, better nutrition, and therefore giving my body a chance to heal.

My diet has been ever-changing since my diagnosis (I believe, I have in fact tried everything from raw and vegan to Atkins) and finally I am on what I call a modified Paleo, and I feel wonderful! I would say it is a plan-based diet, with the addition of healthy fats and some clean animal protein. Here is a quick breakdown:

  • No grains (just occasional oatmeal for breakfast or brown rice bread toast). 
    • No Gluten. I have been diagnosed with Celiac via blood test, and then later endoscopy showed no signs of Celiac – but by that time I was Gluten-free for about a year, so potentially my gut had a chance to heal. Anyway, according to conventional doctors I have Celiac, and I do in fact feel the effect of gluten when consumed.
  • No nuts (some almond milk).
  • Small to moderate amount (20-30% of our diet) of clean/healthy/humanely raised/grass-fed/organic/wild animal protein (fish, poultry, eggs and some red meat). In the winter we eat more animal products, so the number may go up, while in the warmer months we naturally are drawn to more fresh vegetables and fruit.
  • And most importantly! At the base of it all, I would say 70-80% of our diet are fresh/cooked/raw/juiced vegetables and fruit. Less starch vegetables. 
  • No diary (no goat diary either, no dairy at all)
  • No yeast – I try to avoid any food that contain yeast.
  • No fermented foods, drinks. No beer, no wine.
  • No GMO containing products.
  • No corn.
  • Very little soy milk
  • Coconut, olive oil and other natural oils, as much as I need/want.

I stay physically active, drink a lot of water, herbal teas, do take supplements (the selection changes all the time).

I think this is it really…Please let me know, ask, if I missed anything.

To your health,

Elena

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Showing 9 comments
  • larryhbern
    Reply

    Reblogged this on Pharmaceutical Intelligence and commented:
    This is a personal description of a good writer describing a skin condition. Not our usual topic.

  • Maggie
    Reply

    Thank you so much for posting your experiences with LPP!

    For the past 5 years, I have had a long winding road of trial and error to ultimately end up being diagnosed with LPP in the the past 6 months. I never knew where to start, what to do and never thought of diet change b/c the conventional medical doctor’s never once suggested that as an alternative (unfortunately). Even though I threw it out there as an option, one actually responded saying ‘eating clean can be expensive’. Verses what – buying medicine for the rest of my life which can cause further issues down the road after prolonged use?

    My LPP has reached the point where I’ve lost all of my eyebrow hair, half of the hair on my forearms, the majority of the hair at the crown of my head and it continues to recede on the top and the texture of my skin has changed on parts of my face to look like scarring. The majority of this happened before the doctor’s were able to pinpoint it as LPP. They thought it was alopecia mucinosis for a while before that.

    I tried to do research for general auto immune disorders and diets and they seemed to point in every direction until I came across your post which is the first time I’ve seen it relate most to what I have. I’ve been cutting out food groups for the past couple of weeks and wasn’t sure how little/ how much I need to cut out. Some said eggs, nightshade plants, etc. but it seems like you’ve been okay on these. Did you cut out gluten more for your personal celiac diagnosis or something you think anyone with LPP should consider doing?

    Since the symptoms are in my scalp I don’t really see immediate symptoms like others do. I don’t break out in rashes like the pictures you’ve shown either so it’s hard to tell what effects it and what doesn’t. Do you ever stray from your diet and let yourself have something not so great for you here and there? What helped you most transitioning from eating/ drinking whatever you want to living clean?

    Thank you so much for sharing this information though. It’s nice to know that someone shares similar experiences with something the doctor’s have seemed at a loss with how to treat me. Today I had an appointment and told them I wasn’t going to take medicine anymore and would like to try a lifestyle change instead to see if I can at least stop the progressive hair loss!

    • Elena
      Reply

      Dear Maggie, I am sorry for a delayed reply, it is a very busy time for me. I don’t work much from mid-June through mid-August, and so wrapping up with most of my clients. I am so glad you decided to give a lifestyle change a chance. Diet, lifestyle and stress levels are huge contributors to our overall health.
      Maggie, if you would like I can offer you a free 45-50 min consultation (for the lack of a better word) it is just an opportunity to chat, answer any questions you may have. I find it easier than writing and emailing back and forth. We can do a Skype video call or a regular call, your choice. Let me know if you’d like that.
      And to your questions – cutting gluten out – I think anyone with an autoimmune condition and/or stomach/GI problems would benefit.
      Do I stray from my clean diet – yes. In short, I drink coffee, have some wine on occasion. Had some amazing hand made ice cream yesterday – sugar, dairy, and no symptoms!! Sometimes, if I overdo it, like during holidays or vacations, I do get itchy, my body lets me know enough is enough.
      What helped me with the transition?! My desire to avoid any more health complications – autoimmune disease does not come along, if no changes are made for a healthier diet, lifestyle , stress reduction, more conditions will develop and health will continue to deteriorate.

  • punit
    Reply

    hi elena
    i just got diagnosed with lpp its on my neck and i decided on changing my diet and lifestyle thanks to ur post.
    everything sounds fine except that i wanted to know that do i have cut down on dairy products.? i love milk and cant stay too long without it. so is there any substitute for it. how do u make up for the nutrition that milk and dairy products provide ?

    i dont mind chatting with you privately too for the few minutes regarding this.
    do let me know

    thanks elena

    • Elena
      Reply

      Punit, I am so sorry for just replying to you now. I have been away and very busy with kids’ school over, now summer camps….

      Anyway, dairy. I grew up with dairy, and prior to LP/LPP diagnosis, was eating it daily, in many forms, e.g. yogurt, milk (cereal) and just drinking it, cream in coffee, butter, cheese on my sandwiches, cheese in my salads, sour cream in soups, with meals, ice-cream for dessert. Not a day would go by that I did not eat dairy in one form or another. So it was not easy to give it up. I first went to goat cheese and milk. It was fine, I got used to different taste even grew to love it. Still dairy, so I eventually had to give it up as well.

      Dairy is very inflammatory and as far as nutrients, the calcium? – you get more from spinach and other leafy greens. If you eat grass-fed beef, grass-fed eggs, wild fish, etc – along with tons of veggies, you will get many more nutrients and will be much healthier. The problem is also that the milk products most people consume are full of hormones. Now that I have being symptom free for a while, I do enjoy cheese when out at a party, at dinner, and no side effects. My oldest works her summer job at an amazing handmade ice-cream shop, so I even get ice cream now and then. But I had to go clean for a while first, to give my body a fair chance to heal, to regroup and get balanced.

  • Carolyn
    Reply

    Well, Elena, this is the 1st time I have ever e-mailed anyone that I don’t “personally” know. I hot a real tough spot today, so I’m reaching out to you, for possibly some help or guidance, but mainly because, by what I’ve Been reading in your writings, you will understand my grief. I know I will eventually “buck up” and take steps to deal with this, but for today I am grieving. It’s just hard to face and deal with yet another health issue (although I understand it may be due to one root cause, ie :systemic inflammation) I’ve been dealing with chronic fatigue and pain for 30 yrs. That’s how long I’ve had Fibromyalgia and all it’s accompaning symptoms. I also have trygeminal neuralgia (another chronic pain disorder). The first 15 yrs I managed to keep up with life somewhat, but the past 10-15 yrs I have been “disabled” in that about 1/2 my days I am bedridden. Boo Hoo, right? Actually, i am known to my friend as an optimist, and I try to keep a hopeful attitude, and walk a fine line of acceptance, with hope for healing. In addition to my training as a Psych. Nurse, I also got a Certificate as a Nutritional Consultant 35 yrs ago. I have been into “clean eating” for years, but have frequently strayed due to sugar and carb addictions, and using foods to meet stress and emotional needs/ wounds. I am being quite candid here, I realize. Anyway, now, just a bit before my 60th birthday, I get the diagnoses of LPP. Mostly appearing in the scalp with extensive hair loss. When I first showed my MD, and then my integrative MD, they say it as loss due to aging, or “no big deal. Finally I went to a dermatologist who made the diagnosis. I took 2rounds of cortisone shots, but now I’ve decided I want to approach it as a whole body issue, through an anti-inflammatory protocol and by supporting my immune system. Dang, the tears come from having to deal with yet another bunch of health issues, and kissing my “crowning glory” my natural copper colored locks. I know that in the Big picture, there is a lot worse things that could happen than losing my hair, but it’s a little like the straw that broke the camel’s (or this post-menopausal Grandma’s back). I am going to embark on a much more comprehensive dietary approach, get all the sugar out, cut out other grains(I am already gluten free). Start more juicing and green drinks. Do you use anti-inflammatory herbs/supplements and/or topical treatments like herbal salves or essential oils? I would like to know what you do to support your immune system, and your detox organs, skin, gut, liver. I guess I am being pretty ridiculous saying and asking all this at once, sorry. I feel a bit weak and desperate at the moment. I’m concerned, since my health seems to be going from bad to worse, that if I don’t get radical, I may get an even scarier test result in the near future, if you know what I mean. Yikes! I saw your current protocol, And wondered I’d you dont eat nuts due to allergy concerns or because you believe they are inflammatory? Same with nightshades. I would sincerely appreciate any comments you are willing to share, and thank you for your sincere acts of caring and kindness. I realize that giving of yourself to others in this manner is not a light or easy thing, as I gather you are a busy woman and mother. Thank you.

    • Elena
      Reply

      Hi Carolyn,
      Thank you for your questions! I will try and address all of them.
      *In my case, I have noticed that nightshades are not a problem. I do not eat them daily, but I am not limiting them either. I am big on rotating my foods.
      *I started to add nuts back into my diet, as I am feeling healthy and symptom free for a long time. I avoided them due to the fact that they are not easily digested and like grains are hard on a compromised.weak digestive system. Now IF I have them, they are mostly soaked.
      *As an anti-inflammatory – I take turmeric. I just add it to my food, about 1/3 to 1/2 teaspoon to a meal (eggs are great with it) a day, or more if I can. Use turmeric with pepper – I read a research that turmeric is 1000 more effective and potent when taken with pepper, I use cayenne pepper.
      *For 6 months out of a year, from about April to October I do not use any supplements, I am eating tons of greens (watercress, arugula, kale, spinach, purslane), seasonal vegetable and fruit (mostly berries), protein. That way my body can detox, rest and take nutrients in a natural form.

      Stress is too important to ignore. Ones I realized that there is nothing I can do about my LPP/LP, but to accept it and work with it, live with it, I felt better. It is here, or it is not – I can not control it. I work with it via my nutrition and it lets me know if I have missed a step, I get a flare up, an itch. It’s keeping me healthy and my whole family along with me 🙂

      Take care and please feel free to ask any questions. Again thank you for your honest open comment!
      Elena

  • Paula
    Reply

    Hello Elana, I have been reading your blog and I am so happy that you’re LP/LPP is innactive. I have been diagnosed with LP in 2011/12 i think? I was 13 at that time and in my case it just went away itself i did use some medication but i wasn’t really paying attention as I was so young. It took about 2 years for i to go away. Then few months after I have been diagnosed with LPP which was terrifying as I was very young and I was scared what other people might think. I am 17 now and it is still active, I am now trying to stay gluten free and eat as healthy as i can which is hard. I lost a good bit of my hair and I was just wondering if your hair grew back in the scarred spots because I read that the hair loss is permament but I hope somehow it can grow back.

    • Elena
      Reply

      Dear Paula, I am so sorry for replying that late! Summer is crazy for me with work and kids, I hardly get time for computer 🙁

      I am so sorry you are still dealing with LPP. You know, I have noticed that stress and diet trigger it almost immediately. I have to stay completely gluten free, about 95% dairy free (I have a scoop of hand made ice cream, my daughter works at the shop ones a week maybe and some cheese on occasion), and about 90% sugar free (processes sugar) I eat little fruit, a lot of low sugar berries (e.g. blueberries, raspberries), and that occasional ice cream. No grains, unless I am having sushi 🙂 I love sushi. So as you can see in my case the best diet to keep my LPP under control is “pegan” a new term, google it, tons of vegetable, a wide variety and some clean protein. Some nuts. Good fats.

      As far as scar tissue, my hair stylist seems to think there are some new hair coming in, but since my diagnosis in 2010 I have not noticed much difference. So my goal is to work on keeping what I have. I also notice that in the summer when I swim a lot in the ocean my skin feels a lot better, healthier, so I think it is magnesium deficiency, not sure if you take supplements, but that one is critical. I have a post on magnesium, take a look.

      Good luck and please let me know if you have any other questions. Elena

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