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paleo or stone age diet and effect on Lichen Sclerosus

Posted , 15 users are following.

Jeepers
Jeepers

Has anybody tried either of these diets and if so can you please tell us what if any success you had in relation to the symptoms of LS?

 If you had improvements , how long did you follow which diet for and were you strict about what you ate of did you make occasional lapses to "forbidden" foods?

I would like to know as I am following  the Seignalet ( stone age, similar to paleo )  diet with no great improvements and am being urged to keep it up till I have been on it for fifteen months as it can take that long to send it into remission.

I am heartily weary of this diet and any encouragement will be very welcome.

I do hope somebody will reply.

0 likes, 32 replies

32 Replies

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  • suedm
    suedm Jeepers

    Posted

    Hi Joodie if you look at the alternative site here on patients with LS  there are serveral people who do advocate the dietary route to helping symptoms - check it out

    I am not convinced tho that diet alone will help- especially if you are  on a normal healthy diet that is not excessive in any particular area. I do think tho that one's reaction to stressfull situations will make the condition more noticable!

    WHO said you have to keep it up??? what are their qualifications what ACTUALLY are they suggesting is the result of the diet for such a long time - what is the impirical evidence of such claims?

    Do make sure you are not being sucked in by "experts" with a drum to bang! It is very easy to make claims but less easy to demonstrate REAL success -only a double blind trial by those who understand real research should be permitted to be believed - but even so it also depends WHO is funding the research and why. There are charlatans in every walk of life and if you are really desperate for an outcome it is easy to charm you into their way of thinking.

    YOU know your body best, keep a diary of intake / mood / physical and mental effects on a daily basis.

    Remission is not predictable.

    There are suggestions that going into a starvation mode for a period will make the immune system change course, but again caution needs to be taken - go to your medically qualified doctors and talk to them - they will be put on the spot - so do make sure you have the right questions to ask

    Take care and keep on with the clobetasol /moisturiser / barriers, and loose clothing. laugh and be happy, try not to concentrate on the undercarriage - you will reinforce the negatives and do tr and think positively

    Best of luck Sue

    • Jeepers
      Jeepers suedm

      Posted

      Tthanks Sue. It is a friend who wants me to stick with it as she thinks it might send LS into remission. It is the Jean Seignalet diet. He was a specialist in immunology and genetics, who also researched nutrotherapy in conjunction with chronic inflammatory diseases.

      Re the double blind, this is a weakness as he said he did not want to deny any of his patients treatment so did not do that.

      His diet claims to have halted or improved many chronic inflammatory diseases especially rheumatoid arthritis.

      My friend herself suffered inflammatory  bowel, swollen  glands over much of her body, sore throats, and severe chronic fatigue for over two years, and is after 7 months on this diet so much improved but also is having acupuncture.She still has to take care not to over stress or overwork, otherwise is almost like new again.

      I didn't have her problems however, "just" the LS, ( not included in Seignalet's claims ) and coronary artery disease and now warned could become  diabetic. I am 77 years old.  Hard to combine the various facets of foods to be barred/substituted etc. 

      I am seriously thinking of giving up the Seignalet diet to her great disappointment. She is saying I have gone half way so should do the rest.

       This is why I sought encouragement or other advice from my fellow-suffers.

      thank you again.

       

  • claire12259
    claire12259 Jeepers

    Posted

    Hi Joodie,

    im afraid I haven't done either of these diets but I have cut out (mainly!) dairy, sugar and gluten and started to get results very quickly - 3-4 weeks. I can cheat too generally without much ill effect. I was considering doing the paleo autoimmune duet but I never needed too. 15 months seems like an awfully long time to get any results to me. Hope you get someone to reply that has followed either of these diets with some helpful advice

    x

    • Jeepers
      Jeepers claire12259

      Posted

      thank you Claire. I think something like that would fit in better for me than my current diet. Mind you, the gluten free bread is sad eeeugh, like biting into a blanket, is it not? I just don't have it.

      Hope you continue to benefit .

    • claire12259
      claire12259 Jeepers

      Posted

      Hi Joodie,

      I don't mind it, I am use to it now! I do cheat sometimes tho, cos there is nothing like a crusty roll and butter!! But day to day Im good. Its all worth it to be LS symptom free me thinks

      xx

    • lizziewizzie
      lizziewizzie claire12259

      Posted

      ooh do check out the adverse effects of even a tiny bit of gluten...sets you right back...but i struggle too tho definitely have found improvement and its getting easier to be strict due to delicious alternatives. i look at bread pizza and cereals with disgust now...its such a relief to be free of that addiction...so its one down...how many to go? x
  • deb09833
    deb09833 Jeepers

    Posted

    Hi - I have been trying to stick to Paleo which I don't find too strict. There is a lot of negative press about these but I truly believe that all the chemicals, antibiotic injections for cattle and false plumping up do have an impact. As to whether it works,i certainly know the difference when I do something like eat bread or an ice cream. Sugar has had to go. It wasn't until I started down this track I realised how much extra sugar is in nearly everything.occasionaly I break out and have a real coffee. Good luck x
    • Jeepers
      Jeepers deb09833

      Posted

      Deb, I do wonder ( not knowing we can only wonder really) whether it is the cattle feed and pesticide sprays in  our fields which have triggered a possibly genetic tendency in us for this and other auto immune diseases.

      Who k nows. they trigger cancer so can only do good to steer away from them . 

      Has the paleo diet actually helped you with  your LS ?

    • deb09833
      deb09833 Jeepers

      Posted

      I have only had one minor flare up since aseptember. Got clobetesol down to as required. Was every day for many years. Estrogen is a constant and I guess always will be. I think changing my diet and the baking soda sprays have helped enormously. 
  • Guppy007
    Guppy007 Jeepers

    Posted

    I have just started the SCD diet today (Specific Carbohydrate Diet) and so I can relate, especially as this diet is hard core too,  and they advise at least a year, but I do my own thing, and so should you I think!  

    I plan on doing the SCD diet for three months, and then switching to something more doable, like Paleo, and the only reason that I am putting myself through this is that I have developed multiple food allergies, and so I am struggling to find foods that aren't an allergen for me.  

    What about you, what prompted you to start on this diet in the first place?  It sounds a little similar to mine,  except I am not expected to eat 70% of my food raw!! I must say I don't like the sound of that, and so no wonder you are struggling, I think that would be hard to maintain for anyone.

     If you are finding it hard there is no shame in switching to another diet plan.

    • Jeepers
      Jeepers Guppy007

      Posted

      Thanks Guppy+ as I said to Suedm, it was a friend who suggested it, and as she was doing it herself I thought ...why not?  as it would give her moral support and might even help me.

      Gosh i'm sorry you are having these allergies. I'm lucky in that way. Some things I have never liked of course, but usually can eat anything ( except things like raw meat or  raw eggs ! ) so it must be very difficult for you so I sincerely wish you luck and hope you can find a better kind of compromise that you are happy to live with.  It doesn't sound like a bucket of fun having allergies as well as LS. x

       

    • Guppy007
      Guppy007 Jeepers

      Posted

      Thanks! I am sure if you look around you may find another diet that is far less demoralizing and kinder than the one you are following....if you really feel like you need to!  

      I am beginning to think that Sugar is a terrible enemy, the root of many many health problems, so with that in mind, I really feel that if people avoid sugar, they will probably be just fine, because lets face it these special diets are gruelling and hard work.   Speaking personally I am already Gluten and Dairy free which I feel is enough, and which is why I am not exactly thrilled at having to do this SCD diet...I am where I am because I was not careful enough with my Sugar intake, of that I am certain, the good thing to come out of all this is that I am now not the slightest bit interested in touching anything sweet.cheesygrin

    • Tessa_
      Tessa_ Guppy007

      Edited

      Hi. I know your comment is five years old, but did the scd diet help in any way? I'm considering it, since my mom is already on it, so I'd just join her and she would help me through the beginning. She also wants to do the phasing process again, so I'd try that too and wouldn't be alone eating just chicken broth with carrots 😂 I'm just not sure about some of the things, that are allowed, that are considered to trigger inflammation according to autoimmune protocol... like eggs, nuts and nightshade veggies.. what do you think? Or anyone who has tried.. thanks

  • renee77108
    renee77108 Jeepers

    Posted

    Hi Joodie, I've been on the Paleo auto-immune diet for 12 days. The LS on my legs has gone into remission...but I also have started vitamin K...so am thinking that may have had some effect as well.  I take calcium, magnesium, D3, A and the K2 as together they are supposed to help.  The LS in my private area also seems to have healed. I've used witch hazel spray for sometime, but once I added 99% to 100% aloe vera gel to the area and Manuka honey at night before bed it has finally cleared. The oral LP in my mouth has not healed as of yet, but the jury is still out on whether it is OLP or benign mucous membrame pemphigoid...but have started the paleo auto-immune diet in hopes of curing or putting whatever it is into remission.  I had a couple of errors in the beginning of the diet and that seemed to cause issues...so have decided to keep strictly to the diet for now.  How long have you been doing the diet?  Right now I'm not allowed any nightshade vegetables, sugar, nuts, seeds, processed foods, grains of any sort, eggs or dairy.  I'm supposed to stay on it without error for 6 to 8 weeks, then I can start adding in nuts, seeds and eggs...but only a new food every 5 days...and diary the results to look for any adverse reactions. I know how difficult it is to give up the foods you love.  I miss my yogurt and cheese terribly...and buttery toast in the morning...but I'm learning that I can replace these things with other loves.  If I don't have the OLP but the other more serious mouth issue it can go to my eyes and cause blindness...so I'm very hopeful that the diet will make the hoped for cure.  Good luck with your journey and I hope you can soon see some success.
    • Jeepers
      Jeepers renee77108

      Posted

      Renee, thank you, and though it is early days for you I do wish you luck with the paleo diet ,  including for the nasty sounding mouth disease you have. I did have LP before the LS but for the mouth I only had to avoid  things too hot or cold, citrus/ tomatoes/vinegar/wine etc. and it didn't bother me much. Went by itself really.  Wish the LS would. sad

      I think the cheese is very missable, as it has an addictive substance in it , so they say , called casein.

      I too  hope the paleo diet will work to prevent your eyes being affected Renee. Take care. x

       

    • lizziewizzie
      lizziewizzie Jeepers

      Posted

      well that is absolutely amazing joodie. well done! you healed from planus that is no mean feat. i think you are way too modest but also not attributing your recovery to the careful effort you put in with avoidance and probably the good things that you did eat.

      i'm doing a slow start paleo....i quit gluten and the itch cleared up immed...so i took out all grains and dairy too very quickly...i go easy on toms and potatoes...and enjoy sweet potatoes instead...but otherwise am now exploring plant and veges as the way to go. Been toying,,,,very slow start with a green cleanse...the ultimate in pure food - now i've overcome reservations about goitrogens and oxalates - but my objective is to take a whole fresh look at organic fruits and veges. I think we eat far too much in the west anyway so I 'm looking at fun and challenging ways to change and to (try) to improve myself.

      May I say how very lucky you are to have such a good friend Joodie who wants to encourage you to be your best and to strive for ultimate health...no compromise. I wish I had someone encouraging me in this way. Perhaps you would consider the role????? How are you at nagging? when invited? Perhaps the key actually is obtaining really good optimum nutrition ??    ...if necessary thro supplementation. This is my next step too...but I'll try to find as much as I can via real food.

      I like what everyone here has said to you and further to Sue's observations a double-blind trial would be great ...if there are some folk who want to stick with regular foods maybe we could organise our own trials?

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