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  1. #11
    say_rahhh's Avatar
    say_rahhh is offline Senior Member
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    I wouldn't worry so much about finding the right diet for lupus. Go with the anti-inflammatory diet on coolinginflammation which, incidentally, is remarkably similar to PB and PaNu.

    CUT THE GRAINS, even non-gluten ones.

    NO SUGAR.

    NO TO SOY MILK, and other frankenfoods.

    Dairy as tolerated.

    Saturated fat- read what Dr. Ayers has to say about it.
    Because if you didn't know, of that is life made: only of moments; Don't lose the now.
    ~Borges

  2. #12
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    Thanks so much for the link. My Gramma suffers from Lupus and is sure taking the hard road with the disease. I am going to forward her the link to the anti inflamation site and hopefully she will get some valuable information that can help her.

    They say Lupus isnt necessarily hereditary but it seems almost everyone in my family has some sort of autoimmune disease. Im working hard to keep my diet and lifestyle in check to stay healthy and not become another one with a nasty disease

    Thanks again

  3. #13
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    another question - supplements that are good are fish oil, glucosamine, but are there any supplements you know that make it worse

    i heard to avoid alfalfa - i looked today and it is in some multi vitamins!
    anything else?

  4. #14
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    I personally know lupus and rheumatoid arthritis patients who had disabling disease and who have been in quite long term remissions on adopting a dietary and supplement regimen.

    I have also read of quite a few others who had similar success. The core principles that were present in every case of success included a very strict gluten-free and casein-free diet. Often other foods needed to be avoided as well, tending toward a fairly pure Paleo type diet. Supplements included fish oil, evening primrose oil, Vitamin-D, magnesium taurate or glycinate, and B-12.

    Essentially the principles involved were similar to those used by British playwright Roger McDougall in overcoming his disabling long term multiple sclerosis:

    http://www.direct-ms.org/rogermcdougall.html

    There is now an excellent book out, The MS Recovery Diet, by Ann Sawyer and Judith Bachrach, containing accounts of others who have succeeded in using and refining McDougall's principles. What is astounding is how McDougall, a brilliant man without scientific training, arrived at Paleo principles in resolving his seemingly incurable disease in those pre-internet days.

    The seven part Youtube presentation by Dr. Loren Cordain on Multiple Sclerosis and Diet is very valuable for anyone with any autoimmune disorder.

    http://www.youtube.com/watch?v=xhkmD...eature=related

    Last August there was an article in Scientific American by Alessio Fasano MD on wheat gluten and the pathogenesis of autoimmune disease. But despite recognizing gluten as a cause and promoter of autoimmune disease, Fasano seems to feel that nobody can garner the self control to eat right for recovery, and he is seeking to develop some pill.

    Kenneth Fine, MD, has done pioneering research regarding gluten and testing and has a long but very worthwhile essay on the role of gluten.

    https://www.enterolab.com/StaticPage...Diagnosis.aspx

    Board certified Rheumatologists who are knowledgeable regarding effective dietary interventions in autoimmune disorders and lupus seem rare as hen's teeth. There is at least one, Alexander Shikhman, MD, PhD, of Del Mar, California.

    http://ifsmed.com/index.html

    In addition to being board certified in internal medicine and rheumatology, he has a PhD in immunology and worked in integrative rheumatology at a major research institution. He has written a good book in which he describes strategies that have helped quite a few of his patients who were deep into complicated autoimmune disorders: "Gluten Nation: The Alarming Role That Gluten Plays in Arthritis, ADHD, Autism, Bipolar Disorder, Cancer, Diabetes, Fibromyalgia and Other Ailments by Alexander Shikhman, Jacqueline Townsend Konstanturos, and Mary Lyons Collard (Paperback - 2009)

    An older book by a physician who helped numerous lupus and arthritis patients is "Trace Your Genes to Health: Use YOur Family Tree to Guide Your Diet, Enhance Your Immune System & Overcome Chronic Disease" by Chris Reading, MD.

    All of these approaches are worth investigating thoroughly and all have elements in common with each other.

    What is sad is that I've known many patients with autoimmune disorders who might have been helped by a diligent trial of these principles, and yet person after person has rejected the dietary changes as too demanding. The few who have tried them 100% have all had exceptional and apparently indefinite remissions from really disabling disease. I honestly don't know how universal it is to have such favorable responses to these principles, because the numbers have been so limited. Surely it can't always work so well. It is my impression, and some of Dr. Cordain's work bears this out, that the earlier in the autoimmune process that the dietary intervention is done, the better and quicker the response.

    What is also incredibly amazing to me about the above posted story of Roger McDougall is his persistence. He was very deep into MS and could not walk. He brilliantly reasoned out his Paleo intervention through diet and supplements. His MS was so severe and longstanding that it did not improve until he had applied his intervention for four years. Then he made a complete recovery. He is an inspiration to anyone with an autoimmune disorder.

    One more thought. Testosterone. Women with lupus outnumber men by something like 13 to 1. Some other autoimmune disorders have similarly skewed ratios adverse to women. The reason women get these disorders so much more than men is thought to be that men's testosterone is somewhat protective against immune overreaction. For any man with an autoimmune disorder, getting a blood test for levels of testosterone, especially free testosterone (the only kind the counts), seems like a no brainer. If T is low, it may be that supplemental T will help suppress some of the autoimmunity. Worth exploring anyway. Women may also want to explore their T level needs using some of the excellent material from MarksDailyApple and the links posted by Cillakat. Even in women boosting abnormally low female T levels to a normal female level might help.

  5. #15
    Katie82's Avatar
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    Quote Originally Posted by MollyCat View Post
    Thanks so much for the link. My Gramma suffers from Lupus and is sure taking the hard road with the disease. I am going to forward her the link to the anti inflamation site and hopefully she will get some valuable information that can help her.

    They say Lupus isnt necessarily hereditary but it seems almost everyone in my family has some sort of autoimmune disease. Im working hard to keep my diet and lifestyle in check to stay healthy and not become another one with a nasty disease

    Thanks again
    Me too. Actually, everyone, every single person (well, women anyway) in my family has some sort of autoimmune disease and I have been having symptoms like FM/CFS for 2 years. This is what brought me here and I can say with certainty that the diet helps, and increasing vitamin D helps. I'm far from healed and I'm still working out the details but I am SO much better. My mom has FM and has been doing the GFCF diet and it has helped her a bit with pain and fatigue. Now she's getting tested for celiac and she got her D levels tested which came back low so she's supplementing and getting sun. I really hope it helps her. It's horrible to have such crippling diseases that could have been prevented with the right diet and lifestyle. I wish I had the answers about Lupus/RA but my aunt has both of those and has never tried the diet and prob has never had her D levels tested so I don't know if this would help her.

  6. #16
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    wow thanks for that it is a lot to take in. it is interesting that for autoimmune diseases cordain also includes taking out nightshades and eggs, alfalfa and NSAIDS.
    you advise no casein. i am wondering what this leaves...

    veggies, nuts, avo, olive oil, fruits, chicken, fish - what about tempeh? i dont think cordain is a fan of this though
    as a protein powder what would be acceptable?
    lunch and dinner are easy as salad and veg and protein, just with no dairy and no eggs what the heck does someone have for breakfast?

  7. #17
    Paleo Man's Avatar
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    I avoid tempeh because I avoid legumes. I have been off nightshades, dairy and wheat for over five years.

    Prior to that I had a variety of health problems including IBS, refux, and GI issues, and some indications of the beginning of an autoimmune problem.

    When conventional medical principles failed to produce either a diagnosis or a cure, I started an elimination diet, eliminating one group of foods at a time for a period of two months, then moving on to the next.

    One of the earlier groups of foods that I eliminated was nightshades. My GI symptoms did not improve a bit, nor did my rash, but unexpectedly all the little aches and pains that had built up in my joints disappeared. So I stayed off nightshades and the joint pains have not come back. In me, the effects of nightshades seem to be dose dependent, so I don't fret if I get an occasional tomato or potato, or vegetable pepper, but I avoid them. It is not uncommon to have joint pain issues respond well to a no-nightshades diet. Why are they called "nightshades" in the first place - because they tend to be poisonous in one degree or another, solanine and so on.

    When at the very end of my dietary trial I went off gluten and dairy, all my other symptoms resolved.

    What does this leave. Lots of grassfed beef, bison, lamb, poultry, fish and seafood, lots of vegetables, lots of fruits, some nuts except for peanuts. My breakfast might be a grassfed beef patty and a smoothie from fruit and greens, or maybe some uncured turkey bacon and fresh fruit. I use eggs every few days, but would avoid them if I had autoimmune issues in full swing until I was convinced that they were not a problem.

    The hereditary aspect of autoimmune is covered well in the Chris Reading MD "Trace Your Genes" book mentioned in my post above. One family member might have one autoimmune disorder and others might have several different autoimmune disorders. Familial gluten intolerance can result in lots of different autoimmune disorders as Dr. Fine points out in his site and the essay I referenced. Thyroid problems of autoimmune nature are sometimes the first presentation of gluten disorders.
    Last edited by Paleo Man; 07-10-2010 at 11:08 AM.

  8. #18
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    that trace your genes book sounds interesting read. thanks for all the help.

  9. #19
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    what protein powder do you use or would you suggest on a casein free diet - as most options use a legume or carb base otherwise (rice, etc)
    would you say egg or just use an isolate?

  10. #20
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    does anyone have more info on the elimination diet and how it works? it looks like you do lean meat, fruit and veg for a week or two then add in for a day the foods that may be of bother, then go back to another few days of the original plan, and keep testing like this noticing how you feel?

    just curious if things like tubers, avacado, coconut, olive oil or other good fat are acceptable while you do this or you keep it strictly to meat, fish, green veg (no nightshade), fruit

    thanks
    kim

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