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  • lupus

    does anyone have any more info on dealing with/having this disease? A friend of mine was just diagnosed and I hadn't heard too much about it?

    I assume going primal, removing wheat and gluten may help.

    Any other advice?

  • #2
    The most helpful actions will be

    1)quickly repleting D levels. Quickly. Very quickly. I had a number of lupus markers for years. It took awhile to get rid of them but maintaining my 25(OH)D levels at 65 ng/mL finally did it. See my sig line for some vitamin D information. The will have much information on autoimmune disorders, it's worth reading it all....not just the lupus information.

    2)ditching grains will be helpful...and possibly diary as well, but not as helpful as repleting D.

    Interestingly, it doesn't really matter what the disease process is, the answer (at least in part) is optimizing 25(OH)D levels via sun and supplementation and ditching grains and sugar.

    iherb referral code CIL457- $5 off first order


    • #3
      My father in law has Lupus and RA. I'd love to hear more about what could help him, too. I told him to try a gluten free diet, but I don't think he's stuck to it.


      • #4
        SAQ, in addition to the lupus markers, I had markers for RA as well (and more....listed in my journal in the first post).

        Even without going gluten free, optimizing his 25(OH)D....not just raising it, but truly optimizing it can go a long long way. Vitamin D deficiency is most likely the main factor that allows autoimmune disorders to take hold.

        I had either fully develped or significant symptoms/blood markers for
        sjogren's syndrome
        fibromyalgia/chronic fatigue

        As well as a bunch of other health issues that weren't autoimmune.

        Allllll of the markers are gone.....though just recently my CRP (not hs-CRP) is way back up and appears to be caused by dairy consumption.

        Best to all of you,

        iherb referral code CIL457- $5 off first order


        • #5
          I have Mixed Connective Tissue Disease which is closely related to Lupus. I cannot recommend highly enough the blog "coolinginflammation" - in fact, Dr. Ayers' information is what led me to radically change my diet. It's all about controlling, you guessed it, inflammation.

          My most important dietary rules are no grains and no vegetable oils, followed closely by no sugar.

          My last flare-up before changing my WOE was almost 2 months long, with extreme exhaustion (12 hours of sleep, still needing a nap, contemplating pulling my car over during my commute to sleep, etc.), joint pain throughout, mental fog, extreme Raynaud's, increased alopecia, etc. I changed my diet just a couple months later and my next flare up lasted only about 2 weeks and, I would say, was only 40% strength of the previous one. Of course, it was still life disrupting and very upsetting (I think I was overly confident about my diet COMPLETELY managing my disease), but much much more manageable.

          I'm on daily medication (plaquenil) and my goal is to eventually not have to take it anymore. But for now, I am allowing my body to slowly recover from the poisons that are grains, and following conventional medical advice. Of note, not one of my doctors ever mentioned changing my diet because I'm slender, my HR is good, my cholesterol is good and I ate "healthy" (low-fat, high grains, low protein).

          I had an uncle with Lupus and he lived well into his late 80s; I don't feel fatalistic about auto-immune diseases. I physically and mentally feel the best I have in my entire adult life and now I hope I live to 90 or 100. The only thing that saddens me is that based on the recommended American diet, I essentially lost so much of my life feeling like I was in a machine that was slowly breaking down.
          Because if you didn't know, of that is life made: only of moments; Don't lose the now.


          • #6
            Thanks, Katherine! I appreciate the info.


            • #7
              thanks team this is really interesting. how much vit d have you found to be effective.

              i also thought fish oil, evening primrose, multi

              i have read zma maybe isn't good...


              • #8
                what about fitness,,, how much or what type?


                • #9
                  To tolerance, is my best advice. Elevated heart rate (whatever cardio means to that person), some weight bearing activities and stretching.
                  Because if you didn't know, of that is life made: only of moments; Don't lose the now.


                  • #10
                    ok it wasn't a friend, it was my mum. i gave her your suggestions today and she said that she has actually being trying to reduce gluten and feeling better.

                    she still likes brown rice though so that will be a hard one.

                    she told me she switched from cream milk to soy but i told her that may be worse... what do you guys think? Dairy I know is individual but she said the only thing she really has now is yoghurt.

                    What other hidden things is gluten in - i know it is in sauces, oats, rye, wheat. The gluten free grains would be quinoa and brown rice and maybe buckwheat?

                    what about saturated fat and lupus- - some people say it makes it worse so how does that sit with coconut oil and egg yolks and full fat dairy? What is the best oil to stirfry with or ok if you are out at restaurants? Is sesame oil or avacado oil ok?

                    sorry for all the questions this is very helpful.


                    • #11
                      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.


                      • #12
                        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
                        If Someone was following in your footsteps, where would you be leading them?


                        • #13
                          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?


                          • #14
                            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:


                            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.


                            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.


                            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.


                            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.


                            • #15
                              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.