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  • Successes for those with Autoimmune Diseases?

    I'd like to hear stories from those with autoimmune diseases.....specifically how diet has affected your disease.

    I guess I'm looking for a little inspiration here.

    I have MCTD (like lupus), have been primal since early April 2010, starting at 80% primal now moving up to 99% or so. My least primal part is that I consume dairy, although that is now limited to HWC, occasional full-fat Fage and full-fat cheese once or twice a week.

    I'm having fairly consistent flare-ups with fatigue being my worst symptom. I think I started off very hopeful about diet change, maybe a little too optimistic. In the long run, it doesn't matter to me if primal WOE doesn't put me into pure remission because overall I do feel mentally and physically better. But, I'm just looking for some success stories, some positivity, some feeling of community from autoimmune sufferers.

    Thanks!!
    Because if you didn't know, of that is life made: only of moments; Don't lose the now.
    ~Borges

  • #2
    Originally posted by say_rahhh View Post
    I'd like to hear stories from those with autoimmune diseases.....specifically how diet has affected your disease.
    My journal has my list of autoimmune issues that have cleared up: psoriasis, celiac, fibromyalgia/chronic fatigue, as well as markers for lupus and RA and symptoms of sjogrens.

    How's your 25(OH)D? How long have you maintained it at an optimally high level?

    How much sleep are you getting?
    Good quality sleep?
    Do you snore?
    How much do you weigh?

    I finally got my CRP down to .5 last year.

    however, this year it was back up to 4.something.....*but* my RA and lupus markers are gone gone gone. *gone*.

    I'd been primal for 6 weeks...but more importantly I'd been eating dairy daily (which I wasn't when I got my crp down to .5) *and* I wasn't sleeping and insomnia/poor sleep/inadequate sleep is *extremely* inflammatory.



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    • #3
      Thanks for your response, cillakat. I guess we're the only ones with autoimmune diseases around here..... curious.
      Last edited by say_rahhh; 07-26-2010, 05:51 AM. Reason: Forgot to add that I really appreciate your dairy info. I'm going to cut dairy (except HWC) entirely as a test..
      Because if you didn't know, of that is life made: only of moments; Don't lose the now.
      ~Borges

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      • #4
        Originally posted by say_rahhh View Post
        Thanks for your response, cillakat. I guess we're the only ones with autoimmune diseases around here..... curious.
        There are lots more around. A few with lupus, sjogren's I think. A bunch with celiac and psoriasis. Maybe board search for some more info.

        I'd chalk up the lack of answers to the weekend.


        K



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        • #5
          Damn those people with lives!

          Because if you didn't know, of that is life made: only of moments; Don't lose the now.
          ~Borges

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          • #6
            crohns and its improved somewhat. still have flare ups.
            My journal where I attempt to overcome Chrohns and make good food as well

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            • #7
              Well, I have Hashimoto's and on a blood test a few weeks ago -- the first test of my thyroid antibodies since I was diagnosed about three years ago -- my TPO antibodies are no longer elevated (I think they were initially around 28, normal is <20, mine are currently <10). I've been low carb/grain free/increasingly primal most of the intervening period. I'm one of the lucky ones who was never really symptomatic to start with though. Unfortunately I just had half my thyroid removed because a large nodule that arose as part of the thyroiditis hadn't gone away and was inconclusive on a recent biopsy, but at least it seems like the autoimmune aspect is quiescent for now.

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              • #8
                You are not the only ones! LOL I've been living with RA since I was 20. I was diagnosed hyperthyroid in 1995 and have had radioactive iodine twice. That worked for awhile, then in 2006 I had to have it removed after regrowth and 'storms'. Totally removed! I began gaining weight immediately again. My youngest was born 1998 and I had already gained a LOT of weight. Previous to thyroid issues I had always been between 115-120 lbs. In 2007 I was at my heaviest close to 200 and had been pumped full of Prednisone since diagnosed (along with all kinds of other nasty stuff!).

                The puffiness finally started subsiding in 2008, but I had dropped all medications except thyroid hormone replacement (against my Dr's advice, of course!). Additionally, I was diagnosed with Fibromyalgia & Osteoarthritis. Last year I was told I have high cholesterol and ulcers from years of pain medications. (What's one more problem...sigh).

                Around June 1st I started eating better and working out. I've since gotten my weight down to 155. I never thought I'd be able to lose weight because of my lack of thyroid (and I read that a lot online, too!). I just got tired of feeling like crap all the time! When I started eating healthier I was eating grains, but only in the way of Cheerios, bran, oatmeal, and Fiber One. I hadn't found this site yet. When I did discover the site, I changed my diet some to eliminate the grains. I had already cut down about 90% on dairy and sugar.

                It took about 2 full months before I started to really feel better! Just last week I realized I was totally over-training. I read some more and cut back. Changed things up due to advice on this site. Not only has my energy just recently spiked, but the only aches and pains I suffer now are DOMS! My moods are more stable and upbeat. I still have sleep problems (have for the last 3 years). I feel if I could improve that, I'd have it made!

                The only real complaints I have now are one: severe bunions and arthritis in feet (but I just do what I can). And two: I was laid off work last year and am still unemployed. Eating healthy and particularly primal---is expensive!!! I've just recently realized I am not eating enough healthy fat (meats). I just really can't afford it. But all in all, I think I'm doing so much better.
                Starting Weight/BMI: 184/29.7
                Current Weight/BMI: 130 /21.0
                Ultimate Goal: 125/18

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                • #9
                  I also have autoimmune disease....Ankylosing Spondylitis. Hypothyroid suspected Hashimoto's. I am pretty sure I have IBS, too. I am trying to go grain/bean/starch/sugar free in response to my latest flare which has caused me a lot of joint pain in places that were previously unaffected.

                  I'll let you know how it goes. I've only been doing primal for 7-10 days. I think there's some improvement in my elbow, but it's hard to say at this point for certain.

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                  • #10
                    Hashi's... It's not been horrifying in the last year... so, I can't report yet. I also have twins that have kept me awake for years. So, now as I embark on more restfull nights, I'll have a better idea... here's hoping! (if nothing else, I hope my spelling improves. The brain fog has made me NOT smarter than a 5th grader!)

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                    • #11
                      Vitamin D will play a huge role in resolving the autoimmune issues.... It's importance can not be overstated. I believe that in 20 years we'll know that fetal vitamin D deficiency was the main cause of autoimmune disorders.


                      Ankylosing Spondylitis
                      http://www.vitamindcouncil.org/scien...ndylitis.shtml

                      Diabetes (certainly type I isn't curable but D still is important)
                      http://www.vitamindcouncil.org/researchDiabetes.shtml

                      Inflammatory Bowel Disease
                      http://www.vitamindcouncil.org/scien...-disease.shtml

                      Multiple Sclerosis
                      http://www.vitamindcouncil.org/researchMS.shtml

                      RA
                      http://www.vitamindcouncil.org/scien...rthritis.shtml



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                      • #12
                        I was dx'd with Fibromyalgia/CFS 20 years ago. My family all has Ankylosing Spondylitis, tho I don't present the HLA-B27 antibodies, so I didn't get that dx, thankfully! Needless to say, these past 20 years have been hell!

                        Until the PB, that is. It works for me, and I have been symptom free for months! Not only have I been able to get out of a nasty flare (post cancer-treatment), but I've been able to do things that would always, in the past, have put me into flare. I haven't had a brain-fog in over 6 months. That blows my mind.

                        I'm not 100% Primal, but I am better than 80%. I find that it's a matter of management. The closer I stick to the PB, the better I feel. The further I slip, the less good I feel. Sometimes, I notice that I've slipped a little too far, and have started to feel just a little tired or blue - and then I know it's time for a fast and lots of rest, and I'll be back in the game in no time. This is NOT how it used to be, on the standard American diet, let me tell you!

                        I do want to mention, that in my experience, it's not simply the diet. It's about the physical aspect, too. The daily moving around makes a big difference. Initially, I relied on dietary changes to get me back on my feet and able to get out of bed again. Once I was able to move around on a daily (or most-daily) basis, is when I started to see the real change, tho. My rule: NEVER over-do it. Those who are otherwise healthy are much more able to recover than those of us with FMS/CFS/etc. It simply takes us longer.

                        So here's another voice for the success of the PB in dealing with autoimmune issues!!!

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                        • #13
                          I've recently started taking Vit D...the oily drops. Hopefully that plus daily walks outdoors will help with my arthritis/AI stuff. I've been in flare now for a couple of months...since I was diagnosed with thyroid issues last year, I've never felt as tired or run down. I think that primal living will help turn that around. Also, some rest might help, too. I'm getting more in control of my life and health...stopped saying yes to things that I know will harm me. Sounds easier than it is.

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                          • #14
                            Originally posted by PhDenial View Post
                            I've recently started taking Vit D...the oily drops. Hopefully that plus daily walks outdoors will help with my arthritis/AI stuff. I've been in flare now for a couple of months...since I was diagnosed with thyroid issues last year, I've never felt as tired or run down. I think that primal living will help turn that around. Also, some rest might help, too. I'm getting more in control of my life and health...stopped saying yes to things that I know will harm me. Sounds easier than it is.
                            Please test levels though as well. when not getting any reasonable sun exposure, it takes most folks about 1000 IU per 25 lbs body weight to maintain D levels. Amounts 3-4x that can be taken for the first month to get levels up quickly.

                            At least 2x/week, be sure to get actual sun, full body, in a small bathing suit, with no sunscreen, midday to the point just before a burn would occur. B/c I'm vain, I do cover my face, neck, chest, hands and arms meticulously while sunning.

                            Regarding Vitamin D and RA:



                            And a lot more.
                            http://www.vitamindcouncil.org/scien...rthritis.shtml

                            So. When can you get your level tested?



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                            • #15
                              I have been diagnosed also with several autoimmune challenges. Hypothyroid,sjogren's, FMS/CFS,MCS and CTD. Plus I have 3 out of 4 positive genes for gluten sensitivity. I actually started lsoing weight with diet and exercise 2 1/2 years ago with W/W. I dropped 50 pounds in 9 months.
                              Just a little over a month ago I found out about this website and primal eating. I have been eating PB for 5 weeks. I lost several pounds the first week and then gained it back. I do feel better on this eating plan. My inflammation seems much better and the FM pain is also better. I am waiting now for Spectracell test results. I'm very anxious to find that out as it has been 3 years since I was able to have that test done.
                              I agree though that it is what you eat AND how much you move. For me, I need to workout and listen to my body when I try to overdo,otherwise I just end up in bed for several days. I believe that this is the best way for me to live and increase the quality of my life for the future. I learn a little each day from the people here....you gotta love that!

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