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  • Any other autoimmune sufferers?

    Hello - I'm new to this forum, and wasn't sure which section to post under, none really seemed to fit. Since I'm most interested in nutrition, this is where I ended up. I am 30, and I have recently been diagnosed with MCTD - I had bad joint pain, hair loss, IBS symptoms and chronic fatigue. Looking on the internet for less drastic means of coping than prednisone, I came across the paleo diet, and from there to MDA. I have been on the diet for about three months, although 100% (or perhaps 95%) only for a month. So far I have lost the IBS, fatigue and nearly all the joint pain - I don't need to take painkillers (which is a big step for someone who was almost unable to walk, and incapable of picking up my 2 yr old). I wondered if there are any other primals with auto immune diseases out there, and what they could advise nutrition-wise to help symptoms? I also have very high ANAs in my blood work (last done in February, before properly going primal), anyone know how to get these down?

    I'm really convinced and inspired by MDA, and I would really like to know more that is relevant to my situation.

  • #2
    I have Crohns. Removing grains and gluten really helps with overall pain and fatigue. The SCD diet is a bit complicated but its been recommended for Crohns and other autoimmune disorders. Is a good place to check out. Dairy could also be a problem, especially lactose (milk sugar) and casien (milk protein). Monosacciride sugars like honey and fructose in fruits don't seem to cause too much damage and are allowed on the diet. Although the sugars should still be kept to a low amount so you don't go over 150 g of carbs a day.
    My journal where I attempt to overcome Chrohns and make good food as well


    • #3
      I'm 100% sure that most dairy and gluten makes my immune system pwn my stomach so I suppose I'm on the fringe of autoimmune suffering. Not that I'm suffering.
      Stabbing conventional wisdom in its face.

      Anyone who wants to talk nutrition should PM me!


      • #4
        Hi! I was DX with Lupus, which is very similar to MCTD, about 9 months ago and prior to DX dropped out gluten, sugar, caffeine, and cows milk dairy and added about 3 g of omega-3 a day and I was already eating all organic/grass-fed/etc. which steadily dropped my SED rate and CRP which are inflammation markers. I am not sure if your doctor has discussed the meaning of ANA and each pattern yet, but the level of ANA does not necessarily correspond to disease activity. I.E. just because you have high ANA markers than last time does not mean you are doing worse. There are other markers that are more significant such as the inflammation ones I mentioned and C4/C3 numbers.

        I am glad to see you have had benefits already! I too lost the pain and body fatigue after going primal and was able to finally get off the prednisone I was taking for lupus. It is a process though but I can say that I am improving. I am still tinkering with my ratios as fat loss is a big goal for me as well as feeling better. If you haven't dropped dairy or caffeine yet I would try that to see what effects it has. Caffeine is detrimental to autoimmune diseases, but you should taper if you drink a lot now. And of course no soy, but if you have been primal for a month I am sure that is not a problem.
        Edible, adj.: Good to eat, and wholesome to digest, as a worm to a toad, a toad to a snake, a snake to a pig, a pig to a man, and a man to a worm. ~Ambrose Bierce

        (R)evolutionary Cuisine

        My Journal


        • #5
          Before going primal I was being passed from one specialist to another looking for the cause of why a healthy 34 year old would get sick every 30 days or less. Not only was I sick all the time but exhausted. I looked like hell too. I had all sorts of small issues that didn't seem to fit together along with the chronic illness. I did everything CW told me. I ate right, I tried to exercise (the fatigue was killer though), and I took handfulls of suppliments to help repair my "shot" immune system. After being put on steriods for a mysterious sinus condition that has no cause or explanation other than inflammation (I also have a skin condition that has the same explanation) I decided that I had to do something and fast. My specialist was not really listening. I was falling apart on multiple levels but no one was looking at my situation as systemic. I read Good Calories Bad Calories and then stumbled over to Primal Blueprint. I am healthy now. I have not been sick in six months. The fatigue vanished very quickly. I look great and I feel wonderful.


          • #6
            Originally posted by Stabby View Post
            I'm 100% sure that most dairy and gluten makes my immune system pwn my stomach so I suppose I'm on the fringe of autoimmune suffering. Not that I'm suffering.
            Continuing to eat food that causes your immune system to mount a defense could push you over the edge though ... so be careful.
            MikeEnRegalia's Blog - Nutrition, Dieting, Exercise and other stuff ;-)


            • #7
              I have RA and have been dependent on dmards & prednisone for years. I am currently on Enbrel. Since being on PB, i have stopped injecting weekly and am now injecting once every two weeks with the hope of stopping altogether in the not too distant future. Another vote for dropping dairy or severely limiting it. It makes a huge difference for me (but is also harder for me to drop completely than the grains).


              • #8
                Originally posted by deborahck View Post
                So far I have lost the IBS, fatigue and nearly all the joint pain......I also have very high ANAs in my blood work (last done in February, before properly going primal), anyone know how to get these down?
                Mine went away when I got my 25(OH)D in the middle of the reference range. Around 64 ng/mL iirc. More D info can be found in the D link in my signature

                here's the long list of stuff I used to have and don't any longer. about 75% resolution of issues is due to D.

                Here's the long list - greyed items are no longer an issue at all.

                anorexia and bulemia and various time through early 20's

                anxiety 25-32 severe and debilitating
                (still occurs rarely - now mild, rare and treatable with GABA, inositol etc)

                arrythmia (heart palpitations) - 13 or so through 36?38?
                (completely treated with fish oil, taurine and sufficient magnesium)

                asthma (since it's worst from 30-38)
                bronchitis ('chronic' per my ped until 10 or was a 3.5pk/day smoker)
                bursitis - early 20s
                (appears to have been related to the vitamin d, magnesium deficiency)

                depression - 11-32ish
                dyspnea age 13-recently
                (when it's not anxiety, it appears to be GERD..sometimes from a grain/sugar
                consumption issue, simple overeating or sometimes even without 'bad' food)

                eczema - severe/disfiguring - birth through age 36 or so
                ear infections and tonsilitis as a child - frequent (tonsil/adenoidectomy age 10)
                last ear infection during high school - very severe
                psoriasis - 29-30.

                (disappeared when I went gluten free, though for many it will require vitamin d)
                seborrheic dermaititis (dandruff)- 23- 34ish completely immune related
                (fixed with suffcient zinc and D...and being gluten free)
                upper respiratory infections as a child/adolescent - frequent/chronic
                ✥ upper respiratory started again at 25 (pheumonia 9x)
                fibromyalgia symptoms enough for a dx (25-33)
                lupus markers enough for a dx (36?)
                osteopenia/osteomalacia - 3 years of age - early 30's
                (appears to have been a simple vitamin D deficiency)
                hip pain (and tightness) started around 23
                (appears to have been vitamin D and magnesium insufficiency)
                ✥ symptoms of sjogren's syndrome (29-32)
                ✥ severe post partum hemmorhage (1 L) with second child
                frequent/chronic yeast and other opportunistic infections
                (don't worry about killing the fungus - get off grains/sugar, fix vitamin d levels)
                Last edited by cillakat; 05-22-2010, 12:47 AM.

                iherb referral code CIL457- $5 off first order


                • #9
                  I was encouraged to read your post. I too have MCTD. I understand your pain and symptoms. I have been on the diet for 6 months and they went off because of input from my brother who is an MD. I was on prednisone at one point and was over medicated. I will never take that again!
                  I am interested to know what you have learned being on the diet. Does it help with your symptoms?


                  • #10
                    Ankylosing Spondylitis here. Hooray! Most symtoms have vanished, though, so hooray for real.


                    • #11
                      Good to know that someone with an autoimmune disorder like MCTD is finding results on primal. I was on the diet and then switched off for a few days. My MCTD has come back raging. I honestly am confused if i should go back on primal or stay off.
                      My MD brother and wife are both concerned that not having an entire food group is unhealthy. Thoughts?



                      • #12
                        Re- read your post and you have your answer! I know it's hard to buck the family MD, but realize they get NO nutrition training.
                        Ok, maybe a couple hours at best...really. There is no harm in dropping a food group.

                        Print out some of the medical research study citations Mark gives in his posts and give them to your brother.
                        At the end of the day, it's YOU who is the one suffering, NOT your well meaning , but misguided brother. Do what works for YOU.


                        • #13
                          Originally posted by infradiggy View Post
                          Ankylosing Spondylitis here. Hooray! Most symtoms have vanished, though, so hooray for real.
                          Me too! I am also pretty much symptom free these days from following Primal. Grains and starches are my main issues. I seem to be ok with moderate amounts of dairy though :-)


                          • #14
                            I have Addison's disease. My adrenals aren't going to regenerate no matter how good my diet so no ditching meds for me, but I have a pretty decent QoL. Can exercise some, slowly building muscle and feel pretty good most of the time. I'm sure I'd do better if I went on a strict autoimmune protocol but I have a hard time ditching nightshades - especially peppers.


                            • #15
                              Hi deborahck, I have MCTD and was diagnosed just before my 30th which was two years ago now. I've also considered myself a healty eater and maintain a very active lifestyle especially considering the MCTD. I lift weights 6 days a week and run to combat stress. I have only begun my Paleo journey and the only part of my MCTD that I haven't been able to 'control' is the joint pain and RA. I am very hopeful that this Paleo gig delivers on the easing of the inflammatory side of our condition. If you ever wanted to chat just let me know.