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Successes for those with Autoimmune Diseases?

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  • #16
    Originally posted by cillakat View Post
    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?
    Hi Cillakat!

    I live in Canada, in the city that statistically receives the least sunlight of all cities in the country, so I highly suspect I am Vit D deficient. Our docs here have stopped doing the tests because the vast majority of our population is deficient. It's cheaper to just treat with Vit D supplements than to conduct the tests. The issue, of course, is knowing how much and what kind of Vit D...that information is NOT well known by doctors or patients. Thanks for pointing out those links. I did take the white 1000 IU tabs previously along with my fish oil tabs (1-2 daily), but I know that I probably need more and of a different kind. I am now using your forumla 1000 IU per 25lb of body weight. Since I've read that toxicity is hard to achieve with supplements, I'm not in a huge rush to get my Vit D tested, although perhaps I will order one of those kits, if they will deliver to Canada. Thanks for your info!

    So Vit D was the missing link for you with all your issues? I share a lot of them btw, (depression and anxiety, too).
    Last edited by PhDenial; 08-02-2010, 11:03 AM.

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    • #17
      Hi Selah,

      Congrats on the weight loss! Also had great success with W/W a while ago. And I have not gained back the weight I dropped from that experience. I think I was also hypothyroid/depressed back then. Constantly sick for years.

      Not much better now, to be honest.... but trying to get better. I'm hoping that the primal way of life will help me get back to health.

      I also agree about movement being important but also, not pushing it. I learned that the hard way. I hired a personal trainer for 5 months in 2009. Did not shed a pound or an oz of body fat. That was before I was treated for hypothyroid and before I started cutting back on calories. I got stronger and fitter for sure, but I was over training. She was pushing me so hard, not listening to me or my body. I was punishing myself into trying to be healthy.

      I like how this approach to fitness and wellness is not about punishment but about being natural. My rheumatologist wants me to go on disease modifying drugs....the ones that cut back your immune system. I don't think I'm going to go that route until I give lifestyle changes a chance to work. I don't think over-medicating is the answer for me.

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      • #18
        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.
        Yes!

        I've got a bunch of issues that include multiple autoimmune problems. I don't want to go into the "organ recital", but I'm definitely in the club here. I'm still new to primal, but it already helps. That provides extra motivation to get and stay with the program. I'm very high on PB right now because I've lost 15 lbs in my first two months and my head is clearer. It's good and my Dr is very happy.

        My goals are to get down to 20% body fat and stay there, and to get more functional strength. I don't think I've been below 30% body fat since I was a teenager. It is so, so great to imagine that as being within reach.

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        • #19
          I'm a type 1 diabetic, and my autoimmune system seems to attack in ways the doctors can't (or don't feel like) diagnosing. I had constant gastric distress (constantly swinging from horrifying diarrhea to painful constipation) and my joints were going the way of the dodo. Migraines, constant fatigue, other IBS symptoms, hiatal hernia and GERD...

          I'm still settling into this diet, but I can say that going off grains has improved my blood sugars by about 80% -- they usually stay in the "accepted insulin dependent" range of 80-150, which makes me happy. When I'm off wheat, both the hiatal hernia and the GERD symptoms settle down -- I can forget my morning pill for the acid reflux and not get any until its time for my evening pill. My joints are fine now. My energy levels are still weak, but I'm working on adding in vitamins as well

          The BM thing is still iffy.... the swings aren't bad anymore, and nowhere near as extreme, but "normal" poop is still a luxury....
          29 years old, type 1 diabetic with insulin resistance -- HORRIBLE a1c, and borderline cholesterol problems. Carb addict.

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          • #20
            cillkat: Thank you for the links and your insightful posts!!
            Starting Weight/BMI: 184/29.7
            Current Weight/BMI: 130 /21.0
            Ultimate Goal: 125/18

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            • #21
              There are several books that promote gluten-free and casein-free dietary regimens for relief from autoimmune disorders.

              An Australian physician, Chris Reading, used dietary interventions including GF/CF and reported good success in over 100 lupus patients:

              Trace Your Genes to Health: Use Your Family Tree to Guide Your Diet, Enhance Your Immune System and Overcome Chronic Disease by Chris M. Reading MD and Ross Meillon (Paperback - Apr 20, 2002)

              One of the more incredible accounts of an individual is that of Roger MacDougall, a British playwright and attorney who was severely disabled with MS and who worked through the science in a pre-internet era to conclude that what is essentially a Paleo type diet was essential to recovery. He made a full recovery, but had the astounding persistence to continue on his regimen with no improvement for four years before he started noting improvement. It seems that longer standing cases of autoimmune disease are slower to resolve. His account may be found at this link:

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

              There is a good book including the accounts of others who have tried what is essentially MacDougall's approach:

              The MS Recovery Diet by Ann D. Sawyer and Judith Bachrach (Paperback - Sep 20, 2007)

              More recently, integrative rheumatologist and researcher Alexander Shikhman, MD, PhD, wrote a book that reports his considerable success with lupus patients, as well as others with multiple autoimmune issues:

              Gluten Nation: The Alarming Role That Gluten Plays in Arthritis, ADHD, Autism, Bipolar Disorder, Cancer, Diabetes, Fibromyalgia and Other Ailments by Alexander Shikhman MD, PhD, Jacqueline Townsend Konstanturos, and Mary Lyons Collard (Paperback - 2009)

              Dr. Shikhman practices integrative rheumatology in Del Mar, California. I've heard very favorable reports from patients who have traveled to Del Mar to consult him. Rheumatologists who understand the role of diet and especially gluten and dairy in promoting autoimmune seem to be very, very rare. Here is his link, possibly worth a visit if someone with autoimmune is not too far across the country:

              http://www.ifsmed.com/

              Frankly, I've purchased dozens of these books and passed them out to numerous autoimmune sufferers, especially those deep in the grip of autoimmune diseases such as lupus, Sjogren's, and MS, as well as autoimmune thyroid disease and autoimmune hepatitis. Very few have been willing to seriously try the dietary changes involved. Or to apply the strictness that seems to be necessary for success when an adaptive immune response is involved.

              For those few who have been willing to incorporate the strict dietary regimens, which means 100%, not 98% or 99%, the results have been outstanding. Long term and apparently complete remissions. With lupus, RA, and autoimmune hepatitis. From significant disability to completely normal function. But so few have been willing to strictly follow the suggested protocols, that it is hard to know how universal their excellent responses are. And those willing to try the approach tended to be those who though they had severe disease, had not had it for as long as some others.

              Most success stories seem to involve common elements of strict GF/CF diet, elimination of some other exacerbating foods and factors, and supplementation including Vitamin D, magnesium, and Omega 3.

              My own suspicion is that even a tiny amount of occasional cross-contamination from substances like wheat gluten and perhaps casein may prevent or hinder recovery. I suspect that Primal folks who don't have autoimmune have some latitude for "cheating." I suspect that autoimmune sufferers may have none, zero. Working with GF support groups, my best estimate is that of those who describe or think of themselves as gluten free, only one out of four or so is actually avoiding gluten strictly enough to resolve or avoid adaptive immune system health problems.

              It will be interesting to see how things unfold as autoimmune sufferers support and encourage each other in pursuing recovery through dietary interventions. I hope a supportive autoimmune community develops and that they have the success reported of the group in The MS Recovery Diet.
              Last edited by Paleo Man; 08-05-2010, 06:53 PM.

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              • #22
                hi, my niece was diagnosed with actinic prurigo on monday, which basically means she's allergic to UV rays (both A and B i think). My sister has spent my niece's entire life taking her to the doctors and hospital referrals for her symptoms but it's taken 4 1/2 years for them to work out what the problem is - on her doctor's notes it says she's had chicken pox 6 times when she's never had it. Apparantly, it mainly affects south americans and people who live at high altitudes, but we live in britain, are white (she has quite pale skin) and we live pretty much at sea level. She suffers all year round with nasty lumps that are itchy which weep and bleed, but it is so much worse in the summer. She has been told to stay indoors pretty much all of the time and my sister has been told to get UV filters for all the windows in the house.
                My niece starts school in September, and she won't be allowed to go outside to play at break or lunch which I find really upsetting.
                I have been speaking to my sister about trying my niece on this diet as I really believe it will help - and certainly she should be taking vitamin d supplements as she isn't really allowed outside anymore.
                In December she will have to go to St. Thomas' hospital in London twice per week for light therapy which they say will either desensitize her body to the UV rays, or make it worse - they can't tell. The final treatment they will try is Thalidamide which I really, really don't want my little niece to take. (I don't know if if was prescribed in America, it was prescribed to pregnant women in the late 1950's, i think for morning sickness, and resulted in birth defects such as no arms or legs in the babies). If she gets put on this medication, my sister isn't even allowed to touch the tablets as she is still at 'child bearing age'
                I want to convince my sister to give this a go first, as no-one wants it to come to that medication, but I could really do with some advice about what my niece should be having (ie. supplements and diet) and if anyone else has got anything like this it would be great to hear how the diet has/hasn't helped.
                Thanks
                x

                Comment


                • #23
                  Originally posted by rachel_b View Post
                  hi, my niece was diagnosed with actinic prurigo on monday,
                  First things first....get this child on vitamin D asap. 400 IU per 10 lbs body weight. A S A P. See my link in the sig line.....



                  iherb referral code CIL457- $5 off first order

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                  • #24
                    I completely resolved Crohn's Disease by going strict Gluten Free. No more 18 pills a day, no more pain, no more blood, no more GI visits. I am OFF pharma drugs. When I first started going off gluten, I fasted off and on to rid myself of toxins and heal the gut...then I started adding other foods back in. But no gluten whatsoever. I've had no problems at all. The GI doctor, who, like most doctors in my life, never helped me one bit..must be disappointed since I never have to see him (and pay him) anymore. Oh well. Truth is, you need to research and find out how to heal yourself..because doctors are only interested in you as a customer, not someone who needs help.

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                    • #25
                      How long did it take? I've had Chrohns since 2003 so I don't think it will resolve quickly.
                      My journal where I attempt to overcome Chrohns and make good food as well

                      Comment


                      • #26
                        Originally posted by BlazeKING View Post
                        I completely resolved Crohn's Disease by going strict Gluten Free. No more 18 pills a day, no more pain, no more blood, no more GI visits. I am OFF pharma drugs. When I first started going off gluten, I fasted off and on to rid myself of toxins and heal the gut...then I started adding other foods back in. But no gluten whatsoever. I've had no problems at all. The GI doctor, who, like most doctors in my life, never helped me one bit..must be disappointed since I never have to see him (and pay him) anymore. Oh well. Truth is, you need to research and find out how to heal yourself..because doctors are only interested in you as a customer, not someone who needs help.
                        Great deductions and work on your part! Not easy to come to the necessary conclusions and stick with them when the physicians who are supposed to help are so unaware of these issues and often misinformed.

                        Most of them want the best for their patients, but there is just nothing in their training or the literature or seminars that they refer to that makes them aware of what you have learned. Diagnostic and educational computer resources tend to be highly underutilized by physicians, probably partly due to time constraints, and with the use of shared information patients can be ahead of the game for years, as you are.

                        Unfortunately, I must admit, to a large extent Max Planck was right, and we see the truth again and again in his sad quote:

                        "A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."

                        But if enough astute sufferers like you arrive at protocols that help and share them, not only will others benefit, but eventually the bulk of the medical profession might be embarrassed into recognition.

                        Comment


                        • #27
                          Originally posted by strom View Post
                          How long did it take? I've had Chrohns since 2003 so I don't think it will resolve quickly.
                          There is also the possibility that Crohn's in some significant proportion of sufferers has roots in dairy intake. Almost all dairy herds in the US are infected with paratuberculosis bacteria (MAP bacteria, Mycobacterium avium subspecies paratuberculosis) and ordinary US pasteurization temperatures are insufficient to kill this heat resistant bacteria. The disease is known to cause Crohn's-like symptoms in cows, and we now know that a large percentage of humans are infected with the same bacteria, apparently through dairy intake. The FDA still takes the position that it hasn't been proven yet that humans are harmed by being infected with this bacteria and therefore it must be harmless, i.e. that it may not cause in humans the same disease that it causes in cows. Modern dairy herd practices have all but guaranteed the widespread infection of herds, one cow will eat feed contaminated with diarrhea from another. Then all the milk from all cows is mixed together in central milk tanks ensuring that all product from the facility is contaminated with the pathogens from just about every cow.

                          Some countries have worked to minimize infection of cows, or to increase pasteurization temperatures enough to kill this widespread bacteria. Not the US, of course. The FDA is waiting for proof. Maybe the dairy council will fund a study sometime soon . . .

                          That there may be multiple factors that come together seems to be the rule with autoimmune disorders. A dietary component. And infectious component. A genetic component. And a lack of Vitamin D at a certain time in development. Gluten is increasingly implicated in the pathogenesis of many autoimmune disorders. Dairy in the case of Type 1 diabetes, and lack of D as well. So fingering gluten on one hand and perhaps MAP bacteria or other causes on the other hand in Crohn's may not be at all inconsistent.
                          Last edited by Paleo Man; 08-07-2010, 09:34 AM.

                          Comment


                          • #28
                            Originally posted by rachel_b View Post
                            hi, my niece was diagnosed with actinic prurigo on monday, which basically means she's allergic to UV rays (both A and B i think). My sister has spent my niece's entire life taking her to the doctors and hospital referrals for her symptoms but it's taken 4 1/2 years for them to work out what the problem is - on her doctor's notes it says she's had chicken pox 6 times when she's never had it. Apparantly, it mainly affects south americans and people who live at high altitudes, but we live in britain, are white (she has quite pale skin) and we live pretty much at sea level. She suffers all year round with nasty lumps that are itchy which weep and bleed, but it is so much worse in the summer. She has been told to stay indoors pretty much all of the time and my sister has been told to get UV filters for all the windows in the house.
                            My niece starts school in September, and she won't be allowed to go outside to play at break or lunch which I find really upsetting.
                            I have been speaking to my sister about trying my niece on this diet as I really believe it will help - and certainly she should be taking vitamin d supplements as she isn't really allowed outside anymore.
                            In December she will have to go to St. Thomas' hospital in London twice per week for light therapy which they say will either desensitize her body to the UV rays, or make it worse - they can't tell. The final treatment they will try is Thalidamide which I really, really don't want my little niece to take. (I don't know if if was prescribed in America, it was prescribed to pregnant women in the late 1950's, i think for morning sickness, and resulted in birth defects such as no arms or legs in the babies). If she gets put on this medication, my sister isn't even allowed to touch the tablets as she is still at 'child bearing age'
                            I want to convince my sister to give this a go first, as no-one wants it to come to that medication, but I could really do with some advice about what my niece should be having (ie. supplements and diet) and if anyone else has got anything like this it would be great to hear how the diet has/hasn't helped.
                            Thanks
                            x
                            One of the reasons that I began a food elimination trial six years ago was that I had not only GI symptoms, but a persistent longstanding rash that sometimes would weep and bleed a bit and seems to be associated with photosensitivity. Each physician that I saw thought it was something different. I don't have DQ2 or DQ8 genes, so it may not have been dermatitis herpetiformis.

                            Whatever it was, it disappeared completely with a strict gluten free/casein free diet and has only recurred on those rare occasions when I have accidentally been cross-contaminated with tiny amounts of gluten. If I am accidentally contaminated, the rash recurs in about 24-36 hrs and may take as long as 2 weeks to disappear. So I avoid cross-contamination religiously.

                            The timing of the recurrences and disappearances suggests that an IgG mediated adaptive immune system reaction is involved. On a strict gluten free Paleo type diet, I have zero problems with the rash and no photosensitivity at all. I can't say whether or not this would apply in anyone else's situation.
                            Last edited by Paleo Man; 08-07-2010, 09:50 AM.

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                            • #29
                              The only dairy I have now is heavy cream. Could that be a problem?
                              My journal where I attempt to overcome Chrohns and make good food as well

                              Comment


                              • #30
                                Originally posted by strom View Post
                                The only dairy I have now is heavy cream. Could that be a problem?
                                Strom, imesho completely omitting dairy would be ideal. As well as having little to no fruit, absolutely positively no grain and very few nuts.

                                Bone broth, muscle meats, signficant organ meats (incl marrow), plenty of D *from sun*....midday, full body till the point just before a burn occurs are the things that wil be most helpful. iirc, you're in the mid-atlantic/baltimore area? You have a few more weeks where getting D is possible.

                                Lots of probiotics. Lots.

                                Digestive enzymes with your food.



                                iherb referral code CIL457- $5 off first order

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