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Successes for those with Autoimmune Diseases?

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  • #76
    Yeah! My kid sister has horrific psoriasis. I've told her time and again about grains (if she could just start there!) but her response is it's her comfort food. Sooo frustrating.

    Glad to hear your psoriasis is better!!
    Because if you didn't know, of that is life made: only of moments; Don't lose the now.
    ~Borges

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    • #77
      Originally posted by hazmat View Post
      Bump

      A week without dairy/grains/nightshades/nuts and eggs and my psoriasis has gotten a lot better.
      I am glad to hear this! I am no dairy/grains/nightshades/eggs but have kept nuts in. I think this has motivated me to try a couple weeks without nuts too. Congrats on the success!
      Using low lectin/nightshade free primal to control autoimmune arthritis. (And lost 50 lbs along the way )

      http://www.krispin.com/lectin.html

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      • #78
        Originally posted by jammies View Post
        I am glad to hear this! I am no dairy/grains/nightshades/eggs but have kept nuts in. I think this has motivated me to try a couple weeks without nuts too. Congrats on the success!
        Thanks! the diet is boring but it hasn't been that tough. It's an amazing feeling when it starts getting better.

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        • #79
          I've been on primal for a few weeks now and just got my first normal TSH and Free T-4 test. That's all the endo usually checks. I'd be really curious to see a thyroid antibody test, though. Plus I've lost a bit of weight. It's the first time I've been able to shift anything since going seriously hypothyroid a few years ago. The best I was able to do was stop gaining. And that took basically being hungry a lot of the time. To be able to actually lose some weight without killing myself is amazing to me. I still have a bit of myxedema but I understand that can take some months to return to normal. My basal temperature is 97.8 up from 97 or lower and I'm not cold all the time.

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          • #80
            I'm new to the board. But I've got various auto-immune issues like Iritis, Colitis, terrible insomnia (which I believe is just another form of inflammation-for me at least), and undiagnosed problems in my 'female' region. Doctors can't find anything abnormal but to me, it's just all a chain reaction to the inflammation happening in the body.

            I've only been primal a few days now, so I can't say if it's helping BUT years ago I was 100% primal without knowing what it was. I did Elaine Gottshalls diet for intestinal disease which is basically primal and everything cleared up! I mean, no insomnia, my periods/pms regulated on it's own, the colitis symptoms went from being debilitating to almost non-existent ( I say almost because I ate a lot of cheese and homemeade yogurt and dairy and me do not mix well ). I'm sure there is much more that happened on the inside that I don't know about but I can say I felt well .. for the first time in many years. I stumbled upon primal because I never feel well anymore and I keep having mysterious pains and sickness all the time. I NEED to stick to primal .. feel like my life depends on it.

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            • #81
              I have osteoporosis (and I'm not even 25 yet), and at one point (a couple months ago), next to NO levels of niacin or Vit D in my blood. I am a self-diagnosed celiac (with the support of at least one doctor, and EDS expert), and I also have Ehlers-danlos syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). The EDS is not an autoimmune disorder itself, it's actually a genetic defect in how collagen is synthesized, but there seems to be a higher instance of autoimmune diseases in people with EDS than the population at large. The POTS causes all kinds of cardio symptoms, including, as the name suggests, tachycardia every time I stand up, presyncope (because my blood has descended into the lower half of my body, away from my brain), and many other symptoms.

              I went gluten-free a month ago, and immediately, the marathon vomiting episodes first thing in the morning went away. COMPLETELY! I had been doing this for over a decade. It has only returned (and more often than not, it's just nausea) when I've been glutened. But, I was still pretty tired, and was still very inflamed. So 2 weeks ago, I started PB, and my knees that have been swollen to over twice the normal size have slowly started going down, and for the first time in my whole life, I actually have normal looking knees! Inflammation that I didn't even know I had elsewhere is going down, too. My stomach, which used to make me look at least 6 months pregnant is getting flatter and flatter every day, and I have a feeling once I completely cut out nuts and dairy (except for ghee) that it will completely resolve.

              The greatest part is that my normal pain levels have gone down CONSIDERABLY. It was normal for me to hover around an 8 on the scale. I don't think I've been above a 3, and that was with dislocations. With EDS, joint dislocations are a normal part of life, although that, too, has gone from 60-70 times a day (sometimes just by rolling over in bed or getting up from a chair) to around 20 times a day. And if I weren't a pianist and organist, it would be even fewer times a day.

              I love that I also have so much more energy now, and it's not the "hyped up" energy that I used to get on pure carbs (another sweet tooth here). It's much more natural, and though there are ebbs and flows, it's not hyper and crash type energy. Same with my hunger levels. I used to be completely ravenous all of the time, and would binge frequently, at least every other day. The only time I've binged since was after an accidental gluten poisoning (and it was on just dark chocolate, and NOT the dark chocolate pastry I REALLY, REALLY wanted).

              I'm able to eat good, healthy foods, be grateful for the energy and nutrition that comes from those foods, and not obsess over the fat content, or how much I was going to gain with it. That I am learning how to have a healthy relationship with food is very miraculous to me, since, although it's been some years since I've actively engaged in an eating disorder, the underlying obsession has never really gone away. This is the quietest it's been in years.

              I've dropped weight, without any intention of doing so, and in a very healthy manner, while eating healthy portions. I don't know how many pounds, but I'm now having to dig out my "skinny" clothes I've not been able to wear after I started gaining my belly as my normal clothes are falling off of me.

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              • #82
                That's truly inspiring, mcc0523! I'm so glad you came to this way of life as early as you did. 25 years of that is already more than I can imagine. I'm so glad it wasn't a moment longer.

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                • #83
                  one of my oldest and dearest friends has scleroderma. Since diagnosis - about 10 years ago, she has gone from a vibrant, positive woman - to a disabled person who has "become her disease". I rarely manage to get her "off topic" for more than a moment. Its understandable, she is in pain, she cannot breathe, she cannot eat (reflux from damaged oesophagus and the coughing from her lung damage mean she is sick after almost any food). She is depressed - of course - and apathetic about considering any change.

                  Her diet is - and almost always had been - appalling and centres around bread and cheese - both of which she loves. When she was first diagnosed, she went to a nutritionist who basically put her on fish, meat, veg and large quantities of short grain organic brown rice. No gluten, no dairy. Little fruit. She had an amazing turn around of symptoms and the disease progress was stopped if not turned around. She lost weight (which had crept up) effortlessly and her energy was better. BUT after 18 months, she simply "got bored" of the food and began to cheat - before too long she was back to her usual diet and the disease accelerated. Neither my husband nor I could understand and I asked here about it (carefully, she is extremely sensitive to any apparent criticism). It boiled down to "I'm dying of this anyway, I hate brown rice, I hate veg, i hate meat. I will not eat it any more".

                  Reading this thread I KNOW PB could help her - I think this forum thread could make her see some potential hope. Her lungs are less than 1/3 now - the rest on an Xray looks like old brittle coral - which is sort of what it has become. Her digestive tract is shot to bits. Her joint inflammation is beginning to mean she cannot use her hands well. She has NO muscle left - making everything she can do harder and harder. She is skinny - yet still "chubby" somehow. Not that appearance is top of my list for her, but it is for her still (which is good).

                  I fear that soon she will be house bound, unable to work (she clings to work and saves all her energy to get there) and work is literally all that makes her move. At weekends she is practically immobile. Is this just too far gone and I should keep my thoughts and this WOE to myself?? She isn't impressed that "fad woman" as she thinks of me is on another quest for wellness. Even though she has known me at my worst thanks to CW she still doesn't accept the changes this has made for me. I am told "you do not understand" and if I press, she becomes VERY angry or very upset. So - is it too late?? How would you approach this??

                  BTW she is outside SO little I doubt she has any Vitamin D in her system at all!! BUT no chance of getting her to supplement without a rock solid argument!

                  I must sound awful - I am only describing things to bluntly because its shorter and less cluttered up with sympathy. I HATE the thought that I will soon go to her funeral - I'm willing to risk a bit of wrath to avoid it and help her! Just not sure I can.
                  Last edited by denise; 02-25-2011, 05:54 AM.

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                  • #84
                    denise- I am so sorry to hear about your friend, and I'm sorry that you're watching her deteriorating health with little hope of positive change. Your post did not come across unsympathetic at all.

                    As to making suggestions to her, I feel that, as a close friend, it's almost your duty. Granted, it's all in the delivery. This stands true for any 'hard to swallow' advice you would give a friend. I had to recently tell a friend who is in an abusive relationship to please not marry the guy. I was worried I would lose her friendship over my voicing of that. But I told her, you know i love you, and you know I'm only telling you things that I honestly feel, going further and saying that if the situation were reversed she would like tell me the same thing.

                    Point being, the diet change topic could be broached with all of those caveats too (because it's true). Tell her that you've read a lot of people with autoimmune diseases being helped, that you yourself are eating this way, that out of love for her you mention this. Then just ask her if she could do 30 days, just 30 days, very strict. And offer to help her with food shopping and/or prep so she's not overwhelmed with the whole new way of eating.

                    FWIW, I f*cking hate brown rice too.
                    Because if you didn't know, of that is life made: only of moments; Don't lose the now.
                    ~Borges

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                    • #85
                      Originally posted by say_rahhh View Post
                      denise- I am so sorry to hear about your friend, and I'm sorry that you're watching her deteriorating health with little hope of positive change. Your post did not come across unsympathetic at all.

                      As to making suggestions to her, I feel that, as a close friend, it's almost your duty. Granted, it's all in the delivery. This stands true for any 'hard to swallow' advice you would give a friend. I had to recently tell a friend who is in an abusive relationship to please not marry the guy. I was worried I would lose her friendship over my voicing of that. But I told her, you know i love you, and you know I'm only telling you things that I honestly feel, going further and saying that if the situation were reversed she would like tell me the same thing.

                      Point being, the diet change topic could be broached with all of those caveats too (because it's true). Tell her that you've read a lot of people with autoimmune diseases being helped, that you yourself are eating this way, that out of love for her you mention this. Then just ask her if she could do 30 days, just 30 days, very strict. And offer to help her with food shopping and/or prep so she's not overwhelmed with the whole new way of eating.

                      FWIW, I f*cking hate brown rice too.
                      I know you're right, but she's not local - about 2 hours away - so its often phone calls we have (interrupted often by a bout of coughing that leaves her throwing up). I will try to throw it in though. I have had "please, I am too tired to try". Last time she came out of hospital (lung infections are frequent and dangerous for her) I volunteered to go up, look after her, cook, shop etc (and get some good foods into her and maybe even a short slow walk outside) but she simply didn't want to try. Instead she asked family to get bread, cheese and chicken breast (for sandwiches) and sat indoors.

                      I understand the sheer exhaustion of illness (not hers, but I had ME for 18 months so exhaustion - I know) but I can be torn between the urge to shake her and the urge to leave the poor woman alone.

                      BUT I will try on our next phone call. Maybe if I sound naively upbeat and perky about it and give no chance to descend into negativity I can get thru. I do doubt it - but I WILL try, you're right I have to. If I don't, will I feel culpable for her continued disintegration?

                      Oh - and I think EVERYONE hates brown rice Only ever "enjoyed it" when swamped with a strong curry etc.

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                      • #86
                        my first post, I have psoriatic arthritis and take 25mg of methorexate a week. I started eating PB a week ago and its been going well, until today when I've been quite lethargic, however I think I've over done the exercise. I've played futsal (5 a side football/soccer) twice this week and just done too much as my shins are really sore. Not really started on the fitness yet but do the occasional long walk, I would like to loose 24 pounds or so as I currently weigh in at 210 and its heaviest I've been in 2 years.

                        Time will tell if it has a positive effect on my auto immune disease, I've only got a bit of psoriasis but have frequent arthritis flare ups in toe joints and fingers and also have very weak muscles around knee joints and some problem with weak iliotibial band/hip abductor (according the physio), in fact Im generally quite 'weak'!!, need to loose some fat before I work on strength though

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                        • #87
                          Keep us posted philangst. From the reports of others, it seems pretty likely you're going to see some good results with the arthritis.
                          My primal journal
                          You might find these handy: Free gluten free restaurant cards in 50+ languages
                          In Praise of the Primal Lifestyle

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                          • #88
                            I have Grave's Disease and had radioactive iodine therapy.
                            I started suffering with severe stomach issues, asthma, rashes, chronic sinus/ear infections over 15 years ago. After many tests, and no answer as to why I had horrible reflux and pains, I was told that I would have to take prilosec the rest of my life. At the urging of an allergist, I did go gluten free (and maintained it almost ten years) with many of the worst symptoms within "livable means". I stupidly went to a holistic doctor that 'cured' me of my problem after urging from a friend. I never could stop taking prilosec because of raging reflux and I started slowly eating gluten containing grains again, which I know made it much worse. Within a year, I was starting to have all the old problems again, coupled with other problems (unexplained weight gain, shortness of breath, swelling in joints and face, racing heart, fatigue and more). That's when I was diagnosed with Grave's. It's been two years now, and went back to eating mostly gluten free but not entirely free of health problems. Until recently, I have been 80/20 on PB and now after having increasing episodes of swelling, rashes, reflux with vomiting when eating grains, milk or preservatives, I have gone completely grain and dairy free. I now only take a 150 zantac and allergy meds when I eat where I can't control the food (like a friends house or restaurants).
                            If I stay 100 percent Paleo, I feel great!! It gets to the point that it is not worth cheating, even a little bit. Even if I don't show outward signs of inflammation, I know it's there inside and doing damage.

                            Thanks so much to Cillakat and Paleoman for all the great info and links! I am in nursing school and it's amazing what is taught and what is not. BTW, my last thyroid check I asked for test for calcium and vit D- ok on calcium and almost nothing in vit D. So, on with the Vit D. Hopefully next test will be better.
                            I learned a valuable lesson with the first steer I sent to slaughter. I should have named him Hamburger and not Snookers.

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                            • #89
                              I also have M.S. (diagnosed in 2007). I've read up a lot, and also watched video presentations pertaining to the benefits of a Paleo/Primal lifestyle. It's encouraging to hear real results from fellow MSers, firsthand. I am gradually cutting out the dairy, as I'm new to the Paleo/PB way of life. I realize PB permits some dairy, but I see that I'm better off without it (having an autoimmune disease). I also avoid tomatoes (as supposedly the lectin in them can harm those with autoimmune diseases). I have done away with grains,legumes, and processed food as well. I stick with lean and fatty meats, good fats (coconut oil/olive oil) veggies, fruit, nuts etc. I am currently taking Rebif (reluctantly) for my MS. It would be wonderful if one day I could forgo the Rebif, or at least decrease the dose. I hate the side-effects (sorry to whine).I'm just so happy I found all of this information early on, when I can make a difference. The PB book is a great reference tool too. As a bonus, I wouldn't mind losing a few extra pounds....(just saying).
                              Last edited by PoeticPixe; 03-09-2011, 02:04 AM.
                              No one saves us but ourselves. No one can and no one may. We ourselves must walk the path.
                              -Buddha

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                              • #90
                                My Mom has RA & Osteo and has suffered almost all her life. My siblings and I have many of the same issues. Last year, I had sever pain in my left hip & knee and a shoulder that just would not heal after a fall. I was in so much pain all the time that I was on Ibuprofen constantly (and ruining my stomach) and needed narcotics to sleep. I mostly laid on the couch in a ball hoping that rest would make me feel better. I went to see my Dr. to get tested for RA and check into other possibilities. I asked him about diet and he said there was none for RA and just gave me more narcotics for the pain. I've also had mulitple hand sugeries for trigger finger, carpel tunnel & other tendon issues. They always found lots of scar tissue on the tendons.

                                Last April, my brother had somone suggest removing nightshades from his diet. He asked me to research it and I tried it too. Within days I was a new person - no more pain!!! I could not believe what these veges had done to me for many years. I lost 40lbs within 2 mo. and rarely take Ibuprofen now. I then removed wheat to further limit inflamation but found no real benefits that I noticed but continued on as it sometimes takes a while to see results. As the holiday season approached I remained nightshade free but ate lots of junk. I gained ~10lbs. back.

                                Jan. 3rd a friend told me about paleo/primal eating and I tried it. I've lost 30lbs in 2 months and am doing much better in many ways. I can tell that my body is healing in many ways and friends have noticed saying that I'm "glowing". Everyone heals differently probably depending on the exact issues you are dealing with. I'm waiting to see how my thyroid responds with time, hoping it can heal also as it has been slowly losing function over the years. For everyone frustrated by slow results, please be patient. It took time for AI issues to develop and may take time to reverse.

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