Autoimmune Disease buddies?

Hi there! I have rheumatoid arthritis (and celiac's, and Hashimoto's thyroiditis, and I'm 29...) and the general round of "let's exercise a lot!" "Let's eat these things" (which make me feel nauseated on my current RA meds) forums just aren't quite cutting it for me. So I'm wondering if there are other people trying to take control of their diet in hopes of increasing energy or even reducing inflammation, because of inflammatory conditions. I'm just recovering from a really bad flare in my knee, which led to my first cortisone shot and having to take time off of work. I'm still feeling this flare, though, which is why I've started tracking my food again. I hate feeling out of control, and I'm just hoping to find some other people to commiserate with!

(Full disclosure, this is really more about trying to reduce inflammation and increase energy for me, over weight loss. I'm starting on a ketogenic diet this week, which has helped my energy levels a lot in the past.)
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Replies

  • Jaycilynne26
    Jaycilynne26 Posts: 1 Member
    I have hashi's as well, and keto was great for me in the past. I'm trying to get back there. I wish you luck!
  • Tanith1992
    Tanith1992 Posts: 16 Member
    I have an autoimmune disease that affects my kidneys and so have been on Prednisolone going on 8 years!
    Being on corticosteriods for so long has really sky rocketed my weight, so I too am just looking for some weight control, to strengthen my bones and increase my energy levels too. Can't really do keto diets due to my kidney issues but enjoying exercising and eating lots of fresh foods.

    Good luck with everything!
  • lilyanneetc
    lilyanneetc Posts: 8 Member
    Wow, 8 years on Prednisone is a long time!
  • singingflutelady
    singingflutelady Posts: 8,736 Member
    I have crohn's
  • brucejei
    brucejei Posts: 102 Member
    I deal with auto immune issues as well, specifically Lupus. I started on MFP to help me keep track of what I eat as a way to deal with inflammation as well. You can add me if you'd like. Good luck with your journey!
  • QueenMother14
    QueenMother14 Posts: 438 Member
    I have Lupus and Raynaud's. I am currently waiting on labs and the doctor's opinion as to whether ainalso have Hashimoto's, adrenal fatigue or insulin resistance or a combination of those. I'm going my best to go gluten free to see if this help with inflammation and weight loss. I've gained about 50lbs in the last 3 years and haven't been able to get rid of it.
  • angelxsss
    angelxsss Posts: 2,402 Member
    I have Raynaud's and underlying Mixed Connective Tissue Disease. It's not causing many problems at the moment (from what I can tell) but y'all are going to be my inspiration for if anything does kick in.
  • shellinut
    shellinut Posts: 33 Member
    I have MS.
  • The_Movie_Chair
    The_Movie_Chair Posts: 112 Member
    I have RA
  • MaryBeth321
    MaryBeth321 Posts: 16 Member
    I also have MS, diagnosed at Mayo Clinic in 1993, I think it was. I don't cut any one particular thing out of my diet and am wondering why so many of you swear by gluten free / dairy free diets. Are you sure that diet is connected with your feeling better? Absolutely positive? I know a gluten free diet is a popular thing now, but I'm just not buying that it will cure all your ills to go gluten free. I also have had psoriasis and, once on Avonex for the MS, the psoriasis became a thing of the past. Now, if I'd gone gluten/dairy free, I'd convince myself that they were the culprits, when I know that would not have been the case. These things are very tricky. My neuro. doesn't advocate any particular diet, just portion control and eat healthy foods, which I do. Wish I was better at the portion control part, but... I can't tell you the last time I was at a fast-food restaurant. I do not abide that garbage!
  • Hamsibian
    Hamsibian Posts: 1,388 Member
    I have Crohn's Disease. I am eating based on the Autoimmune protocol guidelines to help heal. I also eat low carb plus eat and drink everything hot. I see both Western doctors and a traditional Chinese medicine doctor. Integrating everything has been the best health choice. I still have a long way to go, but my symptoms have improved greatly!
  • whiplashy
    whiplashy Posts: 52 Member
    I have psoriatic arthritis. I've tried the autoimmune protocol, going gluten free, dairy free etc but have found nothing that improves things. My consultant says any specific diet won't make a difference, apart from the obvious benefits of losing weight. I've been on prednisolone since September so the lbs have crept on. Hoping to be off it by the end of Feb. Concentrating on getting off the extra weight and trying to up my activity level. It's hard! I managed 6000 steps yesterday but can barely move today because of it.
  • flsunshine
    flsunshine Posts: 188 Member
    I was diagnosed with ankylosing spondylosis. I also have many joint and tendon issues as a result. Not to mention loss of space in my hip joints.
    Also looking for friends for support and motivation on getting back on track.
  • lilyanneetc
    lilyanneetc Posts: 8 Member
    I have to say that I do have celiac's, and not long after going gluten free I felt so much better, but that sort of bounce back relief lasted around two years before rheumatoid arthritis started kicking in so it isn't actually a miracle cure even though it controls my celiac's. Gluten free or dairy free or whatever is not necessary for everyone, but it does happen to be useful for a lot of people. Both those things, but especially and specifically wheat, cause inflammation. That isn't a problem for the majority of human beings, but it is way more likely to be a problem for people with inflammatory conditions!

    It's also worth mentioning that very few MDs will recommend a gluten free (dairy free, nightshade free, etc) diet, even for people dealing with inflammatory conditions, because the research isn't conclusive. Medical science tends to change incredibly slowly, for example while some cutting edge endocrinologists have been prescribing high fat low carb diets for years, the American diabetic society still recommends lots of whole grains, which means the party line is still low fat high carb even though that way of eating can be actually harmful to diabetics. I've also found doctors of osteopathy to be more open to the idea that diet can strongly impact health, over medical doctors.
  • lilyanneetc
    lilyanneetc Posts: 8 Member
    whiplashy wrote: »
    I have psoriatic arthritis. I've tried the autoimmune protocol, going gluten free, dairy free etc but have found nothing that improves things. My consultant says any specific diet won't make a difference, apart from the obvious benefits of losing weight. I've been on prednisolone since September so the lbs have crept on. Hoping to be off it by the end of Feb. Concentrating on getting off the extra weight and trying to up my activity level. It's hard! I managed 6000 steps yesterday but can barely move today because of it.

    I know you know this, but be careful pushing yourself! I certainly know that feeling of having to crash after pushing myself (my job is more active than many and also involves a lot of late nights, so I push myself more regularly than I should....)

    I think eating food which tastes good, makes you feel good, and is nourishing is the most important thing! I've had periods where I was so exhausted even the thought of turning on the stovetop and making eggs was overwhelming, and I ate a whole lot of microwave veggies, ready rice, and those Perdue shortcut chicken things!

  • CharlieBeansmomTracey
    CharlieBeansmomTracey Posts: 7,682 Member
    I have RA and other health issues. for me weight lifting has helped with the RA tenderness and pain that i had in the beginning. for me so far I have not needed to take meds for the RA. my hubby couldnt even massage my shoulders before I started weight lifting because it was so sore and tender. now,it doesnt hurt. I have had RA for many years, I am 42 now. If i can stay off meds that will be great.(I was diagnosed with RA around your age op).
  • KimF0715
    KimF0715 Posts: 114 Member
    I have Celiac Disease
  • Chieflrg
    Chieflrg Posts: 9,097 Member
    RA
  • queenhermione
    queenhermione Posts: 4 Member
    Hya,
    I've got polymyalgia rheumatica - pmr. It's an autoimmune that affects the soft tissue round the joints and is very disabling until you take prednisolone which 'cures' it. The trick is to taper off the pred while your body, hopefully, decides that's enough PMR for the moment. So on pred for at least a couple of years.

    Main reason I use MFP is to prevent the raging pred munchies taking control (pred already wants to give you diabetes and high blood pressure) and also carefully monitor my vitamin and mineral intake to counteract the osteoporosis that pred also wants you to have. Ooh and keep an eye on when and what I eat to avoid peptic ulcers (again a gift of pred).

    I'm considering maintaining my present weight an achievement at present as I have to consume soya milk, dairy products and omega 3 oil etc each day which nicks much of my allowance. I actually raised my allowance a bit as I found it very demotivating to always be over by several hundred calories. Now I can spot the cheating stuff and cut it out
  • sithiria
    sithiria Posts: 16 Member
    Diagnosed July 2016 Relapsing Remitting MS Untreated for a decade. Trying to fight. Did a round of IV, then Copaxone. Prednisone..Didn't help, now on 240mg Tecfidera.. Need a new Neuro. I haven't walked in over 2 years and I'm 42. Need to drop this weight and return to my deva self.
  • Kiansha
    Kiansha Posts: 4 Member
    Would love some friends. I have type 1 diabetes, rheumatoid arthritis, endometriosis and crohns. I'm an autoimmune disease queen. Was on here 4 years ago and lost 12kg after being on steroids for a long time. Had to cut my meals in half whilst still taking steroids. I then lost my Mum from cancer and broke up with the father of my kids. I have put on 4kg recently just by changing medications. I eat well but obviously now have to cut down. I have a very inactive lifestyle other than being a Mum and household stuff. If my body would cooperate it would be great. Just going to try and do a daily walk with my kids to at least up my steps. Thanks in advance for reading this. I'm 40 years old.
  • megemrj
    megemrj Posts: 547 Member
    edited January 2017
    I have Raynaud's. I had a really hard time losing weight at first. I've tried many things but have gotten the most improvement not eating processed carbs, dairy, and too much protein. I can definitely tell when I do. I think the inflammation is what caused my struggle with scale in the beginning.

    I'm LCHF which isn't for everyone but works for me. It took trial and error to get here. I still periodically have symptoms of course but now they are more manageable since I lost 65 lbs and cut a lot of my food triggers.

    Wishing everyone success with symptom-free days!
  • ellie_RN
    ellie_RN Posts: 19 Member
    I have many autoimmune issues but psoriatic arthritis is what I fight the most. Med wise, I am coming down on a prednisone taper, I am back on methotrexate
  • lilyanneetc
    lilyanneetc Posts: 8 Member
    Hey Meg,

    I'm also lchf. I've done that type of eating before with success, but sulfasalazine was messing with my appetite and I gave up for a while when pretty much all I could stomach was potatoes! But I've switched meds now, and actually just pulled almond flour cinnamon rolls out of the oven!
  • ToeTapN
    ToeTapN Posts: 64 Member
    I have been managing RA with a gluten free lower carb higher fat diet for years now. I would love to be in touch and hear how you are all managing.
  • CharlieBeansmomTracey
    CharlieBeansmomTracey Posts: 7,682 Member
    ToeTapN wrote: »
    I have been managing RA with a gluten free lower carb higher fat diet for years now. I would love to be in touch and hear how you are all managing.

    I have RA among other things. I cant do keto or LCHF as I have another health issue and I have to eat low fat.what helped my RA was lifting weights, so far I have not needed meds,YET. But I was always having pain and tenderness and this helped with that. Im now less tender and sore.sometimes I can just take something over the counter for pain and that helps.
  • achabbanana
    achabbanana Posts: 2 Member
    Hi All -
    I have a type of autoimmune arthritis (enteropathic arthritis) which has been flaring for a long time, now. I tend to flare after pregnancy for a couple of years and then things tend to go into remission. I've been on a low-dose of prendisone for about 18 months and I'm on Humira as well.
    For me, the main problem was flaring right after pregnancy and going straight on prendisone, making it particularly difficult to lose the pregnancy weight - like at all. I basically look the same as I did when I was 8 months pregnant.
    I just started Bistro Md and we'll see if a low carb diet will help.
    I've also done the gluten free, dairy free type diets (as well as a full allergy elimination protocol) and had no success. I was diagnosed when I was 20 and I'm 42 now, so I feel like I've tried most non traditional paths. But if people find they work, that's awesome.
  • ljpjones
    ljpjones Posts: 49 Member
    I have RA also, have found it very difficult to truly exercise. I had lost 88 lbs before my first mayor flare and once put on the meds with the pain and stiffness gained most of it back. I'm back on the right track now, but I worry I'll end up with another major flare up do to pushing myself. Any advice would be great. Ty
  • gravylover
    gravylover Posts: 5 Member
    Hi, I have hashimoto's, chronic fatigue, IBS and diverticular disease. I am 33 and finally trying to take control of my health. Oh and we are trying for a baby on top of this :smiley:

    I too find so much conflicting information out there of what is best to eat as the items that are good for one illness are bad for another.

    Im 10 days into the FODMAP diet whilst trying to lose weight too. Ill be honest, Im finding it very frustrating.

    At times you just want that pizza (!) or eat out and it is very restrictive

    However,I will say that on the whole my stomach is much happier on FODMAP restriction. And Ive lost some weight, lots to go but am finally having moments of my day where i have a little energy-its lovely!

    I find the MFP so helpful for motivation and knowing there are others going through similar health problems.