Diet and RA

Am I the only one who is finding all these posts  about "curing" and "reversing" RA or even improving it are bit strange. I'm Celiac and its so not a life style choice, as  it is vital to observe to avoid stomach issues. But most of all what concerns me is the risk of serious health complications that can happen if RA is not properly controlled. The NHS spends squillions on medications that improve and protect our health,  they may not work for all but having RA carries serious cardiovascular risks in my case it was Pulmonary Embolisms and a DVT since then a few Superficial Thrombosis. I dread to think what might have happened had I not being taking RA medications. So please do not think me rude but you may do as you wish, and follow whatever diet you want;  cook your food or not; eat bread or not. But Me ? I'm going to keep on taking the Leflodamide, Thyroxine and get the 3 months B12 jabs, swallow the Vit D capsules and scoff as much chocolate and cheese as I can 'cos life has to have some pleasure.

And I'm going dancing tonight in gold sandals because I feel great and thats down to great consultants, (RA and Maemo) a great GP, good medications and a will to live each day looking forward and not obsessing about what is for tea- gf free pasta and garlic pesto. xx

If anyone finds this offensive I'm sorry and it is just how I feel.   

50 Replies

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  • I agree but I do like Pesto - enjoy your dance x

  • Me too, medway-lady. I was undiagnosed and therefore untreated for about 4 years, and have had a hip replacement, and my hands and feet have begun to deform - and at the same time, I eat a mostly plant-based diet and haven't had meat since 1987... I'm happy with my diet, but I can't tell you how much I wish I'd had conventional meds too.

  • Enjoy the dancing....   I agree, although I think there is something in the diet stuff but not in the way that it's usually presented as being about strict regimes &  deprivation.  I've just posted about it too, as I think there may be a brighter future once the researchers have worked things out a bit more and it leads to better targeted conventional treatment. 

  • I too find people who feel that diet, removing caffeine, meat, and other substances from our lives strange. If it works for them, all well and good. But I think that if there was a cure, our cash stretched NHS would be forcing us down this route and not into expensive drugs. I wish I didn't have to take drugs. I am happy that as a bus driver, I am supported with having a less than half price drugs via a pre-payment certificate. But with 3 asthma inhalers, antihistamines, IBS medicine, GERD drug, HRT drug and asthma tablet, I didn't need to have MTX and folic acid added to the mix.

  • I forgot to add the steroids to the morning mixture.

  • Hi, I do find your comment a bit offensive to be honest but this is of course only my opinion.  This subject has been flogged to death to be quite honest on here.  I think that the general consensus is if it works for you then fine.  As somebody with a foot in both camps so to speak I certainly do not want the alternative posts to disappear and with remarks like these they well may just do that. I have quite severe RA and yes need the drugs but I do not like having them but I must.  As someone who does not eat meat or have caffeine as a lifestyle choice I certainly do not think myself as  strange.  I would certainly not criticise you for your diet as your an adult and its your choice.  If you do not like the posts then do not read them...but please don't label us as strange.  I am well aware that if the NHS could treat us with a healthy diet they would I'm certainly not an idiot either, I think after the last debate on this...these strange types of posts are here to stay.  There also a huge sugar free drive on at the moment too, as there's a risk of our precious NHS being crippled by a TYPE 2 Diabetes crisis.  Everything in moderation.

  • What I should have said its a cut down on sugar drive rather than sugar free.  I just wish people on here would just be mindful of people's like style choice before posting offensive comments.  This forum welcomes everyone and should be respectful of everyone's point of view even if they don't agree with it.  

  • little birds I agree with what you are saying and I think that in regards to meds or what ever we do it is an individual choice and we all need to what is right for us.

    I have said this many times on here but for me ra drugs apart from Humira which I had to come off have not worked for me and this is why I started seeing an integrated doctor.

    I did not want to risk trying out drug after drug waiting to see if some thing would work for me because as I have been told I could be doing this this whole trial and error thing with drugs for another four to six years and then I will end up with severe joint damage which I don't want.

    I do know a lot of people that have reversed there ra symptoms through diet alone and I know people like me who need that extra helping me.

    However I am always wanting to learn new things about ra and I enjoy reading posts on here about different things people have learnt in regareds to the disease.

    We only live once and we all need to what is best for us and what makes us happy. 

    Your right No one needs to be rude each other though and I do think it Is important that every one respects each other opinions. 

    hope you have a nice weekend.

  • Thank you Kalel!  I do believe we are very much in the minority on here for thinking this way but believe me I've tried many RA meds and they've either not worked or I've being taken off them due to side effects, I quite willing to try new drugs as at the moment I need them but I am also very interested in alternative approaches.  I do take offence at being labelled as strange though...I find it also a rather bigoted comment, and as I've said I just wish people on here could be mindful of people's lifestyle choices even if they do not agree with it. Have a great weekend yourself!

  • exactly totally agree with you.  I under stand where you coming from but for me what put me off was when the nurse spoke to me and I said come on be honest and she basically said you are difficult patient and I said yup I know that lol and she said oh no not you and she said to treat and I just laughed and then I said to her I am surprised I have not been kicked out the hospital I must drive every one crazy with all my questions etc.

    Anyways going back to my point when she told me it could take me four to six years before I tried all the drugs and found something that possibly worked for me I was like nah I can't do this and started seeing the integrated doctor.

    I know that where I go and see him they do still offer normal ra drugs but he will assess you before deciding how he should help you if that makes sense.

    Honestly even if you stay on the meds I would def recommend finding a holistic dr and making him part of your health care team so to speak at least that way you are getting help from an alterative dr and a normal dr but that is just my opinion.  Of course do what is right for you.

    I am sorry to hear you have struggled with your ra as well.  If you ever need to talk you can always message my.

    Thanks hope you manage to have a relaxing weekend.

    If you get a chance look someone up called the medical medium some of the info he has in his book and on his facebook page etc is very interesting.

  • Thank you for the info.  At the moment I am sticking with meds and a healthy diet/exercise as I have erosions and certainly do not want anymore at the moment, I am trying alternatives a little bit at a time as otherwise it becomes too overwhelming...but who knows if I run out of meds to try?! I was a vegetarian before I developed RA and I have never been before labelled as strange...well not too my face anyway !!  

  • littlebirds when I tell people I am vegan every one thinks I am crazy but then again if you knew me in real life you would know i am crazy as they come. 

    I don't think any one has called strange on here have they.

    well not that this will help you at all but i run my own business or i try to.  I am trying to sort out my adrenal problems and i have messages to reply to here there and every where every day and i have doctors crap to sort out so i under stand things can get over whelming but with saying that for me i felt like i had no choice but to do the whole alternative medicine thing.

    Anway it is stupid late for me and i am supposed to be at stupid o clock tomorrow.  If you ever need to talk pm me yeah.  Look after yourself.

  • What is an integrated doctor ? 

  • Pea I can't seem to be copy and paste things on my laptop at the mo but do a google search what is a functional medicine and that will explain what an integrated doctor is.

    also this may help you out

  • I did not mean to offend. I am asthmatic, but I don't smoke. I have high cholesterol, but don't eat any of the trigger foods. In fact I haven't eaten any meat this week at all. I have friends who are vegetarian and vegan, and those who avoid certain food groups because of choice and allergies. I am sorry that my choice of "strange" offended, however I put my feelings on here a short time back and was inundated with someone telling me that RA can be cured if I followed certain dietary steps. As you say, we all have feet in both camps.

  • I wonder if your friends realise that you think of them as "strange".  That's what I meant by my comment that no one to my face has called me "strange" .  No, that's not on, I do not agree with the hard sell approach and another person forcing their views on to you that is very wrong and some of the alternative posts on here I just do not read as they are just too much info to take in so I choose not to read them...I certainly would not label them as "strange" though.  I appreciate your apology but think it's a bit back handed...I'm just going to leave it there now...and still with my feet in both camps.

  • Thank you 3LittleBirds2. I have been searching through the RA community posts for some time now. I have never posted before because I do feel that my story would upset more people than it would help. Diet has worked for me. I do get flare ups but I can normally relate these to my diet. I have had genetic testing done through 23andme to determine what I would most likely be reacting to. I understand that strict diet control is a hard choice and one a lot of RA sufferers would rather not have to deal with. I fully understand this and the fact that diet only works for some. One of the reasons I don't post is because my choice and results make me feel too guilty to post when I read how badly people are suffering. I just want to say thank you for what you said 3LittleBirds2. I sort of took it as a form of personal support :) (I am on no meds at the moment)

  • Hi Maree....thank you!  Yes I was showing support for all of us who may have different approaches to the norm in how we deal/treat our condition!  No one should be ridiculed or talked down to just for having an alternative view...where would the world be if we were all the same?!!  It really made me cross that vegetarians and people that didn't have caffeine and other substances were called weird.....just a bigoted and to be honest old fashioned remark...everyone is entitled to their point of view but just be aware this may offend!!  I'm really glad that diet is helping your RA maybe you could do a post about this...I for one would be very interested in reading it as its a subject I'm very interested in as I'm sure are others...especially if we have trouble tolerating the meds.  Good luck and I hope your good results continue 😊

  • All I have done is sent away a spit sample to 23andme for genetic testing. I then put those results through a very easy and cheap program called Promethease genetics ($5) promethease.com/ What I have discovered is you are not a slave to your genes. If you are aware of what you are predisposed to genetically then you can use that to turn your health around. I found out I have 3 different types of the mthfr gene which basically means I don't absorb Vitamin B well, especially folate (not to be confused with folic acid). It turns out that RA and MTHFR are conected.  But easy fix there, I just started eating more leafy greens (lots and lots actually) and taking methelated B vitamins. It also turns out I have a few other genes that predispose me to certain allergies (everyone is different of course which makes things hard to sort out when it comes to diet) I also , of course have  different genes that are RA and autoimmune related. Anyway, basically I am now a vegan, gluten free, alcohol free, caffeine free, whole foods (as many raw veg/fruit as possible), organic eating RA symptom free person. My last C reactive protein test was less than 1.0 mg. I have gone from limping to hiking up to 30 km trips (up and down hills) I can run again and my depression has all but vanished. My diet and life style choices are extreme but nothing tastes as good to me as being pain free. Don't get me wrong, it was so very hard to get to this point. Being in pain; being depressed; being exhausted all the time; the last thing I wanted to do was give up food and alcohol. Methotrexate is not a drug I wanted to be on. If I find diet and life style choices no longer work I will take the drug but while this is working I feel so very grateful. And please don't think that I believe that this will work for everyone. My partner has just gone through cancer treatment. His treatment (chemo & RADS) saved his life while the exact same treatment for the same cancer let others at that time die. One size does not fit all. I am just very, very grateful that I have been one of the ones who have held off this disease (for now anyway). Just a warning, finding out your genetics can be a little scary. You may find out more than you wanted to know. I personally believe that knowledge is power in this case as I have also discovered I have the ApoE4 gene on both sides. This is the Alzheimer's gene. As it turns out though, my RA diet and lifestyle choices are exactly the choices I should be making to help stop the ApoE4 gene expressing itself. So everyday I say cheers with a huge glass of spinach and kale juice :) 

    I wish everyone all the best in whatever choices they make to get through life with this shitty disease the best they can. You are all very brave x

  • Hi Kai....I just wanted to clear up any misunderstanding...I am not and no one else is denying me this experience as I have started it in my own way....I need the drugs at the moment as my RA is severe and I have erosions so it's needs controlling first and I need to know what I am dealing with RA wise first....if that makes sense?  At the moment I am using the two alongside each other along with exercise once I feel better....please don't think me as denying myself the experience because of what others think and say because I can assure you I'm not 😊

  • I think 3LB explained her situation well, I'm not sure it's a good idea 'speaking' on behalf of others.  

  • Please don't feel you can't join in with us here maree, your choices are exactly that, yours & it may help others if you choose to share them. A major point of being here for me is to share experiences, help & advise. I think what's sometimes misunderstood is imperious posting, simplicity gets the point across far better & it's by far easier to take in & stay in & keep me interested. I think often if it seems an eating plan is faddy it's dismissed & that's unfortunate & not always the case. It helps to learn how diet can help us & I do eat healthily but I'm fortunate, I react well to my meds so it's a choice for me not a lifestyle, basically I cheat too often & like my foods too much to be as determined to follow a plan as some who have no other choice. So please, do continue to post, many of us are interested in hearing about others ways of treating RD. This is one place where we share a common bond & understand how it can be for some, we've followed their intolerances with meds, we've responded to heartfelt struggles & pleased for them when they find something that helps. I'm sure you'll have plenty to bring to the party!

  • I'm happy to watch my diet as a self help adjunct to treatment, but like you, I fully accept that with this kind of disease, diet alone is not going to be the total answer, and not treating adequately carries far more risks than treatment does (having already had a scare with the possibility of secondary amyloidosis).

  • You know what?! I had the same conversation with my GP about 6 weeks ago. I don't take things to extremes (lard butties & chippy meals), and I do look at saturated fat on food stuffs, but when my GP advised that my cholesterol was 5.9 (and it DOES NEED TO BE LOWER!) I said that I might as well suck all of pleasure out of life. I look at it this way: I have a very aggressive form of RA, OA in my hips, plantar fasciitis & the new joy of bunions. I've seen the future, and it's giant slipper shaped. I'm not a sweetie lover, but I do love my dairy. I'm not prepared to give up my life long love affair with cheese.

  • Mines 4.00 so no problem and good blood pressure so I figure that I either must be eating right or am just lucky as due to the gf diet can't eat normal  bread, cakes and biccy's. Instead I eat cheese, chocolate, skittles, and fudge. In fact I'd kill for a donut !. My left foot is affected but full of cortisone so pain free. Dancing was great tonight and very enjoyable. I have the steps but not in the proper order as Eric Morecambe might have said. lol x

  • Good for you darling,i agree whole heartily with everything you have said. If there was a cure do these people think we wouldn't take it because we would. The thing with ra and its other complications is one size doesn't fit all.xxxxx

  • sylvi I agree with you whilst there is not a cure for ra.  I have to say that all my friends that I have met who had ra have reversed all there symptoms I do personally believe that this is totally possible to do.  However we need to give our body the right tools so to speak to fix the damage that the ra has done.  We all see things differently but I guess this is why I am a fan of diet and seeing a functional health dr.  :)

  • Life is short we should do what we can as much as we can

  • Strange? If I didn't fit so well in the strange camp I wouldn't be on this site, I'm not vegan or vegetarian but try to eat reasonably 'clean'. I enjoy reading the debates about diet, meds/no meds, mobility aids, holistic treatments ( I enjoy a massage now and again, a reiki treatment and a bloody good spa day once in a while) and I love the glimpses into the lives of other RA suffers these posts give me, particularly the bits that let me see how they cope and thus may/may not help me - I like replying and hopefully helping others out with the odd kind word/sharing and most of all I get solace from the 'understanding' offered by those who are also on the 'inside' of RA. Some posts I read and retread as they offer me lots and others I skip past as they are not for me.... I love, and desire, this diversity of topics and views to keep me from stagnating in my own little RA approach rut!

    All the bet

    Ali

  • Strange? My loved one as just delivered me breakfast in bed... Scrambled eggs on gluten free bread with blueberries scattered around the edge of the plate!!!!

  • That sounds gorgeous...lucky you!

  • medway-lady, I note that you haven't accused anyone of being 'strange', it is posts making great claims for diet that strike you as a bit strange.  The biggest claims fill me to the brim with cynicism.  However I reckon we'd all claim something about our chosen diet ..... even if it's just that the chocolatey, cheesy, creamy nature of it keeps us cheerful!  

  • Yes, I read it as meaning the posts rather than the people, too. :) 

    Personally, I find some of the claims made for diet worrying rather than strange. As someone who has always taken care of my diet (I'm currently meat-free, alcohol-free, very low sugar and very low gluten) I do think diet has an effect on my inflammation and how I feel generally. BUT I have developed inflammatory arthritis despite a careful, healthy diet. And because I was undiagnosed I was also untreated, and now have significant permanent joint damage. So I know first-hand how important conventional meds can be. 

    It worries me hugely when I hear people advocating diet changes INSTEAD of meds, because I think anyone following that advice is risking long-term damage. And it bothers me when people say RA can be 'reversed' with diet, because I know first-hand that you cannot reverse deformed hands and feet or a replaced hip. 

  • Yup I never said anyone was strange its just the idea that  failing to eat properly in the view of a dietary approach can "cure" anything particularly brain tumours as featured on You Tube.  Worries me too as RA has other implications, I certainly did not know about the increased ask of blood clots until it happened.  My comment is not saying that its wrong to eat healthy and some people me included,  obviously feel better not eating gluten or something else for that matter but that is not a "cure".  

    If someone new to the disease is influenced by the dietary approach "cures" and, ignores their informed opinion medical advice because of a you tube video then I could never forgive myself for not saying anything. To me the importance of this page is honesty which  is not  agreeing with everyone but saying I respect your view but totally disagree and believe some things to be misleading. 

    Thats just my view and it is not disrespectful  at all.

  • Here we go the mass debate of he said...she said!!   No one at all saying that Medway Lady called anyone strange she stayed HER opinion of the alternative posts and that's that...fine.  What I did find a rather offensive/bigoted comment was that people who remove, Meat, Caffeine, and other substances from their lives "strange".  I'm leaving this here now as my reply to that comment is on here somewhere on this post.  No further replies defending myself as it just snowballs and gets blinking ridiculous.  In a nutshell, some people like the alternative posts....some don't! But don't call people who don't eat meat , drink caffeine etc "strange". 😶

  • I have clearly missed a post but I totally agree with you.  Gees I must be the strangest of all not only am I vegan, gluten free and I don't drink coffee but I also see an integrated rheumy for my ra.  Little Birds don't let the negative commnets get you down honestly do what is right for you people will say all the time oh take the meds, don't take the meds.  Do this do that but it is your body your life and you need to make your self happy.

    Look at my my doc would put his patients if he feels the need to do so bu he would rather look at the route cause of why we have got sick and look at what has gone wrong.

    We all need to do what is right for us and like I said before even you are still on meds it is important to also take a holistic approach in my opinion when someone is suffering from a disease like ra cause you need to balance your body out and make sure that your gut etc stays as healthy as possible when taking these drugs but that is just my opinion.

    No wonder I never share on here all the crazy things I do to reverse my ra symptoms I would of only got a load of bs for it.  Anyway don't worry about any one little birds.  Just do you and make your self.

  • Everyone to their own, bless you all, whatever your opinions.

  • Wouldn't it be awesome to "cure" or "reverse" this dreaded disease by eating certain foods? That would be sooo easy and a dream come true. Sadly foods don't seem to help me. I really wish it was that easy.

    Keep on dancing!!!!

  • I do eat a well balanced mostly plant based diet. I'm not vegan. I drink milk, eat cheese, nuts and beans and sometimes eggs.  Oh and chocolate!! I chose to cut meat out of my life as a personal choice. When I was younger I ate anything and everything and I never had to think about weight. As I aged, weight crept on and at the age of 30 I was 205 pounds so I changed my diet and I felt great. I do wish my diet could control RA, but for me it doesn't, it controls my weight.  I do cook meat for my husband as he can't live without it. And I couldn't live without him lol.

  • Sue you need to do what is right for you.  TBH we all see things differently and that is fine if we were all felt the same way about ra or anything else life would be boring right.

    For me I gave up the meat, dairy, coffee, gluten because it made me feel great.  I have never been happier.  I meditate every morning and I am relaxed now and honestly being vegan has changed my life and I am very grateful for how I feel these days but what works for me may not work for someone else and I eat this way cause it makes me happy right but at the end of the day I will say this everyone is different and ra affects everyone different for me I am so pleased I started seeing an integrated dr he has told me what vitamin I need too supplement with, herbs for my gut and done all sort of crap.. I have even realised that acidic fruit and white potatoes really affect my ra and personally I as mean as it may sound I don't need to worry about what anyone does for there ra but I do believe that is important that people realise that there is a reason why functional medicine is becoming so popular these days.

    Have a nice weekend.

  • Well said and I could not agree more. The medication can be difficult to manage but not near as difficult as managing the storm raging on inside of us. The Rheumy's do manage to achieve control for a great deal of people with RA(RD). I have been diagnosed since July 2015. The pain is still a challenge but the inflammation is under control. I get annoyed with people recommending a vegan diet or "special" water? It is the same as saying it is not serious. It is very serious, particularly for some. Moreover, it is devastating to all. We all have to restructure every aspect of our life and are families lives. I want to scream when someone trivializes it. My favourite is 'at least it is not cancer', really. At least with cancer, which for many is likely, you are not constantly fighting with insurance companies, medical services etc.. Sorry for ranting....lol I am very stressed out, I need to close by business this week. I had sold it but buyer backed out on closing day..can not catch a break.

  • Oh damaged I hope you are feeling better, and yes I've heard the "oh well its not ?" trouble is RA is systemic so everyone seems to get it differently. I just believe that I have had enough of a journey to get this far and guilt about my diet is not helpful.

  • I am sorry for whining. Just get meloncholic sometimes. I have been a Financial Planner for twenty years. This financial death is harder for me than a physical one. I am ok with my condition. I have dealt with chronic pain for fifteen years. I have sauna, beds, car canes etc..I can adapt. What makes me crazy is other people. I will be back to my usual self as soon as this store closing is settled. But I want to SCREAM. We are good people. I have always done charity work, I have never cheated or hurt anyone deliberately. Yet the blows just keep coming. How do you keep up the struggle? I feel like a baby. Many of you have been dealing with this for years. I am so impressed with the courage and strength of the members here. It is inspiring. But if any of you can send me some mojo now is a great time.

  • Sending MOJO, MOJO and more MOJO. And screaming does you no harm, we'll scream together. "god give me the strength to change the things I can and ignore those I can't" or something like that. xxxx

  • My mantra has always been, this to shall pass. The problem is this RD will not pass so I need to make myself a new one. Adapt and overcome lol What do you think? Sending back a big hug, thanks.💐 Happy Easter

  • Damaged i am sending you loads of hugs. I too have days when i wonder how do i carry on. Yesterday was such a day. Good Friday was good for me,i did a bit of gardening in the morning,sat out for the rest of the day with friends coming round,also got the sun on my body which was lovely. A really lovely day,yet yesterday i got up in pain which i put down to the weather which was awful to say the least. Went out shopping with my darling hubby and by the time i got home near lunchtime i was in tears. So one day i can be great the next rubbish.  I had an op to help me lose weight and i have lost a lot of weight yet i am suffering more now than before. There is no logic to these diseases we have. I say if it works for you good luck,but if it doesn't thats ok as well. I hope you soon feel brighter darling.xxxx

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  • Not strange but frightening that folk think that diet can be a cure. Serious damage can be done if this condition is ignored. Dr Google is a dangerous thing with lots of suspect theories and cures for just about every illness going. Unfortunately desperate folk are vulnerable to being taken advantage of and get consumed by Dr Google and all the so called proven remedies on the Internet. 

  • Mall we all have our different opinion on these things but I will say this five of my friends who have suffered from ra reversed all of there symptoms through diet.  I agree you need to take everything that google says with a pinch of salt but as far as I am concerned if meds work for you and you are happy to take them that is great but for some one like me where meds don't work I would rather see a functional health dr than sit here and wait for someone to design a drug that may suit me.  We all see these things differently but I do think it is important that every one here tries and respects people like mine wishes. 

    I will be honest and say I am not a fan of taking meds for a long period of time and seeing as though I have the support of my nurse and doctor in regards to seeing a integrated doctor well in my opinion I think that is all that someone like me can ask for. 

    We all see these things different but I do think it is important that we all also realise that seeing functional health practitioners are becoming more and popular.

    Take care of your self.

  • Agree with everything you say, medway lady!

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