I'm new here, I've had RA for 12 years now, and alway... - NRAS

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I'm new here, I've had RA for 12 years now, and always taken medication. Since march I came off everything and I've been looking at my diet.

kittykat79 profile image
34 Replies

I'm under the guidance of an immunologist who's advising me on diet. I'm being treated for candida a leaky gut, my hope is that I'll cure myself. I wondered if anyone else has looked at diet or anything else to help themselves. I think we are a nation too fixated on drugs, which is a shame as I think there is a lot we can do ourselves, but it certainly is not easy!

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kittykat79
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Tillytop profile image
Tillytop

Hello Kittykat

I think you have made a very brave decision. I really admire your courage and hope so much that it works for you. I have read about the candida/leaky gut theory of RA and about people for whom it seems to have worked but I haven't actually come accross anyone "in person" who has tried this approach.

I am really interested to know how it goes for you - are you seeing any improvements at all after your hard work? I really do hope so.

Tilly x

earthwitch profile image
earthwitch

Are you still under the care of a rheumatologist? I just ask, because I wonder how they would think if they knew you were stopping your meds. If you have been taking meds for 12 years, then that has certainly kept down the level of inflammation and helped you avoid at least some long term damage and problems. Going right off drugs that have probably been working better than you might think, and changing that for diet and a focus on candida and leaky gut (neither of which have been shown by research to have any proven relationship with RA) could be quite a risky strategy and mean that your RA goes totally out of control again, even if the diet helps with other things.

Its a really strong decision to make, and you are dead right that there is a lot we can do ourselves with diet and exercise and lifestyle changes, but there has also been years and years of research into RA and all the drugs currently used for it are well proven to be work on knocking inflammation and controlling RA.

Please discuss this with your rheumatologist and your GP before you make decisions to go completely off your medications. That shouldn't stop you from starting the diet and other treatment though, and there may be some meds (like pain relief) that you could safely cut back on

But, the choice is yours, and if you strongly believe a different approach is going to work, then I wish you all the best for it.

Beth58 profile image
Beth58

Stopping medications can be risky for your body and joints, my sister refused medication because of problems swallowing and severe side effects, she's now had various small joints replaced, both knees replaced and her hands are now so deformed their useless. So please think again and as Earthwitch says discuss this with your Rheumatologist and GP.

Beth x

I feel torn when I read of someone doing something like this. I think it's easier to accept these inflammatory diseasesfor those who were fit and healthy when RA suddenly struck because at least they know that they haven't brought it all on themselves and have tried their hardest to keep their bodies trim - although of course it must be harder in other ways to accept that this has just happened to them out of the blue when the week before they were physically very active and healthy - very unfair. But for those of us who've always had health issues and a poor familial inheritance to boot and who were overweight or eating badly it's tempting to think that we can chase RA off by changing our lifestyle radically, through diet and exercise and a different outlook. That's where I'm at a lot of the time so I can understand how tempting it is to by into the pharma conspiracy and try to change things through diet alone. The bit of this arguement that falls down for me is that people have been suffering from RA all over the world for ever and unlike many cancers RA is not on the increase statistically - if anything it's decreasing.

So I have to agree with Earthwitch and Beth here and say that although I think this is a brave decision - I also think it might be very foolhardy to quit all your drugs. Why can't you try both? It's what I do and for the most part I think it's made a huge difference - if not to the RA then to my appearance, my mental well being and my heart and health generally. Good luck with your journey and stay around to tell us more if you can please. Tilda

kittykat79 profile image
kittykat79 in reply to

I do agree the drugs have helped to slow the disease, there's no doubt, but it's just unfortunate that they stopped being as effective. I feel really drawn to this path of healing naturally, I can't really explain it.

in reply to kittykat79

I can understand that and I don't think there's anything wrong with trusting your instincts (or gut instincts in your case). As you've said you are keeping an open mind and can switch back to the drugs if you feel this approach isn't working enough on its own. I too have many qualms about suppressing my immune system with drugs. You aren't being evangelical about it here so I genuinely do understand and wish you luck. Tilda x

kittykat79 profile image
kittykat79

The clinic I go to in Banstead has cured 2000 patients with RA, but not just with diet, but looking at other things such as parasites and candida. Autoimune diseases are on the rise in the west because of our over processed foods, RA cannot be seen in isolation, lupus, diabetes, crohns disease and many more are all part of the same problem. In other parts of the world where food is not so readily available and packaged up RA rarely exists.Rheumatologists believe the body exists within a vacuum, that the immune system has become confused somehow and starts attacking its own cells, but why? Nothing exits within a vacuum, everything has a knock on affect, the body must be reacting something. The mistake it makes is that in some cases it believes that the good particles escaping into the blood stream are foreign so it attacks, for those with a susceptibility to RA, the joints come under attack. Why is it that people with RA don't absorb nutrients ad well as healthy people, because the food is not being digested properly.70% of your immune system exists in your gut, so does it not make sense that that is where the problem lies. Suppressing the immune system is a dangerous thing in my opinion. Perhaps my thinking is off the wall, but I have to give this the best shot I can. Drugs were not doing enough. I was having to take ibuprofen practically everyday, so for me I had no choice. I now take painkillers once in a blue moon, so this says a lot about diet to me. Of course if I find I need to go back on drugs I will I'm not totally against it, its just I want to live drug free and let my body heal naturally x

in reply to kittykat79

Sorry but this does not stack up for me, I was actually born with the skin condition, Psoriasis, and they have discovered this is caused by your immune system attacking itself. With you beliefs and statements it's with the gut, so how come a foetus can eat food in the gut that are bad for their system. Sorry but don't believe any of it.

Karen77 profile image
Karen77 in reply to

This may seem unbelievable but you could have gotten your gut problems from what your mum was eating while you were growing in her womb. There's some suggestin now that colicky kids could have Coeliac and they're getting it through the breast milk because their nursing mums are eating wheat! It's all quite fascinating and there's just not enough research being done.

artyone profile image
artyone in reply to kittykat79

here here i have been told to go on mtx and i have said no. spec not to please . i want to explore food first. so if you have any recipes or diet information i would love to here it and compare.

take care carol x

KJay profile image
KJay

Hi kittykat

I'm very interested to see if your diet helps. I am a great believer in this sort of thing but as I am still waiting to find out whether I do actually have a diagnosis of RA I can't advise you about stopping the drugs as my symptoms are not that severe. Other people are in a better position to do that.

I believe that Ayurveda places a lot of emphasis on the fact that a faulty gut causes illness and directs its practices into healing the digestive system to restore health. I think that Ayurveda is one of the few alternative treatments that is fairly effective in treating autoimmune illness.

I myself have been looking into a pH balanced diet but haven't been on it long enough to say whether it is helpful or not. I think a lady called Barbara Hill (?not sure if I have the name right!) had RA and cured herself by correcting the acid balance in her body through diet and supplements. I have a feeling she was in the early stages or RA and didn't want to take the drugs but I may be wrong. I think her daughter now carries on her legacy.

Good luck with the diet. x

You may of course be correct that autoimmune diseases generally are on the rise in the West. I don't know. However, a young Chinese woman posted here a couple of months ago, (she has RA & was thinking of coming here to study) & I'm sure she said RA was very common in China. Well, China is changing rapidly but still the vast majority of its people eat a traditional diet or at least have done until quite recently. Smoking is commonplace though, I believe, so that could be a factor.

I do agree that Western medicine compartmentalises diseases which does seem daft seeing as the body is a system. I used to work on cars and we would usually find that problems stemmed from different parts of the system & were interrelated but such sophisticated diagnostics seem to elude our highly trained doctors!

I do fear, though, that alternative approaches aren't rigorous enough in terms of research, especially. I might be completely wrong, I know. I think it's entirely plausible that inflammatory arthritis can be a result of poor absorption of food. I'm wondering though how long your treatment should take? And, assuming it could be a long haul, am wondering like the others whether you are able to keep a check on the state of your joints meanwhile?

All the best to you, tell us more!

Christina

helixhelix profile image
helixhelix

I agree that this is a tricky conundrum, and that a lot of the things we do don't help maintain healthy bodies - but there again we do have much longer lifespans now so we can't be doing everything wrong! I actually thought that RA itself (rather than other auto-immune diseases) was on the decline - possibly due to things like a decrease in smoking but it's impossible to know unless someone does a really intensive assessment of the numbers, and also does some research into the level of undiagnosed RA as well. I can well imagine that there's a huge variation in different countries In ease of diagnosis, and many end up just living with untreated RA.

I know for myself that the extra effort I have made towards diet, exercise and so on since I was diagnosed has helped, and I do think that is partly responsible for me being in pretty good form most of the time. But that's as we'll as the drugs, not instead of. I recently had to drop down the amount of MTX I take by 5mg and my joints really played up very quickly on the reduced dose.

I have also read that there are some people who do find that their RA tapers off in intensity/activity after about 10 years or so, which suggests that this could be a good moment for you to try other approaches. But like others I would be nervous of doing it without the support of my rheumy, and would want to feel that if things start going wonky I could get seen again v quickly. But generally there are so many variations on RA that it does seem logical that some people, like the Margaret Hills of this world, will find that diet based approaches work ok for them. So hope it works for you, but I for one won't be following quite yet. Maybe in 10 more years tho'? Good luck. Polly

Yes I agree with those who have responded above. I eat a gluten freed diet and avoid refined foods and dairy as well as exercising daily and yet my RA has still progressed since I started this hugely improved approach to living. I take the drugs but I don't look or feel ill much of the time and I'm sure I'm helping myself enormously in my efforts to counterbalance immunosuppressants with such a healthy diet. Best of luck and do please let us know how you fare. Tilda xx

Karen77 profile image
Karen77 in reply to

Tilda,

This is just the information I am looking for! I have recently switched up my diet, starting with reintroducing meat and removing gluten in January 2013 and moving steadily toward paleo. Chocolate and sugar have always been my weak points. I finally switched to the paleo autoimmune protocol (AIP) in February 2014. It's been just over a month and I can't say that it's been magical, but my hair is thicker, my weight the lowest since I was 15 (I'm 37), and I haven't done more than 3-5 30 min walks per week! I'm still holding out hope, because it was a long road getting to this point so I don't imagine it will be fixed overnight.

kittykat79 profile image
kittykat79

I think you will all find this interesting, have a little look at the research part: burghwoodclinic.co.uk/, it's very interesing.

Judetheobscure profile image
Judetheobscure

Dear Kittykat

Just be aware that even if you show no symptoms of RA while on your diet this disease is likely to carry on doing damage to you. As you are under the guidance of an immunologist I'm assuming he/she will be ensuring that checks are made on this.

Anything you can do to help your general health and immune system improve is good but 2000 "cured of RA"? How long has the clinic been running and has their approach been rigorously researched and subjected to scientific methodology?

As you feel so strongly about it you will probably pursue the diet route as I did many years ago but with my Consultant smiling indulgently in the background and the Registrar full of panic as he saw me unable to completely straighten my arm. The consultant advised that some foods might aggravate the RA, some might have an anti inflammatory effect and that not eating at all can result in an improvement of symptoms. So food or the lack of it (and the latter is clearly not an option) can apparantly improve the symptoms but it's really unlikely to stop the progression of the disease. The diet did not work fo me and unnecessary damage to my joints was caused during that period.

I'm sure that focussing on your diet and general health will be helpful but please do check that no damage is occuring while you are on this diet.

As for the drugs not being so effective. This is what happens over the months/years as your body becomes used to them - you need to be given alternatives. These days there are a whole raft of them and they are used more effectively

Best wishes

Jude

in reply to Judetheobscure

What you said about 'not eating at all' sounds so bizarre but really resonates with me.

Yesterday I went out for lunch in relatively swanky surroundings & just gave in and had some of the lovely rich food on offer. I didn't eat that much but the cream & sugar etc. just felt so wrong & I went home & slept like a log all afternoon, I felt I had no choice!

I seem to be giving up something new every week but it doesn't bother me too much any more which is strange - I've always hated depriving myself of anything. It really does seem that the less of everything I consume & the sparser, 'cleaner' & sparer my diet is the better I feel! I did eat almost nothing for 3 days a few weeks ago, partly because my appetite was poor & partly because I'd got very depressed which is unusual for me. But after that I felt surprisingly fit and well for a while!

I wouldn't want to encourage anyone to eat less than they need to but I'm wondering whether anyone has tried fasting for short periods and if that has helped them? (And whether fasting is dodgy with DMARDs.)

Christina x

earthwitch profile image
earthwitch in reply to

Dodgy, only in as much as taking those nasty drugs on an empty stomach can cause quite bad stomach irritation and nausea, and it would defeat the purpose if you ended up with bleeding or ulceration. Also not advised if you have any problems with things like thyroid or diabetes.

Fasting is promoted by some folk for a whole lot of disorders, including some folk swearing by it to knock a spondylarthritis flare, but then the theories around bacteria and gut involvement with spondyloarthritis are more accepted than RA and gut involvement. You really just have to be sensible about fasting and be aware that you aren't getting the same kind of nutrients into your body while you are fasting so it can play havoc with your energy, concentration, etc if you are having to work or stay on the ball. Also depends on how long you do it, as after a certain time your body starts breaking down muscle to get energy. There are degrees of fasting though - from being able to keep on with nutrient liquids (soups, juices) to just plain water fasts.

in reply to earthwitch

As I thought ..... I used to fast about 3 times a year, just for one day each time drinking nothing but water and fresh sage tea (random choice as we had a lot of sage in the garden!) I would sleep a lot, sometimes almost as if drugged or hypnotised (was working very hard at the time.) I might give it a go for a day but maybe my current fairly spartan regime will do for now!

(I would definitely NOT fast while working, nor would I drive given the narcolepsy effect!)

Dogrose profile image
Dogrose

I have modified my diet since being diagnosed with RA, not hugely though. I have been a vegetarian all my life (47 years) and was brought up on a macrobiotic diet though that gradually slipped over the years. I have completely given up potatoes and aubergines and fresh tomatoes as all these noticeably affected my pain and inflammation. I have heard about modifying your diet against acidic food but I actually can't stand sour food anyway. I have also cut down on carbs and increased proteins as my partner is hypoglycaemic.

The flu vaccine last year was the first vaccination I have ever had in my life!

Sometimes I wonder if I had been brought up on meat and potatoes and vaccinations like my classmates, if I might have developed RA at a much earlier age than my mid 40's as I have had odd niggly symptoms for years. I do know that currently I can'r function without drugs despite the diet modifications.

Judetheobscure profile image
Judetheobscure

I think naturally we all tend to give our digestive system a short rest from time to time if we have over-indulged but fasting can be damaging so is definitely not to be recommended.

We need all the nutrients we can get - our iron levels, in particular, can dip easily - so a well rounded diet seems to be the best approach.

My consultant mentioned the effect fasting might have on the symptoms of RA so that I wouldn't be fooled into thinking fasting or diet could stop the progress of the disease. It's just a possible temporary effect but we really need the best nuitrition we can get and clearly less of the things we know are bad for us.

Anyone thinking of changing diet should mention it to their Consultant so they can advise.

Jude

Judetheobscure profile image
Judetheobscure

post script: My understanding is that you should always eat prior to and after taking anti-inflammatories to offset any possible damage to stomach.

I would be interested to know the qualifications of your Immunologist, and whether there have been any double-blind trials to validate the plan you are following. The leaky gut theory has been around for a very long time.

I am a sceptic about most alternative therapies unless I see convincing evidence to support them. You see I have had the disease for so long, that I have tried a lot of quackery and not found anything that helps like DMARDS and NSAIDS do.

So if you have any scientific papers to back your claims, I would be very interested.

Meanwhile I find that avoiding processed foods and refined carbohydrates (especially sugar)have really helped me to lose some weight and that alone has made me feel a lot better.

earthwitch profile image
earthwitch

Just a couple of final comments:

- "remission" is an incredibly difficult thing to actually confirm or measure, because autoimmune disorders can very easily wax and wane anyway and long spontaneous, hormonal or drug induced remissions are far more common than you would think. So its not going to be at all easy to know whether an alternative treatment has actually "caused" remission.

- ibuprofen is a very effective antiinflammatory drug - it may have mild analgesic effect but for RA it really doesn't do anything as a pain killer - the relief of pain is because it relieves the inflammation causing pain if taken regularly. It could well have been what was keeping your disease at bay, and having gone off it, the disease could flare again at any time.

- advances in understanding and treatment of RA and other Autoimmune disorders are leaping ahead every year. You should never give up on the possibility that there might be something else around the corner, and the best way is to make sure you stay under the care of a rheumatologist.

Those doctors at that clinic are properly qualified, and some at least of the research papers have been published in peer-reviewed medical journals, BUT its a real mix of different research, some of it quite old in research terms (10-25 years old), and it isn't clear if any of the individual studies have been repeated exactly (and therefore properly validated). Its also quite clear that there are a whole lot of different types of approaches and results in there that may each only work with quite a small sub-group of people. So, fine if your autoimmune disease has actually been triggered by a defined food allergy, but less definite if it was triggered in a different way. And if you are looking at food allergy links to autoimmune disease, then the latest research I've seen that looks promising seems to be around eosinophilic enteritis rather than the more general "leaky gut" stuff.

But, its a difficult call,, and I am definitely someone who has modified diet considerably to try and help knock this beast (though still taking medications).

sylvi profile image
sylvi

If there was a cure through diet alone,don't you wonder why we are all still suffering.I don't hold with this thing that"2000 people have been cured" if that was case there would be nobody with RA or other autoimune diseases. I am not a specialist or anything like that,but these cures leave me cold,sorry if some have found their symptoms have gone,but i wonder did they have ra at all.. nsylvi..

in reply to sylvi

I am in total agreement with you Sylvie,

in reply to sylvi

I too agree with you Sylvie! If there was a "cure" I'm sure it would be widespread by now. After 38 years of suffering with RA I've heard more than my share of "cures"- mostly told to me by folk who have NO IDEA of what RA is like. I actually think that rheomatoid arthritis should not be linked with arthritis at all, since it is so very different to age/wear&tear arthritis!! Sorry! but that's how I feel.;-(

chino2012 profile image
chino2012

I went on a gluten-free diet once. I don't eat dairy anyway so the diet was free from gluten, wheat and dairy. I did eat some fish but mostly vegetables. At the time, I had been limping for a few months. After being on the diet for two weeks, I wasn't limping any more.

I just love eating nice food so much that I didn't carry on the diet and am not totally convinced that only a diet can cure RA. However, I believe there is something and is definitely worth eating healthily. I'd love to know how it went for you, kittykat79.

kittykat79 profile image
kittykat79 in reply to chino2012

I showed up as being allergic to everything, which is impossible because these are not true allergies, my body is not breaking the food down properly and leaking into the blood stream, or at least that seems to be what's happening. so hopefully if I heal my gut, then I begin to feel better. This will take months, I am happy that I've chosen the right path for me, and know that everyone is different, no one size fits all, so if you went to see the Dr I'm seeing something different might be suggested. Diet is only part of it, a lot is to do with enzymes, and the general terrain within the gut, rather than what foods I need to stay away from forever, diet is only the starting point.

Karen77 profile image
Karen77 in reply to kittykat79

Please let me know if you have had any improvement after all this time!

nancy66 profile image
nancy66

I did a similar thing 8yrs ago after being poisoned by my medication. I ate only whole foods and it made a huge difference. I had less pain then when i was on the meds. I also notice if i am ill and don't eat for a few days, the decrease in swelling and pain is amazing, like i don't have RA, so i also feel diet is important and i do my best to eat wholesome but i do cheat. I wish i had a MD to follow like you, because this would be my chosen path as well. I have had RA for 21yrs and i don't have the pain as i used to but more limitations and still see gradual deterioration in my joints, so i agree, it continues to damage our joints even if we are feeling better. I have started sulfasalazine and seriously considering Enbrel as i don't want to give up anymore losses of function. Good luck and i hope all goes well !!! My heart also tells me, a natural path is what i want to choose but i don't have the resources where i live. I do 'Reiki" and other types of healing, i do believe in the power of the mind, but sometimes the disease is just too strong :(

Nancy

denvajade profile image
denvajade

Hi there I am interested that you are off your meds, I too have been off mine for 8 weeks now, and I am looking at diet, I have had major stomach issues and gained a total of 11kgs since being on methotrexate. I am looking into a jasonshonbennett who healed himself with diet only (not RA though). Please keep in touch and let us know how you go.

Whyme2 profile image
Whyme2

I took myself off the stronger meds for years, only to discover after a recent CT scan showing stenosis of the lumbar and Cervical spine, followed by MRI and SPECT scan that I have tremendous amount of arthrophy and other bone degenerative factors which are not curable and could have been prevented if i stayed on medications .

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