Hi, I’m new to this forum but have suffered with RA for 20 years. I’m curious to know if anyone has explored the nutrition option to control symptoms? I’m just engaged one who has advised an exemption diet for 2-4 weeks to try and identify if any particular food is aggravating my symptoms. I have never had food allergy but know these can develop. There are blood tests, but very expensive.
nutritionist: Hi, I’m new to this forum but have... - NRAS
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Red_Lillies
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If you’ve had RA for 20 years I’d assume your taking medication and am then puzzled what is an exemption diet. And blood tests for what? Celiac is diagnosed by blood test giving an indication but then it’s a camera into tummy. I think beware this might be like the Facebook selling of food sensitivity with finger prick of blood. Sorry but real allergy testing can be dangerous so I’d not part with any money without talking to your GP before you go ahead. If these things worked then then NHS would prescibe a diet before any expensive medication.
I think Red is referring to food allergy testing.
Yes perhaps the German ( although that might not be true ) machine that’s being peddled on Facebook by ‘Nutritionist’ consultants ?
Hi, thanks for response. It’s the gold standard nhs exemption diet. It’s anti inflammatory and eliminates dairy & gluten initially, with view to re-introducing foods slowly to identify triggers. The blood tests are quicker, but expensive.
If it's done by your GP or an NHS dietician then great but if not the NHS has a warning not to go by elimination diets that eliminate food groups like gluten/diary as results are often misleading. Just be careful it's not "recommended" by, rather than done by. As on the Internet I'm blonde 30 and fit in reality I'm 71, grey and not fit. lol By the way this sends alarm bells to me as you actually have to eat gluten to be tested for intolerance for 4 weeks and live with the effects. Its nasty so don't do it if its not NHS and they say we can test for allergy when your not eating it. Good luck.
Hi, I’m doing the nhs gold standard elimination diet. It isn’t an intolerance test. Rather it’s to eliminate potential food intolerances to see if symptoms improve. If they don’t, then it’s not likely that food is triggering my symptoms. If symptoms do improve, then to re-introduce foods slowly, to identify culprit(s).
If you are comfortable how you are feeling….why go looking to spend money on something that doesn’t seem to be causing you any problems? Be happy you feel well.
If you look back on here you will see some disgusting diets people have turned to ….but tbh I can’t remember one that longterm has beaten DMards & Biologics.
Hi, thanks for response. I am not comfortable, I’m in flare and can’t find a medication to work. I have been on several over the years, which have stopped working. My apologies if my post wasn’t clear.
I just re-read your post & see that you say “blood tests are .very expensive”.I am wondering if you have had a word with your rheumy nurses…they have usually heard of most food that can causes a problem & they will probably have an opinion on this gold standard exemption test you mention.
Why not discuss it with them? After all if you are paying for something ..l.ask why it is not available on the nhs? The answer is usually NICE have investigated & it doesn’t make the grade.
Hi agedcrobe, thanks for your response. Yes I have spoken with rheumatoid nurse who advised me to see a nutritionist . They couldn’t offer any direct advice.
Honestly? The only person likely to benefit from an ‘exemption diet’ is the person you’re paying………..
Believe all of us when we say all these so called diets don’t work because if they did the NHS would be billions of squids better off not prescribing the extremely expensive drugs we need to control our RA symptoms. There’ll always be somebody who says some diet works for them and that’s fine but the majority of us are much better served by listening to our prescribers who know our unique medical condition and will perform blood tests as and when necessary for free.
Hi, I wish I had your faith. I feel like the meds just fight the fire, they don’t put it out permanently, keeping big pharmaceutical companies in business, and giving me associated conditions which need further medications. After 20 years I’m running out of options and wondering if I can help myself via diet.
Added sugar seems to give me inflammation. I feel better when eating less simple carbs, but as others say it’s not substitute for meds. If it were they’d know by now. I’m in the US and we obviously don’t have national healthcare. People here tend to blame pharmaceutical companies for pushing drugs. I hear that a lot as a reason to treat illnesses “naturally”., but in the UK as someone else pointed out they’d save a ton of money if nutrition could treat RA and other autoimmune illnesses.
The NRAS have published an interesting article on diet. nras.org.uk/resource/diet/
As usual we have a divided opinion here…
Personally, I know that my body reacts badly to some foods, in fact some cause flares even when I’m medicated efficiently!
I also strongly believe we are deeply affected by the food we eat. There are so many exceptional professionals who support eating a healthy diet. Also cutting out ultra processed food and foods that have little nutritional value.
We need to support our body to cope with the medication and the RA.
My RA team have strongly supported my choice to follow a healthy diet and exercise plan, and so far I am defying the odds. I absolutely do not believe diet can cure RA, but it can help. We should not feed inflammation, whether medicated or not.
Some of my family are doing the Zoe study and it is proving really helpful. One has managed to avoid diabetes and both, who suffer from hereditary hypertension, are managing it much better reducing their medication.
Hi, thanks for your response. I totally agree with you. Sounds like you have a good rheumatology team. When I asked mine about the nutritional pathway, they suggested this forum, and that was it! Hence my reaching out to a nutritionist for help to try and determine if I can help myself.
I totally agree and a healthy diet is not the same as a restricted one. Healthy weight is good as is exercise of course and weight affects diabetes although type 2 not 1. And so it seems more linked to weight than intolerance.
I disagree.
A healthy diet has to be restrictive otherwise it would not be healthy!
Absolutely not - type 2 diabetes can affect very slim people who eat a bad diet. My family are not particularly overweight but had been eating the wrong diet.
I do a good deal of reading around these subjects and feel that I am reasonably well informed.
My own diet restricts sugars, bland carbs s and it’s vegetarian. It works for me.
In my view a well balanced diet is a healthy one but type 2 diabetes mostly affects the overweight so might be controlled by diet but type 1 is not controlled it is when the pancreas can’t make insulin. My friend’s grandson has it and was diagnosed aged 1 and being extremely ill. I’m not knocking what works for you but I’m medically diagnosed from many years ago with Celiac and it never stopped the RA from developing nor has being GF stopped or affected inflammation. It’s even thought now it’s possible that keeping to a GF diet for several years can mean some gluten can be reintroduced. I’d add that diet is of interest to me with CKD so I have seen a Renal Dietican.
Personally I think diet does affect me, but I wouldn’t say it controls my RA ( or my fibromyalgia or hormones!). I know certain foods can trigger negative effects and I feel more inflammation around tender points. Sometimes foods also cause a reaction for non RA issues, and then my body reacts in other ways. I’ve found the best way for me is to keep a food and reaction diary. Especially as my hormones are currently all over the place! I’ve recently changed my daily diet to include more protein. For me, at present, that’s making a huge difference.
Back in the 1980's my rheumatologist introduced me to the hospital nutritionist who put me on an elimination diet, excluding virtually everything then gradually reintroducing to see if there was any food that made matters worse. The diet was bland, she made me lentil soups and I can remember her saying lamb and pears are the two foods most widely tolerated, but really the diet did not work and I wouldn't try it again.
Hi, thanks for your response and sorry to hear the diet didn’t work for you. At least the nhs tried. Best of luck.
Have had RA for 47 years. I remember buying diet books during the first 10 or so years. One of them was raw milk and treacle but when i read the introduction it said it was no use if you had taken penicillamine which was one of my first treatments. Another one did give details for an elimination diet saying lamb, rice and pears were safest then reintroduce different foods to find if any caused a flare. Can’t remember if I tried it! I also went to a nutritionist who ended up selling me a lots of supplements which I took for a while. Earlier this year I was thinking of intolerance testing but I read that they are not useful at all and on morning television someone sent tests off to all the companies and they all gave different results. For myself I have always felt that I would be better off without bread, potatoes and rice and stick to protein and green carbs. Still like my slice of toast to take all my tablets in the morning though.
I don't think it is an either/or situation about rejecting medication and only using diet to manage symptoms. The NRAS article Bpeal1 linked to highlights the types of food that have been shown to help (and not help). I tried an elimination diet too, to see if there were anything that caused the pain to get worse (I'm on medication but still living with constant pain). But adding things back in slowly didn't change my symptoms and so I've just focused on eating a wide-range of healthy food, but I do know others who found that removing some foods really helped with their pain. Having a nutritionist help you to go through this process is important to ensure you are still getting the nutrients you need.
If it helps you Red-Lillies I think that's great - it may not, but at least you will know that what you are eating isn't making things worse.
Yes. I went on a fast followed by an elimination diet. Discovered eggs, dairy and wheat were huge problems...and sugar! I eat predominantly very low carb diet. My inflammatory markers are now under 5 from 70's. I'm not as stiff or in much pain. I only take aspirin or paracetamol these days. Tiredness can still be an issue and I have to watch over activity, but I'm miles better.
I think trying a change in diet is worth a try. Some people are certainly triggered by food intolerance. It's a wise move to cut out sugar and rubbish food from a health perspective. Why not? It wasn't a quick fix for me. There were some immediate improvements in the lowering of inflammatory markers but it took a while for the pain and stiffness to get better. Diet has a bigger impact than people think, and most people give up too quickly. It can be boring eating a sugar free low carb diet.
I found that an elimination diet helped. I did the autoimmune protocol (or almost did it). It reduced my pain, improved my energy and made me feel generally better. The problem with elimination diets isn’t that they don’t help, it’s that they’re extreme and some people get obsessed with them and don’t do the reintroductions. The other thing is that people misunderstand how they work. Often you reduce the inflammation and then you can add healthy foods back in because your body isn’t overreacting to them and causing an immune response. There have been a lot of studies into diet and a lot showing links between leaky gut and RA. The reason the nhs don’t talk about them is that they’re not proven yet but it can take 20+ years to prove a scientific study. The first study recommending pregnanct people took folic acid was in the 70s but it wasn’t until the 90s that it was recommended by drs. The reason there aren’t more studies into diet is because the vast majority of research is paid for by pharmaceutical companies, and they are usually paying for studies that prove their medication is effective.
From an anecdotal point of view, I found cutting gluten, processed food and refined sugar helped my joint pain. Dairy and egg cause me eczema and reflux but I wouldn’t have known without an elimination diet. It takes about six weeks for eczema to heal. Now I do eat dairy and egg but occasionally. I can’t eat gluten. I do eat sugar but much, much less often than before. My little boy was having extreme allergic reactions to everything and we did the low histamine diet and he eventually stabilised with medication too. Now he’s not having allergic reactions at all.
I think for the most part a Mediterranean type diet is probably enough and avoiding ultra processed food. I also think addressing nutritional deficiencies is super important. My Rheumy kept diagnosing me with fibromyalgia. I had low ferritin and started taking iron supplements and the symptoms he said was fibromyalgia have gone. I never believed I had fibro and kept telling the rheumy I had the wrong kind of pain.
Thanks for your response, I agree with all of your comments here. Best of health to you.
The only diet I have heard helping with RA is the Mediterranean diet. Also, staying in the healthy weight range. But not individual foods.
Hello so in the world of divided opinion below I am very much in the diet can help camp and am with olive12345 in just how long it takes the NHS to take on studies that are out there. I am actually part of a study at the Norwich UEA that is looking at diet and inflammation but of course it will take a while to get to the doctors.
And for all those of you who think the doctors would be prescribing it if they thought it was a good idea - they get about half a days worth of training on nutrition when training to be a doctor!
I did an 8 week elimination diet and like Olive12345 have found that added sugar, gluten and dairy aren't great for my symptoms. But there are other individuals foods too and the point is that it is individual. Current research on autoimmune shows that leaky gut is very likely present in order to trigger autoimmune so is important to fix that. The meds we take too can impact the gut so therefore even if taking meds it is important to work on diet.
I followed the book Inflammation Spectrum by Dr Will Cole to do my elimination diet but every nutritionist I spoke to said that is the gold standard for them in terms of getting to understanding of what you have reactions too. The tests might seem like an easy (if expensive) option but can be inconclusive. And for example to find out if you have celiac you have to eat gluten every day more than once for 6 weeks before it can detect if you have it or not - I already know gluten impacts that way I feel so didn't see the point in eating that much.
There are a couple of new platforms, Commune and Sonia, that are collating research of multiple US doctors who have experience of treating root cause of autoimmune. I just watched the docuseries from Zonia and I think we are in a new era of research for autoimmune sufferers. Personally I am hopeful that I won't have to spend my life on medication where for me, the side effects have so far been worse than my RA.
My journey through trying to identify foods that might not suit my body took nearly three years and required obsessional adherence to the gradually reintroduction of each food. The only conclusion was to restrict the amount of refined carbohydrates and avoid meat. It makes you feel as if you're in control but still needing medication. I now stick to a Mediterranean diet and am currently well controlled on etanacept azathioprine and a small dose of steroids after a 2 year bad flare including a vasculitis episode.
Best of luck with your journey to better control.
I know that staying off gluten and healing the gut lining made a huge difference to my mums RA. Gluten in todays foods is a horrible way to destroy your gut lining and makes leaky gut lead to worse RA symptoms as your immune system is triggered. Try going gluten free and see if that helps.
Hello Red_Lillies welcome to the forum. I find support here insightful.
Firstly as you've had RA condition for 20 years what treatment are you on?
Secondly most of us are very savvy about our condition and any possible extra supplemental approach to our health. Diet is one aspect, but as we're unique in our health issues, RA being one of them, dietary facets will vary.
The diet you refer to seems to be one to ascertain allergic responses to foods, why do you think you have these? I have an intolerance to cow 's milk had it long before alternatives were available, also beef caused me migraines. So I personally avoid these, however they have nothing to to do with my having RA or how it's treated. So are you concerned about allergies or about finding a diet to treat RA?
As is often said on here if another option to usual medical treatment worked for RA it would be offered by the medical system, the cost to treat RA is so much.
Hello Happy5, thank you for your response. When first diagnosed I took methotrexate, hydroxychloroquine and Humira. This combination worked well for 11 years then my immune system was being suppressed so much that I was picking up every virus going around and it flatlined my white cell count, so they took me off MTX and hydroxychloroquin. I continued well for a further 3 years, then Humira came out of patency and I was switched to a bio similar which didn’t quite hold it, and I was experiencing the return if symptoms. The view taken by rheumatologist was that all drugs stop working eventually so they advised I take retuximab infusion. This didn’t do for me at all, gave me severe diarrhoea and I had a bad flare 2 months after the infusion. Went back on prednisolone and eventually onto Baricitinib, which worked well until summer this year when symptoms crept back again. They switched the Bari to leflunomide, side effects meant I had to stop it after 3 weeks having lost 10ths in weight and had headaches. Tried Benepali for 7 weeks, started with diarrhoea after 10 days and still have the diarrhoea even though last injection was4 weeks ago. The last biological they can offer me is adaptacept which I’m nervous about as diarrhoea isa potential side effect. Rheumatologist also want me back on MTX alongside the adaptacept. I’m looking at the nutritional approach alongside medication to see if this will help. Doing elimination diet seems to be the obvious approach.
Well you have been through the mill as they say. Not surprised you're looking at elimination diet. Hope things work for you.
Wow you really have been through the mill with all these drugs. I am early stages with my diagnosis but have struggled with side effects from all drugs so far and it's frustrating but also makes me anxious about trying others so I hear what you are saying. I hope you are able to both find something that works and that a diet exploration gives you some relief.
I spoke to my rheumy about my nutritional therapist help and he said that it was a good thing as leaky gut may be a cause of RA so makes sense to heal it. I have been gluten free for a few years but have recently reintroduced sour dough whole flour 36hr which at one slice a day for a week, seems to be fine. I couldn t eat oats for a couple of years but now I can without an uptick in symptoms. I don t eat dairy and limit oils - try to maximise omega 3' s and limit omega 6's amongst a lot of other things. I eat the best quality whole foods I can/canafford. I believe that the body wants to heal and needs to be given the right nutrients to do so, alongside the help of medications to keep inflammation in check. I find I need good sleep and limit stress as much as posible and feel better if I move regularly. It definitely helps me to manage the condition. It makes sense to me as 70% of the immune system is in the gut.
Well how wonderful to have a Rheumatologist that seems to be in touch with current research. The reality is our diets have change so significantly in the time that some people here have had RA. Ultra processed food was not really a thing until 25-30 years ago and it has taken us some time to really understand the damage it does to us. Why would anyone want us to know - there is money in processed food and there is money to be made when people then need medication. Without wanting to be too ranty about it is to say that it is a systemic issue that can be incredibly challenging to fight your way through when you're feeling ill. So hoorah for your Rheumatologist 👏
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