I was just wondering if anyone has tried self treatment with diet alterations and was it successful? There seems to be a lot out there on this subject, leaky gut etc. I have just been diagnosed with probable PsA.
5 years ago I had an ileostomy for diverticultis and a year later had it reversed. I then developed a large surgical hernia that had to be repaired but I had a very nasty infection in the wound and 16 weeks later after a lot of antibiotics it was eventually resolved although my scar looks dreadful. I thought I would just give you a bit of background information about myself. I am getting mtx next week and the thought of being on drugs for the rest of my life horrifies me and I am just wondering if anyone has tried alternative methods of treatment and how successful they were.
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mole147
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I have RA for 20 years, the past 3 years are the worst with a lot of surgery. We eat paleo, avoid sugars. Use biological food, and most fresh. For my weight it is very good. I can't say my RA is better, but maybe it will be worse when I don't eat paleo. So I stay on healthy food!
I've been vegetarian all my adult life. I have read various pieces of research over the past few years that this type of diet may help reduce inflammation.
My RD started in my 20's but I found it very difficult to get a diagnosis because I don't have redness or much swelling at all. I have started to wonder if my diet might have played a part in that, however, I'm not going to give up veggieness just to try to find out!
I know that I was weaned very early as a baby, due to milk intolerance (there weren't all the alternative baby milks available in the 60's that there are now) and I do tend to suspect that this may have been a trigger factor for my auto-immunity - much earlier exposure to gluten etc than would be advised nowadays.
I think diet probably influences a great deal more than just our weight and a good, varied, unprocessed diet can only be beneficial. I do take MTX, HCQ & LEF as well - diet alone just doesn't do it for me. Hope you manage to work out something that helps you.
That's very interesting Livingston - I was unintentionally starved as a baby because my mum didn't produce enough breast milk - long before the days of health visitors etc. I was apparently a day off death when a family friend who was a nurse found me. I was "saved" by introducing cow's or formula milk with semolina to bulk me up round the clock. No doctor was consulted because of fear, even in those days, that I would be taken away! A rheumy professor said this was almost certainly why I've got autoimmunity and my younger sisters haven't. I have been gluten free and avoid caffeine and refined sugars for five years now and also wonder if this is why I show very little swelling and my RA is mostly quiet these days.
I read a book about leaky gut syndrome and autoimmunity - keep meaning to try the Paleo diet having been given the book for Christmas.
There is some evidence for the use of a low starch or no starch diet for spondylarthritis based on the molecular mimicry theory to do with klebsiella in the gut being the autoimmune trigger for spondyloarthritis. professor Ebringer in London was one of the original proponents of the theory and what was called the "London AS diet". But, there has been no further research done to confirm either the theory or the benefits of the diet. Having said that, a lot of folk with spondy (AS, PsA, etc) do seem to get at least some relief from anything from a low starch diet through to a very strict no starch diet. The theory doesn't hold for RA though, as its a different autoimmune disease and a different trigger, and no evidence at all that Klebsiella has anything to do with RA.
Also, while there are a few people using the LSD/NSD alone, most people with spondy seem to use the diet alongside their medical treatment, not instead of it.
I have been following a vegan diet lots of raw food (high carb, low fat) for several years now and have been getting alternative therapy for my arthritis. This helped me feel better, give me more energy and help me reduce the medication that I have been On.
If the paleo diet works for you and once your body has gotten rid of toxins that have built up over the years etc etc and if you feel like you are not getting any ra symptoms that is great.
However the reason why I have a problem with the paleo diet is because if you follow the paleo guidelines then you are eating high fat high protein and my understanding is that this is not the best diet to be on if you suffer from arthritis..
if you do change your diet, look at healing your gut .. disease starts in the gut, do things like remove toxic from your home. Start dry skin brushing etc etc
if you need any further info from me feel free to reach out.
Hope you find a diet that works for you. All the best
I have read many things to including the paleo approach. I recently went to have a food sensitivity test and the results we right in the sense of what I read in regards to food and there affects. For me the results from the test were red meats , all dairy , Alcohol, coffee, sugar, all veg from the night shade family. cherrys, rhubarb, lemon and limes and nuts. now having the info its I'm trying to cut things to see how I feel.
I've just read a fascinating book called Gut by Jiulia Enders. I hadn't realised that so much of the immune system - two thirds I think - is in the gut. Hence link between something like IBS and arthritis.
Antibiotics as we all know can wreck the 'good' bacteria in the lower intestines. Enders advocates the use of probiotics to restore balance (the sort you buy in the supermarket are not targeted enough, nor are most of the ones sold in health food shops)
Anyway, as a result of reading this book - which I highly recommend, it's an easy read written in layman's language though she is a doctoral scientist - I am going to try something called kefir. It's a kind of fermented goats milk/yogurt which a company called The Chuckling Goat (yes, probably chuckling all the way to the bank) sells. It's not cheap - about £40 for a twenty one day supply - but apparently it is brilliant at restoring the bacterial balance. My daughter - who does not have arthritis - has just tried it and says she feels amazingly different. Her skin is clear, her energy levels high and her "poos are mini masterpieces"!! And she is normally very sceptical about dietary 'miracle' cures.
I doubt it's going to make any great difference to my spondyloarthropathy but as I am concerned about the cocktail effects of mtx, naproxen and omeprazole on my gut I think it is definitely worth a try. I will post here when I've tried it. But meanwhile - read the book. If nothing else it will revolutionise how you go to the toilet!!!
If you have time it is very easy to make things like yoghurt, drinks using Kiefer. youtube.com/watch?v=JwD7gsR.... If you have any sort of gut issues look into taking some probiotics.
There have been lots of discussions on here about altering your diet to help with the RA. The consensus from most people is that changes can help, but be careful not to cut out anything that is essential in your diet - and supplements may be not supplement adequately. But what changes seem to vary from person to person.
I know from experience that, for me, some meat (eating a steak, for example) is definitely linked to a flare up, so I avoid meat. I don't know if it is the meat or other things in it from our farming methods, but as I don't like meat much anyway, I prefer a vegetarian diet. other people have found that avoiding particular foods helps them. I have tried other exclusions - six weeks at a time, re-introducing as a challenge, etc (look it up!) but haven't found anything else useful for ME.
What many of us object to, is other people trying to persuade us that this diet or that diet that has helped them will "cure" us. Unfortunately RA is a ragbag of conditions and trial and error is still the only way. It is improving gradually with more targeted treatments, but there's a long way to go before we understand what is going on in each individual.
Thanks for all the responses. From what I can gather it's a "suck it an see" approach, there can be no harm in trying different types of diet to see if it makes any difference. I need to lose weight anyway and that is no bad thing. The "leaky gut" theory is very interesting to me as I had part of my colon removed a few years ago due to Diverticulitis. Also I had a bad bout of Norovirus 6 months ago which I am now starting to believe may have triggered my PsA. Funnily enough my "guts" have not been the same since the virus and I have been taking probiotics which were helping and then the PsA started, there has to be a connection somewhere all I need to do is find it! Also the genetic side is interesting my Father had 5 brothers and only my Father and one other brother suffered from Psoriasis but no arthritis in any of them.
I wonder how many people realise that most of your immune system resides in the gut I certainly didn't. It seems to be a good place to start the healing process.
I see so many ppl asking about this diet, that diet, stand on your head in a bucket of soup therepy, the fact is..yes, you might feel a bit better, but RA is an uncurable progressive disease, the meds we all take are to help symptoms in part, but the main use is to slow down the damage.
Diet and therepies, in MY opinion are not going to slow down RA.
I prefer to carry on as usual, take my pills which do help me, and not become a slave to a diet, because usually, they all are 'miracle' cures, and they will take your cash quite happily.
If I fancy a big fat chip butty, then that is what I will have, guilt free, and I will enjoy it
snookum in my experience every one is different eg if you have had ra for twenty years it will prob take a long time before you start feeling better .. in comparison to someone who has only had ra for a short period of time. In my experience you don't know until you try changing your ways if it will make you feel better and secondly it is all about your state of your mind
I've no idea what a Paleo diet is but am Celiac so no gluten. It makes no difference at all to the RA. In fact I've lost weight but eat more chocolate to make up for the loss of lovely bread and jam sandwiches. I think it you think something will work then it probably will and who can prove otherwise. Realistically had the blood test not been done and a positive result found would I still be eating bread, cake etc ? well yes I would.
I'm sure that it might help some but if diet made any difference then the nhs would not spend millions on drugs but just tell us to stop eating this or that.
I'd add we have our own vegetables and fruit so its not treated but fresh. I grew up on a farm so as a child never ate anything but home grown and still have Celiac, the two conditions are linked as auto immune but do not under any circumstances give up gluten before a test as its vital to be eating gluten to get a result correct as as its a condition linked to B12 defiancy its vital to be medically treated.
It is really nice to hear a positive response and that you can possibly do something. At the moment I am just having overwhelming thoughts of doom and gloom and I am trying to be more positive but it is difficult. I had some depression many years ago and got through it by positive thinking but I feel like I am sinking again. I have a lovely family and I don't want to let them down.
It's always awesome when someone tackles their RA/PsA positively with lifestyle changes. Before I was diagnosed with RA I ate basically paleo, I went to the gym and was in peak condition. Then I got RA and my body actually felt worse if I cut carbs out. I have found that small amounts of carbs helps me fight flares.
I have begun growing my own fruit and vegetables, which apart from not having chemicals on them is incredibly good for overall wellbeing (vitamin D from sun, mindfulness etc).
Drinking enough water, staying hydrated, not having too much caffeine or alcohol are also things I have noticed increase pain.
Good luck with any diet changes, I hope they go well. Keep us updated 😊
If you eat carbs they will give you energy. Please don't be scared of carbs .. fruits and veggies. You might want to get your vitamin d levels checked if you are low in vitamin d and most people in the uk are you can suffer from joint pain.
I am so confused by being given unsolicited advice and having my diagnosis questioned.
To clarify I am not 'scared of carbs' nor did I say that in my post
To clarify I do not have a vitamin D deficiency and do NOT need advice to get vitamin D levels checked. I grow vegetables to have fruit and vegetables minus chemicals. Vegetables are grown outside hence I get a chance to get vitamin d from the sun. In no way did I imply I am deficient in anything.
I was giving my experience of changing foods to help with MY RA, to support someone trying to take control of their illness, not inviting judgement. I hope I have cleared up any confusion.
I do not suffer from joint pain because I am deficient in vitamin D. I suffer from joint pain because I have RA 😂😂😂 if only I could go out in the sunshine and be cured!
Oh and just to top it all off I actually got my first flare in the summer in the south of France. Highly doubtful I had a lack of vitamin D at that time.
Seems to me you're not doing a bad job of trying to do all you can to help yourself manage your condition Terri! I lived in a sunny country for the first 4 years of my RD life, ate a Mediterranean diet (as one would living in the Med & which I still follow here in the UK), had sun exposure in abundance & I still had flares. Sometimes all was needed was to sit them out, other times a short course of steroids or slight dose change in my meds, all the usual stuff. My Consultant "prescribed" 20 or 30 minutes of daily unprotected sunbathing (dependant on time of year) to boost my vitamin D levels naturally. Flares are little understood, could be due to stress, infection, or simply RD having particularly good go just to break the monotony. It's a tricky disease at best so I'm of the opinion if you do all you can to manage it, & it sounds to me that you do, then you can ask no more! x
This is what I am planning to start with. I think I need to detox myself first. I was going to start down the smoothie route just using fruits, vegetables and flax seeds, 3 portions per day. Also drinking 3 litres of water per day and a good multivitamin with probiotic. I am going to try this regime for a month. Does anyone know of any fruits or vegetables that I should exclude?
mole I can message you some more info on Wednesday if you want me to but eat organic foods if you can .. there are loads of veg box company that you can buy from these or go to a farmer market this will help keep cost low... also some people react badly to night shade veggies but see how you feel when eating these
also acidic foods like white potatoes might cause you some issues and some people have problems eating to many nuts and seeds (overt fats) maybe try eating buckwheat etc.. but again see how you feel
also if you start eating lots of raw foods and start juicing your body will start to detox... ps if you start eating this way you might get some withdrawal symptoms for a while put push through them
I would just like to say that you have to be so careful in trying these so called diets.
18 months ago I went to a clinic that did food sensitivity for my ' poorly gut ' several visits to the loo. I was told that I was intolerant to wheat and glutton. I changed my diet and 9 months later was very ill, I was 8 stone when I started and lost 2 1/2 stone dangerally thin and worse of all my gut was not better but worse. My dr said to stop the diet immediately. My daughter suggested that maybe I was lactos intolerant and keep a food diary before I did anything and see what triggered the loo trips off and what made it worse. As I drink a lot of tea I tried lacto free milk and the symptoms eased, then I tried the cheese and other things that are lacto free and lo and behold I started to put the weight back on and my bowels were a lot better. Now as long as I stay lactos free my gut is back to normal and I have put on a stone in weight.
The moral of the story is to be very careful, these so called clinics that charge you the earth really are only interested in money not you as a person.
I have been trying to think of any gut issues I have had recently. As I said in an earlier post I had part of my colon removed due to diverticulitis about 5 years ago and had the reversal operation 3.5 years ago and although that went wrong, they eventually sorted me out and going to the loo was the best it had been for years. After the later hernia op that got infected things were not so good before the op I was fine then after the infection guess what, type 2 diabetic, many people told me it was probably "switched on" by the infection but I am dealing with that pretty well. I did a bit of research and noticed that quite a few people found that they were allergic to different things than they were before the colon operation. In the last year I have noticed that I am going to the loo a lot more often and nearly always after an evening meal I have to rush to the toilet which involves a lot of wind. I am convinced that my recent PsA diagnosis is connected to these gut issues. Funnily enough I realised that there was a problem and started to take daily probiotics about 2 months ago which appeared to be helping but since my diagnosis I know I have to go further, a lot further with diet. Let's see what happens.
Getting back to conventional approaches - have you had an abdominal ultrasound recently Mole? I recently had my gallbladder removed after many years of insidious gut troubles - including flatulence which I tackled by dropping wheat and refined sugars, having suffered from obesity and autoimmune thyroid disease. I really can't say what has caused what for me and I did lose a lot of weight and have remained largely wheat free for five years now. But I have been surprised to find that I haven't suffered any gut trouble recently at all and can only think this is because my very large gallstone was responsible for most of it.
Although I'm open minded about dietary experimentation I actually feel that a well balanced diet comprising of wholesome, organic food is probably the best answer for me and is how I have lived for five years now. I do avoid wheat unless it's unrefined and try to exercise with stretches and yoga or tai chi most days to unstiffen. But I've chosen to avoid obsessing about specific diets or further food elimination. I haven't the temperament or time to eliminate foods in an organised way and it's pointless doing it in a disorganised, uncommitted way. I just know that I feel better if I avoid refined foods, caffeine and wheat.
It's all very well being reminded over and over again that RA is incurable and only manageable for most people with drugs. But I haven't been able to tolerate four DMARDs to date so am only on a very low dose of Prednisolone now. Even this drug is causing some problems with my blood pressure and weight and I'm hoping to taper off completely by December because I don't want to end up with the family disease of diabetes type 2 and need to get my weight back down. I am not allowed to try any more immune suppressants so far and despite other problems my RA symptoms appear to be minimal now and non erosive to date. I am therefore very careful to avoid chip butties and find the leaky gut theory very interesting - especially as a person with a highly allergic disposition.
I've seen mixed reactions with it so far. I think if you stick to it very strictly, it'll benefit in the long run for sure. I believe firmly with the ideology that leaky gut is a huge reason for RA and other autoimmune diseases, and that diet can help that for sure!
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