For years I was so ill I didn't really want to live as I had so many things wrong with me and doctors did various tests and came to the conclusion I was a hypochondriac. I had to crawl upstairs, sell my motorbike as arthritis was taking over. IBS was making my life a misery and severe sinus headaches.
My daughter found a website doing blood tests for food intolerances and allergies so I did this and within a week there was a vast improvement in my health. I was being poisoned by the foods I as eating and which people think are essential. Some of my family had autoimmune diseases, RA, Fibromyalgia and have died before me, younger than me. Now at 74 am unusual in that I have amazing mobility, strength, stronger teeth and bones (I had a bone scan early on) and on no medication, which is unusual for my age!
Unfortunately I passed the intolerances on to my daughter but when you know what you can eat and what you must avoid, life is fine.
It was dairy products and wheat (gluten) the culprits.
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Cheronia
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But it doesn't for everyone - I have done exclusion diets over the years meticulously and only found one intolerance. And although avoiding that group of foods helps to reduce the flares of Rheumatoid Arthritis it has not got rid of them altogether. I have found that aggressive early treatment, keeping fit and active and eating a varied Mediterranean diet, have been the things that has helped me.
Everything to do with RD/Auto Immune disease seems different for everybody,& seems to evolve differently over the years. We all know one Dmard can be lifesaving for you, but half kill me!
There is no Recipe...we just have to try to discover the eating regime that suits us.
In my youth ...a looooong time ago, when far more foods were natural & not full of preservatives I had bad reactions ? allergies to all sorts of things from black currants , anything related to pork, & I got swollen lips/tongue drinking from plastic glasses!
I swallowed anti histamines & thought no more if it. Along the way I had Hay fever, urticaria, IBS,many sinus surgeries.....in my 20's I even paid privately to have desensitising injections .....they had no beneficial effect at all......in fact the tiniest dose brought on exactly the strain of reaction it was supposed to be desensitising - worse than ever.....they couldn't find a low enough dose, even mixed with other chemicals, to continue the treatment.
When I first presented to a rheumatologist in my 50's & was found positive, one of the first things he asked was did I have Hayfever as a child! Go figure.
I now eat & drink anything I fancy....as in adulthood nothing I eat seems to affect my symptoms. Luckily I enjoy cooking (when I'm not too tired)) & eat plenty of fruit & vegetables .....I have never had a takeaway nor a Kebab in my life, although I do submit to the odd hamburger when I'm in the States! If an exclusion diet does help that is wonderful,but don't starve yourself,or think your have to avoid certain foods...you don't.....it's what suits you that matters, not what you deprive yourself of.
In my dotage, I have been wondering......today is there any research on very young people with allergy symptoms, that could head off RA before it manifests itself in adulthood? I guess there must be.......I'm seeing my rheumy this afternoon, will try to remember to ask him.
I wonder......is Amnesia auto immune? I sure do...memory like a sieve!
I disagree. To me the proof of whether somethings work for you is the reaction you get from eating/using it. If a blood test tells me I'm intolerant to X, but eating it makes no difference to my condition in short or long term then I know which I will go with.
The IgE blood tests are supported for allergies, but IgG tests are not universally considered reliable. So also depends on the blood tests.
That is your opinion, yes THEY say the intolerance tests are not considered reliable but the people who have been cured would disagree! After all, curing yourself with food and not drugs is not what the pharmaceutical companies want is it!
You are what you eat, a professor in the 1930's said this, John Yudkin I think was his name. Some people actually like to say, my arthritis, my IBS, nothing can be done, almost as if they enjoy suffering. Well I didn't and did something about it and am very happy.
How can you know what foods you are intolerant to? Much easier to get blood tested and don't eat those foods for a while while the body heals itself, then some foods can be reintroduced and see how it goes. We are lucky here we can do that, my relative in NZ had to send to USA to get testing done.
When you are so ill you would like to kill yourself, you will do anything to get well. I did and various posts disagree with me, that is their prerogative, I know my family and relatives have recommended non NHS testing to friends who are happy to be well again. One day the NHS will catch up, it will take a while as drugs for sick people are very profitable to the drug companies.
what gulten free bread and products do you get cheronia? there are so many in the supermakets,I never know which to buy? also what milk? I tried rice,soya, and that but the milk didn't help, but wouldn't mind trying gluten free? worth a go
Happy to help you! I like Asda and Sainsbury's gf rolls and bread. Asda do a nice soya 'milk'. I like Rice Dream Organic as I like that in coffee and buy it when it is £1. Supermarkets reduce it regularly and I stock up.Gluten can be quite harmful. I have learned to make my own cakes and pastry, not easy but nice when you produce something that someone says, you would not know it was gf ,you know you have succeeded. I lost weight when I gave up what I was intolerant to and am now the same weight as when I was 16. I was nearly 10stone before. I have had 18 years of this and things have got a lot better for us deprived ones! Lovely chocolate, bread but unfortunately bought cakes and biscuits are rather sweet and chalky, I can make better.
thank you cheronia, I am not a good cook so will have to buy for now, so you know gf asdas rolls are they milk free too?can you cope with eggs?
I in the past before ra have always eaten bread cakes-sweet tooth but I have always known my stomach couldn't tolerate wheatkbeaks, or shreddis, or too many biscuits Id get upset stomach,so maybe now can't tolerate any?
I have been changing my diet for 3 months and had veg,fish, chick, salads
no milk no bread but at weekend I did, lots of cheese and Saturday a waffle and had upset stomach and been ill with flare RA since
also if you cook gf foods how do you get round butter? and adding milk? do you just use rice milk instead?
Hi Veronica,generally foods from the Free From section do not have milk in them. My tests showed a reaction to egg white so I used to discard that but now I don't bother.I use Pure spread which you can get as soya or sunflower, which I use. I also use some Stork for baking, the solid block is fine, not the others though. If I ever eat something with butter as in a crumble someone made I get a terrible headache and can't now eat anything just to be polite, its not worth it and now so many people have dietary preferences I am not the odd one out! Sounds as if you are gluten and dairy intolerant.
I spoke out as I can't bear to see people and children especially, suffering pain when they need not. Too many of my relatives suffered with RA and associated auto immune disease and I was terrified I might be the same. I do use soya for cooking as its cheaper than rice milk!
Hope this helps, any Q's you have get in touch. I amazed at the response I have had, most of it negative, probably from men!
thank you so much cheronia, I know 100 % I can't cope with sunflower oil or veg oil
I have never liked the whites of eggs as from a child
funny because as a child I hated bake beans but in my day as a child you stayed there till you ate it, and got use to eating them but they always gave me belly ache but it was installed to eat them
I do not like baked beans or lentils but they were low on the scale of intolerance. I am fine with all veg. and make all my own meals and have enjoyed experimenting but gf flour is hard to deal with and the cookery books were useless. I can always give you tips if you embark on baking. You would like my choc,banana buns (cupcakes they call them now) my family love them, I always give them some as they do not have as much time as I do!
I buy pure free from dairy too , I really like it. I am on your boat regarding this subject, I feel better and I am not convinced it's solely the Baracitinib. I stopped eating gluten and dairy a while back and am feeling the benefits. I love cheese Veronica but it's not very good for you I'm afraid. It's fattening for a start. There are lots of tasty healthier alternatives out there..
It's a butter/spread alternative. Dairy and gluten free. Buy at 'FREE FROM' aisle most supermarkets. Dark chocolate is the only sweet I enjoy. Lucky for me, it has some good properties in it.
I am shopping tomorrow anyway so will go and find these things, I have been having gluten free rice crisps breakfast as I found it settled my tummy in the day but I had it with no milk or sugar, just dry
After 8's have milk in them. I buy Moofree which is delicious, from Grape Tree or Holland and Barrett. Also Beeches have a good vegan range, Lidl do a lovely 74% dark choc.
Haha - Hilarious! I bought another fridge to accommodate lol. Seriously!! I've done silly things, matter of principle! Like, needed stocking up on dream rice and went to nearest supermkt , got utterly annoyed at the cost £ 1.55 and decided not to buy and rather drive a good few miles to get it for £1 elsewhere haha! I know the difference in cost gets eaten up by the extra fuel cost but in my mind it's the principle lol. The crazy things we do! 😂
My daughter will always buy some for me when its £1 but the price drop does the rounds and there is a website, My Supermarket I think its called that tells me the price at all the supermarkets. I am a pensioner so need to watch what I spend and then I can buy good organic stuff!
...and 'health food shops' are very profitable from those they sell too , as are supermarkets who have bought into the 'healthy eating options' which often are not that healthy...and sold in plastic bags which bring their own problems....as are many of the free from foods...best to make your own from raw ingredients
there are no easy answers
everyone who sells food or drugs or whatever..are out to make a profit
Sad isn't it. I'd rather live of the land, share, stay kind and turn my back on money oriented life! I'm trying this blood test. Thank you Cheronia for sharing X
Thanks to the Internet we CAN find the answers if you want them and the answer is often simple. There is too much pain in the world. I saw how my father suffered with RA and am thankful I found the answer.
This is how it is.For some food intolerences play a big part in our disease for others not. Since there are actually quite many of us for whom dietary changes have an enormous effect I cannot see why this would not be something to try as a first line of treatment before jumpping to harder ammunition. Usually it goes the other way around. Those who have failed on RA meds and suffered in the process often for many years, turn to dietary measures often leaving the meds that have not worked behind and have better success. Many of these stories even on this forum. So glad to hear you have found a solution. Good luck. Simba
My personal thought is that the best thing is to start with both in parallel, and once the disease controlled then taper off drugs and stick with lifestyle measures (not just diet).
Of course it depends how the disease hits you - in my case it hit me like a train and I was virtually bedbound in 6 weeks. So I was desperate to control the pain and disabiliy as fast as possible. Perhaps people whose disease is a slower burn have time to work on lifestyle first.
Me too the RA hit me really hard. Could barely walk for months, wasn’t able to drive for 6 months. Have come a long way since. But been denying changing the diet thing.
Apparently now I have no RA in my hands or wrists only minor swelling so I am off MXT 20 mgs due to liver side affects after 6 years service of keeping me relatively pain free and being able to move ok and being offered nothing else except strong nerve pain killers. My hips are really bad, cannot lie on them at all and my feet are rubbish. Changed Rheumatologist a few years ago. They really upset me at last appointment insinuating that I had fibromyalgia and never had RA which is totally crazy. So many of my joints in my body were red angry and very swollen and I felt like my body was filled with hot concrete. I had all the blood indicators as well. Not sure what to do next. GP suggested another referral. May do this but travelling a distance would be involved. Sorry to offload!! I am determined to sort this situation out!
Have you actually had the private blood test? Doctors do not approve of it until they are tested and now they endorse York and are on their website. I have no faith in NHS and doctors, just legal drug pushers! I have had 18 good years and am very thankful for them.
They test your blood against 113 foods, also you can get other tests from them but that is the one I did and it comes back stating to what extent you are intolerant to certain foods. I had to cut out milk and wheat and some foods were less harmful and you find once you do this, your immune system gets better. I was so ill before! You often find that a food you have never really liked, turns out to be not good for you and shows up on the results. Look it up,York Test, up in York. I should get commission on the recommendations I have given them!! I am happy to help as I know what RA is like as my poor father had it, my older relatives have it, and it is cruel.
Arrr thanks for this Cheronia. Really appreciate it. I am in south Northants so York is 4/5 hours away but I am determined to look into this. Really really appreciate this reply. I am so not fussy about food eat a huge variety but the dairy is a big big thing.
Thanks again 😊
Ps Fingers crossed I am ok with eggs, I have always kept my own poultry and eat eggs most days.
Its all done by post so you don't have to go there, a kit is sent and you get given a lancet, prick the end of your finger and place it on a mini tampon like thing and send it off! I didn't eat egg white for a time but I do now. My immune system must be pretty good now so I can take the odd lapse, like real cheese scones!!
No, no single answer and RA starts in so many ways, at times really aggressivly like in your case and very often it sort of creeps upon you. In these cases I believe you actually have more choices. I am also sort of still not convinced that the immunosuppressants while relieving symptoms and inflammation may make it possible for the illness to
remain and when the med stops working it will return with vengeance.
Biologics may be an other story since here certain cytokines are targeted, leaving other functions alone. I believe that the fact that biologics work better on those who have not been on immunosuppressants supports this theory of mine, or maybe not.
After my three years of research I still see RA as a dysfunction of the immunesystem where the immunesystem is incapable of coping with inflammation. In other words our immunesystem is not attacking us it's in fact not strong enough to fix the situation, what ever it is. From this perspective it stands to reason that finding right ways to support the immunesystem, not suppress it, would be the logical thing to do. Evidently in the case of Allsopps wife the right support was found, like in so many other similar cases.
Best results with best chanses for med free remission seemes to be when starting biologics with mtx without previous mtx use, especially if this is started early in the disease. So quite understandable that med free remission is so rare since you are more or less forced to go through the Dmard phase first.
I agree Simba! Support not Suppress! I think of the immune system like a balloon that has over inflated and burst! Couldn't take any more pressure! It could be the simplest of things that certain people are doing that is keeping their disease calm. For example: - not eating gluten. I think this blood test sounds very promising!
Well it worked for me, I look much younger and do get a lot of attention even from men 20 years younger than me but I am not that interested at my age, I've been there done that many times. Ha ha!
I think you are the only one that said anything positive! As long as I am healthy and I really appreciate that, I do not mind not eating what I did before as there are increasingly more foods around now due to vegans. and the gf movement. The biggest advantage is that I lost weight and and now the weight I was at 16! I am very happy!
I'm sorry I wasn't obviously positive, because I do believe that lifestyle makes a big difference. And it does seem that food itself is very important for some. My negativity is toward firms making a lot of money out of us. I think an elimination diet that is followed carefully can be very effective and several £100 cheaper.
Hello Cheronis, I did the eat right 4 your blood type test (from the book) sent for it and it’s about $11.00 USA dollars and found that yes, most of the foods you have never liked are bad for you. Such as egg whites, however I really liked the yolks which in other tests proved neutral for me. I’m an O blood type which shouldn’t have any grains or dairy. No coconut or nightshade veggies etcetera. I eliminated the suggested food culprits and lost 9 pounds in 4 days 22 in 3 weeks and most of all reduced the pain and inflammation. I was really swollen and this food modification helped me a lot! I wasn’t diagnosed with RA until April of 2017 so we’re experimenting with RA meds which takes time. Your posts are great! Terlet
For those testing dairy intolerance it is worth checking out to see whether you are better on A2 rather than A1 beta casein. You can get A2 milk ( and goats cheese and milk is naturally A2). Also it is likely that certain foreign cheeses will be A2 like Feta. Human milk is also A2, whilst for some A1 is inflammatory. Disclaimer - have only one swollen finger, achy hands in the morning and pain in other joints which comes and goes (in part I am pretty sure dependant on what I eat).
I am intolerant to milk proteins, not milk sugars and you have to realise that we lose the enzyme that helps digest milk when we are a few years old, when breastfeeding is mostly ended.
Apart from stress which I am sure caused RA , I don't rule out cows milk being a contributory factor. I remember during the winter months getting into a habit of having milky coffee every morning. A mug full heated in micro adding teaspoon coffee to it. Wasn't so long after that early the following year my problems started. I drank a lot of milk as a child and was ok but distrust the dairy farms nowadays.
You are right to avoid milk unless its organic. My family were dairy farmers for centuries and looking back over the health history of them I can see they suffered as I did. I am glad not to eat dairy products as I know too much about the industry and how milk has deteriorated.
Also my parents were dairy farmers!! I grew up on milk straight from the cow. Absolutely love 💕 dairy products. OMG
My Dad and Granny suffered with RA and now me. Although my Dad was always fobbed off with fibromyalgia even when his knees were like balloons.
Goodness it’s a minefield. If I lived on my own I could do anything diet wise cooking different stuff for different people in the family fills me with horror.
I have given you the answer! My daughter, who is like me, manages ok and her husband will eat the same food as the rest of the family. One granddaughter has become a vegetarian. The other is a coeliac but is fine now. I loved dairy products and I did miss NZ ice cream (we went to NZ for 3 years) but now Alpro do some delicious ice-cream!
A cousin who was younger than me got fybromyalgia ages ago, he was a pharmacist so would not have listened to me anyway. He died a few years ago.
I'm Celioc had a blood test and camera down the throat. Its made no difference at all. I'm not saying any more but if only it was that easy to treat RA !.
If it was that easy RD wouldn't exist...No easy answers at all.
Personally like many chronic health problems I suspect RD is many diseases that science has not yet advanced enough to separate out. Seronegative and sero positive for a start (although there is some evidence to suggest they are different disease processes now).
Actually in adults its the camera into the stomach that gives the diagnosis on the nhs. The blood test is an indicater but not the actual diagnosis. In any case eliminating gluten would improve the condition regardless of the outcome of a bloodtest if your hypothosis was true. I believe its much more complicated and no one should feel guilty for having RA as a self inflicated condition if they eat an everyday foodstuff..
It is hard to believe but as regards coeliacs,NHS, its easier to have your blood tested PRIVATELY than a camera down your stomach. I know, I went through horrible tests to find out what was wrong with me and the blood test turned my life around, I would be dead now at 74. My daughter said to me a year after, no chance of a Blue Badge now!
Thank you for the information. People can do their own research for the scientific basis for this and other similar tests. I've looked at a few and this one I found quite helpful: sciencebasedmedicine.org/ig...
I have an Analytical mind, so can't help but search for an answer a key, and still feel there is one out there somewhere, weather its my diet, my teeth something causing it to go over load,
Its the result of eating foods that your body can't process thoroughly, they produce acid which is not good for bones and teeth as I found out. My teeth have never been stronger!
I had Osteoarthritis but got rid of it 18 years ago. RA and Fybromyalgia ware rife in my family,and has been passed down. I did not want to go down that road having seen my poor father suffer with RA attacking every joint it could and then dying early because of a high dose of steroids which made his life easier but shortened it.
You were lucky to find the allergens in time before RA most probably would have broken out, once established it is much harder to turn the situation around. Having a raised RF or inflammation markers should put us on alert when we are still healthy. It does in fact tell us that something is really not ok. I wish somebody would have told me this before my RA broke out.
I think the problem here is that NHS use blood tests for everything but food intolerances and I have stated why I think that is. I was so ill I considered suicide but my daughter came up with the blood test and paid half for me! I was going down the same path as my poor father.
That's understandable though I just needed to know if you had RD, thanks. The NHS do in fact use blood tests in testing for food allergies, measuring the antigens, it's usually that or a skin prick test.
My h is undergoing various tests for intolerances/allergies presently, having blamed his troubles on IBS for too long he requested he was tested. He's not here just now & I need to get it right because I'm not fully au fait with them.
They didn't do this 18 years ago so if this is true, thats fine. I do not have any faith in the NHS due to my treatment and have resorted to alternative remedies ever since without pharmaceutical drugs.
Things have obviously moved on in 18 years because yes it is true. Unless we have up to date knowledge or experience don't see how it's possible to state otherwise with such assertion. Part of the jigsaw has been confirmed, there's no doubt my h is lactose intolerant. We await the results of other intolerance tests.
My various relatives and myself have had tests at various times over the years as its interesting to see if you are still intolerant of what you were 5 years before. The beauty of this test is that you get all the results at once, if you are that ill you do not want to hang around waiting for the NHS to catch up!!
It is interesting that milk has been mentioned because prior to my diagnosis I had spent months on and off for a couple of years on various shake diets. I always put the weight back on when I came off them so lost out both ways.
We should not be eating the milk designed for calves, we cannot process it, we are weaned from breast milk at a few years old. We were dairy farmers and I am glad I found out what was affecting me so badly as the dairy industry is not kind, I still can remember what went on in NZ on dairy farms when I was a teenager, it haunts me. I was nearly 10 stone before and soon lost weight once was tested for intolerances, now I am 8 stone. I can spring out of bed in the morning with no pain and always appreciate it.
hi cheronia you stick up for what you say seems to some peeps cant listen unless it their way i was shot down cher by some peeps for haVing an IDEA anyway this is my way i am fasting at the moment no set procedure if peckish i have my magic mix in fridge at the ready spoonful does job dont think food some foods should poison marks and this working and working WELL i dont jump on scales every few days (if only i could pigs will fly first') slack cloths saying all also the wifes looking worried get very h----y when fit shsssssss get told off its only nature but back to food again think back to a kid fr/freezer nah tesco/asda nah what then jam butty bike open front door off to quarry for hours all of sudden pangs of hunger off home to sugar /sauce /butty back out again this time dam/canal/fields football what i am getting lets get food out of head/ and off telly we would be a lot healthier and fitter WAR YEARS BRING BACK RATIONING this is the same as lots of things smoking, plastics so on the big boys have known about not just suddenly appeared well put that lot together what have you got daft old man byeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee
Thanks Paul, I can only think people have to be really ill,as I was, to try something new. The NHS does not have the answers, people still think it does! I heard of one woman whose son was tested and found to be gluten intolerant and yet she still feeds him cakes etc and poor boy is suffering. Extreme ignorance. Good Luck!
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