Hi All, I was looking into healthy diets for conditions such as PMR and found this information with regards to what they called leaky gut and how it is potentially responsible for a great deal of immune illnesses by allowing certain pathogens to get through your stomach wall, intestines etc and into your circulatory system , then it went on to say gluten has a lot to answer for for virtually all forms of immune illness , I hadn’t heard this mentioned in my nearly 4 years of searching for answers to this painful and frustrating condition we suffer. Maybe our PMR experts on this forum can answer is it worth trying a gluten free diet , are there any PMR sufferers on here that are already gluten free if so has it helped , ? . Wishing you all a pain free day 👍
Gluten free diets for immune illnesses - PMRGCAuk
Gluten free diets for immune illnesses
I think as per usual it depends on the person and I suspect the interaction of many things. I was gluten free for years before GCA.
Interesting. My Christmas house guests are all gluten free, so I’ll let you know, as we’ll probably join them in it for a month anyway.
I’m not really switched on to what is and isn't Gluten free, but if it really did make as much difference as these particular people claim it’s got to be worth a go . I will put the book title on later that i read it in , parts of it make interesting reading . 👍
I tried gluten free for a few months- made no difference!
When I had blood tests in August, one of the results said I'm not ce!iac, but cannot tolerate gliadin in g!uten, so advised to avoid it....but didn't mention it in relation to PMR....
I have avoided it about 90%........it is difficult to say if I feel any improvement because I'm lowering from 9 to 8.5........which is never easy for me....but I do feel a bit better......not so much nausea and bloating.....watch this space......
Good luck if you decide to do it....but be careful, gluten free products can contain a lot of sugar.......
I was eating gluten-free when my PMR was first diagnosed. It wasn't because I thought it might help but because I had worked out I had an "allergy" of some sort to wheat - I had localised patches of eczema that went away if I didn't eat wheat and using gluten-free was at the time the only way to be able to avoid wheat in the UK. It isn't gluten I have a problem with - it is something in the structure of modern wheat starch. I can eat other gluten-containing grains with no problem - and do so here where I now live, not that I eat a lot of carbohydrate anyway now.
If it does help I suspect it is because being gluten-free usually reduces the amount of carbohydrate you eat - unless you patronise the Free-from aisle in your local supermarket which isn't a good idea when on pred as their products are very high in carbs and sugar in particular to make them taste anything like the originals. It certainly removes wheat and many people do struggle with modern wheat as I do.
Gluten-free means not eating anything including wheat, rye, barley and, in some cases, oats. Or derivatives thereof. Believe me, going totally gluten-free is not easy - though a lot easier than it was even a few years ago. It means reading labels meticulously - though for us it is less important than for someone with coeliac disease who can become very unwell once they have been off gluten for any length of time. Patients with a diagnosis of coeliac can get some products provided on prescription - but the selection available in supermarkets now is wide, if expensive! There are a lot of things that are naturally gluten-free - but it does usually mean a big change.
The book I am reading that brought the subject up is called, the autoimmune wellness handbook. I haven’t finished reading it yet but there are some interesting ideas in there also some nice healthy recipes 👍
As someone with a medical science background I do happily read these things (if they aren't too expensive) so I can make up my own mind. There aren't many that are entirely convincing to me - not enough is known about it by anyone to make some of the claims they make. Omitting any food item is fair enough provided you are careful about not throwing the baby out with the bathwater. But all too often the claims come with ahidden agenda - they sold you the book in the first place and mostly they also have a website selling supplements. That is the point at which I usually assume they are aiming to make money out of me...
I've got that book, very interesting from an holistic health viewpoint. I also like Amy Myers 'The Automimmune Solution', what she says in the book makes a lot of sense, but like PMR Pro says, she is always trying to sell expensive supplements too saying they are also essential, which puts me off as in that respect there is little or no evidence they're effective.
I tried going gluten free for a month and it made no difference except to my wallet. Also allergy testing showed no wheat allergies but I was willing to try anything. I never had stomach or bowel issues anyway.
I was reading to try and help my husband's IBS when I found out about leaky gut and it's connection with autoimmune diseases. I can't remember all the details but made several changes to my diet as a result, including the addition of some fermented foods. I didn't go gluten free but eat less bread and only wholemeal multigrain sourdough, and made biscuits etc with oat flour.
Not sure if it makes any difference to PMR but I feel better for it. My husband wasn't interested and eats as he always did, he still has IBS!
Hi scats. I originally stopped bread in a desperate attempt to reduce the discomfort of IBS. I believed it was a combination of wheat and yeast (in this country) causing the problem. Made a huge difference to the IBS and I lost 10lb in about two weeks. I later went gluten free and felt even better for it. If I eat any gluten now (with or without yeast) I get the IBS back. Normally it's a Gregg's sausage roll that is my downfall. 😱
Thanks for your interest. I agree with you I know when I've eaten white bread, especially shop bought, swell up like the proverbable barrage balloon, so uncomfortable!. My husband doesn't feel it ,he says! I learnt to make sourdough, which helps me, but he still craves Tesco cheese bread!. Luckily (?) we don't live near enough to the shops for either of us to easily get access to our unhealthy desires.
Unfortunately my suggesting a change of diet has no effect, but if his doctor were to say avoid white bread there would be none in the house......
Latest excuse is he doesn't want to make more work for me, but I love making bread and do it anyway, I can't win.
I wouldn't mind, it's his body, if only he suffered in silence!!!!
I've tried an elimination diet (AIP or Autoimmune Protocol) and not found gluten to be a problem. There is such a thing as 'bad bread' though. Most of the mass-produced bread in Britain is made usiing the Chorleywood method which makes it faster and therefore cheaper to produce and gives it a longer shelf life, but also pumps it full of enzymes, softeners and preservatives. I only have organic rye and sourdough bread now, made in the traditional way from local small bakeries. Expensive at around £4+ a loaf but I think worth it for an occasional treat. I do also try and keep carbs low and generally follow the Blood Sugar Diet way of eating. If you want to try and find out if gluten is a problem try eliminating it for at least 30 days, ideally 60 then reintroduce and see if it has any effect. I have however found that cutting down on foods that are high in histamines such as cheese, yogert, wine and also sugar have really reduced the number of flare-ups I have. It kind of makes logical sense to me as histamines cause inflammation, maybe once your body goes autoimmune it can't cope with extra histamines.
Very good point 👍
Hi. I don't think science has categorically proved the existence of leaky gut syndrome, however it seems to me to be plausible. These days mankind seems to suffer from all sorts of conditions which weren't around 100 years ago. I have read somewhere that wheat flour today is different from years ago. Wheat has been genetically modified to increase yields and make the flour "prove" faster in the bakery. The gluten molecules are now smaller and able to pass through the gut in susceptible people.??? So much of our food is processed and contains all sorts of additives so it's hard to tell if diet and leaky gut affects our wellness. We have evolved as a species more slowly than the technology that has influenced our food production. IMHO I think the research on the gut microbiome is sound and I certainly feel more healthy since I improved my diet, increased omega 3 intake and slashed carbs. Stress is a 100% trigger for me ( pmr and gca) but relaxation and yoga coupled with the dietary changes has meant I'm now at 7/7.5 mg after a year. That's incredible and I'm grateful for being so fortunate. We are all so individual so try it and see what happens.
The local mainstream medicine coeliac guru in Durham 15 years ago was fully convinced about the concept of leaky gut - and given his field you have to take him seriously.
It is interesting how such things crop up in populations whose exposure to wheat was late and a sudden massive change. There are fewer in regions where the amount of wheat in the diet increased slowly over many years - you see that here in the valleys and further south in flatland Italy whereas coeliac is quite common up in the mountains where wheat didn't grow and had to be brought in. They used buckwheat a lot - naturally gluten-free as it isn't a grain.
Some of the problem with wheat though isn't gluten - and many people can eat proper sourdough which is made slowly with natural yeasts - not by the "instant" process with far more added bakers' yeast. Even the NHS website says that and it applies to me - a week in France eating slow-made wheat products wasn't a problem. If it hadn't been I'd have been very hungry!!!
For years I took antihistamine to help with an irritating clearing of throat prob. Never linked with anything I ate and put down to pollen etc. I stopped taking antihistamines a few years ago (hay fever symptoms naturally reduced with my age and I'd read some heart related scare in the press). I'll get to the point! Since cutting out gluten - no throat clearing cough at all after eating. Bingo. Not only am I hopefully helping myself whilst on pred, I've resolved a particularly nasty affliction. I also refrain from processed sugar, alcohol, caffeine, and drink mostly soya milk. I eat healthy fat. My health check was yesterday and I'm a healthy weight, 4% chance of heart attack, 6.1 cholesterol.
Well I'm coeliac and Lactose intolerant and have still managed to get PMR!! so I don't think there can be a connection!
I have GCA/PMR and follow a gluten free diet but not strictly as only certain things affect me - I'm very intolerant of bread, but having eaten it all my life and wonder why now does it affect me so badly. It's all trial and error I'm afraid until you find find what suits you - but be wary of the content of 'gluten free' foods they are high in carbs and sugar. I'm not convinced it has any effect on PMR. It hasn't made any difference to me and I'm 4 1/2 years on.
Don't know if this will be of any help - my granddaughter is gluten intolerant and has read up lots on it to find her suitable diet - but also what has worked for her is a low fodmap diet, which I hadn't heard of - it's ordinary everyday foods containing either high and low fodmaps. Everything is cooked from scratch and she avoids high fodmap content. As a newborn she always had tummy ache and used to scream when fed baby milk so the intolerance was there early on. The parents had to work through it and when she was weaned she was much better. Her dad was the same. She did her own research as she got older as doctors never seemed able to help. She looks much healthier now, no more pale skin and dark eyes, and no more tummy ache! Her poor body must have been in constant fight mode - she isn't coeliac. They are coming over for Christmas so I sense a few cookery classes on the horizon.
"having eaten it all my life and wonder why now does it affect me so badly"
Changes in farming and baking processes - and the additives to the stuff too. All mount up. And our body also changes over time - dare I say it, aging. I also didn't have much problem before PMR - but the timing of the rash in the couple of years before PMR appeared suggests it was related.
There is a theory, and I think some evidence, that the glyphosate which is spread so freely on crops in many countries now, especially genetically modified crops, can cause gut problems in humans. Glyphosate damages the guts of the insects it targets. It disrupts the gut microbiome of bees, for example.
Even if we avoid eating foods so contaminated the world itself is so contaminated by this widespread use there are probably not many people on the planet who do not have glyphosate in their tissues.
We really have been so profigate with chemicals on this planet, goodness knows what the outcome will be.
People have related to plastic pollution, some of it can be easily seen, glyphosphates will be more difficult. The farmer next door can spray his fields without giving us warning, I usually taste it as my first indication of what's happening. Estrogen in the rivers and drinking water was a headline years ago but I hear nothing now. Big pharma is very powerful. Money still rules.
Humans have an ability to block out problems they can't deal with.
Hi. I'm no expert. I got a skin disease 30 years ago called dermatitis herpetiformis. itches like hell. Was told half the people who get it are coeliac. So got tested and yep. Onto a gluten free diet and while I was a big guy heavily involved in sports I could not believe that anyone could go a week with out stomach sickness or bowel problems. A really great discovery. Got my pmr diagnosis in September and also autoimmune b12 deficiency. My daughter has coeliac and Chroans . So while not an expert.....untreated coeliac causes the intestines pore size to increase. More complicated molecules cross over which causes problems like the skin disease which is totally controlled by strict gluten free diet.
Interesting - my wheat problem started with something like eczema but later I developed other rashes that started just like dermatitis herpetiformis (the intense burning and blistering) but it only happened when I ate wheat, not other gluten-containing grains. The dermatologist I saw was totally dismissive so I got in contact with the local coeliac guru. So I never did find out if it was coeliac as he said if you can control with diet, go for it! Unless you want a prescription for gluten-free bread it isn't worth the performance! I didn't, I'd rather go without than eat g/f bread - then at least, some freshly made and served warm is perfectly OK!
The gluten free bread was awful years back but now much better. I like the Aldi brown bread. Coeliac is not an allergy but an intolerance. And some are very intolerant and some a little. So in theory you could be intolerant to wheat but not react as badly to barley or rye. The test used to be a pain but now there is a blood test.
No - definitely appeared to not be gluten, I reacted to the Juvela gluten-free flour they make from washed wheat starch. Could have been the chemicals I suppose. And I can eat at least moderate amounts of French bakery products without problems - discovered that while on holiday on a canaboat where our host had done the shopping without my input. He is a doctor and knew I had a wheat problem... Even the NHS says that is a feature for many patients with wheat intolerances of some sort!
One does wonder. I should have mentioned that at least in North America glyphosate is used to dessicate crops like wheat to speed up the time to be harvest ready. I'm sure that isn't helping, let alone all the major foods which are now genetically engineered to withstand glyphosate during the growing season. Farmers refused to accept GM wheat, but they still use glyphosate. 
I hadn't heard about that use for glyphosate, that's frightening.
There is certainly something very wrong with industrial food production. I have a story to tell about corn, maize not the generic Brit term for grain. A good friend of mine knows the family in question so this is not hearsay. The daughter in the family was allergic, as she thought, to corn (maize) but was going to be spending a few months in a Latin America country. I'm sorry, I don't remember which one it was, but corn was the staple food there. When she got home she declared that she seemed to have outgrown her sensitivity to corn and was happy to eat it. BUT when she ate corn at home in Nova Scotia she discovered she still had the same problem with it as she'd had before, although while away despite eating the local corn every day she'd been perfectly fine.
It's worrying what we put in our bodies no wonder there are so many unexplained illnesses. I like to grow as much of what we eat as I can but am so frustrated this year as I was unable to get things started this Spring and now I am having to buy. Don't you just love PMR!
How is the decorating going? I am actually repainting the kitchen cabinets at the moment, good to be able to do it again, arms are getting stronger.
I wish it was just "decorating". It would be nice to have a water supply in the condo. For paint cleanup we've been taking big jugs of water down, and a bucket, and flushing the used water down one of the increasingly horrible toilets which are still in place. However I'm pleased to say that my arms and shoulders are holding up although I seem to have developed very severe sciatica, which comes and goes, so something wrong with my back now. Oh well.....
Hi All just thought I would give an up date on my Gluten free plus zero. Alcohol and just about anything else that isn’t particularly good for you diet. I think we can call it a body cleansing experiment . In 2 weeks since I started it I have reduced back to 5mg from 10mg , i’ve Exercised every day including teaching 2 martial arts classes 4 times a week and a yoga flow session every day for 20mins , also I have slept straight through for a minimum of 7 hours for the last week . With the exception of slight pain in my lower back which is most likely arthritis which I was diagnosed with a number of years ago . I am pain free, I don’t know if I am Gluten intolerant but all I know is removing all these things from my body has made a massive difference to my health , I e-mailed my new Rhuemy Dr Hughes from Surrey who I had a private consultation with , and he agrees that removing all the bad things from my diet could only help. Relieve the condition , also I read that one of the symptoms of gluten intolerance can be joint and muscle pain . So up to now all is good and it may not be the path for everyone , I will update again in another couple of weeks and let you all know if it’s still working for me . Wishing you all a pain free day 👍
Feeling good- nearly at Zero! Gluten free too
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Travel insurance?
Link to a recipe tip for a PMR Friendly Diet Snack for when the Pred Hunger bites , tried and tested and suprisingly tasty!
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