Cab you help me out please? My brother is absolutely convinced that something I'm eating, if not the cause of the PMR, is certainly making it worse. I'm happy he is interested but I'm slightly less convinced than him.
I barely drink alcohol as that causes more pain. I eat in a low carb way as sugar causes more pain as well. Gluten doesn't seem to have any affect and i make a low carb bread for when i want a sandwich. Otherwise i eat meat and veg, yoghurt and berries, dairy, cheese etc. No root veg or potatoes, rice, pasta or bread.
All of the literature I have read on food testing suggests it's not worth the paper it's written on. I would be keen to know what you all think. 😊
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Our nearest and dearest do sometimes want to find solutions for us. You seem to be well aware of what makes you feel worse. My daughter was very alarmed about my being on steroids at first. I actually find that gluten has a detrimental effect on my digestive system and weight.
I know you’re not asking me but if I eat gluten it takes 2-4 hours and then I feel a bit sick and like my meal has sat heavy. Then my gut just stops and I have to wait hours or a day for it to start moving again. Next few days I’ll have either constipation or lose still or both. Heavy gluten flours like in bread is much worse than a bit of sponge cake. Before I stopped gluten I was generally below par all the time and got two bouts of severe sinusitis a year without fail. I always had a not bad but not particularly happy gut all the time and after my lunch time sandwich I looked like I would give birth.
Bless them - they are all so sure they know what will help!! But any testing you see on the internet definitely isn't worth the paper it would be printed on - almost all woo.
Proper allergy testing in a hospital might show something up - but then again, it might not. I have an allergy to something in the structure of modern wheat starch - it doesn't show up on testing. I also have a really violent reaction to SOMETHING, possibly quite specific histamines in certain heavy red wines but it also happens very very occasionally in response to herbal schnapps. I had testing done, nothing - and the immunologist said we could test everything they had available and still not identify what it is. She said to take antihistamines before drinking red wine! I had managed to work out both of them in general - and avoid them. I also discovered that the violent one can be averted if I take a couple of loratidine immediately when I wake with the recognisable signs and symptoms.
I think it works better (and cheaper) to keep a food diary with notes of responses/how you feel. If you identify something that obviously makes you feel less good then don't eat it. Everyone is different but carbs tend to be a culprit in the form of baked goods or sugar - loads of people identify feeling decidely worse after a birthday party/xmas/other party where they thought "just this once".
Yes spot on, everyone has an opinion on how to help don't they. Sometimes useful but generally not!
Thanks for the confirmation on food testing which confirmed my thoughts. I won't waste any money on it. It would just be really helpful to try and identify the stuff that might cause a delayed reaction. Like you and red wine, I know when I've drunk any alcohol. Sugar tends not to be an immediate reaction but I absolutely feel better for not eating it.
I'm glad you have identified and can manage your reactions to a certain degree because these things just add to the misery of PMR!
I'm having a flare up now after Christmas - feel shocking today even though I've been very strict diet wise for the last 2 weeks.
Funny, there is a general "I feel rubbish" moan going on on another forum! Must be the weather and the time of year - although one of us lives somewhere it can't be the weather!!!!
Nothing like a misbehaving, non-visible, long term condition to make people exasperated and dish out quick fixes. Yep, that’s what you need, a jog round the block , cut out certain foods and have a positive attitude and the job’s a goodun! I think that if it were that easy, cutting out foods would be the panacea for all. I was gluten free, almost dairy free and ate a very healthy diet but still got GCA. I do think a bad diet has a lot to answer for but I don’t think it is any one thing most of the time that causes us to get ill. I don’t think cutting out sausages will negate psychosocial aspects like unrelenting stress. If I were to pick out one food stuff that does seem to have an obvious deleterious effect and that’s sugar.
Exactly and well said! I am in complete agreement. Sugar is the root of all evil however everything else in balance u less you have a bad reaction to it.
I've read widely on the subject of food intolerances and concluded lab testing has no scientific basis and isn't worth the paper it's written on. It might give you a long list of things it suggests you are intolerant to but a better way is to find out for yourself. Although it is worth getting your GP to do allergy tests for things like coeliac, mixed nuts, egg etc. You need to find out what your own sensitivities are by doing some kind of elimination diet. I went back to basics, at something simple I knew I didn't react to, I think it was chicken, potato and broccoli. Then I added things in one by one, and only changing one thing at a time, and kept a food and reactions diary. Some people start by going through the FODMAP list. I went through the things I ate regularly, as there is some evidence that you develop intolerances to things you consume often. Once I had realised all the things things that gave me a reaction I started trying to find out why. There are many possibilities, some people are sensitive to histamine, sulphites, salycylates, tree fruit, oxylates. These are not technically allergies but your body does think of them as invaders and sends out an inflammatory repsonse to deal with what it thinks are trying to harm it, in the same way it would treat a bee or nettle sting for example. My rheumatologist says she has come across these 'allergies' in other patients and thinks it might be something to do with the immune system that has gone into overdrive, perhaps something to do with rogueT-cells. I also get a reaction to all sorts of medication, including most Pred tablets. Anti-histamines don't prevent the reaction from happening, they just slightly dampen the effects on various receptors spread around the body. There is an Australian book on how to do your own elimination diet, I will try and find the link. But even if you discover you have intolerances, there is very little you can do about it, there are no treatment options and very few doctors who know anything about it. You are more likely to find an ignorant doctor who will at best dismiss your concerns or actually do you more harm than good, for example the chief Immunologist in Leeds doesn't believe in histamine intolerance or MCAS, though some of his registrars are more sympathetic. And that despite rheumatologists referring people like me to him because they have seen patterns in ther patients. I'm actually becoming more and more convinced that the fatigue we get in PMR is caused at least in part by food intolerances and reactions that flood the body with chemicals such as histamine when mast cells over-activate and degranulate. The immune system is so unbelievably complex, we don't even really know what causes PMR even.
Our local coeliac specialist had a theory it was to do with leaky gut syndrome - which in those days was still being regarded with great scepticism. I hadn't been diagnosed with PMR at the time but I probably had got symptoms of it and the atrial fibrillation - all thought to be connected.
I can also believe it is connected to leaky gut, or at least something that has gone wrong with the gut biome. I think in my case, that might have been brought on on in 2017 when I was given repeated prescriptions over 6 months for antibiotics for what I was told was parotitis (infection in the saliva glands) and cellulitis in my leg. I took things into my own hands and got my dentist to refer me to the dental hospital as I thought I might have Sjogrens, and eventually found out I had a saliva stone stuck in there that was causing the pain, whihc they flushed out. But I think meanwhile the abx caused problems in the gut by wiping out all the good stuff and leaving me with c.dif etc. I am now trying to find out where I can get my gut microbes tested in the UK, it is such a new thing I don't know who to trust. My GP is clueless of course, they know nothing about such things. I might ask for a referral to a gastro-enterologist when all this Covid business is over, as some foods do cause gut problems eg beef, fish if not cooked from frozen. It's got to the stage now where I even react to water, I can only have certain types of bottled water, and the reactions are part of why I am so ill at the moment with a relapse of PMR. I am really struggling.
A very good gut guy in Gateshead recommended VSL#3 to a friend after she had had gall bladder surgery that they made something of a mess of, used large amounts of abx and she developed the most horrendous thrush which the nurse missed while she was still in. It isn't the cheapest probiotic available - OTOH, it works very well. He apologised he couldn't prescribe it on the NHS.
I've been taking some probiotics but I'm told by a friend who is a kind of nutritionist that need to have a microbe analysis done first to find out what I am lacking and what I already have enough of. It's such a new area I don't know who does reliable testing, but my friend is trying to find out for me. She used to run a colonic irrigation clinic in Milton Keynes (and did very well out of it) so is a bit of a poo geek - but her name isn't Gillian McKeith!
I've never fancied having my colon washed out but might have tried it if I'd been nearer her in Milton Keynes. My mission now is to do what I can for my gut with probiotics, fasting, whatever, I need to do more research, it may just help, who knows. part of the problem is I can't eat things that are good for your guts as they are all high histamine eg pickles, kimchi, yoghurt, but I am looking into pre-biotics to add to pro-biotics and might even give aloe vera a go, some people swear by it.
It seems VSL#3 isn't available any more. I take one called Optibac which is OK and hopefully doing me some good and but another one called Probiota HistaminX which is supposed to be for people with histamine intolerance upsets my stomach and guts so that was a waste of £30. I'll wait and see what the biome testing shows before buying anything else.
It also seems more than co-incidence that there are many of us on here who have developed intolerances and that rheumatologists such as Dr Mackie often come across rheumatology patients with this problem
I agree. In that respect I do agree with my brother it's just the science isn't quite there yet is it.
The gut testing thing was covered on one of those BBC documentaries but i can't rember for the life of me which one. That might give some pointers if you can find it.
I hope things settle down for you, it must be so difficult
I've found a company that does gut microbiome testing, recommended by a fellow PMR sufferer who found it useful, Chuckling goat, so am going to do it and see what it says. There is another UK lab called Atlas, I might actually invest in both and see if they say the same things,even though it's a bit of an investment, one is £130 and the other £150
Oh good stuff. I've heard of chuckling goat, they make me for don't they? Never knew they did stuff like testing too.
Sometimes I think money in the bank is no good if you can use it for better health. Let us know how you get on. We need a full update in the Ilkley group!
You're right about investing in health. it'll be more useful to compare 2 different reports and see if they say the same thing and if not I'll demand my money back! I'm still undecided whether to invest in aloe vera too!
My current thoughts are that it is not so much the individual foods at fault, my body has now gone so autoimmune it is sending out an inflammatory response to everything, like 'friendly fire' from a confused immune system that thinks it is constantly under attack from things it thinks are trying to harm it so it is ramping up the inflammation response as a protective mechanism. Just my theory, well a theory I have read about in books such as the Autoimmune solution by Amy Myers.
Funny you should say that about reset, I'm on Day one of a proposed 3-day total, water-only fast to see if that helps . Would have been day 2 now had I not succumbed to eating like a locust at 10pm last night - I wasn't physically hungry it was just some kind of emotional or boredom thing. Hopefully can summon more willpower today, the first 24 hours are hard.
I don't have AF but some things do give me a racing heart, food additives generally and Pringles in particular! Oh and gin and tonic but it could be the gin, tonic or lemon as they are all triggers. The same things that cause an overactive bladder. Interestingly, all the things listed in the IC or Interstitial Cystitis diet. My bladder problems have all instantly cleared up since being on high-dose Pred
I knew you would have researched this too. Thanks for the confirmation of what I was thinking. It's so very complicated.
My coeliac test was negative but ive not been tested for anything else. Food diaries and elimination maybe. I would probably start with dairy or eggs. Having said that I ate nuts last night and feel crap today. Food diary needed me thinks.
Get an A5 diary or notebook, two columns, one side everything you eat, other column any reactions or symptoms even if delayed, that way you can look for patterns. For example if I get gut reactions to something it is usually about 5 hours later, where as other things I react to in less than a minute (face flush, neck swell, dizziness). The strangest thing is the sudden overwhelming fatigue as if I've been drugged, it's almost like narcolopsy.
My problem wasn't gluten per se - it is the wheat starch. I even reacted to Juvela's gluten-free flour which is made with washed wheat starch so the gluten is chemically removed. But I can eat other gluten-containing grains.
My favourite quick fix was my dear friend who, when I was going screwy with high dose Pred, kept insisting she run me down to the coast in her open top Bentley to snap me out of it. Didn’t know whether to laugh or shove a kipper in the air blowers!
In normal circumstances but not when you can’t focus properly, have raging insomnia, chaotic brain and feel weak as a kitten with someone who believed I just needed a push to get going.
Wow a trip to the coast in a convertible sounds a great idea! I've just been out for a walk in the snow and that did me good - and I think Coffeebeans does wild outdoor swimming!
I would have loved a walk in our snow - but the thought of the ice hiding under last nights skith of new snow that they adjudged wasn't enough to be worth clearing was a bit off-putting ...
Slightly off topic but this is my first day working from home during this lockdown and I’ve noticed that my neighbours have built a big snowman in their garden. They’re a couple in their late 60s who live very quietly by themselves. For some reason I feel quite uplifted by it! ⛄️
I noticed something similar here while walking back to the car from a hospital appointment: someone had built a big snowperson on a bench by the side of the road! It was so welll done it had to be by an adult - we have a very high proportion of artists around here. It was like those big rounded cuddly statues - who was it did them? Sat there with crossed legs and a pipe in its mouth I think.
How lovely. You always wonder who has taken the time to do something like that. I wonder if they live nearby and were watching people's reactions to it?
I'm good at noticing the things that give an immediate or marked response but I would like to pin down anything that that have a delayed response. Food diary out me thinks.
I’m intolerant of sugar and didn’t know it. I love naval oranges and ate them daily - used to take one sugar in my tea/coffee. Saw a dietitian who identified sugar as the culprit for chronic diarrhoea with acute groin pain - stopped the fruit and additional sugar - alleviated that particular problem. I now have more issues that I don’t know the cause of.
I’m waiting for allergy testing because of chronic skin problems that no longer respond to treatments that have always worked.
Currently toggling with antibiotics for a UTI - last antibiotic felt as if it was working- third day all hell let lose when symptoms returned as if I hadn’t been on treatment.
I’m not holding my breath that the allergy testing will show anything. I’ve never been the same since starting pred but it saved my eye sight when diagnosed with GCA. PMR followed.
I used to keep a food diary - just need to be patient but it is worth it. I react to an A4 sheet of foodstuffs. I had my tonsils out at 41 being told that it might not be the answer and probably suffering from allergies. They were right after giving me full cream milk on cereals.....never again. I went privately to a homeopath and learned a lot but eventually exhausted all working treatments. I reacted to acupuncture.
My GP says I’m complicated and prefers me to tell him what treatment I need! I know my body better than anyone else but what I wouldn’t give for someone to help.
In the context of PMR cause, probably useless, especially for someone who appears to be consuming a healthy not too processed diet However an acquaintance of mine was very troubled with itchy skin, quite troublesome, and nothing the doctors tried helped. Eventually her huband, who was in computers, worked out a way to track everything she ate and they discovered the culprit was cinnamon - an ingredient in a herbal tisane she was drinking regularly!
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Wish me luck! 
Pred: Hunger/appetite change. Early days, do things get better
Microbiome Community in overdrive! Read on if you're a fan of Tim Specter and Mary Berry!! And be warned......
