Pain free and Gluten Free

I've had PMR for almost three years. Starting at 30 mg pred., I've been up and down with many flares during that time. There have been some really miserable days. I am now at 4 mg. Although I wasn't feeling badly, my numbers were not good the last time I was at my rheumatologist. Both my sedimentation rate and C-reactive protein were at the same place they were when I began. Frustrated, I decided I would experiment and went on a wheat free and processed food free diet. I felt no change the first week, but soon after, I woke up with zero pain in my neck and shoulders. It's been a month now and I still am pain free. I am dumbfounded, as I always thought the gluten free craze here in the states was bogus. I'm anxious to get my blood tested again. I'm really not sure this diet has worked or the disease is finally waning and it's just a coincidence. It's really not a difficult diet, I substituted rice cakes for bread and look for snacks made without wheat. I'm curious to know if anyone else has had a similar experience.

28 Replies

  • Hello. It may well be connected in as much as anything that reduces inflammation in the body is good generally. If gluten upsets you it'll have an effect. There is a world of difference between coeliac and intolerance and allergy. Might be worth getting tested if you can, though for a coeliac test, you need to be eating gluten for a good six weeks prior to the blood test. If you weren't getting gut problems, you probably don't have it, but there are always execeptions. The lack of processed food will also have helped reduce the burden.

    I was gluten free before all this because I went on it to support my daughter who was diagnosed with a severe intolerance. My health changed in two weeks. No more sinusitis, niggling gut problems, lack of energy and bad breath. Be careful that you aren't eating too many high GI foods with not much nutrition just because they are gluten free and deemed 'good'. Rice cakes are a good vehicle for other foods but not a great source of carbohydrate. Gluten free bread has come a long way in the last few years and is no longer the sad, crumbly, tasteless mouthful of misery it used to be. Some of it is fortified with vitamins like regular bread too.

  • Thank you for the good information. A few years ago I tasted some gluten free pizza offered by a friend at a restaurant. It was horrible and now I've been shunning gluten free bread and other products, maybe now they've improved.

  • Pizzas are still catching up I'm afraid. Gluten is jolly good at what it does. The base is usually like a Frisbee. For some reason the makers seem to think that because you are having a sub-standard base, they can give you rubbish topping as well. In the the U.K. the main supermarkets are really trying hard but pizza eludes them so you're better off making your own. Pastry is catching up also but tends to be very oily to make up for that wonderful stuff, gluten, and again fillings are unnecessarily poor quality. Anyway, things are definitely changing for the better, in the UK at least.

  • Snazzy - don't agree about g/f bread, most of it is still disgusting! I order g/f on planes and the German and US g/f breads are worse than cardboard! Finnish g/f bread was OK mind you! Here in Italy it is easy to find g/f pizza - many pizzerias offer it and you can't really tell the difference, the toppings are identical and the base isn't too bad, bit salty for my taste usually. One of the biggest manufacturers of g/f food is about 70 km from me and some of their products are good, others are awful. Coeliac disorder is very common here - like in Ireland, wheat arrived late in the mountains!

  • I agree! It's all relative, GC is still very sad in the grand scheme of things. My daughter and I longlingly sniff at fresh buttered baguette when the rest of the family have inhumanely brought one into the house.

    When we were in Rome for the first time ever last year, we couldn't find any GF pizza or bread. Our hotel was World of Wheat in the morning. Any tips for our return (hopefully!) next Aug?

  • Tell them in advance when you book - most hotels are usually good about special diets and even in the backstreets of Rome they will usually have gluten-free pasta if you ask, or so I'm told. I admit it is probably easier up here where I live because coeliac is quite common here, as is lactose intolerance. I have had very good gluten-free rolls in Austria - in Obergurgl of all places - straight from the oven you couldn't complain at all! They didn't keep well though, not even until lunchtime :-(

    Nowadays I have it easy - the problem for me is modern highly commercialised wheat and both kamut and spelt bread rolls, which I can eat, are easily available here. In fact - the village bakery also makes gluten-free bread and it is now on the shelves all the time. Maybe you need to come to our end of Italy...

  • Ah yes, a good method to slip gluten free under the radar..fresh from the oven.

  • I was eating gluten-free when my PMR first started and I now eat wheat-free (I'm allergic to something in the structure of wheat starch, gluten isn't a problem). Occasionally I decide it is worth itching for and eat a bit of wheat-containing food but it makes little difference to my PMR. I think it is likely the allergy is actually part of the autoimmune disorder since it and the first signs of PMR appeared at a similar time.

    However - it might be worth asking your doctor whether it is possible you do have coeliac disease as one of the symptoms can be PMR-like pain and often the gut symptoms arrive relatively late or even never if it is mild. As Snazzy says, to be diagnosed you would have to eat gluten-containing food for 6 to 8 weeks before testing and I decided it wasn't worth it as it takes a couple of months to clear my system - that meant 4 months at least of awful itching! The local coeliac specialist at the time agreed it probably wasn't worth it because all you can do is adjust your diet and the only benefit in the UK then would have been I could have had g/f food on prescription. I find it easier to just avoid processed foods altogether - wheat gets EVERYWHERE - and of course that also removes all junk food and a lot of sugar from my diet.

    For most people the gluten-free fad as advertised in the USA is rubbish - if you avoid the gluten-free products in the shops it will improve your diet but if you eat them they are even more calorie-dense than ordinary junk food and have tons of sugar in them! So the likelihood of weight loss is small, it certainly isn't healthy and it costs a fortune!

  • Maybe not for long! Our cash strapped NHS is considering removing gluten free things from prescription. We never qualified with intolerance but from what I've seen, the products on prescription are still the the carpet tile league.

  • I know - saw that. I think they have a point in some ways as most of my g/f friends said the stuff you got on script was awful! Gluten-free pasta here is not significantly more expensive than good quality pasta - far more than the cheapest budget stuff though. It is people on low incomes I feel sorry for. But I find my diet far healthier by removing all the junk carbs.

    I take it you have discovered Nairns g/f oatcakes? Is it gluten that is your problem or wheat? I reacted to g/f rolls made with Juvela mix - made awfully convincing bread but it contains washed wheat starch. That was when I realised it wasn't gluten per se but wheat specifically and fairly obviously the starch. It does make life a lot simpler now but I still haven't got into the habit of eating more carbs - they are a decided treat.

  • Sadly oats is as bad as wheat/barley for me. My body reacts more strongly now that it isn't in my diet whereas before it was a chronic situation. Not tried any other grains. As I've got older I've gone away from from carbs naturally because I just don't feel as good with them unless exercising hard, also my blood sugars dip later anyway. Sometimes I do just love a pile of chips in paper with salt and vinegar or a piece of cake with a cup of tea.

  • Sorry, I thought you said gluten-free, not grain free.

  • Ah, depends on what you mean by grain. I mean wheat, barley, semolina, oats grains. Anything that containing gluten seems to do the trick.

  • The oatcakes I mentioned are GLUTEN-FREE - Nairns are very helpful like that!!!!

  • I'll give them a whirl. It would be nice to have something different.

  • The best thing is - they taste EXACTLY the same as ordinary oatcakes...

  • Hi SnazzyD,

    I have Coeliac Disease and have had PMR for 7 years, with the ups and downs and flares over that time esp. following a total knee replacement last year.

    GF bread is definitely better now than a few years ago and in Australia we don't get prescriptions for gf products and the gf items are more expensive of course

    I see you mention chips with vinegar. That's the hardest part is the 'hidden' gluten as in vinegar. You probably already know about hidden gluten in sauces, gravies etc. I was interested re the Irish connection with Coeliac as both sets of great grandparents were Irish!

    If you are able to get onto the Coeliac Society website they have excellent info If you ever holiday in Australia, Coles and Woolworths supermarkets have extensive range of gf foods that (mostly) are made in Australia keeping the costs down a bit.

    I am a bread-a-holic! Unfortunately have discovered a wholemeal gf bread that tastes really good..... (not good for me though!)

  • So far I'm feeling good and I'm not going to upset the apple cart. I avoid the gluten free processed products, I agree they are calorie dense and highly processed. If I need an evil snack, I just get some potato chips (or crisps) which naturally have no gluten. I see the rheumatologist in a month or so and then it will be interesting to see if this diet has affected my numbers.

  • Hi jacroth1 I've been on ginger and orange for over a year. I take about 2 oz root ginger blend it in orange, I feel it keeps down the inflammation and CRP and ESR are down, now not pain free,

    I was diagnosed over 2 year ago with PMR and then went on to get GCA,

    But started off with pain in neck and then in thighs, Still have some pain in neck and thighs but not as bad as day goes on, but don't think we are ever pain free.

    I do have a good diet, although what's a good diet anymore, we'll eat fish twice a week, vegetables, fruit, try not to eat processed foods

    But do find when I stay off carbs, sugar my pain is not as bad, just find it hard to stay away from sugar, carbs,. As I do like a glass of red wine. And it's always someone birthday so birthday cakes😂

    But when Easter is over, I'm going to try and stay away from sugar,carbs and just test it out.

    It's certainly interesting about wheat free and gluten free diet, might give it a try, take care

  • I have read that one must be very careful on a "gluten free" diet because they sneak other things into the recipe and more people are turning up with type 2 diabetes who are "winging it" on a gluten free diet. I have read that the medical field is pushing more for the Meditteranean diet instead. (Of course - no grains or pasta involved). I am not doing either of the two, but this is just what I have read recently. (I am tempted to take this leap of faith however and do the meditteranean diet!).

  • My advice is that traveling in Italy , i found the gluten free in drug stores. Schar is a good brand . Also gluten free pasta is quite good. Tinkyada Brown rice pasta is delicous. I have been gluten free for about ten years and it has come a long way, i become annoyed when people ... even doctors dismiss it as a craze. . I have two grandsons with celiac disease. It iis not a joke.( unfortunatly... it does not involve any drugs...,!oh my god.... i can't just write a prescription. ) I do admit the pizza has not been terrific😮 Thanks for letting me vent on the issue. Give it up.... what have you got to lose ?

  • Gluten-free is easily available in the shops - but that doesn't help at breakfast in a hotel!!! Schar actually make a lot of the g/f food sold under other labels too.

  • It was five years ago that i was in Italy and found it in Rome in the drugstore. If i ever get back i am glad it will be easier ro find. 😌

  • One more thing about the prednisone absorption or not I should say . I was blaming it on the antibiotic and yogurt but wonder if it could have been the Manuka honey that I was putting in my tea in the morning. I was using the Plus 24 version . It stopped my heartburn but maybe my absorption ?.

  • Very interesting. I have just been through a rise in inflammatory markers without pain. My Rheumy's put me back to 20mg, up from 14. In one week I am down to good numbers again

    Now I'll have to think back to whether I had slipped from my low carb diet more than I realized. I sometimes have felt that sugar has affected my pain status. Last night I had some prunes, for medicinal reasons. Just 3, but that is more sugar at one time than I've had since my dx last Dec. . Maybe could coincience, but felt a bit more tender today. Will watch both.

  • Hi Hindags I do find I have more pain, when I have sugar, carbs, I would like to go on a complete sugar free diet, but find it hard as I have a sweet tooth😀

  • It's is, as is always the case, the start that is hardest. After about 6 weeks all your taste buds have changed and if the new ones haven't experienced sugar - they will not only not miss it, they will positively dislike it!

  • Yes I know your right, I had stayed off sugar when I was on the high dose 80mg, I was so afraid I would lose my sight. I went on strict diet, I think the fear took away my sweet tooth, first few days are hardest, thanks

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