I have been on a Vegan diet for over 17 years. I have recently read that there is a direct correlation between Gluten and inflammation. Has anyone with PMR been on a Gluten Free diet and noticed any difference in their symptoms?
PMR and Gluten Free Foods: I have been on a Vegan... - PMRGCAuk
PMR and Gluten Free Foods
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RaisinBran
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Yes and No, 🤣 I eat no cereals at all, except high days and holidays in miniscule ammounts.
Depends on the person I expect. It didn’t stop me getting GCA. Had been gf for years prior to it.
I have been on gluten-free well over a year now. I can only say that when on two occasions, I accidentally had gluten in my meal I felt awful, as if I had been beaten around the shoulders and had to lie down. Whether it has made a difference I don't know what I would be like if I were still on gluten. I have tried sourdough bread recently and that seems to be okay and far tastier than a lot of gluten free bread that is available.
Gluten free bread is disgusting I agree, and full of sugars to make it acceptable. Its the yeast ' mother' in sourdough that modifies the gluten effect I have heard tell.
But it isn't gluten-free, just the gluten is modified in some way by the long slow rising process. Even my wheat allergy allowed me to eat French bread - because it is made properly, not with accelerators as in the UK commercial processes.
But to be fair - I have had excellent gluten-free bread in hotels over here, straight out of the oven. But they self-destruct in a few hours!
My daughter brought g/f bread with her at Christmas - can't remember whose it was but it was quite acceptable.
I have a daughter who has an intolerance to dairy. Considering it is only 6- 8000 years since adult humans have evolved tolerance to Lactose I am amazed so many people can digest it. I guess it gets less as you go East.
My granddaughter had exzema with milk as a toddler but seemed to outgrow it. Then at about 8 she developed asthma which steadily got worse until it was brittle and she was in the ED every few weeks. They didn;t expect her to survive her 20s. Then she decided to go veggie first and then vegan - and the asthma is now "normal". Her mother has also improved health conditions being vegan - and her autoimmune thyroid problems are far better gluten-free. She's also learning that the odd indiscretion eating gluten is punished!!!!
Don’t think sourdough is gf?
It isn't ...
PMRproAmbassador
I was on a gluten-free diet early in PMR as I have a wheat allery and g/f was the only way to go in the UK back then or diet was very boring. We have others who are coeliac and on a g/f diet. I don't think any of us have found it makes much difference to the PMR!
The general opinion from experts in the field of inflammation seems to be that for anyone who is not coeliac or has a wheat allergy, the risks of g/f in terms of missing nutrients must be taken into consideration.
Practically speaking, as the mother of a daughter who is vegan and now requires gluten-free, it does not make for easy catering or eating out!!!!!
Food on the 'go' when out and about must be super tricky; French snacks are almost all bread or pastry based. As for vegan as well.....impossible@
One of the local supermarkets here does a wonderful lentil salad to go and hummus and falafel or veggies aren't difficult to find. All restaurants pretty much have g/f pasta - with tomato sauce or garlic and oil. The pasta and cucina povera has its finer points!!!
Your average Norman might consider that to be animal fodder!
I'm sure they would!!!!
Thank you PMRPro
I must start keeping a food diary and figure out what my body does not like - makes my arthritic hands and feet worse. I guess I am lazy. Two of my siblings have coeliac's disease but I don't. My son cannot have dairy but he says when he is in Italy he can eat some dairy as it is so pure. (Makes me hungry thinking about Italy).
I avoid gluten. If I have a day where I eat white bread like bagels, croissants, and rolls, I have sore joints the next day. My daughter said the same thing happens to her.
Thank you
It may not however be the gluten per se - it could be wheat or it could be the simple carbs since you mention white bread. Many people find even mild carb overload makes them achey.
I try try to have porridge oats and oat crackers instead of wheat type cereals and bread on alternate days - worth a try?
I have been GF for over 10 years since my rheumatologist said gluten could have caused an autoimmune disease ( not PMR at that time) and even prescribed GF products. (My UCTD had followed a kidney / bladder infection and many strong courses of antibiotics which I reckon affected my gut). Giving up gluten improved my health enough to enable me to return to work after months off although eventually I had to retire early.
GF food has improved hugely with many restaurants now being aware ( Cote in UK my favourite). Bread I try to avoid but occasionally have (white) Warbutons Tiger Bloomer or Promise multigrain which I do like as well as some loaves from M&S. There is also GF sourdough. All expensive of course and not great for you but I indulge from time to time. Best to stick to Med diet, fruit, veg, fish, plants, nuts, some meat etc….which are happily all GF.
What I really miss is real French bread and croissants which are impossible GF!
( I also have autoimmune thyroid and Raynauds….so 4 autoimmune conditions to date. They seem to like me! Not been tested for coeliac).
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When I first had wheat problems, the local gut specialist said he wasn't sure it was worth the agony of 6-8 weeks full on wheat diet to confirm anything since I'd already identified diet as a management strategy and the prescribed stuff was awful in those days! Since my problem is wheat starch rather than gluten I do eat a few bread products here - sourdough is common and the baked goods are worth it! And now I'm on so much immunosuppressant stuff I don't even have to suffer the itch!!!!!
And believe it or not - gluten-free is actually quite easy in Italy! Mainly because they know what they are putting in their food and are happy to adapt. My village pizzeria does a mean g/f pizza and Nat always has one - vegan isn't a problem,
It was the same with me - rheumatologist said it was not worth eating gluten again for weeks before testing for coeliac as giving it up had clearly worked. And yes, Italy is great for GF - couldn’t believe they even had GF cornets for their delicious ice cream! So clued up compared to here. 🍦
I found that they are very clued up in Portugal too about gluten and celiacs. Most of the restaurants that I have eaten in there, know exactly what the score is and are able to offer alternatives. I love eating out in Portugal. In contrast to the slack jawed gormless look that I often get from restaurant staff in the UK when I ask if something is gluten free. And their solution is generally to just leave the gluten containing ingredients off the plate with no alternative, so you get half a meal. Of course, there are exceptions, but when I go out, I usually find that I am choosing the one item on the menu that I can eat, instead of being able to choose something that I would like to eat.
I love your bit about the Uk, it made me laugh, though sadly it's true. We went to Rome in 2022 and were amazed at the choice of GF food in restaurants, pasta pizzas and yes those lovely icecream cones and crepes. We ate so much as too good not to. The supermarkets had so many different pastas and cakes and cereals that our suitcases were a lot heavier coming home.
oh, how I would love to experience a deep pan pizza once again. Alas, it seems that g/f pizzas only come in the crispy flattened out variety.
You aren't likely to meet a pizza quiche here!!!!
lol is that what Italians call them?
What I call them!!! Horrible US invention ...
However - to be fair, there is a deep version made in a pan, thought to originate in the Turin region. see No 6 here:
eataly.ca/news/types-of-ita....
But it is more the same amount of dough that isn't rolled out as far so the edges are deeper and softer. This shows details of the shape
blog.giallozafferano.it/lot...
In my village pizzeria you can order a normal sized pizza and a smaller one - same amount of dough so the small one is thicker and has less topping - so is cheaper!
And then there is pinza romana - different mix of flours, oblong, deeper and softer but just as gorgeous ...
"the slack jawed gormless look that I often get from restaurant staff in the UK when I ask if something is gluten free"
You can say that again!!! In a local refuge here all the items on the menu are clearly labelled - but the waitress went through it dish by dish and went into the kitchen to speak to the cook to be sure about the soup. Nothing was too much trouble. We complimented the owner - his response "it is essential to do it and know about it". Can you imagine meeting that in the UK?
We used an Indian restaurant in a rather run-down corner of South London - they knew exactly what was g/f and no giving you half the advertised menu for the same price, substitutes were found for naans ...
A predominantly anti inflammatory diet, avoiding ultra processed foods, with moderate or no alcohol intake is recommended in many pmr-diet type books. To what extent it impacts inflammation is very much individualised but it cannot replace the short term effectiveness and power of steroids. But longer term as you wean yourself off steroids could be a healthy and prudent approach to avoid pmr recurring. Don’t think there are any downsides as long as it’s a balanced diet!
I can see no reason to go gluten free, unless you are celiac or non celiac gluten intolerant, which needs medical diagnosis. Some people have an intolerance/allergy to a specific grain and that one should be avoided, or if you are a fructose malabsorber, you may find that you cannot tolerate the fructans that are at the higher end of the scale. Other than that, I have an inherent mistrust of any nutritional advice that prompts people to cut out whole food groups for no particular reason. Having a varied diet is important to get all the micronutrients that you need and wholegrains are an important source of B vitamins, even more so, if you already are vegan.
I wouldn't worry too much about access to vegan and g/f foods though. Dining establishments and supermarkets seem to operate a killing two birds with one stone policy, so they very often double up the vegan option with the g/f option.
I think I am probably an undiagnosed celiac, as I cannot tolerate barley, wheat or rye, but I am also a fructose malabsorber and coincidentally, the high gluten foods are also high in fructans. Unfortunately, I had already stopped eating those before I was tested for celiac and I tested negative, so I am not 100% certain which causes the problem. Though I reacted to some pred that contained a tiny amount of wheat starch a while ago, so my money is on being an undiagnosed celiac. Therefore, I am not taking any chances as I do not want to prejudice my long term health by continuing to eat gluten, when I already know that I cannot tolerate those foods.
Of course, gluten causes an inflammatory response in celiacs, and this is also an autoimmune disease, but I don't know if there is any evidence to suggest that it causes inflammation in non celiacs. I have followed a g/f diet for the last 17 years and I can honestly say that it makes no difference to my PMR whatsoever. If I do get accidentally glutened, I get an extreme GI reaction, my skin breaks out and I do get an increase in muscle and joints aches, but I really do not believe that it has altered the course of my PMR.
That said, I do follow a loosely ant inflammatory diet, avoiding foods with added sugar, not overdoing alcohol, avoiding ultra processed foods and especially processed meats, also avoiding the seed oils and margarine; my diet is rich in oily fish, olive oil and green leafy veg. If you are vegan, you are probably following something close to that already, excluding the fish. If there is a food to avoid, I would say that it would be added sugar as sucrose. Our bodies don't really need it, especially if we have a propensity towards Type II diabetes and pred can do that, and sugar is recognised as having an inflammatory effect. I know for a fact personally that my aches and pains are aggravated when I have been on a bit of a binge fest.
Re comments on sour dough, traditional sour dough bread contains wheat. Whilst it tastes delicious, it is also more high calorie than ordinary bread. On the whole, the g/f breads that are also sour dough tend to be the ones that taste the best and they keep their shape best. The Schar one is tasty and is good for sandwiches, as it keeps its shape. However, g/f replacement foods are usually highly processed (just check the very long list of ingredients on the label) and they tend to be much higher in fat, sugar and salt than their conventional equivalents. So I generally avoid them, except out of necessity on isolated occasions, and focus on foods that are naturally g/f, or at a push, will try to make my own.
arthritis-health.com/types/...
medicalnewstoday.com/articl...
My gut guy years ago was an early proponent of leaky gut syndrome - and that is probably the link with things getting the other side of the gut wall, being identified and the immune system developing antibodies ...
The gluten free thing is an interesting one.Wheat free , lactose or dairy free , sugar free, nut and seed free and others are the same.
It all depends if you are intolerant or allergic to the food group or not as to whether it is actually responsible for increasing many of your symptoms, including inflammation.
If you have a confirmed allergy or intolerance, or gluten related health issue, removing the food group as a whole will definitely help, but it's a hard option to take if you don't have to.
If you don't have a problem with those food groups though , removing the food group isn't necessary and can have it's own problems.
It can make eating less simple and very costly. If you are on a low income being able to change to a Free From diet is cost prohibitive, especially as coping with a chronic illness involves so many other Self Care costs and might have reduced your ability to work.
Most importantly, many prescribed medications include lactose or gluten derivatives in their " packer " ( that's the non active ingredients in the pill ) ,or capsule, and so that can begin to cause absorption problems when you take important medication, or in finding one to take that doesn't give you an intolerance reaction , so going totally gluten or dairy free for good should only be done if it is Medically necessary.
In terms of general daily eating habits , if you suddenly decide to blow it , jump off the wagon and have a treat , rather than introducing the foods back very slowly as you should , you will feel awful.
You will get pain and stomach gripes , bowels going mad , even sweating and itching . Things which many people take as confirmation that they are intolerant, that choosing the Free From diet was right , because they felt so bad after that slice of cake or fish and chips.
When, in reality , it is just that your body and gut had stopped producing and releasing the enzymes required to digest those foods and so it reacts and complains badly with symptoms when someone suddenly eats a cake. It could cope with the right types of food with gluten or lactose , if it had been able to prepare for eating them again.
It's worth being tested for intolerances before just jumping into totally stopping any of the food groups as restriction for no medical reason can cause it's own health and financial issues.
See the GP, get the intolerance tests done , or get them done privately , or get advice from an NHS Dietitian on doing a FODMAP Elimination diet programme first.
If you can't get an appointment doing it using the NHS booklet guidelines for FODMAP systematically , this is important before just going Free From anything and beginning to confuse your gut biome.
But don't forget the important first step .
Don't try FODMAP or any Elimination Diet until you've spent a couple of months of eating a sensible healthy diet plan first , cutting out the rubbish , the processed sugar and artificial baddies , and reducing intake of your simple carbs and have seen whether that was enough , or if you still had bad obvious symptoms related to when you eat .
If you aren't allergic or intolerant shown by tests , it is worth eating smaller portions of healthier items that include things like gluten , lactose , dairy , wheat , yeast , various natural sugars , yeast etc. to maintain the guts ability to work effectively.
One thing many people don't realise when they get the benefits of going gluten or dairy free, but they aren't intolerant , is that it felt good not because those food groups were the culprit of the inflammation, and needed a removal of a whole group , but that it was the type of foods that end up being excluded from our daily diets by going gluten free or dairy free that were the real cause of the problem.
When you cut out foods with gluten or dairy you happen to stop eating most of the foods that contain more processed sugar, saturated fats , simple carbohydrates and artificial sweeteners , like bread , pasta , cakes , biscuits , processed cereals , chocolate , sweets , ready meals, pies , sugary desserts even things like processed meats such as burgers , sausages , tinned soups and sauces and many types of alcohol. All harbingers of excess salt, sugars , additives and saturated fat.
By getting rid of the gluten or dairy you are basically forced to eat a more sensible diet eliminating too much sugar and bad fats ( and bigger portions of simple carbs because of cost) which in most people whom try Free From diets are the real culprits for causing extra pain , inflammation, skin problems , diabetes and gut problems.
I also have Digestive illnesses, including diagnosed Pancreatic Enzyme Insufficiency ( for which I have to take prescribed supplements) , Neuro Gut Dysmotility, IBS-C , Familial HyperCholesteroleimia , Recurring Pancreatitis and Diverticulitis and Vitamin B 12 Deficiency Anaemia and Folate Deficiency and EDS ( the last three makes a plant based diet inappropriate for my needs too).
I have to be very careful with my diet and over the decades I've had to adjust my already healthy diet dependent on what was going on.
Testing , however, has shown I have none of the gluten related illnesses , I am not gluten , wheat , yeast , nut, dairy or lactose intolerant .
I can eat these food groups , the groups themselves are not the issue, but I need to be sensible with my choices of foods in those food groups for other reasons , many for the same reasons as everyone else , even though I also require prescribed enzymes and probiotics to absorb foods.
So , as I began , it's interesting , but the reason for feeling your health improving from going Gluten Free or Free From may not be because you'd got rid of the gluten.
Take care , Bee
I was dx with PMR in 2019. In 2021 I started having GI symptoms and in 2022 I was dx celiac and with colitis. Going gluten free has bot helped my PMR at all. However, my GI doc was surprised that the higher doses of prednisone did not help the colitis.
I was diagnosed with coeliac disease 4 years after being diagnosed with PMR. The gluten free diet has not affected my PMR symptoms or management except on one occasion. I got severely glutened a few years ago and was very ill for 3 days with gastro issues and terrible muscle and joint pain, resulting in a PMR flare.
I'd been mostly gluten-free for about five years before being diagnosed with PMR, so I'm not sure there's a direct connection. However, I do continue to avoid gluten as much as possible, even though most gluten-free breads are awful. A friend gave me a gluten-free cookbook for Christmas and there are some bread recipes in it that look good, but I haven't tried them yet.
I find the biggest difference for me when it comes to lessening inflammation has been cutting down on sugar and salt. Minimizing sugar has especially made a difference, and has so far made it easier for me to start tapering my prednisone dose, when formerly I wasn't having any success at tapering.
Also...I have read that it may not necessarily be the gluten in wheat products that causes people problems, but the overuse of glyphosate on grain crops such as wheat. These pesticides/herbicides are used indiscriminately here in North America, which may be why some people find they are okay eating bread products in some European countries. Just a theory!
The rise in gluten intolerance amongst the general population has also been linked with the high gluten strong flours that are used in commercial bakery nowadays. Presumably, it helps mass production of goods and their transport and distribution, since it is the gluten that provides the elasticity to wheat containing products.
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