Did you change your way of preparing and eating food?

I wonder, as so many of you live with GCA/PMR for a longer period of time, how this influenced your way to nourish your body?

Did you change the food you eat? Did you have success? Do you believe food can make a difference?

It would be great if you would share your experience with me, thanks. Monika

I had a good day today...

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  • Hello Akino, this is the first time I have spoken to you so welcome. This is such an amazing forum, it has and still is a lifeline for me at every stage of this journey. As to your question about food here are the things that have helped me. I always eat three meals a day though they are quite small. I don't eat cakes biscuits potatoes white bread or white pasta and very few root vegetables. I do have a round of whole meal bread a day which makes my snack meal a little easier. I am very nervous of getting type 2 diabetes on prednisolone but am a little underweight so I do have a few almonds to make up the difference from not having the carbohydrates. My treats are a small bowl of yogurt with a teaspoon of honey from our own bees. I am very lucky that I don't seem to have the munchies like some people which means I have been able to exercise albeit gently right through my 9 months with Polymyalgia. Hope this helps.

  • Yes, it does. And thank you for welcoming me!

  • Hi Akino,

    I have always eaten well, cooked from scratch and loved my food. In the year I have been on prednisolone I have gained a stone in weight. So last Thursday on my return from a foodie holiday in South Africa I decided to REALLY do low carb. So no sugar (which I rarely have) bread(also rare for me) wraps, pasta, rice, potatoes . I was having a smoothie most days...no more! . Now I have one piece of fruit a few times a week. No fruit juice. Very few root vegetables, and I have lost 5 1/2 lbs in 8 days!!!

    Before pred I found the 5:2 diet worked very well for me. I continued to do that for a year, but in that time gained a stone.

    As to how I cook, ......since being very low carb I have not been thinking about low fat at all. I have been using butter, eating fat on meat. I understand from Michael Mosley book on blood sugar that we need dat to give us energy instead of the carbs.

    Hope this helps. Good luck.

  • Mary63. I agree with you about the fat. I don't go mad but do eat more fat than I used to.

  • I cut carbs drastically eventually, I didn't really eat a lot anyway, but it is the only way I can lose the pred weight I had gained.

    I tried leaving out all sorts of things - gluten, nightshade vegetables, alcohol. Nothing I tried made any noticeable difference - even before pred. Only reducing carbs drastically changed anything, then I lost weight.

    What Mary63 says applies to me too.

  • Thank you all for answering.

    There seems to be a common denominator and that seems to be low carb diet. Mostly because of the weight gain that can happen with Prednisone.

    I wonder also about how your diet can help to fight inflammation.

    I probably need to explain this some more. As I'm German I watch German TV on my iPad. There is this great series named: Die Ernaehrungs-Docs. 'The diet-docs'. They get in touch with people who suffer from all kinds of illnesses. Last time there was a patient who fighted Morbus Bechterew, lots of pain involved, insomnia, stiffness. And what they made him eat/ drink was oils, cashew nuts etc. I noticed that in quite a few of the cases they made the patient have more oil, like flax seed oil, hemp, walnut, olive oil. Together with yoghurt or quark for breakfast etc. After five month on this different diet always all of the patients are almost 100% symptom free, can reduce medication and live a better life.

    They also have a website with recipes for specific illnesses and it would be easy to incorporate this into our way of eating.

    I'm so impressed by the results every time a watch a new episode. I thought it worth it to share with you.

    Enjoy your day, Monika

  • Oooh - what's that on? Must have a look - German TV is the bulk of our offer in South Tirol but I usually give up in disgust except for the medical programmes but i haven't found that one! Though - I know Germans are very "in" to diat Kur - but 100% symptom-free? In your dreams!!!

    The low carb diet will also have an anti-inflammatory effect - omitting sugar of all sorts as much as possible.

  • I know it sounds unreal, but have a look and judge later:

    ardmediathek.de/tv/Die-Ernährungs-Docs/Morbus-Bechterew-lindern-mit-Ölen-und-An/NDR-Fernsehen/Video?bcastId=26111552&documentId=40707828

  • Ah - NDR, I LOVE their medical programme! When I remember to switch to it that is...

  • Let me know what you think. This could be helpful for many of us. Hope you'll find the time to watch it.

  • Hello PMRpro... if the German programme is helpful, could you translate it for us please???

  • 'Fraid not - it's coming up as no longer available. Unless it is restricted to Germany on catch-up. You can watch German TV all over the world live, but not always from the archives and most of the catch-up stuff is only available for a week.

  • That's too bad. I actually use a Virtual Private Network software to simulate I'm in Germany for the Geo -Block they have some times.

    Here is another link:

    ndr.de/fernsehen/sendungen/...

    Go down a little and there is the Episode 16 video and others, but 16 is about Morbus Bechterew.

    I tested it and the video works! Hope you'll succeed. Let me know.

  • I've just found it on YouTube and already watched it.

    Apart from the fact it would take several hours to transcribe and translate I don't really think it would say much - not enough to make it worth it, I don't love you all that much!

    I'm not entirely convinced I have to say - and I do wonder how long people would stick to it! There is NO sugar at all and total carbs is under 30g per day. That isn't very much at all. That is what I have to do to lose weight so I do know what it means!

    Basically though, they advise oily fish, ginger, cinnamon, turmeric, cashew nut milk, and assorted seeds and "good" oils. They restrict meat to poultry a couple of times a week, no beef, no pork. The diet seemed very preparation intensive and pretty expensive to me. I think there is something about the diet online - so I will try to find it.

    But above all - it is a completely different illness from PMR (ankylosing spondylitis) and one which a lot of exercise helps. the subject was achieving 20,000 steps a day! It is an inflammatory arthritis and not a vasculitis. I do appreciate the concept of the antiinflammatory diet and the things they recommend are the same things we often mention on the forums - plus a load more.

  • Yes, that's all correct and I agree. But this guy choose to go so low in carbs etc. And yes, it's not Vasculitis, but still it's inflammatory and it does change things. And yes, we don't really know the details about the food intake on a daily base and how expensive it can get, or how much time you have to put in to it.

    For me it is more about being open to the concept that food can be medication. And considered how many here suffer so much because of PMR in my opinion it's worth to have a closer look.

    The patients in this TV -show have to write down what they eat for I don't know how long, maybe a week.

    They meet with the doctors and together they develope the new nourishment regiment and exercise if necessary. This could be done via Skype, if someone really wants to get help from them.

    Thanks that you took the time. have a great weekend!

  • I think a lot of us do accept the concept that food is important - many of us include/exclude things on the basis it makes a difference to us. What I struggled with in this programme was the lack of depth - and there was no basis for the food choices. I know - it was only 14 mins, you can't include a lot in that time!

    Thank you for telling us - I shall go back and watch some of the other programmes from the same series.

  • I have just read this item:

    todaysdietitian.com/newarch...

  • Like it all - especially like this bit:

    "In a study published August 15, 2006, in the Journal of the American College of Cardiology, researchers found that diets high in refined starches, sugar, saturated fats, and trans fats and low in fruits, vegetables, whole grains, and omega-3 fatty acids appeared to turn on the inflammatory response. However, a diet rich in whole foods, including healthful carbohydrates, fats, and protein sources, cooled it down. There’s no harm in supporting a diet—optimal for just about everyone—that’s rich in whole plant foods, such as fruits, vegetables, whole grains, legumes, nuts, and seeds; is rich in healthful fat sources such as extra-virgin olive oil, avocado, nuts, and fish; and includes foods such as tea, dark chocolate, spices and herbs, and red wine in moderation."

  • What bothers me is that I had been eating healthily for years, but still came down with GCA last year. It didn't seem to provide any protection for me.

    Now I eat almost no carbs at all, in effort to combat steroid-induced diabetes.

  • Thats a very interesting article. In the secondlast paragraph they talk about having fatty fish AND flaxseed oil. Interesting. Thanksfor dharing!

  • tgca

    Absolutely. This is what I was aiming at. What ever it is that helps with inflammation and connected pain I want all of us to know. Based on this knowledge everyone can decide to try it or not. And this tv-series very often recommends natural oils for all kinds of illnesses. Oils we usually don't eat, like flaxseed ( linseed) oil, walnut oil, hemp oil. Most important seems to be the flaxseed oil, which is prepared in an Omega-3-safe way, cold pressed. They have a product in Germany, but it would be pricey to get it here. They put 1tbsp. oil in morning youghurt, smoothy etc. There are also many recipes. It's so fascinating because these people were severally ill and almost all if them healed after 5 month in this new way of nourishment. Dr. Anne Fleck, one if the three doctors, is in Hamburg and as we're going to visit this year I got in touch by email. She responded immediately and we'll try to have a visit with her for my husbands Parkinsons.

    I guess it takes more than just a spoon full of oil to really make a difference. She is by the way Rheumatoligist and has patients via Skype in the US.

    I don'y know how much she is charging though.

    docfleck.com

    It's only in German I'm afraid. Well, next time more...

  • Hi I have PMR and GCA. For over 2 years, And looked up anti inflammatory foods then, so I've been taken 2 oz ginger and orange in smoothie, everyday, taken it for over a year and a half now, and try take garlic, turmeric, everyday, I feel it keeps the inflammation down. I think?

    My inflammation markers always reflects on pain I have, I'm down to 5mg, from 80mg, l got a terrible scare with sight, and I did go on strict diet of no cards for about 6 months and I know I did feel a lot better,

    But I just break out now and then and eat everything.

    I think sugar is poison for our body, ( I know we all

    I have some pain and neck stiffness and some pain in thighs in mornings ( which is what I started off with ) it's manageable.

    I have regular blood test

    Just wonder is everyone here completely pain free before they reduce? Thanks

  • I was juicing with Pineapple/ tumeric ginger etc. I feel that these foods did help. My RA Doctor said they do not help.

    I'm looking for a weekly eating plan for PMR folk like myself.

  • Hi I try to eat lentils instead of potatoes, I use olive oil, eat fish twice a week.

    I eat a lot of fruit. And stay away from sugar as much as I can.

  • Steam my vegetables, don't over cook them.

  • Cut the carbs - which automatically cuts sugar which is pro-inflammatory and also helps with weight gain because of pred.

    The primary trouble with juicing is that it releases the sugars in the fruit and that causes a blood sugar spike which really isn't good for us.

  • Okay, my 2 cents worth. I started following Beyond Diet 4 (?) years ago. I had a thyroid problem then but I didn't know it. Weight gain, fatigue etc. So I started cutting out WHITE, no white flour, sugar, pasta etc. Also, cut out processed foods, French fries, fast food, ice cream, cheddar cheese,soda,, Soy, corn. Then I started eating more of certain foods that were anti-inflammatory and fat burning like lemon, eggs, peppers, wild salmon, fresh whole fruits, bright coloured veggies, green tea, olive oil, avocado oil, ginger, garlic, lean poultry, nuts, blueberries and lots of dark green leafy vegetables. I don't go near pork and not much beef. At that time I was only having to deal with arthritis. Sweet potatoes are meant to help inflammation too. It was hard to cut out all foods that contain sugar, but once I did, I found I didn't have the cravings for sweet things too. My one weakness is real coffee and the occasional glass of wine. When PMR popped up again in my life and then Steroids, I was already on a winner and haven't gained any weight. First time with PMR 13 years ago I gain 1 1/2 stone. I haven't been totally pain free for a long time but I do know that when I do go off the rails and eat chocolate or cakes like this past Christmas, I hurt more.

    Green tea once a day, no sugar. I don't trust non organic fruit or veg. I'm not a saint, so temptation does get the better of me. But if I'm not careful the cravings will start up again and you are back at square one.

    Cooking? I cook with olive oil but avocado oil is safer as it doesn't change its properties when hot. I eat all vegetables but not white potatoes. I'm not a big fruit lover but I eat pears, one a day and maybe an apple, never fruit juice.

    Hope you all haven't fallen asleep.

    Jan

  • Oh, I don't fancy giving up a glass of wine or my lovely coffe and do have a bit of chocolate now and again... but, on the whole .....

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