There seems to be quite a few of us for whom taking some of the medication is difficult or unwanted (for a variety of reasons) and there have also been a lot of questions on this blog about alternative ways to help cope with lupus involving diet, even for those also taking medication.
I am wondering if there is a website anywhere which simply lists those foods/supplements which either people through personal experience have found helps their disease, or researchers have shown can help us fight it. There are lots of snippets of dietary advice regarding immune conditions covering literally thousands of websites, but it would take months to trawl and read through them all to compile a decent list for lupies. For instance foods that aggravate and foods/supplements that seem to help. We are all individual and what helps one does not help another, and I would be the first to say we should follow our doctors advice, but if you have allergies or react badly this is not always an easy option.
Does anyone know if such a website/organisation exists ?. Really I guess I may be asking the impossible, just a simple list with a very brief explanation would be brilliant. If I can help my disease in any way by changing what I put into my body or avoiding certain foods that aggravate lupus, it would help me feel I am taking a little bit of control of the disease and doing the best for it. I know some think that diet/supplements play no part whilst others are quite convinced it does. I guess I am one of the latter. I would be interested in hearing others views as to whether there is a foodie list anywhere or even whether one would help ??.
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Riverbird
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Hi riverbird,im so with you on this ,i would love to come across a healing diet for lupus,but the diets are just as complex as the disease,i know one thing ............get off gluten!!!!be carefull with supplements,as some can aggrivate our systems,do your research,and devise your own diet ,thats what im trying ,oh....one more thing is reduce yeasts in your diet and avoid sugars ,choose easily digested proteins ,take some digestive enzymes ,hope this helps?brave
Well i try to eat as healthyily as i can., it seems to work for me. Up until last Oct i had managed thru healthy diet and lifestyle to stay off ALL medication for my lupus, raynauds and a bit of other mixed connective tissue diseases. I was diag with Lambert Eaton (auto immune) in Oct last year after collapsing during a marathon. However after 6 weeks in hosp, 2 months being fed thru a tube i got back running in less than 3 months. I have just done another marathon. It is thru eating the foods that my grandmother would recognise. No JUNK. No fizzy drinks, No additives, It`s simple really. You can still have treats but make them yourself.Have just written a book, trying to get published all proceeds will be shared with Lupus and Lems for research. Just heard about a book called `Lupus recovery diet` on this blog going to get that
Hi lemonface, I too try to keep a good diet. I check out labels on everything(!) before buying and am very careful with what I eat, drink and have in my environment generally. Organic food and drink, skin and hair -care, cleaning products, even clothing when possible etc, plays a major part in my life. I see a homoeopath and a chiropractor for regular treatments (and use other methods as and when needed) which has been a great help to me. This is costly, of course, so I don't go out much. My health has become so important to me that if having to choose between a night on town and seeing my homoeopath - the homoeopath would win ..every time Best of luck with your book!
Hi, I am fairly new to this forum. Recently, I have changed my diet after being ill with what seemed like gastric flu, but was more than likely part of my lupus, and digestive problems. After this, I decided I needed to change my diet. I read about the night shade foods, tomatoes, potatoes and bell peppers, and how I think they can cause pain/inflammation (i think), so I no longer eat these. I have a food combining book, and from informationin there, I gave up eggs (make me feel sick sometimes). I had changed to GF bread a long time ago, but have given this up over a two week period, partly because I was advised by a sports specilist that it could make me feel weak. I now also try not to mix carbs with proteins, more to aid digestion. Milk, I believe can hinder digestion, so I am trying the lactose free range. Obbviously, I have to make sure that I am not depleting my body of important nutrients, so vary diet in other ways. Spinach is also high on my food list...oh and wine, because I need to have some pleasures. Anyway, the point of all this, is to say that I have had the most amazing week, with no fatigue, brain fog, less joint ache...... I felt like my old self again. Mind it could be that I had started my hydroxychloroquine again after my illness, or that I have come out of a flare, although I have not learnt to recognise these yet, other than bouts of illness. I must add though that I have made these decisions based upon my thoughts about food and me, but for me, from first diagnosis of lupus changing aspects of my diet has made a difference. I just hope this good feeling continues.
Just to say a very big THANK YOU to everyone for their very helpful advice. I will certainly be changing my diet to encompass some of these things and will let you know how I fare.
Hello, I do agree with your comment that the LUPUS UK dietary advice leaflet needs reviewing, as I don't find much helpful information there (even has misinformation). Thank you for the many websites (which have taken me some time to check out).Unfortunately many lupies would not have the energy to read through, digest and (I suspect) understand the medical articles and I think it would be very useful if someone (you?) could pick out the most important information and make it into an article in layman's language. Best wishes
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Best of luck with your book!
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