Has anyone gone vegan or eliminated sugar or gone chemical free to try to treat lupus? How did it work for you?

I have been considering going chemical free since I read there was a link between very long term hair dying and lupus (I've been dying my hair very regularly for the past 23 years). But I've just read a book called the Lupus Recovery Diet and I've starting to think eliminating animal proteins as well maybe be worth it, especially in light of the fact I am always ill with various things that noone can diagnose and have been since an early age.

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  • If I go ahead with this I will blog about it so you can all see how it goes

  • I tried to go chemical free a few years ago after watching a programme, before I knew I had lupus. It was hard work as pretty much everything has some sort of chemicals in it and it was making me OCD about everything I ate, washed in and cleaned house with so I gave up and decided to just do my best to be healthy in other ways. Like eating home cooked food and being relaxed.

    I'd be really interested to read your blog to see how you manage and if there are any changes I can realistically make to my life too.

    Thanks for this post as I think chemicals have a lot to answer for and I hate there seems to be no getting away from them.

    I wish you all the luck in the world xx

    Casey :)

  • I was diagnosed with ME 8 years ago (and Lupus 2 years ago) and I decided to treat the ME at that time by going chemical free and I saw a nutritional therapist who suggested I do a sugar free, yeast free, wheat free, caffeine free, dairy free diet and take probiotics and omega 3 supplements. So I did. This meant no alcohol, no chocolate cake, no tea or coffee, no pizza, no fizzy drinks... But it did make me gradually feel better.

    I'm still unable to eat wheat without lots of abdominal discomfort, so I still eat yeast free rye bread. When re-introducing sugar I noticed I got a lot more blood-sugar crashes, and more inner 'heat' or inflammation so I try to avoid it. With dairy I noticed it made me very snotty and the joint pain increased. I still avoid alcohol and caffeine (never agreed with me anyway) and occasionally treat myself to cake.

    Over the years I've tried homeopathy, english herbs, chinese herbs, acupuncture, massage, shiatsu, healing, EFT, counselling, learning mindfulness meditation, the expert patient program ...all of these helped to manage the pain and fatigue.

    We use natural cleaning products, eat organic food, and grow some of our own too. I take Tumeric every day (it's anti-inflammatory) and I'm getting a VIT D test on Monday to check whether I'm deficient, in which case I'll take a high dose as this might help with inflammation too.

    Despite all this clean living, I'm still pretty unwell and need to take anti-inflamms 3x a day, and this still isn't enough to keep the flares under control so now I'm at the point of asking my rheumatologist if there's anything else I can take. The anti-malarials didn't agree with me at all (gave me nervous system weirdness and I had OTT emotional outbursts) so I'm wondering what comes next....?

  • I'm intrigued by the 'Lupus recovery diet' -do share -I hope you do blog about it, I will follow with interest!

  • Hi

    About 4 months ago, I started a 75% raw food diet and excluded dairy and wheat. I try to eat natural foods that are not processed and organic if I can afford it. I still eat a small amount of fish and white meat.

    It has made me feel better but not totally. It def gave me more energy and a feeling of well being that I have not had for maybe 2 years.

    this may also be psycho somatic because it is a good feeling to be in control of at least some part of your life!

    I have a large family, so I tend to incorporate a small amount of the diet for my kids and then prepare stuff for myself...

    so,maybe I eat a banana and apple for breakfast and gluten free granola

    a massive salad with smoked mackeral for lunch and a jacket potato and stir fry for tea...loads of nuts and seeds...and panda licorice!!!

    I have lost a stone in weight which I think helps my joints

    I miss custard and ice cream.

    There are loads of books out there to help and If you start out gradually it is not too much of a shock!

    Good luck, I def recommend it! You have nothing to lose and the more you research the food industry the more you realise how much of it is about money money money not really about what is good for you; so you have to read ingredients really well.

    Let us know how you get on.....

  • I went to a GP that recommends the diet your thinking of starting as I had severe migraine,along with cutting out MSG and E additives,he also suggested taking up swimming or something just for yourself that you enjoy,as when he asked me my plans for the week- end,I had none,but all the plans were for my children,so he focused on the whole person.I did start the diet,I found it hard to stick to,but I am going to try again,best of luck,hope all goes well

  • There is a website called the lupusrecoverydiet by jill harrington which has a video on it. Hope this helps

  • I just bought the book - it looks interesting. I've tried so many things already, but I am always hopeful!

  • There is a good book you can get from amazon called:

    The everything

    Anti-inflammation diet book

    By karlyn grimes

    This book pretty much sums the approach up..... a friendly but sensible approach including recipes

    But always good to check in with your drs when you're thinking of combining this with your meds etc

    Lupus uk has also put out some info on diet recently - in the last mag I think...

    I've been on this sort of diet & supplements for over 10 years and I think it really does help a bit.....along with my meds, exercise, meditation etc etc.....everything I try to do re lifestyle management

  • Thanks for all your answers everyone, it's interesting to see what people have tried for themselves. I am planning to go ahead with this and have already made tentative steps towards it. Only problem with chemical free is the fact that I have to buy all new products so I won't be able to do that straight away, it will have to be gradual due to budgetry restrictions! I do have a friend who is a strict vegan of many years standing who I am going to see next week so I hope she has lots of advice, I know she does chemical free but I'm pretty sure she isn't sugar free. I've been vegetarian in the past but being a naturally lazy person, I never did it properly and made myself anaemic, and I did go sugar free before when I had chronic thrush which no one could solve and I managed on that but it was boring. I feel like I can do a better job of it this time because I'm going to do a lot more in the pulse/bean/grain areas. I also have a medical herbalist I'm going to see later this month, I used to go to her for massages and saw her for my thrush/vulvodynia problem and I know she will know a lot about chemical free and immune boosting supplements. I will definitely keep you all informed!

  • Oh and thanks Barnclown for the book recommendation, I've ordered it and will see what tips I can add to my new routine!

  • Yes yes yes!! I was vegan for two years and had virtually no symptoms, life was great. This was before I was diagnosed though. I then had a major life crisis and began smoking, drinking and eating anything, which caused me to flare and led to a diagnosis. I'm now trying really hard to get back to being a vegan. I've stopped smoking and eat vegetarian so far. I'm slowly cutting down on my dairy which I believe is the main culprit in a lot of medical conditions, not just immune conditions.

    Problem is it takes a minor lifestyle change to be a vegan. I still wear leather shoes etc as my desire isn't politically led but it helps to totally set your kitchen up with dedicated cupboard space, a blender, a juicer etc. I used to get an organic vegetable delivery every week so I knew I was eating fresh and also grew lots of wheat grass for the juicer. I suggest Gillian Mckeiths recipe book and her health book is also useful. She incorporates fish into a vegan diet as with Lupus it helps to eat Omega 3,6 and 9.

    Restaurants are difficult but a huge salad with a peice of salmon is always a good choice.

    Good luck with it, and thanks for giving me the boost by highlighting this issue. I believe it really works.

    Alison

  • Hi Acorn - yes I agree with you, I have noticed a significant problem/reaction to eating dairy recently so I am now considering going dairy free. I bought the book THE LUPUS RECOVERY DIET by Jill Harrington and I feel hopeful that changing my diet will help. I too was dairy free for nearly 2 years (part of my recovery from ME diet!) and I definitely improved and had more energy and less pain. Then I relaxed my diet thinking I didn't need to do it anymore and that's when it all got so much worse and I was diagnosed with Lupus! According to the book, animal proteins pass through the gut wall and the body attacks these proteins and our own proteins (very similar) causing inflammation. All due to 'leaky gut' wall that I was trying to repair before with previous diet! I'm thinking of blogging about this too.

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