I noticed a question recently (by TeganSara) about whether anyone had tried a vegan diet or going chemical free to treat lupus. In the comments someone recommended reading the book THE LUPUS RECOVERY DIET by Jill Harrington, so I bought it.
Having just read it, I am starting to feel hopeful that changing my diet will help reduce inflammation in my body. I was dairy free for nearly 2 years (part of my recovery from ME diet in 2006!) 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. Apparently this is all due to 'leaky gut' -that I was actually trying to repair before in 2006 with that previous diet!
I have designed a little chart for me to fill in each day detailing the amount of sleep, activities, food, and symptoms, which I can look back through to see whether there is any connection between what I eat (and exercise and sleep) and my symptoms and mood. I am expecting to see a connection -and therefore I will then go on an elimination diet to exclude those foods. I am also starting to eat more fresh salads from my garden, and do more exercise. I hope that I can share some positive results with you.
My symptoms are really bad at the moment with lots of pain in my arms muscles and tendons, all my joints are grumbly and painful, I have brain fog, dizziness, and weakness and exhaustion. I haven't been able to get on with any work for ages, and been in bed mostly for the past few months. The next step might be steroids, but I want to see if I can achieve some results with diet before I take any more drugs. I'll keep you posted!
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Maya23
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That is really interesting. Will be good to know if anything you eat improves your symptoms, I too have been suffering loads in the last few months with much the same symptoms as you. Am going through ill health retirement at the moment and also claimed DLA because I just cannot cope with busy nursing career any more. My DLA has been turned down so I guess next step is an appeal.
Good luck in your research and please let me know if this works.
hi dryad
i too believe that food can have an effect on our bodies and your experiment might be good for you,and may have some very interesting results.
i am also having a bad time too at the moment with aches and pains and bad fatigue i called my rheumy nurse this morning to talk about having more help as im struggling every day with the constant aches and pains its really getting me down and the miserable weather is not helping.
later she phoned me back after talking to my consultant and he now wants to do more bloods and put me on steroids which has upset me so much.
like you i don t want to take drugs i have a very sensitive stomach and can t tolarate drugs very well,but its a catch 22 situation as im not coping very well with the pains either i wish for just one day to feel normal.
According to the book, prolonged drug use (particularly anti-inflam pain killers) also make your digestion more sensitive and the 'leaky gut' worse. This is a bit of a catch 22 as we need to take the drugs to help reduce inflammation.. which makes it worse so we take more drugs... how do we break the cycle? I hope the diet might help reduce the need for drugs and therefore help repair the gut. We'll see.
Yes I do think there is something in the foods that we eat can affect the body. i stay away from processed foods, keep frozen foods to a very small minimum - always but fresh and eat fresh.
i use extra virgin oil, eat more than my 5 a day fresh fruit and veg. I know longer eat red meat, (but on a very rare occasion if eating out maybe tempted to eat lamb - my favorite meat!).
We eat mostly chicken - always skinned and fresh fish! I eat chips approx once a week - as prefer rice anyway or cous cous.
Since starting steroids back in Jan - have a real craving for oilves, (which I previous disliked!). I have been doing this since March 2011 after seeing a dietarician and nutritionalist at the hospital and I have seen an improvement with my aches and pains etc.
However, I do feel depending on the level of Lupus SLE or Sjogrens Syndrome a person has - to help calm the immune system down medication does also have to play a part
I had my Consultant appointment this morning and a little peeved to be honest! My blood work in some areas are starting to come back within normal range, (which is very good), liver and kidneys functioning well etc - but the lupus or SS is still gnawing away. My Consultant has advised that i will have to increase my MMF even further by another 500mg, so now on 2000mg per day and i still will have to take 5mg steroid per day. He is very reluctant to start weaning me off the steroids - because last time they did this Oct 2010 I was very poorly again.
I showed him my toes - just to Raynaulds and chilblains - which he said he has seen worse lol! even though mine aren't pleasant and so sore. I have to keep a check on them, keep them dry and warm etc. I enquired whether this was a side affect from the MMF which was increased initially in March to 1500mg - because it states on the 'side affects' that it can interfere with circulation. My Consultant said that most people with Lupus and SS suffer with this anyway and some are not on this med's - ok fair do's. Just don't want my toes to fall off lol!
He also wants me to start taking Planqenil in 3 months along with the MMF as he feels that this will calm the other symptoms of lupus and SS. However, when I first took this 2 yrs ago i couldn't tolerate it so came off them.
My consultant said that if i can tolerate them the 2nd time around and my current symptoms receed then i maybe able to be weaned off the steroids.
I do think that this whole Lupus and other auto immune disorders are a balancing act - what with medications, side affects, lifestyle choices, mild exercise and food. it's anyone's guess.
However, in order to have some quality of life - I feel that a little of the above, hopefully, should do some good.
Sorry for my rather long post and rant - just a little fed up today - and the prospect of more med's - i will be rattling soon. I have gone from someone 2 yrs previously was on NO med's - to a cache of med's everyday!
Is anyone on the above med's with these doses and how do you find it/
is there life after chilblains lol! and how long does it take to heal/
Just to let you know my toes are constantly white and look like they're going to drop off. I'm on 7.5mg of steroids which I can't stop or I suddenly find I can't get out of bed due to fatigue. I'm also on 400mg Hydrochloroquine. Thinking back my toes have always been white and ghostly. I have SLE and Sjogrens.
I too have the Jill Harrington book and I'm working up to it full time. Still trying to work out the Omega 3,6,and 9 fish and Lupus debate if anyone has an opinion on that, be great to hear it. x
Hi Lulabelle - just read your post - I can give you a bit of cheer - I am currently on Steroids 5mg, plaquenil, and various others and have been for many years - I have managed without a flare up for 17years. I work full time, and have good and bad days - most days the muscles and joints play up, and usually weary - however, I hold down a job, swim every day and wouldn't be able to do any of these things if it wasn't for the steroids etc - so as far as I am concerned, I will keep on taking the drugs in as low a dose as possible and get on with my life. My biggest worry is my weight, and am interested in looking into lupus diets if anyone has any ideas then just point me in the right direction! leslaliblue
Hi Dryad, I'd be really interested to hear how you get on. I've ordered the book today so would be interesting to see how things go. I saw my consultant yesterday. I'm newly diagnosed, so looking at more results. I was astonished to find out I have a massive Vit D deficiency - consultant said lowest he'd seen for 20 years, and this hasnt just come about due to 6 weeks of total sunblock. It's good news in some respects as it explains my agonising hip & lower back pain & spasms which didn't quite fit with everything else! We were talking about diet and said there were some good books available, but for enough dietary vit d I would need to eat 50 raw eggs and 10 mackerel a day LOL. More pills it is then!
hiya. Ive read the book mentioned above and i got quite excited by what it said and think theres something to it. i was brought up on a vegetarian diet by my parents and then lapsed a bit when i went to school but then at 12/13 decided i wanted to be vegetarian again. At 16 i was diagnosed and have until the last couple of years when ive started eating fish, been on a mainly vege diet with a bit of chicken. I have to say that inflammation wise i have never been too bad and i put that down to (in hindsight) my diet. also becos ive been on steroids for a very long time i had a panic when i was first put on them and thought if i stuck to my vegetarian diet it might help fight the weight gain a bit.
poodlegal - try the audio books on amazon or audible you might be able to get it to listen to instead?
I'm working up to the Harrington diet as I'm firm believer in the vegan/Lupus connection, but I've heard that Omega 3,6 and 9 is important in helping Lupus. My Rhuemy said eat fish. Love to know what you all think?
Interesting about the vitamin D. i'm looking to increase my intake of that. We have to remember that the skies and sun quality are not as they used to be.
I had my blood tested privately for food sensetivities a few years ago. It was expensive. I had a reaction to red meat except lamb which i never ate and yeast. I had a very strong reaction to dairy which i suspected. It was the main reason i did the test. I had no reaction to wheat as i had already cut it out of my diet because i suspected it caused my IBS. I've no idea whether these tests are kosha but i do think diet is important. I've thought about a vegan diet myself so it will be interesting to see how you get on.
I have read this book and am on the diet and it has def given me more energy and I feel better inside myself.So I would recommend anyone to give it a go! Also have read up on xenoestrogens which are found in plastics, food, detergent...honestly it scared the life out of me!! but I have bought a water filter and try to buy organic.
Wow that sounds encouraging! Are you still on any meds? If you slip up on the diet do you notice an increase in symptoms?
We also have a water filter and try to eat as much organic as possible and I've always limited my dairy intake - I like to think that's why I'm not as ill as I could have been! Looking forward to less symptoms!
Diet / food intake is vitally important to all but especially lupus patients.
Food fuels our bodies. Without proper fuel our bodies do not function at optimum capacity. Known fact.
Examples: Diabetic patients, Hepatic patients, Renal patients, Heart patients ALL have PRESCRIBED diets. (this is a pet peeve of mine : SO MUST LUPUS PATIENTS)
Lupus patients can and do benefit from altering their diets.
Best to consult a professional Nutritionist to gain a balanced prescribed diet / food intake for your own specific needs as all Lupus patients have individual issues. Deficiencies and or excesses must be avoided.
I agree! I did see a nutritional therapist before when I was diagnosed with ME and she put me on a wheat free, dairy free, sugar and yeast free diet. This must have helped as I got better... but then I relaxed the diet and the joint pain and brain fog got worse and worse. I think it will help to go back to this elimination diet and start again.
I got a Vit D test this week and apparently the GP is writing to me about the results -a sign that I'm probably deficient. So time to start taking that too.
I've been looking at anti inflammation diets & supplements since I turned 50 (8 yrs ago) way before my lupus etc diagnosis (turns out I've had SLE since infancy). My NHS pain specialst had recommended this diet etc, would you believe. Yes...seems this is sorta becoming more establishment
And 8 years of conscientiously eating this way have definitely been good or me
Last autumn on this forum I met a brilliant young academic nutritionist name in. She has written a comprehensive paper gathering recent academic research on this subject. She told me recently it's going to be available from her website:
I'd recommend this paper to anyone interested in this subject. Ani covers diet, supplements, exercise, mood etc. it's scholarly but very accessible, and emphasises the importance of including your drs in your diet decision making
I've just done a long post about my daughter's amazing 'recovery' (feeling amazing and bloods now back to normal!) which she puts down to GF/vegan diet and lifestyle (yoga, stress management, etc.) (she still takes one Hydroxycholoroquine a day). I won't repost it all here as it's very long, but it has completely transformed her health, so have a look, or if you can't find it reply and I'll do a link or something (not sure how though). Good luck with changes!
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