So the reality of this diet is that so far (a month in) I have NOT noticed any improvement in my symptoms or pain levels (I know this because I kept a food/mood/symptom diary), and the stress of trying to do the diet actually led to a flare...so it has been very counterproductive!! Part of me figures that perhaps it is preferable to take the drugs that I know can help me, rather than give up eating some of the simple things that make my life feel worth living! I can't imagine being happy continuing to deny myself the simple pleasure of making a cake or collecting my own hen's eggs and eating boiled eggs with buttered soldiers. It feels ridiculous to be continuing on this stressful path when life with Lupus is stressful enough and there are already so many things that Lupus prevents me from doing anyway.
So I've decided that I'm going to reintroduce eggs and goat butter again next week and make myself a delicious cake (a gluten free, sugar free cake) to reward myself for getting this far on the diet. I will share the recipe with you!
The fact is that I already ate a very good diet and perhaps was already avoiding the worse case of symptoms that I was likely to get? I was already aware of the things that made me feel unwell such as wheat, caffeine, and fast food so avoided them already and I was always careful about eating sugar, chocolate, cheese and red meat. Perhaps I would have noticed more of a positive difference in my health if I'd previously had a diet of sausages, pizza, doughnuts, ice cream and burgers? Anyway, all this has made me think a lot about Lupus and the things that trigger it, and so I wrote a list of the things that are in my control and those that aren't:
THINGS I CAN CONTROL:
1 my diet and what I choose to buy to eat from the shops
2 what organic food I can grow to eat in my garden
3 what chemicals I choose to use (or not) in my home and on my body
4 purity of my water (we use a filter)
5 how I choose to spend the energy I do have
THINGS I CAN'T CONTROL:
1 my genetics
2 environmental stresses in my childhood
3 environmental pollutants in the air
4 some stresses in my life are unavoidable (my father is very unwell and grief is stressful)
5 the amount that the sun shines
Sometimes Lupus doesn't give us a choice and we have to take the drugs anyway or we need to risk UV exposure to spend some time outdoors with our family, or we don't have enough money to buy all the food of the quality that we would like. It feels better to accept the things that we can't control, and it also feels good to take control of the areas that we do have some choice in. Doing the diet did feel like taking back some control in a situation that often feels out of my control. I have to remember though, that diet is NOT the only trigger, and that taking too much responsibility for being ill (and getting really stressed about it) is NOT healthy!
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Maya23
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Thank you so much for doing this. I bought the book too and the diet seems pretty brutal. Like you I already know some factors that make me feel worse, fast food, red meat and caffeine so steer clear as much as possible. I couldn't face starting the diet yet as I'm not in a good place. I'm reminded by my rhumy that my lupus is very mild, no organ involvement. But I have pain most days, get very depressed and get an awful fierce butterfly rash on my face that lasts months at a time. I don't want to take medal via I want to lead a natural life and the drugs they give you seem to cause as many problems as they solve. At the moment I give up, I'm trying denial that lupus exists in me and trying to not complain about it cos I'm sure my family are fed up to the back teeth with it.
Aw thanks.. yes 'brutal' is the word! I know how you feel about wanting to be in denial about it -I went through that (and probably will again)- it just gets so boring to have this illness completely dominating your life all the time!! Despite not having organ involvement I think it's really tough having a long term chronic condition that keeps chipping away at you. And long term pain is stressful on the body and mind, it's no wonder we get depressed! It's hard on our families too.
Wow! I think you have been incredible sticking to this and thanks for the feedback.
I am also impressed by your reality check at the end. I have just been reading up on psychological matters and one of the things I have taken away is that you just have to accept some things and if you do you may be more relaxed and at peace.
Hi, I haven't read the book or anything about diets & lupus.
However I have over the last few years gradually given up some foods which I think caused me some problems. I gave up coffee, cola & chocolate (caffeine) cos they triggered migraine. I gave up cakes etc. I cut down greatly on bread though I still eat some occasionally, & we have gradually replaced meat for vegetarian 3 days a week. We have always tried to eat at least 5 fruit n veg daily that way you eat less crap generally. My one downfall is that I crave crisps (I think its the salt I crave). It is interesting that it seems to match changes in your diet.
HI Rusty9, that's really interesting that your personal observations have led to a reduction in the foods that also make me feel worse. And that increasing 5 a day helps you eat less crap generally... good advice! I too crave crisps!! But they often make me feel sick afterwards so I think it' the salt I want and not the fat.
Thanks for your update and beautiful awareness. I read the book a while back but (as a registered nutritionist) didn't rate it. I do think that nutrition/diet is one factor that, as you say, we can take personal responsibility for. I think it is an important factor and I know that Prof Graham Hughes does too.
From what I remember of the book (I sold it second hand so I don't have a copy to refer back to) - I thought that there wasn't enough scientific references cited to back up the recommendations. I know from writing my own review paper that there are references available, I managed to read well over 100 papers.
I also seem to recall that there wasn't enough emphasis on including long chain omega 3 fats which are found naturally in oily fish and are crucial in reducing inflammation. The short chain versions are found in flaxseed but the body doesn't use the short chain version in the same way and finds it very hard to bioconvert to the long chain EPA and DHA omega 3s found in oily fish. There are vegetarian long EPA supplements available made from algae (and I rely on these daily).
I also think that inclusion of enough protein is important to help provide the raw ingredients for brain neurotransmitters, which help us feel good and keep the mood balanced. Protein is also important to balance blood sugar - to prevent cravings, fatigue and mood issues. I seem to recall the book, in my opinion, didn't seem to make this point come across enough.
Avoiding caffeine I think is very important - caffeine increases stress hormones in the body like adrenaline and cortisol. It impacts blood sugar and can lead to low mood. In addition to this if it is taken regularly it can impact the adrenals. From my research I have discovered that lupus sufferers tend to have a problem with the balance of their stress hormones so avoiding caffeine seems qyuite crucial.
Anyway, I am passionate about this topic and could go on and on about it.
I think that the fact you have figured out what works for you is SO, SO important, having that kind of autonomy is peaceful for the heart.
What I find sad is that some people disregard diet completely - there is so much science and common sense to show that what we feed the body is massively crucial to how it functions. I spent 2 years doing my masters degree after three years doing my degree studying nutritional medicine, I have gone on to spend the last 10+ years studying, attending research conferences and keeping up to date doing courses etc etc......it is powerful stuff.
Yes I agree that the book skirts over the Omega 3 topic. Last night I reintroduced oily fish (we had smoked salmon in the home made sushi -the kids made it with my husband) and I feel fine. I am also taking omega 3 fish oils every day now.
I have definitely noticed a link between caffeine and migraine/headaches and I avoid chocolate most of the time for this reason. My adrenals are fried. I am looking at a new supplement to help build up my adrenals. I've always been over sensitive to stress and have suffered from palpitations and panic attacks.. I'm much better for avoiding all stimulants.
I like your list, and agree we can only do so much before it can makes things worse. Take care and I would love to see your cake recipe. Thank you for sharing with us
Hi Dryad, I feel a bit bad that I put this idea in your head and you followed it through and it didn't work for you! Just so you know I have been making a lot of changes that have been working for me, but since I don't have 'full-blown' lupus as such I felt it would be wrong of me to blog about it and possibly give false information to others. My current situation is that I have Hashimoto's thyroiditis which is another auto-immune disease and last year due to stress I had multiple 'flare-ups' which completely fitted the lupus pattern. After seeing the doctor and rheumatologist I was told that my symptoms were not severe enough to be diagnosed with lupus but I would be monitored. Since then I have had more positive blood tests and there are two theories about what I might have, either Undifferentiated Connective Tissue Disease (which is sometimes called 'pre-lupus') or Antiphospholipid Syndrome. It appears to have been triggered by childbirth two years ago. Also I have spent the last two years eating junk and drinking coke and chocolate and made myself gain 3 stone. My main symptoms are joint and muscle pain, really bad brain fog, lack of concentration, hair loss, fatigue.
So here's what I've been doing over the last month:
* Eating a vegan diet with a small amount of good quality dark chocolate every few days, lots of hummous, fresh veg, rice, lentils, nuts and seeds. No alcohol, tea or coffee or added sugar except the chocolate. The only non-vegan thing I've eaten is full-fat plain yoghurt as I felt it would be beneficial.
* I saw the osteopath numerous times and got some of my back/hip pain sorted so as to reduce the non-lupus type pain. I'm now having a massage every month.
* I saw a medical herbalist who prescribed tumeric which I take 3 times a day with meals and also 1500mg of glucosamine. I was already taking glucosamine and it reduces a lot of pain, it is even better at this dose, which the herbalist said was the maximum you can take. I also take multi-vits, omega 3, 6, 9 from vegan sources, calcium, vit D, my thyroid medication and anti-depressants.
* I swear I would not be able to do this diet without anti-depressants as I think the main reason I got so huge was I ate to make myself feel better, I've lost a little weight since then, but I have not been starving myself.
* I have not been fasting or juicing. I knew I wouldn't be able to keep up with it.
Anyway I do feel much better than before and I attribute that to, eating much more healthily than before, taking more glucosamine which reduces the pain, taking tumeric and generally being more active about trying to manage my pain. All of my symptoms are still periodically a problem, such as today where I had such bad brain fog I would be thinking about something in detail then 1 second later I would be unable to remember what I was thinking about and still couldn't remember hours later. Pain was on the minor scale today and medium tiredness, though I was told I looked tired
Anyway I agree with what you said about the fact your diet was already very healthy, you may not have been the best candidate for this diet as you were already been pretty healthy, so the gains you made were not significant. For me they were more so. I think if I stopped taking all my supplements and ate badly again I would soon feel much worse. Anyway, thanks for telling us about your experiences! I hope you come to a happy medium where you are being healthy and enjoying life. I think a few eggs would probably be good for you!
Hi TeganSara, Thanks so much for letting me know how things are going for you -it sounds like you are really getting some good results! I understand how hard it must have been for you to change your diet but it seems to have payed off -lots of positive changes -well done you!
No worries about inspiring me to try the diet, I'm glad I tried it (even though it was really tough) as now at least I know I'm doing my best to manage my health, and my nutritional therapist has been really supportive. I'm now reintroducing eggs, salmon and goat butter, and I'm going to make flapjacks today. I'll share the recipe if they turn out well. xx
Ive read some of your posts about your mighty brave diet changes & I LOVE your lists!
I realised chocolate made me feel sick a few months back & begrudgingly gave it up! I was telling a friend who I didn't realise is a qualified nutritional advisor & she was advocating as much RAW veg/fruit as possible, along with changing to VEGAN diet (thought of your blogs & thought NO CHANCE!) BUT I had a still to eat eggs and honey (bees need our support!) I had given up red meat/pork just cos I didnt fancy eating it (& Im allergic to fish/seafood & I switched to hazelnut/almond milk, non dairy spread & feta, halumi, Soft goats cheese.
I DONT FEEL SICK!
(I did accidentally eat a teeny bit of chicken one night & felt sick the next day!)
Happily I discovered I can eat PURE cacao nibbs with no negative effects
I also learned to carry herbal tea bags in my handbag for visiting family/friends.
Bit of a bind that my Son is very much a meat eater so Im shopping & cooking 2 different meals.
I also know I react to wheat but hey, its my only vice.
Now to try some of your recipes - its my sons birthday midweek.
Hi Nanuuk, That's so good that you are finding foods that work for your your body, it's a real journey of discovery - and what a relief to stop feeling sick! I find that nausea is my best clue to what isn't working for me! It's hard work cooking 2 different meals though, I've started buying pizza for my sons so that I can sometimes just heat them up for them and I don't have to cook twice.
I've also started eating raw chocolate too, I found the sugar in chocolate gave me a crash later, but a bit of raw is ok. Now I"m on steroids I seem to be a bit more tolerant of it too!
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Lupus LOVES stress, rearrange your life to knock out what lupus lives on emotionally.
Allergic reaction?
Foods??
Is lupus something we need to 'beat'?
