Questions

[Hekla]

With Lupus, what to eat and what to avoid.

What supplement to take and what to avoid.

[DJK99]

Hi Hekla- the most important food to avoid (I found for me , as aleady on a highly healthy diet) is alfalfa sprouts. If I eat them I get a bad flare especially lesions on my fingers and hands along with the rest of many symptoms (swollen painful red joints, tendon pain, migraines, exhaustion, rashes etc etc). Done a test twice and it’s a definite. I used to eat it in sandwiches every weekday prior to diagnosis then read not to... no lesions since! Lots of websites on line about eating well for lupus — as you’d expect: at least 2 litres of good water throughout the day (tap better then bottled - I now have a Nikken (expensive!) water filter; lots of spinach,green veg and fruit so orange, red, yellow, any kind of colour veg/fruit; organic fish and meat or veggie food, all dairy organic too ie milk, cheese, live yoghurt, limit all sugar in everything as inflammatory and just bad for one generally; limit booze as much as poss (specially if on methotrexate); no sweets/cakes/few crisps etc- limit salt and definitely nothing with msg (chinese meals), tons of salt or bad E numbers erc. Limit fat laden sauces and cheap foods with extenders and weird man made alternative flavourings and colours. Life is much easier if you are fit and the right weight... so even if it hurts, do gentle exercise as research shows this is essential for being as well as you can be and limiting fatique - but the research (link from Cambridge Research (?) on one of my other posts) showed people found it v hard to continue once the research project ended - so the fatigue returned as bad as ever. I push myself (but not too much) to do as much as I can, yawning all the while. And sleep tons, limit stress as much as poss, no pressure in private life! I take tumeric (or is it cumn??) for anti inflammatoy effect, dha oils are supposed to help - and I take Super Elixir - v expensive - since I started to be v unwell 4yrs ago bed ridden with infections and exhausted all time. It really helped. Hope my recipe for the best I can be helps. All the best, D

[Cann in reply to DJK99]

Tap water can aggravate some people because of the chemicals in it. I found that when I was seriously ill and I changed to bottled and was much better.

[DJK99 in reply to Cann]

Hey Cann - yes, I agree re the tap water... but apparently bottled water "is dead". Been sitting on the shelf in nasty plastic bottles forever. Keeping you from having bad reactions however, I can absolutely understand bottled being the preference. My pa was one of the first people in the UK to install a US made water filter into our home in the 60's. With that, a complete change to the diet you are on (and I still try to, minus the nuts - and tomatoes these days - as they have arginine and give me cold sores all the time) and a ton of best quality vitamins, my skin improved incredibly (this at 7yrs old).... still dry as hell and cracking on my hands etc as I didn't have the fantastic Eucerin products I found many years ago (have Urea in which is amazingly therapeutic).. but the rashes died down... Here are the tests and info re the Nikken Pimag I got at the beginning of the year. My acupuncturist recommended I get one and, due to the huge cost, I took many months to finally give in. google.com/search?q=nikken+...

behealthybemore.com/reviews... nikkenergy.blogspot.com/201...

Sadly Pimag costs a huge amount...You have to purchase via one of their sellers.. found mine living a 10 mins walk away (mind you in Brighton - par for the course!). I was so desperate I put it on a credit card. Have to say it's helped my eyes be less dry (and need to use drops less) but my thirst is still quite bad ongoing. All I know is, I'm doing all I can. I went on a food combining diet for a year once - subsequent to seeing a Naturopath Dr Sidhwa (Sp?). He's probably no longer with us, and certainly not practicing. I felt amazing on it. I used to have week long fruit fasts too... Wow. Very effective. Haven't done it for years.. but my diet is pretty clean now, unlike then when I drank coffee and drank alcohol a little more. Maybe I should - my gut's awful much of the time still. Anyway, impressive, your diet. Everyone used to think I was a "Crank", remember those shops? I used to work across the road from one in London.. very useful. I used to make my own bread (wholemeal 100%) just like they did, and like my pa taught me in my younger years. He was a tad forward thinking. Well done you, all the best, D

[Cann in reply to DJK99]

Not sure if I thanked you for this email, but interesting to read. Some of us really do have a difficult journey. I am sure it is due to something that gets into our system and difficult to eradicate.

[Cann]

I think this is different for everyone even though they may all have lupus. For me, I find avoiding grains entirely has helped enormously. I eat quinoa, amaranth and occasionally millet which is a grain. I know it is my digestion that is a problem at certain times, but then I get flares all over my body, so it is not always digestive. I find eating fruits and vegetables and using herbs and spices like basil, sage, rosemary, turmeric, ground cumin, ground coriander, etc. help me with digestion and infection which I pick up easily.

I eat the small beans which I cook myself from scratch. I occasionally eat fish for the omegas and the odd piece of cheese now and then, but I find dairy causes inflammation for me and of course, it was meant for cows or goats and not humans, so I don't find I miss it that much. I used to get bad bouts of bronchitis as a child and I used to eat lots of dairy then as most children did.

I eat nuts and seeds but as ground to digest them or they aggravate my gut.

I know this seems a strange diet to some, but we are all different and we have to find what is right for us, but wholefoods organic where possible is the best for me.

[maye1]

I agree with Cann that it’s individualized. But I think gluten is a no-go for any autoimmune disease. I’ve been very strict with gluten for 2 years. I’ve recently cut out grains and dairy as well. 95% of my diet is from scratch. Veggies, fruit, meat. I have never had renal issues. If I did, I’d be mindful of protein. Also, corn worsens my joint pain, so I don’t eat corn but that may be unique to me.

I know my diet sounds limited but I’ve adapted to it and I like it now.

[Treetop33]

I started on the autoimmune protocol and have progressed now to eating nuts as well, a bit of goats cheese and lentils (because I'm rapidly going off meat so time to eat a few more pulses etc.). If I was to say what the no nos are for me it's gluten, grains, nightshades, caffeine, sugar, in the main.

I supplement with magnesium, iron, D3, B vitamins and DHEA (adrenal issues). Also taking low dose naltrexone which has helped with the fatigue and brain fog. But also taking standard meds which keep me alive.

[yakamalayo]

My daughter (with Lupus) started by dropping gluten completely, then dairy and refined sugars. It made a huge difference and her health improved enormously. Then two years ago she also went vegan - this time for ethical rather than health reasons - and her health took another leap forward, pretty well taking her back to 'normal' most of the time.

Stress is her biggest trigger now, so yoga, walking, seeing friends, etc. all help, but her body still reacts even if her mind is saying she's not stressed!

Amazingly, for the first time in 4 years, she isn't reacting to sunlight and heat!

Definitely everyone is different so it's about finding out what works for you. But it's amazing how many people seem unwilling to be open to the incredible difference that diet can make to their condition. Yes, gluten free and vegan seems daunting, but we all get into cooking ruts and habits, so it's just about creating new habits and then it's as easy as cooking anything else. Eating out is obviously more restrictive but nowadays even that is OK as everywhere has to provide menus with allergy information and almost everywhere offers vegan/GF options.

[Treetop33 in reply to yakamalayo]

Veganism really seems to work for some people. I am absolutely sick of eating meat on the AIP diet so have been contemplating vegetarianism at least (I don't seem to have problems with little bits of goats cheese). I wish I knew more about why a plant-based diet works best for some.

[marghay13]

Hi Hekla

Like Djk99 I use Nikken filter water as I came to it via one of their magnetic products when my leg was so painful. I swear by it, to the point that I did become a consultant, but I would say that because the products last so long you soon get your money back v bottled water. Yes you do need to replace filters. I also went gluten free as I was told it was recommended for Fibromyalgia which I also have and I definitely notice a benefit from it. I get an organic box delivery and don’t buy any processed food if I can avoid it. All more expensive but I am much better for it and I’m not trying to keep a family, only me, so financially, it’s just about doable.

[Chanpreet_Walia LUPUS UK]

Hi Hekla,

We published a blog article on lupus, diet and healthy living. The article has a section on foods which people with lupus may want to avoid: lupusuk.org.uk/diet-and-hea...