Diet and nutrition

[ancoats23]

Does anyone have any advice on how they are managing their condition through diet and nutrition?

Thank you

[MrsMarigold]

Hello ancoats. If you mean managing lupus strictly with diet/nutrition I can not answer that. But I can share with you what supplements work well for me: liposomal vitamin C, clean Icelandic fish oil, magnesium and calcium mix, probiotics.

Limit sugar, gluten free again past 2 months,

Quality protein, fresh vegetables, whatever is “in season locally”. We are in strawberry season so eating them in salads, smoothies etc.. best, MrsMarigold

[ancoats23 in reply to MrsMarigold]

Thank you Advice I have seen is generally healthy eating - which I was doing already - which makes this fatigue even more annoying!

[MaCoBu]

Hello Ancoats23,

A few years ago, I was having a terrible time with Lupus. Brain fog, joint pain and fatigue kept me in bed most of the time. I struggled to keep my part-time, work-from-home job.

I got in touch with an old friend who is a top rheumatologist in the US. (I’m in the UK.) This is his practice: attunehealth.com/

He recommended the Autoimmune Protocol — an elimination diet which prevents inflammation. He also recommended daily yoga and medication — and to break a sweat every day. Within a few months, my pain had lessened, my fatigue reduced and I gained my life back. I also lost 4.5 stone .

The AIP was developed by Dr Sarah Ballantine, a medical researcher: thepaleomom.com/

There is also a lot of good advice, along with medical studies and success stories here: autoimmunewellness.com/

It’s not easy, and I know it’s a leap of faith to completely change your life based on an internet stranger’s experience, but more and more people/studies are finding that a healthy gut is the root of wellbeing.

I am not a medical professional. I am only relating my personal experience. It has been 5 years since I started and I am grateful every day to have got my life back.

Good luck and be well. And, get in touch if I can help.

[HealthCoachLupus]

Hello,

I have been following the Autoimmune proticol (AIP Diet) for months now and it has made a huge difference to my digestive health, which was one of my main issues. For me personally all of my autoimmune symptoms followed years of bad gut health, so this is a massive step forward in my mind 😀 There's lots of information online about the AIP diet. If you fancy a book about it 'the autoimmune solution' by Dr Amy Myers is a good place to start.

If you don't fancy doing the AIP diet for whatever reason, try to follow an anti-inflammatory/ antioxidant rich diet, full of phytochemicals (plant chemicals), healthy fats (wild caught salmon, flaxseeds, walnuts, extra virgin olive oil), vitamins and minerals (organic eggs, dark leafy greens, organic organ meats...); eat lots of cruciferous vegetables (broccoli, kale, Brussels sprouts, cabbage.. Etc) - aids the bodies natural detoxification pathways in the liver.

Avoid all junk food, refined sugars, alcohol and smoking.

Reduce toxin exposure - change to eco friendly cleaning products; organic cosmetics; organic soap and shampoo bar; add some Mold and toxin reducing house plants to your house.

There are many others but this is a good start 🥑🏃‍♂️😁

[ancoats23]

Always have avoided junk food and no sugar and I am a tee-total, non-smoker - the rest of the advice about meditation and managed exercise is again my normal practice. I am vegetarian so an adapted Paleo diet is not suitable - but thanks for your personal experiences.

[Olive12345]

I also follow the autoimmune protocol! I was going to say paleo mom and autoimmune wellness are great resources but someone beat me to it. I’m also on hydroxychloroquine but the autoimmune protocol has made the bigger difference. I have lupus, scleroderma, raynauds, sjogrens, and fibromyalgia. There are some things listed as being ok for elimination phase that I can’t eat (garlic really flares my lupus 😢 and I’m allergic to colagen powders which some plans promote). I’m in the reintroduction phase so I’ve added back legumes, nuts and seeds, rice occasionally, corn occasionally. The idea behind it is finding out any triggers that are unique to you and becoming a nutrivore (seeing food as nourishment and eating the most nutrient dense foods)! Good luck!

[ancoats23]

As is so often the case - a lot of the advice is things we should be doing anyway - but it is really good from fellow people with lupus. Thanks to all.

[MaCoBu in reply to ancoats23]

Well, it actually isn’t simply things we should be doing anyway. The information some of us have shared is targeted to Autoimmune conditions, specifically, and is backed up by our experiences and some medical studies. (autoimmunewellness.com/aip-... Is what you’re doing working? Perhaps, since you’ve asked the question, you may need to broaden your ideas to bring about further healing.

[ancoats23 in reply to MaCoBu]

I am really looking for more information in a supportive place - we all have different tastes and emotional, physical and psychological responses - some of us may already be too rule orientated and blaming ourselves for our condition. Fortunately I already eat only wholefoods. But as I say it is personal and for me that diet would basically involve no protein - which I know is the last thing I need.

[ancoats23 in reply to ancoats23]

And btw loving the Hildy Johnson image!

[ancoats23]

And here is Venus William's advice on the subject - health.com/condition/autoim...

[Tiggywoos]

I think nutrition is a really personal thing ..,what works really well for one doesn’t for another . Garlic is the absolute devil 👿 for me and causes massive swelling and rashes whereas it’s fine for others .

I think it’s good that celebrities share diagnosis but when it comes to their diets they will have chefs and limitless cash so it tends to switch me off . As we all know on here some days it’s hard enough shuffling around to get dressed and washed . I think some of the receipe books are fab then on a “Good” day when I’ve got a spare spoon 🥄 I might try something new but spare spoons are scarce 😉xx

[ancoats23]

I definitely agree - but it is also interesting to hear that someone with a RA condition can still compete as a top class athlete. But definitely mental health is so important. Fortunately if you like fruit and veg you can always shuffle to the kitchen - and also thank goodness for supermarket deliveries.

[sarahsch]

There's lots of research going on into lupus & diet and participants are reporting their lupus has gone into a clinical remission/negative bloods.

I follow Dr Brooke Goldner' s Lupus diet. Worked for me. goodbyelupus.com/?s2-ssl=yes

I watched one of her talks, spent £10 on the Goodbye Lupus book to understand the diet & followed it myself, so you don't need to spend lots on working with her.

Take care,

Sarah x

[NewEngland3]

I think there are two overarching diets that people are trying:

1. paleo

2. vegan a la Dr.Goldner and Dr.Greger.

Everyone is different--i am doing vegan now , no gluten and mostly paleo vegetables, some grains-only oatmeal and corn.

I cant do paleo as meat (my fave) gives me symptoms and esp with kidney disease i need to only do vegan protein.

What is the BIGGEST trigger for me is light--outside regular daylight and any lights except incadescent .

With regular exercise, BMI in lower 20s( 22 now-but trying to get to 2o), flax seeds, good sleep, daily exercise and lupus meds I am doing OK, however any sunlight,uv light and I flare.

[ancoats23 in reply to NewEngland3]

Thanks so much for this - I have explored all the resources and this doctor looks really interesting - lots on YouTube - very inspirational. Not a fan of smoothies - as I prefer getting my nutrition in solid form and I really like vegetables!! But definitely things to try and I have always been an advocate of treating our health with the minimum of medication.