Lifestyle changes - managing Lupus really well and feeling great!

[yakamalayo]

This was originally a reply to a post about the effect of diet, but I wanted to send it to all, because I find good news stories can be really helpful and inspiring.

When my daughter was diagnosed with Lupus 3 years ago (age 17) we did loads of research and she decided to cut out gluten as there are many studies which suggest links between gluten and autoimmune issues (though she had no signs of intolerance). That was closely followed by cutting out dairy and refined sugar for the same reason (lots of anti-inflammatory books highlight gluten, dairy and refined sugar as the 3 primary food triggers of inflammation, in that order I think, although everyone is different).

About 9 months ago she decided to go vegan as well (for ethical reasons), so fish/meat/eggs etc. now also gone. She still finds being gluten free and vegan easy when she's cooking (she's at uni in self-catering accommodation) but eating out is obviously harder. Actually, not too hard in the UK now - loads of vegan/gluten free places in cities - but travelling is a challenge. Went to western Ireland (Cork area) a couple of years ago and that was brilliant. Lots of places getting better now.

Her health improved ENORMOUSLY which she largely puts down to her lifestyle choices, including her diet, exercise, yoga, learning to manage stress levels (huge trigger for her), etc. Her medication is down to one Hydroxycholoriquine per day and has been for some time.

Back in January, her blood tests showed her bloods had come down to NORMAL!!! which the lovely lupus specialist in Birmingham, Professor Gordon, said she had rarely, if ever, encountered before!

Luckily she likes cooking so she makes loads of delicious food, which is not hard when cooking from scratch (LOADS of veg, spuds, non-gluten grains, lentils, beans, fruit, herbs, spices, etc.) but would be much harder if you're used to fast foods and instant meals. Luckily she didn't eat those anyway so the switch wasn't so hard and the benefits have been really worth it.

In terms of buying special food, although most gluten free bread is not great, she has found a brilliant one which is also vegan and widely available in UK/Europe. The brand is Schar and they do loads of different varieties including loaves, ciabatta rolls, wraps, etc. It's actually really good. I sometimes eat it even though I can eat normal bread. In the UK, large branches of Morrisons (mostly in the North) have the best range of Shar products, but Tesco, Co op, Sainsburys etc. also stock it. For people who like biscuits/cakes you're probably better making your own flapjacks, chocolate mousse (amazing GF/vegan versions online) etc., rather than trying mass-produced GF stuff - much nicer and healthier. Edinburgh has several cafes that do vegan/GF cakes, so I'm sure other big cities have too (sadly not so easy here in Rutland).

Incidentally, since becoming vegan as well as GF/Dairy free, her health has improved even further so most of the time she feels 100% back to pre-lupus health, apart from fairly short-lived flare-ups triggered by sunshine (occasional slip-ups on the factor 50) or stress.

So really worth trying diet/lifestyle changes. My mother-in-law is always trying to make her old favourite staple recipes with substitues so that my daughter can eat them, which doesn't really work that well, so one final tip - don't try making your old favourites with complicated substitutes, but experiment with new recipes which are GF/DF/V anyway. You can find loads online.

[Treetop33]

Interesting to hear, thanks. I've been wondering about diets recently because I'm on the AIP (extreme Paleo) diet, and cutting out sugar, dairy, grains, nightshades and legumes fine on the whole. I just can't stand eating so much meat, and find myself yearning for lentils and beans in particular (and you can also get some wonderful flours made of lentils and chickpeas).

It's made a difference, but not the degree I would have hoped for. Can I ask why she made a decision to go vegan? Was it based on research?

[yakamalayo in reply to Treetop33]

Actually the vegan thing was for ethical rather than health reasons. Animal welfare, effect of animal farming on the planet, etc. Her health had got back to being pretty good before (gluten & dairy free, minimal refined sugars (except in alcohol!)), but interestingly it has really bounced back since becoming vegan as well. In the early days of Lupus she reacted to beef (she'd been vegetarian for years but was working in a butchers!), but she was eating eggs and fish, but having now cut all animal products out, she's feeling amazing.

I guess it's all a bit experimental as we are all different. Good luck finding what works for you.

[Treetop33 in reply to yakamalayo]

Glad to hear she has a plan that has worked out.

[Hidden]

That is so good to hear. Your daughter is an inspiration, that she has taken control of her health at such a young age. I will have a look at the bread as I'm waiting for the results of a Coeliac test. Thankyou.

[PMRpro]

My granddaughter has improved her severe asthma greatly by being vegan. She started as veggie out of conviction and then decided to go the whole hog.

She's not gluten-free though. I actually find finding meals with no gluten (or at least in my case no wheat) is very difficult on veggie/vegan menus. If I'm lucky there is a choice of 2 options - usually one.

[yakamalayo in reply to PMRpro]

Yes it is really hard - 2 choices would be very lucky! If we're eating out we tend to phone ahead to check they can cope with it. Greek/Turkish food is usually a good bet, and some of the chains (e.g. Wagamamas) have several options or can vary things for special diets, so it's definitely getting easier.

[PMRpro in reply to yakamalayo]

My personal favourite is a good independent Indian - once we found one in a backstreet in Ilford, about 100yds from the Travelodge. They couldn't have been more helpful and the food was very good. I just wish they'd keep the bread options on chain menus as an add-on so you didn't have to ask what was in the rest - if you see what I mean. I know they have "The Book" but sometimes you get looked at as if you are from outer space!

[webar4780]

Oh yes,

I can vouch for shar bread and other share products. I'm hooked on them now. Though they are very expensive!

I am hopeful that awareness will raise the number of customers buying shar bread and reducing the price. I always try to remain optimistic despite the unlikely happening.

Well done to your daughter.