lupus page

[kimk8202]

hi
does anyone have any more info on dealing with/having this disease? A friend of mine was just diagnosed and I hadn't heard too much about it?

I assume going primal, removing wheat and gluten may help.

Any other advice?

[cillakat]

The most helpful actions will be

1)quickly repleting D levels. Quickly. Very quickly. I had a number of lupus markers for years. It took awhile to get rid of them but maintaining my 25(OH)D levels at 65 ng/mL finally did it. See my sig line for some vitamin D information. The vitamindcouncil.org will have much information on autoimmune disorders, it's worth reading it all....not just the lupus information.

2)ditching grains will be helpful...and possibly diary as well, but not as helpful as repleting D.

Interestingly, it doesn't really matter what the disease process is, the answer (at least in part) is optimizing 25(OH)D levels via sun and supplementation and ditching grains and sugar.

[StoneAgeQueen]

My father in law has Lupus and RA. I'd love to hear more about what could help him, too. I told him to try a gluten free diet, but I don't think he's stuck to it.

[cillakat]

SAQ, in addition to the lupus markers, I had markers for RA as well (and more....listed in my journal in the first post).

Even without going gluten free, optimizing his 25(OH)D....not just raising it, but truly optimizing it can go a long long way. Vitamin D deficiency is most likely the main factor that allows autoimmune disorders to take hold.

I had either fully develped or significant symptoms/blood markers for
psoriasis
raynauds
sjogren's syndrome
celiac
fibromyalgia/chronic fatigue

As well as a bunch of other health issues that weren't autoimmune.

Allllll of the markers are gone.....though just recently my CRP (not hs-CRP) is way back up and appears to be caused by dairy consumption.

Best to all of you,
Katherine

[say_rahhh]

I have Mixed Connective Tissue Disease which is closely related to Lupus. I cannot recommend highly enough the blog "coolinginflammation" - in fact, Dr. Ayers' information is what led me to radically change my diet. It's all about controlling, you guessed it, inflammation.

My most important dietary rules are no grains and no vegetable oils, followed closely by no sugar.

My last flare-up before changing my WOE was almost 2 months long, with extreme exhaustion (12 hours of sleep, still needing a nap, contemplating pulling my car over during my commute to sleep, etc.), joint pain throughout, mental fog, extreme Raynaud's, increased alopecia, etc. I changed my diet just a couple months later and my next flare up lasted only about 2 weeks and, I would say, was only 40% strength of the previous one. Of course, it was still life disrupting and very upsetting (I think I was overly confident about my diet COMPLETELY managing my disease), but much much more manageable.

I'm on daily medication (plaquenil) and my goal is to eventually not have to take it anymore. But for now, I am allowing my body to slowly recover from the poisons that are grains, and following conventional medical advice. Of note, not one of my doctors ever mentioned changing my diet because I'm slender, my HR is good, my cholesterol is good and I ate "healthy" (low-fat, high grains, low protein).

I had an uncle with Lupus and he lived well into his late 80s; I don't feel fatalistic about auto-immune diseases. I physically and mentally feel the best I have in my entire adult life and now I hope I live to 90 or 100. The only thing that saddens me is that based on the recommended American diet, I essentially lost so much of my life feeling like I was in a machine that was slowly breaking down.

[StoneAgeQueen]

Thanks, Katherine! I appreciate the info.

[kimk8202]

thanks team this is really interesting. how much vit d have you found to be effective.

i also thought fish oil, evening primrose, multi

i have read zma maybe isn't good...

[kimk8202]

what about fitness,,, how much or what type?

[say_rahhh]

To tolerance, is my best advice. Elevated heart rate (whatever cardio means to that person), some weight bearing activities and stretching.

[kimk8202]

ok it wasn't a friend, it was my mum. i gave her your suggestions today and she said that she has actually being trying to reduce gluten and feeling better.

she still likes brown rice though so that will be a hard one.

she told me she switched from cream milk to soy but i told her that may be worse... what do you guys think? Dairy I know is individual but she said the only thing she really has now is yoghurt.

What other hidden things is gluten in - i know it is in sauces, oats, rye, wheat. The gluten free grains would be quinoa and brown rice and maybe buckwheat?

what about saturated fat and lupus- - some people say it makes it worse so how does that sit with coconut oil and egg yolks and full fat dairy? What is the best oil to stirfry with or ok if you are out at restaurants? Is sesame oil or avacado oil ok?

sorry for all the questions this is very helpful.
kim