I trust my local farmers...and that's the extent of my trust. I eat only grass-fed beef, slaughtered on the same farm they grazed on, and eat only heirloom seed, organically grown veggies.

Grocery store!? Only for coffee....

Hello,
This is most interesting to read the write-ups about our different experiences with food and I want to thank you all for sharing.
Interestingly enough, I had problems with different foods since I was a child and over the years I have either avoided or eaten certain foods almost by instinct. It is so interesting to read here that many others with SLE/MCTD have gone thorugh very similar experiences with food as well.
It appears that the food we are eating plays a much bigger part in our well-being or our suffering from unwanted flare-ups than it has been medically given credit for and/or written about !
Thank you all for participating here on Daily Strenghts about this important matter and it is really great to learn such a lot of added information here... it also takes away the isolation of suffering from SLE/MCTD and gives such a lot of support!
Thank you all from Kristina.

I have lupus since i am 15 years old. Today I am 58. I stopped eating meat 6 weeks ago and feel much better.Alfalpha has been known for years to be bad for lupus patients.I eat protein rich veg foods and take vit b d c supplements. My energy level has increased . Also ladies there is life after menopause. Once I was done with that all my lupes systems have subsided.I am off prednisone and cellcept now and have only plaquenil and elavil to help me sleep.Don't lose hope. Keep moving and love yourself...it will get better love and health to all of you out there sruggling

I would respectfully disagree with the statement that cancer is more prevalent today just because people are living longer.

That theory doesn't hold up when you consider the fact that cancer rates vary widely in different cultures. Time and again, it's been shown that people from other parts of the world have much lower rates of cancer than people in the US.

And the clincher...when people from those cultures move to the US and start eating the so-called "Western Diet", their cancer rates rise dramatically. Nobody can say for sure if it's the food, the sedentary lifestyle, all the environmental toxins we're immersed in, etc....but the unfortunate truth is that the US is a toxic place to live.

And by the way, average life expectancy in the US is now one of the lowest in the industrialized world...and infant mortality is among the highest. But on the plus side, health care costs are more than double what they are in any other country...so at least we're making the doctors very rich. We should take comfort that we're doing some good by being sick so much...think of how their children are going to the best schools on our money...LOL.

And on that note....I'm considering moving to Cuba...if they'll let me in.

Yes, I find it interesting that so many of you have found food that cause you pain. Rheumatologist used to deny that. I got interested in food allergies just because I found a book where I worked in the early '80s. Finally realizing that citrus caused me pain made a big difference in my pain levels. Although I remember in this book that the author had been inspired by a study of people with RA who if they went on a complete fast would find great relief in their pain.

At the moment I'm waiting to see a judge to get on disability. If I get it I hope to put a little more effort on my diet, but right now, I'm just trying to be fed easily and cheaply.

That's interesting that you mentioned citrus, I read somewhere that some people are sensitive to citrus and do much better if they avoid it.

I don't eat citrus because of the high sugar content and the acidity, it seems to bother my teeth. There's nothing in citrus that I know of that can't be found in other foods.

Hello again,
Please tell me MButterfly, why would you consider moving to Cuba? Apart from the political situation ... (has it changed and is a little bit more democratic now?) ... is it healthier for a SLE/MCTD patient to live in Cuba and is the medical service better there? Or do you "only" refer to cancer-rates in Cuba?... and is it better to live in Cuba to avoid any Cancer and why would that be so? Do people naturally live better in Cuba and do they live on a better diet and what does their died consist of?
Many thanks you for your answer and best wishes from Kristina.

@ Richie,
Please tell me: why would you respectfully disagree with the statement that cancer is more prevalent today just because people are living longer? I did not quite understand what it means. Do you mean that cancer has a better chance to "creep up" on people because people's life-expectency lasts much longer than "in the old days"? Or does it mean something else?
Many thanks for your answer and best wishes from Kristina.

It was my attempt at a joke.

But, in all seriousness anywhere one can eat organically grown, heirloom seeded, otherwise-un-messed-around-with-food the better off one will be.

The cancer rates, which is just another auto-immune disease that has more respect than the rest, have increased over the past few decades due to pollution, genetic manipulation of food, chemical contamination of food, and of course the "western lifestyle" that doesn't put a huge premium on living life, but of earning. It doesn't lend itself to health. It just doesn't.

I love my country...but sometimes, it really feels like it doesn't love me back.

Here's food for thought:
http://www.forbes.com/sites/danmunro/2014/06/16/u-s-healthcare-ranked-dead-last-compared-to-10-other-countries/

http://thepatientfactor.com/canadian-health-care-information/world-health-organizations-ranking-of-the-worlds-health-systems/

Note: Cuba is just behind the USA in healthcare, but at least it's free...and close to the USA ;)

Of course...I'd have to roll myself in sunscreen until nothing could be seen but the whites of my eyes. LOL

Apologists for US health care failures often try to blame the high rates of cancer here on the fact that people are living longer and therefore more cancer is showing up among our aging population.

Well, first of all...Americans are not living longer than people in other industrialized countries. We're well behind European countries in our life expectancies...and many others around the world.

Secondly the cancer rates are higher in the US than in most other countries. This difference is not accounted for by factoring in the higher age of our population compared to that of the Third World. It's a matter for debate as to what's causing the high cancer rates here, but the reality of the statistics is not debatable...it's simply reality. You are more likely to get cancer here than in the rest of the world.

Living in denial doesn't work. Eventually reality has a way of biting you on your rear end. You can't solve a problem by simply pretending it doesn't exist...modern medicine here in the US rarely pays any attention to prevention. All the money goes for a desperate search for a cure while simple measures that might pay huge dividends by lowering cancer rates are generally ignored or underfunded.

You can drastically lower your chances of developing cancer by getting your body weight within recommended guidelines, eating better food, getting more exercise, and avoiding known carcinogens like the commonly used garden herbicide glyphosate.

Just doing one thing like getting rid of all the fat most Americans carry around will make it less likely you'll get cancer. So put me down as vehemently opposed to the current social movement toward fat acceptance. Excess body fat kills people, accepting it is self-destructive and stupid.

Thank you very much MButterfly and Richie for your most interesting explanations, it is very much appreciated.

I did not know that the healthcare in Cuba is (still) free and it makes sense that the cancer increase in the Western World is connected to pollution, genetic manipulation of food, chemical contamination of food, and "western lifestyle" which often offers plenty of the "wrong food" to choose from for convenience...

MButterfly, I don't blame you that you "roll yourself in sunscreen until nothing could be seen but the whites of your eyes"... Better safe than sorry... and thanks again for your comprehensive explanation, I very much appreciate it.

Thank you Richie for your explanation that the life-expectancy in America lacks behind European countries and many others around the world and that the cancer rates are higher in the US than in most other countries ... and that it's a matter for debate as to what's causing the higher cancer rates in the USA...
Here in England there are also many discussion about people getting weightier and "heavier" and therefore getting more unwell as a result of their increase in weight. Listening to the Radio, I have heard it said, that if people get rid of their overweight it will make it less likely that they get cancer and many other health-problems connected with overweight and there is also in England a current social movement toward fat acceptance, but when overweight people try to walk along in a shopping centre or on walk-ways, one can clearly see how they struggle ...
Thanks again MButterfly and Richie for your very comprehensive explanataions, it is very much appreciated and is extremely thought-provoking.
Many thanks again from Kristina.

No problem Kristina. It's a mystery to be sure, this Lupus thing. But Lupus patients have been called the "canaries in the coal mines" for a while now. What's happening to use can easily happen to anyone, it's simply suspected that we're more sensitive to external pollutants.

I have to agree that a healthy weight can only help - especially if one has joint pain. Fat acceptance - I can't get on board with that one. I have several conditions that can contribute to increased weight gain, but I can't let that happen or I won't be walking for long (joint problems).

Kristina - How is SLE treated in the UK? Are they using biologics there yet? How about IVIG?

I have to say that I'm definitely more sensitive to environmental pollutants. Smoke from controlled burns, trash burning, and brush fires tears me up...lung irritation, asthmatic symptoms, coughing, migraines, sinus problems. Any kind of chemical that causes respiratory irritation bothers me severely...formaldehyde, chlorine bleach, household cleaners, vehicle exhaust, etc.

When I see people living in ways that will likely cause them serious medical problems I just can't keep my mouth shut anymore. If you see someone about to step into a manhole with a missing cover, do you keep quiet and let them hurt themselves or do you shout at them? Type 2 diabetes has become an epidemic here in the US, and it's clearly being caused by excess weight and sedentary living. It used to be a disease of middle age and now even children are getting it in epidemic numbers.

I know what it is to suffer, I have pain and misery every day of my life. I feel compelled to speak out when I see someone headed for medical issues they could easily avoid. I read recently that one small bottle of cola drink has as much sugar as four Krispy Kreme donuts. Nobody has to drink sugary sodas all day long, that's clearly a choice.

I'm sorry, but I just don't believe that telling someone that they would have a better life if they lost some excess weight is psychologically damaging. The campaign against "fat-shaming" sounds like total bunk to me. Nobody is damaged by constructive criticism if the person doing the criticizing is trying to save you from needless suffering. I'd rather speak the truth than be well-liked.

Thanks again for your kind replies, MButterfly and Richie.
The question of "How is SLE treated in the UK" is a difficult one to answer. Because of my severe drug-intolerance I never could take any medical SLE-treatment as such and I paid heavily for it by suffering cerebral haemorrhages and a stroke and a few other medical catastrophies because of severe flare-ups of "my" SLE/MCTD. I don't really know, if the right would have been medication applied at the right time beforehand, could it have prevented these medical catastrophies?
Thankfully, since "finishing" with my menopause "my" SLE/MCTD has almost vanished (touch wood it continues like that!) and it does not even show its ugly head anymore. I have heard that SLE/MCTD seems to be connected to our (female) hormons and when these hormons are being "sorted out" by the menopause, it can happen that the SLE/MCTd vanishes with it and leaves us alone, hurray!
(Let's hope it continues like that!!!) Talking with other SLE/MCTD ladies here in the UK, most of them were treated with all sorts of anti-inflammatory-drugs and cortico-steroids... I was never ever treated with any of these because my body reacted allergic to all anti-inflammatories and I could never take any corticosteroids because of my allergies and drug-intolerance. But, as I have mentioned above, I paid the price and it took many years to recover from the cerebral haemorrhages and the stroke and my rehabilitaiton was very hard, took a very long time and did not come easy...
Thanks again Richie for your kind reply.
I agree with you, I don't tell people either what they should do or eat etc, because we are all grown up enough to decide how to live our life. Also: some people go through terrible times and/or had a shock which was severe and confused their body-metabolism. Who am I to tell them that they have put on weight? It is much more important for me to listen to their troubles and assist them to get over it and as soon as they have sorted themselves out, their weight-problem will also be slowly sorted out with it...
Best wishes and kind regards from Kristina.