Hi, everyone! I’m about to embark on the tread climber today as I’ve been sick with a cold this past week. Wish me much. Anyway, I’ve been researching a good lupus-friendly diet. Oh my gosh, there is so much information out there about what is supposed to work. If I followed everything I think I’d be living on lettuce for the rest of my life! I’ve read about anti-inflammatory diets, juicing, plant-based diets, paleo diets, and many more. I’m SO terribly confused. Is or has anyone had success eating a certain way where they’ve seen a definite improvement in their symptoms? Gluten-free, dairy-free, no nightshade vegetables… I’m overwhelmed. All input is appreciated. Add anything you’d like about supplements as well: vitamin D, omegas, etc. thank you all so much for your support! Kim
Hi Kim
Yes it is overwhelming for me as well. I have been gluten free for about 2 months now. I believe my thinking process is better. I also removed nightshades dairy eggs(only because I have a strong sensitive reaction to eggs). I am working on sugar. I do see improvements in energy as well. The swelling in my feet and legs has also reduced. Mostly I eat chicken turkey vegetables fruit nuts and seeds. I do eat out about once a week and eat what I want. My taste buds have changed I really don’t want junk food. I do follow paleo to some degree. Oh I do not eat beans rice well grains this has made a big difference in my digestion. Again once in a while I will eat these foods. I hope this helps
Terri
I started incorporating fresh juice into my diet about 3 months ago and have noticed a huge improvement. I also cut back on dairy and am trying to eat “clean”. My C3 and C4 levels had dropped significantly and I was struggling with joint pain, sever heartburn, stomach issues, fatigue, weakness and nerve pain. My symptoms are not completely gone but much better. I will note when I started juicing, I was also put on a daily dose of prednisone and increased plaqunil. I also started IVIG infusions. I am sure they all have contributed to my improvement, but the juice/ clean eating is the one thing I know is 100% good for my body 
Whole foods, so I don’t juice, I use a blender to make smoothies. A few reasons. 1. Nutrients that are in the skin of fruits/veggies (vinegar wash is essential for removing pesticides & pathogens), and 2. Recent research demonstrates that the fiber, which we already know is beneficial for digestive health, holds onto heavy metals so we don’t absorb them. I considered buying a juicer. I won’t do it now. Eggs… there was big flap for awhile about cholesterol in yolks. Then they had to recant and say oops… something in egg white counteracts any harm the cholesterol could cause. Ore than that, we do need some cholesterol. Newer info tells us it’s more about elevating “good” cholesterol than lowering the “bad”. Dissecting our food was never the way to go.
I avoid preservatives as much as possible, especially sodium benzoate (known to cause joint pain w/ arthritis and injuries), and sodium nitrate. Bragg’s Aminos is a safe soy sauce - no wheat, alcohol or benzoate, and it’s non GMO. I don’t eat much from packages, cans, etc. I buy fresh food and make meals… I don’t buy “meals”. I don’t EVER consume aspartame or Sucralose. I avoid high fructose corn syrup as much as possible. Read labels, it’s even in a lot of breads.
I have never had a problem with any nightshade vegetable. What is a problem is tomato products in metal cans. They are acidic, and they will leech the BPA from the anti rust coating. I have tested on/off/on/off in the past, and it does indeed cause me joint pain. Fresh is fine. Glass and cartons are fine. Metal is bad. Some people have a sensitivity even to fresh, so you have to determine that for yourself of course. The same would apply to gluten. It’s very individual. There is no Lupus-specific diet for us.
What some of us have proven is that a healthy, clean, fresh food diet can drastically reduce symptoms, including inflammatory pain. I am minimally medicated as a result. I know a couple of lupies that unmedicated. That extreme is not for everyone, but know that it is possible for some. It does however require a serious commitment to the responsibility for making good choices every single day. For me it is the best path, as I still have physically active goals I want to meet. I lost a good 10 yrs to my illness and have decided enough is enough. I am taking control back. How I eat has given me a handle on it. Exercise has too. Strength training is especially important.
If it seems massive, just pick 2 or 3 things and start there. It’s taken time for me to develop the routine I have now. You can’t do it all overnight. Anti inflammatory choices are a good direction to look in though. Certain things I eat almost every day. Pineapple, avocado, chia seeds, nuts, blueberries, turmeric, ginger, cinnamon (to cover spices), tomato, olive oil, apple cider vinegar (unfiltered), and cheese. Certain cheeses are especially important for K2 content (like Gouda). When I stock my kitchen, I am always thinking about the benefits of that food, not just appeal. To me it is utilitarian. I need to eat to survive. I need to eat well to thrive. I want to thrive.
I forgot to say… no margarine or table salt in my house anymore either. Real butter, sea salt. I also drink almond milk. I do however eat cottage cheese and yogurt.
Keep a food diary of what you eat, and any pain related or might be related to food. I did the 3 day fast and then the elimination diet from The Plan. Gluten, dairy and that ilk were not my triggers. Red fruits are, so I don’t gorge on watermelon or cherries but eat one serving. You have got to experiment with what will work for you. Good luck!
Thank you for your input everyone. I know we’re all different. I was just hoping to find some kind of direction. I have a Vitamix, so I suppose I should put that to work. I feel like I should give up gluten and casein (dairy) and see what happens. It feels right to me to try to eat clean. That sounds like a good idea for everyone.
Thanks for the link Ann.
There's not ONE answer for everybody, but there are some general things that seem to work for most lupus patients.
And for everyone:
eat real food, plenty of plants, drink water between meals.
I read that 100% of lupus patients have food allergies.
Allergies create antibodies. Lupus is marked by antibodies.
So i believe if we eliminate allergenes, we can calm down our immune system and the lupus.
It has worked for me.
I am on ZERO lupus meds.
As long as I stick to my diet and get enough sleep, I am fine.
I can do aerobics, tap dance, etc.
And I was nearly dead from kidney failure, congestive heart failure, and a stroke.
My regimen:
I avoid gluten, dairy, eggs, shellfish (I'm allergic), and nutrasweet.
I suggest making only 1-2 changes at a time, because changing your diet too radically too quickly can make it hard to stick to.
The best way to know if you are allergic to a food is if you
a) crave it a lot
b) frequently eat if for breakfast
c) can't imagine life without it
that is a food that needs to go, because you are in an allergy/ addiction cycle.
Gluten: There are loads of gluten free breads, tortillas, etc out there, so gluten is relatively easy to eliminate these days (compared to 10-15 years ago).
Dairy- there is almond milk, coconut milk, rice milk. I'd avoid the soy milk. Lots of soy is GMO and too much soy screws up your hormones. There are some pretty decent dairy free "cheeses" out there made from almonds, rice, cashews, other stuff.
aspartame/ nutrasweet (diet soda, gum, some candies)- no one should drink this. ever. it shouldn't be on the market. i was addicted to diet coke, and getting rid of this got rid of digestive issues,
most common problem foods:
gluten (means joint pain for me)
soy (pain and swelling)
dairy (tendons get flared up and even locked)
corn (swollen fingers)
nuts (I can eat these thank God)
fish (I can eat fish too)
shellfish (hives)
70-80% of our immune system is in our gut, which gets destroyed by toxins, stress, and medications.
Because of this, I take a probiotic every day and a digestive enzyme with dinner.
Hope this is helpful and not overwhelming.
It has been completely effective for me at staying very healthy without drugs. And I was once on 9 drugs plus chemo and transfusions.
Going Gluten-free on the advice of my doctor has been a blessing. I have lost over 50lbs even with taking Prednisone every day. Not to mention I have less stomach upset from my meds, less gas pain, etc. It helps my joints immensely and is really not that difficult to do. Corn rather than flour tortillas, my husband uses Gluten-free flour rather than regular and surprisingly it actually creates a better product, most candy is okay (sweet-tooth), and I have found myself eating healthier and LIKING it.
These are just some suggestions.
Best of luck and keep us updated!
as Jack Lalanne said "if man made it, don't eat it!
Ann A. said:
If it grows on a plant, eat it.
If it is made in a plant do not eat it.
Thanks, Ann, for listing the Coursera.org program. I just signed up for the nutrition course. I think I'll learn a lot more from this than from my session with a sub-par dietitian.
Good luck, Kim, figuring out what and how to eat.
http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics/causes/con-20030410
This is where the gluten avoidance came from. 1 in 141 people have celiac disease. Please read this. I had all the symptoms and didn't have celiac disease. Was tested to the extent of biopsy (was negative).. After much testing my symptoms came from the other autoimmune diseases that I have. If someone has celiac disease, gluten-free diet is one of the treatments. It reduces celiac symptoms, but doesn't cure it.
I totally agree with organic non-GMO diet. GMO (genetically modified organism) plants are very toxic and "also" destroy the intestinal lining and so does grapefruit.
My two cents.
I like your two cents! 
You don't need to have Celiac disease in order to have a problem with gluten.
I am allergic to wheat.
Others are gluten intolerant- can't digest it.
Celiac means you can't have gluten, but not everyone who benefits from cutting our gluten has Celiac.
USAGURL said:
http://www.mayoclinic.org/diseases-conditions/celiac-disease/basics...
This is where the gluten avoidance came from. 1 in 141 people have celiac disease. Please read this. I had all the symptoms and didn't have celiac disease.
didn't know coursera had a nutrition course. will check that out. thanks for sharing. ALways interesting in learning.
Rivvie said:
Thanks, Ann, for listing the Coursera.org program. I just signed up for the nutrition course. I think I'll learn a lot more from this than from my session with a sub-par dietitian.
Good luck, Kim, figuring out what and how to eat.
my husband listens to coursera a lot, for various topics. he says it's great. and there's no "catch," no scam, just great info.
also from Pollan: eat nothing with more than 5 ingredients or anything you can't pronounce.
And shop only the outer aisles of the grocery store. everything in the middle is processed food.
Someone recently told me that in war zones, it takes American bodies far longer to disintegrate because of all the preservatives and chemicals. gross, huh?
Ann A. said:
Another Pollan from Food Rules
Never eat anything you have seen on television.
If there is a commercial for it, don't eat it.
Don't eat anything you can't pronounce.
Don't eat anything your grandmother would not recognize as food (some young people might need to use greatgrandmother)
A really neat course just started on Cousera www.coursera.org
One thing that I told myself was "hey I typically eat the same 5-10 things all the time" (most people do). So I just need to find a new 5-10 things.
I learned to love hummus, found some gluten free breads, almond butter, "cheese" made from nuts, almond milk, coconut milk yogurt that i mix with cut up apples or berries with ground almonds on top (that is freaking delicious!), smoothies with spinach and berries, and I keep some quick-mix protein powder (non-GMO, plant based, no soy or dairy or gluten) on hand if I need something quick, and some meal bars in my purse (no soy, dairy or gluten- I eat "Pro Bars") just in case I get stranded somewhere where there's nothing on the "yes" list I can eat. (So many pizza parties!) I keep a couple small dove chocolates in my purse in case we're eating out and I want dessert. Pretty much all desserts in restaurants are gluten and dairy.
I try to make my diet not so much about NOT eating gluten, dairy, etc., and more about getting nutrition. Getting my calories' worth from my food. Fueling my body with things that gave me sustained energy without depleting my adrenal glands (what stimulants and caffeine do). Joel Fuhrman calls this being a "nutritatrian."
I call my former lifestyle being a "crapatarian," because I really ate junk. Taco Bell, Subway, that was my healthy food.
Grape juice (largely sugar i know now), ice cream, candy bars and LOTS of diet soda. I wasn't obese, because I'm fairly vain and have other ways to express addictions (work, relationships, TV, video games, etc), but I was tearing down my health and I'm 100% certain that stress, terrible diet, toxins, lack of joy, and several medical/ dental procedures all added up to my developing lupus.
Thankfully I found I could completely reverse all the damage by making better choices.
Good info to have. I just installed the corsera app on my iPhone and looked under food and nutrition and found some interesting courses. I haven’t been to the link about MOOC as yet.
This morning I ate protein rich oatmeal, low in carbs, high in protein. It wasn’t great, but I’m comfortably full.
I like the idea of eating to live instead of living to eat. It puts me in a better frame of mind to be a “nutritarion”. I know I can do this. I suppose, to an extent, it will be trial and error as to what foods react negatively with my body and which help me feel better.
Thank you for all the feedback.
You can actually find a lot of foods that are both great-tasting and nutrient-dense -- the two don't have to be mutually exclusive. You can definitely find new foods to enjoy, and I really think that is the key to eating a healthy diet -- finding things that are both healthy and satisfying. They do exist!! And if you find stuff that you actually like, it is easier to get yourself to choose something healthy over something that is not. One thing you can search the internet for is Paleo recipes -- you don't have to be following a Paleo diet to benefit from the recipes, it is just something easy to search on.
The reason I suggest that, is that since the emphasis with Paleo is on whole foods, the recipes tend to be more nutritious (can't take that for granted though, need to use judgement when reading them), and the recipes don't contain gluten or many common allergens.. The recipes also tend to be lower in simple carbs since grains and processed sugar are not allowed, and the key really to losing prednisone weight or minimizing weight gain on prednisone is limiting simple carbs.
You can make "spaghetti" from spaghetti squash (or zucchini) instead of pasta! You can make "rice" from cauliflower! Roasting vegetables (like squash, green beans, carrots, brussel sprouts, broccoli) can turn them into something divine (seriously) and is really easy. One thing I have noticed -- if you cut out processed sugar from your diet, fruit starts to taste much sweeter -- apples, clementines, etc. start to seem indulgent and feel like a treat. And it is much harder to get "too much" sugar from whole fruit than from processed foods.
Okay, now I am getting hungry :-).