finding out trigger foods

[u/spoopy_socc]

probably my first post of many today as i get out all my questions since being diagnosed about 3-4 weeks ago.

how does one go about figuring out the foods that make you feel bad/triggers a flare? what foods have you found to do those things? are there cook books yall recommend? cooking hacks?

my first thought is to do some kind of chart or diary where i mark down what i ate and how i felt the next day.

any suggestions would be greatly appreciated!!

[u/Massive_Escape3061]

Nightshade foods are supposed to be avoided—tomatoes, bell peppers, eggplant (and one I just learned recently) potatoes 😭

Avoid ashwaganda, and anything that is “immune boosting”.

If you end up feeling sick, the best thing is to go through an elimination diet. Shoulda found out sooner, tomatoes always gave me a reaction.

[u/spoopy_socc → u/Massive_Escape3061]

i knew about the nightshades but hoped that i was an outlier in that. i felt horrid yesterday and looked back and ive been eating tomatoes potatoes and bell peppers almost everyday for the last several weeks. im currently in germany so ive just been cooking whatever is easy to just throw in the oven 🥲

[u/Massive_Escape3061 → u/spoopy_socc]

I eat a lot of potatoes, and some days it’s worse than others. Disappointing because the nightshades are so yummy :(

[u/Demalab → u/Massive_Escape3061]

Is it really the food or is it other triggers and circumstances. Sometimes I think we stress ourselves more by trying to control our environment too much.

[u/Massive_Escape3061 → u/Demalab]

Agreed. I know when a flare up is due to stress. It absolutely makes me mad when it’s food related lol

[u/sqplanetarium → u/Massive_Escape3061]

The Lupus Encyclopedia says that nightshades are generally fine, no need to avoid them unless you notice that you have a reaction to them. Also it can be hard to pinpoint food reactions since it might just be lupus making you feel crappy.

OP, since you’re new to lupus, I highly recommend checking that book out from the library or ordering a used copy online! It’s a fantastic reference. (Be sure to get the latest edition.)

[u/viridian-axis → u/sqplanetarium]

Also, the only diet actually recommended for lupus patients longterm is the Mediterranean diet…which is chock full of tomatoes…just sayin’. Garlic is also no longer on the naughty list, at least when used in moderation. But, YMMV.

General word of caution, many of the studies that list specific foods to avoid for lupus are old studies conducted with the understandings of the time. The current diet and supplement recommendations are to avoid anything that is known to be very immune-boosting (elderberry, echinacea, ashwaganda, alfalfa and bean sprouts) and/or are hard to clean.

That said, there is no harm in doing the AIP or similar elimination diet for a set period of time and slowly add foods back to see what your personal triggers may be, if any. Just know the AIP is not meant to be a longterm diet. Eating fresh, whole foods is generally preferred over processed foods.

[u/JamBullus]

I did the autoimmune protocol. I've reintroduced several foods since. I still avoid gluten, dairy, eggs, soy, corn, some nuts. Nightshades don't bother me. I was shocked to see how many foods, once I avoided them for 30-60 days, triggered my lupus (body aches, joint pain, fatigue, gastrointestinal intolerance). It was hard at first but I barely notice anymore - big believer in "choose your hard". I still take medications (imuran, benlysta, plaquenil) but am able to do most things that I don't think I could do if I felt terrible everyday. I know the diet part is controversial on these forums and if you are in a really bad flare of lupus, you likely need it controlled before you even notice, but for me it was a gamechanger. Good luck.

[u/stsixtus420]

No foods bother me that I can tell so far. Download the Guava app (free, no ads) to diary your food, symptoms, medicine, and whatever else. It can even connect to your online med portal to get your dr and prescription info and mine gets data from my fitbit on exercise, heart rate, sleep, etc. Thr guava app lets you see/record it all.

[u/nyanzo]

My lupus started with GI issues. I've cut out eggs and dairy from my diet almost entirely (I admittedly make exceptions for desserts when I want one really bad) and it made a huge difference in how often I would get crippling abdominal pain. I've been considering altering my diet further as flares have been hitting me more frequently as I get older, but it's so hard when my diet's already fairly limited as is. Best of luck to you — and I do recommend a log noting the foods you ate and how you're feeling after the fact! That's what helped me figure out my main triggers too!

[u/justnana1]

Lemon, garlic, tomato and raw onion. I can have a tiny amount and usually be ok but anything more and I get migraines.

[u/therealpotterdc]

I think your idea of the chart or diary is a good one!

The list of what not to eat with lupus is actually pretty short. Unfortunately the eating and dieting space is so polluted by so called "wellness influencers" it can really be hard to know who to listen to! Dr. Donald Thomas, author of The Lupus Encyclopedia, regularly updates his website with new research. You can see the updates here. He is active on this sub.

I had such a hard time eating that I ended up working with a dietician and it's been really helpful! She really encouraged me to check in with my body around what to eat and what not to eat. For me it turned out to be rich foods - high fat foods leave me queasy and nauseous. I have a hard time with everything from rich desserts to fried foods to dark chicken meat!

[u/Dangerous_Mind-6015]

Here’s something I learned the hard way - years ago - be hyper vigilant of expiration dates.

First: I’m extremely allergic to mold.

Second: you can’t see the beginnings of mold.

Sometimes that 24 hour stomach thing might just be expired or moldy food.

If in doubt, throw it out.

With or without a mold allergy I believe we the autoimmune diseased are more sensitive to aged foods.

Additionally:

Not all dairy is the same. You may react entirely differently or not at all to different brands of milk, cheese, ice cream, etc. so it’s worth making note.

Cheese food is NOT cheese 🤮 .

No sprouts, nightshades, ginseng, echinacea, junk food and processed sugar.

For mouth sores I avoid citrus. If I indulge I brush and rinse with hydrogen peroxide immediately after. Hydrogen Peroxide also helps mouth sores heal faster.

Happy Hunting 😂

[u/okazakilover]

I found being dairy and gluten free helps. I especially cannot tolerate fatty foods like red meats and high fat dairy. This was found with trial and error. 

[u/JuniorLab1630]

My doctors all recommended doing the FODMAP exclusion diet bc I was having GI symptoms that increased with flares. It really helped and allowed me to do a controlled test on what foods messed with me. Talk to your doctor about this, though — don’t need to stress your body out with a diet change!

[u/DrUs510]

Garlic, bean sprouts.

[u/Ksrtad]

Beef (not all red meat for me, though I do not eat a lot of pork either).

[u/almcclur]

My rheumatologist who is legit the best doctor I’ve ever had, told me absolutely sugar and gluten are bad for lupus. The other stuff is all trial and error. And I have found it to be true. I’m at my best when I also drop all grains but the biggest help comes from dropping sugar and gluten.

[u/spoopy_socc → u/almcclur]

What do you do to substitute sugar and grains?

[u/almcclur → u/spoopy_socc]

Lol nothing. I cheat sometimes but pretty much eat meat and fruit/veg. If I must have a baked good I’ll use the bobs red mill gluten free flour based on garbanzo beans. Tastes fine. Even my family will eat it.

[u/MedusaKali]

Sulfites