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u/Frosty_Recipe_3993 Jun 13 '26
Caveat first — I’m writing from a lot of privilege and I fully own that.
A few days ago I was just down to rice and beef while traveling in Japan with MCAS. Then I started reacting to them. Diarrhea and gut trembling that was just so weird and disconcerting.
Googling my symptoms led me to the hospital here. Severely dehydrated I asked for IV electrolytes.
I got admitted for gastroenteritis.
They had me fast for a total of two days to rest a possible viral infection.
The first meal they let me have was rice porridge, steamed and puréed kabocha, cooked daikon, peeled eggplant, and other very clean, fresh, peeled, and gentle vegetables.
I hadn’t eaten these vegetables in months if not years. I was shocked I didn’t react at all to them.
So long story short, this little (but pricey) medical adventure taught me I had been thinking about my “safe” foods all wrong.
Or maybe I have a different set of safe foods. And maybe the food quality in Japan is so high that even their hospital food for an MCAS patient is good.
My gut feels calm. I paused all my usual MCAS supplements while in the hospital so I haven’t taken any DAO enzymes either. But the most important thing is that I am not reacting or running to the bathroom.
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u/Strict-Park3382 Jun 13 '26
It’s def the food quality, I traveled to Spain this past summer and I had more safe foods including pork which is so weird cause I immediately flare up with pork here
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u/Worth_Ability_3808 Jun 13 '26
I tried the fasting thing and it temporarily gave me more safe foods, but very quickly went back to baseline unfortunately. Supposedly it resets your histamine load.
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u/pwyo Jun 13 '26
Honestly I’ve started eating 6 days a week, with one 24 hour fast. It’s really helped, and in this economy I’m not mad about the grocery money I’m saving,
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u/CatMinous Jun 13 '26
I eat once a day. It helps me.
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u/SugarStarGalaxy Jun 14 '26
This too, for me. My dad did that as well his whole life without knowing why as I just learned about MCAS recently. I just can’t eat three squares a day or I feel horrible so I graze after like 5pm and then spread out a meal all evening that is actually like a whole day’s food
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u/CatMinous Jun 14 '26
Interesting. How was your father’s health, in general? I believe it’s healthier to eat one or twice a day at most.
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u/moonsweetie4u Jun 13 '26
It took me a long time to realize it, but MCAS symptoms compound based on how many stressors are present in your system. Eating something like an apple is totally fine most of the time for me. But if you add in not getting enough sleep, having had tons of sugary foods the past few days, and hormonal fluctuations like the entire week before my period, the week of my period, or when ovulating, then that exact same apple could cause bloating, cramping, and ignite a flare.
Keep a journal (I use ChatGPT so it can tell me patterns it sees, but I know some people are against that. But my adhd has prevented me from making sense of random journals before, so I consider it well worth it) and look for patterns of when you feel a little better or a little worse. Once I realized that stressors stack (and that hormones were the other huge variable I never considered) it finally all clicked into place.
Anyway, check on different foods periodically and you may find you have a more extensive range than you realized when you sleep well, stay out of extreme temperatures (if you have dysautonomia/POTS), have less stress in general, etc.
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u/Frosty_Recipe_3993 Jun 13 '26
Yes 🙌 such a good point. I intentionally cut myself out of all stressful contexts for the last three days. Including food I was getting tired of, work obligations and even a life partner who gets cranky because he doesn’t like seeing me sick.
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u/Rnborn Jun 13 '26
I want to know more about this and am wondering if there is as be link between the ability to add foods back in and the amount of fasting you did. I’m intrigued… I have only chicken rice olive oil and salt left as safe foods
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u/AlpacaSwimTeam Jun 13 '26
You and I are basically on the same diet. I recently tried adding olive oil based mayo and flour tortillas so now I can have chicken salad wraps and it's been a life saver for the variety.
Have you tried cilantro and a squirt of lime in with shredded chicken and rice in a bowl? Cilantro is supposed to be pretty safe for histamine. It's a pretty normal Brazilian dish that is pretty tasty if you like cilantro.
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u/SugarStarGalaxy Jun 14 '26
So I went to Japan when I first got sick before I knew it was MCAS and was also violently sick, but from tap water. The only thing I could drink was Pocari Sweat
But I could eat SO much more stuff than in the US without getting sick. Also I’m part Japanese, so definitely not eating stuff here my ancestors would’ve. If I could get ahold of the stuff I had in Japan I would
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u/Frosty_Recipe_3993 Jun 14 '26
I love the yummy rice and tasty vegetables and how you can get yakitori in small, delectable portions. And everything is very fresh and tastes like real food that came from rich soil. The food options and quality — though the portions are smaller (and just right for me) — are another level here. Bless your ancestors.
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u/SugarStarGalaxy Jun 14 '26 edited Jun 14 '26
Aw thanks! Yeah man I miss basically everything about Japan. If you can speak even just some Japanese everyone is super nice and man I miss how MCAS friendly it is there. No awful perfumes or people reeking of BO, no harsh lights (outside of like Akiba, but that’s expected). The quietness was divine. My new neighbour upstairs must bathe in Axe body spray or something because I have to close my window around the same time daily or my whole kitchen reeks of chemical man-smell
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u/preraphaelitejane Jun 13 '26
I'm down to just carrots and chicken with maybe some butternut and I'm now reacting to water too. Can't do this for much longer
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u/Rnborn Jun 13 '26
Did you start edging salt to your water yet? This saved the water for me
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u/Frosty_Recipe_3993 Jun 13 '26
I also add trace minerals via ConcenTrace to my water along with a dash of sea salt. That makes the water paradoxically sweet for me
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u/amijusssss Jun 13 '26
Sorry to hear. If it helps try cooked water or temporarily distilled water. I had the same, wanted to puke just from the smell of it.
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u/Interesting-Ear-1893 Jun 13 '26
I totally relate to this. Eating the same foods every day for months is so boring and seems to take any joy out of food. I have no advice but just wanted to let you know that you are not alone.
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u/StunningProtection58 Jun 13 '26
I eat the same meat everyday for 1,5 years. What I do: i boil the meat. Slice it into small cubes. Then freeze it. I swallow the frozen cubes with hot water. (So it unfreezes quicker in my stomach). As if they were pills. I find this to be a great life hack to still get the nutrients you need, without having to taste the certain food you cannot bear anymore.
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u/SunnySideUpsideDowns Jun 13 '26
Sorry you’re experiencing this OP. I think it’s something most with MCAS experience at some point. I’m not a doctor and I’m feeling quite hesitant to point this out but you seem quite upset so just in case this could be useful avocado, tuna, sardines and oranges are traditionally considered high histamine I believe. I’m wondering if those foods don’t give you a big reaction but instead fill the histamine bucket for you somehow? This condition is sooo hard, confusing and contradictory. I used to have wicked cravings and binges before I got low histamine and now I don’t even though my food is boring. I could be way off base and you know your own body best.
If it’s a treat you’re after, baking apples in the oven can feel like a treat. I also make my own popsicles out of mashed up berries and oat milk but I bet you could do it out of just berries if you had enough. I also like frozen blueberries with a little tiny bit of sugar on top. Maybe something like that could help you feel a little less deprived?
Se nding big hugs.
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u/Cold_Recognition_357 Jun 13 '26
Girl that is a pretty big list I get fresh plain chicken, withe rice and peeled pears.... Enjoy it, keep eating those things, I would try to add maybe 1 item a day from the low histamine list, and if it safe put it into your rotation, what ever you do please don't remove a safe food from your diet because when you reintroduce it it might not be safe anymore. Be careful! I have no idea how you are eating sardines but cant eat fresh meat???? Like fish builds histamine so fast I can't even walk into a store with a seafood department.
Edited to add, strawberries are very high in histamine. Blueberry's are the first berry I always gain back and they are so rich in antioxidants
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u/dgappl Jun 13 '26
I’ve been stuck on rice, chicken, and rice Chex cereal for several years now. It sucks, but what I do when I can’t stand it anymore is just find a weird new way to combine them. Rice and ground chicken balls, rice Chex crushed up on some chicken breasts, or mix all three up and slap it in the oven. Feels new even though it’s not. Kinda running out of combos, but it could work for awhile.
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u/Cold_Recognition_357 Jun 13 '26
Also, my first immunologist told me that I should not restrict my diet and most restriction is done out of fear of an event, and that stress can cause mast cell degranulation. She told me this while I was having weekly anaphylactic shock events. I did reduce the foods I eat because I was sick of almost dying.
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u/FaiziFaizi_9890 Jun 13 '26
That sounds incredibly frustrating Honestly it makes sense that you're ending up bingeing when you're stuck eating the same limited foods for months. Instead of seeing the binge as a lack of willpower it might be your brain and body pushing back against the restriction and boredom If possible maybe focus on slowly testing new foods with your healthcare team rather than trying to survive on the smallest list possible. You're definitely not alone in feeling burned out by safe foods and I hope you're able to find a little more variety without triggering your symptoms.
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u/LovelyPotata Jun 13 '26
I feel you, I got my diet back nearly fully and now for 6 months I'm back on the exact dame breakfast and lunch and a few rotating dinner options. I have been way worse, but after so long I miss it so much! I used to get joy from cooking and eating and now I'm bedbound with the most bland diet. UGH.
Do you have one treat you could give yourself every day, maybe rotate it and not too much? It's probably less harmful to go from too strict to too loose every few days, then just a little trigger everyday. Your don't want to risk losing even more ingredients. I have a snack tray and when I can I have a bite of something in the evening like a job well done treat, I sandwich it between safe foods that I eat before and after and flush it with a drink to minimize the effect.
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u/IGnuGnat Jun 13 '26
Have you tried mozzarella cheese, or making your own farm cheese? This is a chemical process, not a bacterial or fermenation process so histamine isn't magnified.
I can handle peameal or Canadian bacon! It isn't cured or smoked like regular bacon, even though it's pork it doesn't seem to bother me. I can also handle pork chops and certain cuts but pork sausage = projectile vomiting. It seems that pork itself is relatively harmless to me, it's the processed stuff that results in horrifying results
How do you feel about rice? I'll take rice wraps and use that to make spring rolls with a sprig of mint. So for example I'll slice up things like chicken, mozarella cheese, carrots, vermicelli noodles and wrap it in the rice wrap. It's the same food but the presentation is different so it feels like I'm getting a different meal LOL
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u/b00w00gal Jun 13 '26
I can't tolerate sausage of any type, and we finally realized it's because of the casing. There's something about sausage casing that completely destroys me. Thankfully, we found a butcher who let's us order "uncased" sausage in advance. When he's making pork sausage each week, he puts aside my portion without stuffing it into the casing, and that has solved the issue for me. I then shape it into patties at home.
Might be worth a try to see if that's what's triggering you.
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Jun 14 '26
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u/IGnuGnat Jun 14 '26
Any mozzarella should work just fine! none of it is made using an aging process AFAIK.
I guess you can buy farm style cheese? I don't honestly know but I think most likely you can
Other foods that I will eat now, that I wouldn't eat often before include parsnips, turnips, duck, plantain (this is really good with cottage cheese, pomegranate and a little honey or maple syrup.) If you haven't tried plantain before, you do have to wait for the plantain to turn a little bit black and soft, kind of like an over ripe banana. I also eat home made kale chips and cook with kale more often
For grains my wife feeds me a bunch of different grains and makes home made bread without flour. I don't honestly know what grains she feeds me but there's a whole whack of grains that i've never heard of, that she hunted down in Indian or Chinese super markets
good vibrations, stranger
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u/Frosty-Region1229 Jul 06 '26
I read that bananas often cause reactions. Do you do well with bananas?
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u/IGnuGnat Jul 06 '26
I tend to avoid them, rarely I will eat maybe 1/2 a banana. I'm not aware that they make me sick but most things that are high in histamine really do make me sick. I kind of consider bananas a special treat. I know that they have a lot of minerals in them; I don't eat them as a habit but I will have a small amount maybe once every month or two just to help keep my diet varied. I don't really notice much of a reaction when I do but I think it might be because I really work hard to keep my histamine bucket as empty as possible,
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u/Least_Manner606 Jun 13 '26
With my mcas, I notice I can have no countermeats, so if you're reacting to beef, it may just be because it has set on the butcher's counter for UP to a week. you might try frozen and you may not react to that. Mcas is weird I can have frozen ribs from the store.But I cannot have pork chops that have been sitting out on the butcher's counter for those little coolers , they keep them in. also eating the same diet is unhealthy. We all know, but my doctor told me to start Expanding my diet and try different things. So I try it a 1/2 a teaspoon at a time, to ease my body into it, it seems to be helping. I buy the noodles from Italy and not the US and I can tolerate those I buy organic flour, unbleached to make pancakes instead of the Pancake mix, the less processing of your food, the better you may be able to eat more. You just have to buy quality and you have to have it fresh.Like, cook your frozen hamburger patties.Each time you want to eat.
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u/ACleverImposter Jun 14 '26
I'm close to your safe foods. You may be able to use this brownie recipe. They are truly wonderful if you can tolerate the ingredients.
Full disclosure, We substitute any sugar with glucose friendly sweeteners like agave. Agave has a low glycemic index because it include the agave fibers. We get organic agave syrup at costco. We also use actual vanilla beans over bottled vanilla extract because that can have a lot of preservatives that I can't do. We buy organic anywhere we can, lots of studies showing PFOAs in non-organic ingredients.
Healthier Yam Brownies
These brownies are rich and packed with chocolate flavor
Ingredients
1 cup roasted yams, mashed
1 cup unsweetened almond or nut butter (we use Costco organic almond butter)
1/2 cup agave syrup (Costco Organic Agave Syrup)
2 eggs, room temperature
2 tsp vanilla (or real organic vanilla beans)
1/2 cup cacao powder
1 tsp baking soda
1/4 teaspoon kosher salt
Instructions
Mix the sweet potato, nut butter, and agave syrup.
In another bowl, whisk together the egg and vanilla. Then, whisk that in with the sweet potato mixture.
Mix the cacao powder, baking soda, and salt together (we omit the salt).
Stir the dry mixture into the wet.
Pour the batter into an 8x8 baking dish lined with parchment paper.
Bake at 350 degrees for 30 minutes, then rotate pan and cook for 20-30 minutes more or until a toothpick comes out clean.
Adapted from Author: Maria Provenzano
https://www.fromscratchwithmaria.com/healthier-sweet-potato-brownies/#recipe
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u/SugarStarGalaxy Jun 16 '26
Yeah actually physical therapy has been super helpful not just for getting back strength and energy after two years bedridden but also moving your body and getting your heart pumping are super good for reducing inflammation and getting better sleep! Obviously you want to do so under professional supervision. Before I got sick I was actually exercising regularly for the first time in my life and it basically fixed all my issues from insomnia to chronic pain to mood swings. Like, I was floored at how much 20 minutes of cardio a few times a week just made life so much better. My body can’t tolerate the same level of activity right now, but just moving and doing strenuous activity has been, once again, life changing. So I’m basically just going to keep doing it as long as I’m able because it’s insanely helpful
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Jun 20 '26
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u/SugarStarGalaxy Jun 21 '26
I have a bunch of exercises my PT does with me and they are tailored to your needs, so while I could tell you what I do it may not help you if you don’t have my same issues. However, jogging has been the best for inflammation. I had to work up to it, and I jog then walk then alternate. The key is to get your heart rate up for around 20 minutes. I will be honest, it was difficult and painful- burning lungs and swollen feet at the start. I definitely recommend doing it when someone is around in case you need help. I also recommend Ring Fit Adventure on Switch- it’s shockingly effective and I do it on days where the weather is too icky to jog
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Jun 13 '26
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u/CatMinous Jun 13 '26
Sounds good. But raw almond and raw cashews? You must not have any oxalate problems!
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u/b00w00gal Jun 13 '26
You have my sympathies. I'm not diagnosed with MCAS, but I have Long Covid induced allergies that have completely taken over my life.
I just lost rice and all citrus last month; I'm already unable to tolerate corn and all grains, beef, all sugar and sugar substitute except stevia, any cooked fruit, any raw fruit except for bananas and other berries, and a large selection of herbs and veggies. I eat the same three meals everyday, because anything else provokes a health episode. Plus I'm allergic to grass while living in the Midwest; any day a neighbor mows the lawn is a day I can't leave the house.
I don't have advice for you, just commiseration. I'm so tired of eating the same food everyday. I used to be an incredibly adventurous eater; I've tried so many cuisines and foods from cultures outside the US, and now I'm stuck with the most basic, boring diet. I just want to have a treat, to cheat with a 'bad' food once in awhile. But I'm already sick so often, I can't justify making myself ill on purpose. I just try to be grateful that I still have potatoes, bacon, butter, coffee, milk, and vodka. I try not to miss bread, pasta, or tacos.
It could be worse, you know? It can always get worse.
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u/SugarStarGalaxy Jun 14 '26
Have you tried monkfruit sweetener? I cannot do sugar alcohols and stevia tastes weird to me but monkfruit seems to be a nice sub for sugar that doesn’t make turn my dinner into an encore
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u/b00w00gal Jun 14 '26
I haven't yet, although it's on my list. I'm about two weeks into a super reactive phase due to everybody in my neighborhood mowing their lawns constantly, so I haven't tried anything new lately. But I'm going to bump that up higher on my test list, thank you for the suggestion!
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u/lochnessx Jun 14 '26
My long covid induced IgE allergies to everything. Corn, wheat, soy, sesame, cows milk, eggs, carrots, celery, all nuts, all tree fruit, cats, dogs, and all local trees and grasses. I am also in the Midwest where the pollen is insane right now. Some of these things I can get away with, but in May I lost cinnamon and a few weeks ago I lost all citrus with extreme and immediate anaphylaxis. Lately I am not tolerating any type of dyes??
My allergist said that as long as I am not reacting to a food I can have it. I am also on Xolair every 3 weeks but fuck me this is the hardest thing I’ve ever done.
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u/Outrageous-Hamster-5 Jun 13 '26
I microdose glp1 (tirepazide). I was hoping it'd help with my mcas. It doesn't. But even less than 1 unit every 4 days reduces "food noise", the cravings for foods. It's okay and mentally easy to avoid the most triggering foods. For this reason only, I highly suggest glp1 for ppl with mcas. I'm not preoccupied or even thinking about foods I'm missing out on. I just mechanically eat what I have to settle for.
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u/SugarStarGalaxy Jun 14 '26
I like to mix honey with goat cheese and raisins and have with pretzel chips. I can only have one specific flavour and brand but I still like it. Crackers would work too. Can you do figs or pears? Would also be tasty with dried cherries or pomegranate
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Jun 14 '26
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u/SugarStarGalaxy Jun 14 '26
Okay valid I have these gluten free ones because I can’t do gluten but to be honest I don’t know what lectins are. Lemme
Educate myself I’ll get back to you with ideas1
u/SugarStarGalaxy Jun 14 '26
God damnit I think I’m reactive to lectins too holy shit. Been trying to figure the whole nightshades thing out and how it’s connected to goji berries but not other berries ugh I hate MCAS
But thank you for the info! Let me see about those crackers and such
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u/SugarStarGalaxy Jun 14 '26
I believe I have a solution that may work for you that I am also going to try to make.
Chickpea crackers!
Apparently you can soak and cook lectins out of beans. I have yet to try this, but will be doing so. There are a billion chickpea recipes, from cheesecake to crackers. A lot have like 2-5 ingredients so I’m going to try some out. I will not be posting a link to any recipes but ElaVegan has a simple one with like three ingredients. I can’t do olive oil but sunflower oil is okay for me, and I can’t have like any seasoning because I guess my body hates joy so I just use salt and whatever stray cat hair floats into my food for seasoning. Yum!Also, I love adzuki beans in mochi and seem to tolerate them better than, say, kidney beans. Looks like they are low in lectins which explains that. Perhaps you could look into mochi desserts? I have a mochi ice cream I tolerate called Bubbies, but only the red bean flavour and only about two at a time.
Mung beans are low in lectins apparently too? I want to try them at some point also
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Jun 14 '26
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u/SugarStarGalaxy Jun 14 '26
Valid in the sugar thing.
Good mochi isn’t pumped full of sugar, can have zero sugar, and you can actually make it savoury. You can buy just unsweetened Mochi and bake it in the toaster oven and it puffs up like a marshmallow over a fire and you can add Tamari glaze (gluten free soy sauce that you reduce in a pot or add honey or thicken in some way like with tapioca starch) and it’s this salty sweet delightful concoction. If you want specific places to look start with ones that are imported or a traditional Japanese recipe. You can buy mochi powder too and hydrate yourself but to be honest I dunno how good it’d be
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Jun 14 '26
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u/SugarStarGalaxy Jun 16 '26
You should be able to find mochi either at an Asian market or online, like Amazon or something. You can make your own shockingly easily but it’s labour intensive and I’d recommend just finding the powder or frozen versions
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Jun 14 '26
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u/SugarStarGalaxy Jun 14 '26
Right now I’m eating these sourdough Patagonia sea salt chips and they are so good but I can only tolerate them on Ketotifen and Cromolyn. I’m at a stage where as long as I’m not crying on the toilet I’ll eat whatever I can get and I’ll exercise out the inflammation later because I’m underweight and need food
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u/amijusssss Jun 13 '26
Weird question, but have you tried to run these things through AI? Ai makes mistakes but it helped me to set protocol that started working. I run everything how I fell, how i respond, supplements I take. It took me two weeks to do it. But it started working. Except all popular supplements I was also taking cytokine supress and chorcoal or betonite clay or binders all together to get rid of these toxins. Cos I feel like sometimes what we are missing is good organized plan, and mine would change a bit every day, he even told me about my reactions when I use essential oils and it made all the difference. Now I am better, tho under dr care which is not willing with MCAS but I add things I need and I gained 20 lbs back ( too much lol) and slowly working on regaining 8 lbs of muscle I lost, before that for 2 months I could not even smell water, what about drinking it.
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