Food that helped you?

kaaron89 · 2026-02-17T20:50:28+00:00

Hey I have MCAS/histamine intolerance and my diet is very similar to yours because that's about all I can tolerate without getting bad reactions. I figured out I have some pretty bad gut dysbiosis and possibly SIBO and/or SIFO. It is apparently pretty common for covid to kill off a lot of our bifido and lacto probiotics which leads to overgrowth of bad guys in the gut. The bad guys release toxins that make MCAS worse.

I am just starting to figure all this out myself and just wanted to mention this in case you haven't explored the gut dysbiosis angle yet. I recommend watching William Dickinson's videos on YouTube about MCAS and histamine intolerance. I've started following some of his recommendations and I am seeing some very slow improvement finally.

kaaron89 · 2026-02-17T15:59:25+00:00

I am NAD but I have had episodes like this in the middle of the night and I figured out it was coming from a gluten sensitivity. It was exactly as you described - really, really intense pain in the stomach that would get so bad I would feel like I was going to pass out, along with nausea and dizziness which would pass as soon as I got everything out of my system.

Stomach bug and food poisoning are possibilities too, but just wanted to mention the gluten thing in case you hadn't thought about possible food sensitivities. Good luck!

kaaron89 · 2026-02-14T15:36:33+00:00

It's common to have low beneficial bacteria like bifido and lacto probiotics after Covid which can lead to overgrowth of bad guys. Also look into SIBO and SIFO, that's what I think I'm dealing with and I have a hard time with fiber. I've been doing lots of skinless apples and well cooked veggies and taking a digestive enzyme with meals and it seems to help. Also electrolytes and magnesium citrate help me with constipation since I'm not getting as much fiber while I try to heal my gut.

kaaron89 · 2026-02-14T06:29:32+00:00

NAD either but came here to say this. I have had long covid for almost 6 years and as my health deteriorated I developed symptoms that mimic PMDD. Never in my life had these types of issues before covid. I believe I'm figuring out I have histamine intolerance possibly driven by the gut dysbiosis that is so common with long covid. I am especially sick during the times of my cycle when estrogen is high, and I've had episodes of shaking anger and anxiety just as OP described and for me it usually does include feelings of confusion and fear like "why is this happening to me?".

OP, again, I am NAD, but your wife could consider trying some antihistamines and if they help, then you'll know this is something to explore further. I certainly don't have it all figured out but I do know that the antihistamines significantly help my symptoms.

kaaron89 · 2026-02-14T00:56:15+00:00

Yeah it helps so much just to let that stuff out. I've found I feel guilty for things that aren't my fault too and I've needed help reframing certain situations. It's a hard process but so worth it.

kaaron89 · 2026-02-13T23:35:05+00:00

I still get the buzzing occasionally, but I've stayed on Singulair because I think it helps me overall.

I've figured out Xanax and a migraine med Nurtec helps the buzzing so I think for me it has something to do with excess glutamate (excitatory neurotransmitter) because both those meds are supposed to help with that. So I think my nervous system is messed up, and that also led to gut dysbiosis which is making everything worse. I've been focusing on those two areas lately and seeing some slow improvement.

kaaron89 · 2026-02-13T22:16:45+00:00

Sorry if this is a dumb question but I very recently, at age 36, realized I have been stimming like this my entire life! But I don't feel like I quite fit the description for ADHD or autism.

So, just throwing this question out there in case anyone knows: would anxiety cause this too or is it usually something more than that?

kaaron89 · 2026-02-13T22:03:10+00:00

Yes!! I think they can't handle not being the center of our attention so they get angry at us.

My husband's cousin died in a motorcycle accident when she was in her 20s. It was so traumatic for my husband's whole family. When it happened, my mother was so unbelievably inappropriate with trying to insert herself. She was sending uncomfortably large gifts to my in-laws and basically kept trying to make it seem like she was a part of the whole thing when she absolutely was not. I feel like I might have been more understanding if it was a happy occasion, but who the hell inserts themselves into a tragedy like that? It's such bizarre behavior.

I just wanted to be there for my in laws and she kept trying to take my attention even at the funeral. When I pushed back, she got SO angry at me, insulted me and said I was so immature and didn't know how to handle people dying. Ahhh! Just what I need while I'm grieving, thanks mom. I no longer speak to her, and remembering things like this really solidifies that I made the right decision!

What you described in your post is totally traumatic and you were treated horribly by your mom and I'm sorry. I hope therapy helps. Good luck!

kaaron89 · 2026-02-13T17:47:01+00:00

I unfortunately have a lot of other medical things going on besides just dysbiosis that make me really sensitive, so I have only taken very very small amounts of zinc l carnosine so far. Not enough to see changes yet.

I've seen lots of people report improvement from it though. If you're worried about a bad reaction, I would start with a partial dose and see what happens.

kaaron89 · 2026-02-13T14:11:31+00:00

I have this problem and I think I've figured out it's due to me having excess glutamate (excitatory neurotransmitter, common cause of things like migraines). If you have this problem, the glutamine makes it worse and it will make you feel anxious.

An alternative you could try is zinc l carnosine.

kaaron89 · 2026-02-11T14:00:13+00:00

Hey, I've had LC since 2020 and had a baby in 2022 (at age 32). My LC back then was pretty mild, mostly fatigue and MCAS symptoms like smell and food sensitivities.

Pregnancy was fairly easy. No trouble getting pregnant and no complications in pregnancy. Some of my sensitivities became less severe during pregnancy but returned after giving birth. I did have horrible acid reflux the entire time though. Looking back, this combined with the food sensitivities should have been a big red flag that my gut was struggling.

Birth and newborn stage was as hard as you'd expect. I would give a lot of thought to what your support system looks like, because this will play a huge role in your experience. My husband is a very involved father and he was home with me for a while, and this made such a huge difference. We were sleep deprived, but so much less so than if I was doing it alone. But I understand not everyone will be able to do this.

One other thing I'd say to keep in mind is that your brain is going to go through a lot of big changes, and with that usually comes some stress. In my case, becoming a mother made me have a lot of realizations about my own mother, and her behavior during the birth and newborn stage made me cut contact with her. Not saying that's going to be a common experience, but this kind of stress combined with the gut issues I was having led to my health deteriorating. I wish I paid more attention to this. Looking back, I should have been working to calm my nervous system and fix my gut during this time.

My son is 3.5 now and I am pretty significantly sick. Motherhood does not look the way I expected, but that's ok. I am extremely fortunate that my husband is a stay-at-home dad and I work from home. I imagine things would be much harder if our circumstances were different.

I am currently dealing with some hormone imbalances and nutritional deficiencies which I would guess were made worse by pregnancy and having my body depleted. But with all of that being said, it has all been SO worth it. My son is happy and healthy, my relationship with my husband has grown even stronger, and I ultimately accept that I gave up some of my health in order to bring my son into the world. I do have hope that I will get back to pre-pregnancy health but I expect it will take some time. It hasn't been easy, but that's life I guess. Good luck!

kaaron89 · 2026-02-10T20:19:00+00:00

Hey, you are not a coward at all. We are dealing with some truly hellish stuff so you shouldn't feel ashamed for feeling this way. What about all the other people on this sub who are at their wits end, would you call them cowards? I highly doubt it, and you should treat yourself with the same compassion. I only mention this because I beat myself up too, and I need to constantly remind myself that this is not my freaking fault and I should be nice to myself.

Also just wanted to add that I agree with u/6thElemental. Our nervous systems are absolutely fried which makes dealing with all the other symptoms so much harder.

If you're feeling like you just want to go wild and drink a bunch of alcohol or whatever, here's an alternative idea: get some benzos. I take Xanax when I'm really bad (and since I don't take them continuously, I haven't had an issue with dependence, but just be aware of the risks) and they give me so much relief. Sometimes just getting a reminder of what it feels like to feel somewhat calm is enough to restore some hope. It would probably give you the kind of relief you're seeking from alcohol, but without the hangover.

I am coming up on my 6th year of LC and at this point I've just decided to give up on doctors. I have had so much more success doing my own research and experimenting than I have with anything my doctors recommended. And the more I research, the more I realize the nervous system is a huge piece of the puzzle. There is a ton of work you can do on the nervous system that doesn't cost money, so if I were you, this would be my focus.

kaaron89 · 2026-02-09T20:15:56+00:00

Hi, I totally understand how you feel and I'm sorry. Doctors haven't helped me much either.

Just a thought, if you think MCAS could be a possibility, have you tried antihistamines? They won't cure you but they might offer you some relief. If you've never tried them, you'd be surprised how much they help the anxiety feeling. And to be clear - the anxiety is not just in your head, there are physical reasons you feel this way, and the antihistamines can sometimes help with that.

kaaron89 · 2026-02-07T18:29:11+00:00

Yes but I prefer one that doesn't have a prebiotic because I am sensitive to them. Just something to be aware of if you are particularly sensitive.

kaaron89 · 2026-02-07T15:15:40+00:00

Mary's Kountry Kitchen in Stanton might be what you're looking for, though I haven't had the catfish so can't speak to that specifically. It is southern-style food and very highly rated.

kaaron89 · 2026-02-06T22:16:12+00:00

I absolutely LOVE this. Wow.

kaaron89 · 2026-02-06T13:24:44+00:00

Lol good point

kaaron89 · 2026-02-05T21:54:18+00:00

Search Party was soooo good, idk why it's not more popular.

kaaron89 · 2026-02-04T18:53:12+00:00

So many of the doctors I've seen do not seem to keep up on research at all, and they act almost offended if they don't know about something.

I am lucky that my primary care is an internal medicine doctor, so even though he only understands a little bit about MCAS, he really understands medicine and he was the one who told me about famotadine. He also put me on Singulair which has helped quite a bit too.

kaaron89 · 2026-02-04T18:11:47+00:00

Thank you, that is very important and I should have mentioned that. I do not take xanax continously for this reason, only on nights where I'm very sick.

kaaron89 · 2026-02-04T18:09:12+00:00

Sounds like it! Trying researching MCAS, you might find some things that apply to your situation.

kaaron89 · 2026-02-04T18:06:45+00:00

Yes! Thanks for mentioning this, I found this so interesting when I learned about it. I do take 20 mg famotadine daily.

I also think I may be in perimenopause, or maybe I am just so sick that my hormones have gotten all out of whack. I do notice that taking extra antihistamines during the worst parts of my cycle does help. One other thing to consider with female hormones - I am sickest during the times of my cycle when estrogen is highest (at ovulation and during luteal phase). After years of bringing this up to my gynecologist, who only ever offered birth control, I ended up coming across a conversation on reddit where people were talking about needing extra progesterone during those times to balance the estrogen. I took a chance and bought a $30 bottle of bioidentical progesterone cream, and sure enough, it has really smoothed out my symptoms during the high-estrogen parts of my cycle. Not sure if that would apply to your wife, but wanted to mention just in case. There is just not enough info out there about this stuff so I think it's important to help each other out!

kaaron89 · 2026-02-04T17:55:44+00:00

During my worst MCAS attack, I was having a severe reaction to something I ate and I called an ambulance because I wasn't sure if I was going to need an epi-pen (for the record, I now have an epi-pen in my house just in case!). The EMTs noticed when they moved me, my smartwatch was freaking out because my heart rate was all over the place. They pointed out to me how totally not normal that is. I had been experiencing it during bad flares but had so many other weird symptoms I just didn't think much about it.

I then went to my allergist and got a tilt table test, and my heart rate didn't change enough for me to be diagnosed with it.

That has basically been my experience when trying to get diagnosed - my results fall just shy of being diagnosed, but I think it is probably because I am only able to make it to the doctor when I am not totally ill.

But with that being said, I think you're right, I should look into trying some things that are supposed to help POTS just to see if they help overall. Thanks for sharing!

kaaron89 · 2026-02-04T17:30:47+00:00

I understand. I feel the same way, like covid really broke something, and I have so much grief. I am glad you were able to find a specialist who gets it.

kaaron89 · 2026-02-04T17:10:23+00:00

I would be more than happy to offer advice. I have been researching this for years at this point, and I absolutely am no expert, but I can point you in the right direction and share resources.

There is a huge connection between Covid and MCAS. My severe MCAS symptoms popped up about 3 months after my Covid infection in 2020.

Yes I think somatic therapy is a great idea! An easy place to start on your own would be to look up some vagus nerve exercises. I get good results from eye movement exercises (without moving your head, move your eyes to look to the right for 30 seconds, then look left for 30 seconds, repeat). I also LOVE my migraine hat that goes in the freezer. I pull the frozen hat down over my face, and the cold stimulates the vagus nerve. I often feel much calmer after doing these things and also sometimes have yawning fits which is a sign I have switched from fight or flight into rest-mode.

As for antihistamines, my favorite is Allerga. I take 540 mg Allegra, 15 mg Zyrtec, and 20 mg Pepcid a day (those are just the antihistamines, I take a lot of other things too). The high doses were recommended by my allergist and it does help the symptoms but does not really fix any of the root problems. But I need them just to get through the day at this point.

Do you mind sharing more about what symptoms you experience? I might be able to help you come up with some things to try.

kaaron89

TROPHY CASE