r/MCAS

I miss my life. I miss how my body used to be. I miss being able to wear makeup. I miss being able to drink coffee and eat chocolate. I miss being able to travel. I miss being able to get my hair done. I miss being able to go out and not react to perfume even from 50 ft away outside. I miss being able to put things on my skin. I miss my career that I had to give up. I was a D1 athlete and now can barely run.

My MCAS has become severe and progressively worsened over the past few years. I was just in a severe flare for over a year. No medication really puts a dent in symptoms. I find the medicine is far behind and lacking. I am only 31 and have already been dealing with this for 5 years. Doctors seem completely lost.

Sorry to be a downer, but this has just really been getting to me lately.

I’m tired of tests. I have “suspected” MCAS. Told my immunologist no more tests. I have severe episodes of flushing, hives, swelling, violent diarrhea, near fainting sweating though my clothes and tachycardia. I don’t wanna put myself through more flares for blood tests. My eyes were swollen for 3 months. I get intense chronic fatigue, brain fog and malaise. I’m tapering off prednisone and it’s horrible. Dr suspects I gave adrenal insufficiency bc I’ve been on so much prednisone. I’m on 4 Zyrtec a day 4 Pepcid a day 2 Rhapsido a day. I had a good couple days. Had some hives but they didn’t spread, had a dry sore throat that didn’t escalate. I’ve been eating strictly low histamine and it seemed to be helping. Then yesterday j started getting migratory joint pain again. Idk if that’s MCAS or what but I couldn’t walk last night because my knee was so bad. Now today it’s moved into my elbows and ankles. I ate a low histamine dinner and immediately was nauseous, sweating and stomach cramping, impending doom and racing heart, no severe diarrhea so maybe that means the meds are working. But the joint pain is debilitating and severe. Is the MCAS or adrenal insufficiency or what?

Just as a head's up a bunch of companies are changing food dyes as part of RFKs nonsense and it just hit Gatorade here. The fruit punch now says the food coloring is "fruit juice" but doesn't say anything at all about WHICH fruit is being using. I emailed them to ask but I am betting I don't get an answer OR get an answer like "depends".

Just a wanted to let others know in case you missed the way the color looks different and I know the MCAS/POTS crossover is high.

I'm definately healing and getting better, but not there yet. But been able to eat so much better lately.
The weird thing is that I'm now able to eat almost anything and the things that still trigger me a bit are not even high histamine foods.
SO Ive been eating pizza, even drinking wine a bit, avocado, chocolat, wheat, sugar, pastries, pasta, tomato, all of that....I'm pretty good.

BUt then I get this huge reaction to a sip of coconut water which isn't even suppose to be high in histamine, or some type of nuts I reacted to (stomach pain and itching) when they contain no histamine.

Truely, it's so random!!! I had so long where I didnt even have any safe foods at all, zero. I'd starve myself because it was that bad. So I'm grateful and I know what I'm doing is working and I dont want to complain but I can't help but now question this whole histamine thing.

So I am having histamine reactions to non histamine foods? But no reaction to histamine foods. Like...how?

To be honest I think some days it's just eating, just eating triggers

Hi everyone,
I’m curious to hear your thoughts and experiences on something I’ve been wondering about.
For those of us dealing with MCAS, ME/CFS, post-exertional malaise (PEM), and other unexplained chronic symptoms, has anyone explored the possibility that a persistent or difficult-to-detect infection somewhere in the body could be contributing to the development or worsening of these conditions?
For example, what if someone has had a recurring breast abscess, a chronic dental infection, a jawbone issue, or another localized source of inflammation for years? Could a persistent infection or the immune system’s ongoing response to it potentially contribute to systemic inflammation, immune dysregulation, or symptoms that resemble or worsen MCAS and ME/CFS?

I am struggling - I struggle to fall asleep and then 3 to 4 hours later I am wide awake - more awake than I am during the day. I’m up for 3 to 5 hours most nights and then go back to sleep and when I can will sleep and get another 3 to 4 hours typically and wake up with a panic attack - or I have to get up for my alarm then I don’t get the panic attack but am just tired. I have so little energy and I need to be exercising but I just don’t have the strength to. And the brain fog is a struggle too.

I have MCAS, hAt, ADHD, PMOS, and chronic migraines. I’m in my late 40’s.

Currently taking Claritin, Pepcid, Guanfacine, Chlorthalidone, Xanax (this at least helps me fall asleep), seasonique, seed probiotics, aspirin, ubrelvy, armor thyroid, and Zepbound.

I’m so tired and not sure what to do! Please help!

i have a bulging disc in my neck that is super flared up, muscle involvement now and possibly pinched nerve causing a lot of pain down my arm. what can I safely take for pain? I’ve always heard NSAIDs are a no-no. what can we take for anti-inflammatory that is MCAS safe?

First time doing skin prick testing and off my antihistamines and mast cell stabilizers for 5 days before hand and I feel AWFUL. How r yall getting thru this ??🥲🥲 all I got is nasal rinse and Flonase and safe foods .. and my air purifier but still dy1ng🥲 any tips?

The constant itching burning and tingling is driving me crazy. I have constant facial rashes and dry skin and flushing and tight throat and everything hurts so badly and my body and head have internal vibrations and it feels like my eye is gonna explode. My mouth and eyes and skin are so dry. I’m so miserable and my chest hurts so much. I’m so many antihistamine but I don’t think they’re helping anymore and I can never sleep it seems due to how horrible the itching and burning and tingling and nerve pain. My swelling in the evening is so bad too. I can’t tolerate cromolyn and I’ve seen three immunologist me who say I’m too complex and won’t help me either. It has been years of this and I can’t tolerate steroids. I’m only tube feeds, but I feel like I’m gonna die all the time I’m so uncomfortable all the time. It has always been three years and my throat alway feeels swollen. I cannot do this forever. I’ve never even had a life

So one of my main issues is this constant epigastric burning that comes on after coffee or food. Quercetin gets rid of it entirely but it gives me a migraine. I tried PEA.. 300 mg a day... it absolutely gets rid of it too but after a week I got the constipation I see a lot of people on here complain about. I stopped it for now so I can poop. Was anyone successful in taking PEA with the constipation? Lower dose? Different formulation? I was taking the Life Extension tablets. Was breaking them in half. Ordered the nootropics micronized powder in hopes that maybe it doesnt do that.. But any input on this would help a lot. Thanks

My doctor gave H1 and H2 for now but they're making my symptoms even worse. I'm probably reacting to the binders or colors. I'm down to one food white rice. I am starving. The only thing that gave me temporary relief was hydrocortisone IV. My histamine intolerance causes high heart rate, palpitations, insomnia and constant lightheadedness. I'm worried my heart won't be able to take it for so long. It's been a month, I'm very weak and sore. I'm trying to get an appointment with my doctor to ask for cromolyn sodium. Day by day the situation is getting worse. I could tolerate a couple of foods until a week ago but now I stopped tolerating them.

will try to make this brief. i was diagnosed with pots and heds several years ago and mcas about a year ago. i hadn’t been doing particularly well to begin with but a couple of months ago the mcas flared really badly for the first time after having been given the antibiotic cipro. i have struggled to tolerate pretty much any meds except antihistamine and ativan. my diet quickly became extremely limited. for several weeks it was just rice and squash. i have been able to add a few foods but i am still very reactive. i couldn’t find an electrolyte mix that i could tolerate until very recently but even so if i take more than a couple sips an hour i end up throwing up, headache, and sore throat. i have labs that establish i am pretty malnourished, essentially undetectably low b vitamins, and very low on electrolytes. i have very little support and have been having to do a lot on my own. i am staying with my parents while my house is under construction to address the huge mold problem we found. i have to drive back to my house daily to feed the animals i wasn’t able to move with me yet and i have been trying to trap a cat all hours of the night. when i do this i become so exhausted and sick that i just feel like i physically cannot move or think for 2 days then just repeat cycle. i had missed a period probably due to lack of food and then just 2 days ago started bleeding incredibly heavy which has been worsening pots symptoms and causing me to faint more. today i woke up with i guess the stomach flu that my parents didn’t want to bother telling me they had and i am having very frequent diarrhea and very nauseous. there is so much going on and i just don’t have real support and i feel just at my limit. i was already going through a lot of difficult emotional issues prior to becoming so sick and just feeling so unsupported and exhausted and misunderstood has driven my suicidal thoughts to a pretty unbearable point. but i don’t feel like i have any real options there either. i worry if i seek inpatient care they will either be unable to accommodate my physical health issues or will just straight up dismiss them as psychiatric and i will get sicker in there. has anyone had any okay experiences with psych inpatient being able to manage their mcas or other physical conditions? i just don’t know what i could even do to help myself right now. i am just wishing so badly that this could all end.

Hii guys I have mcas and im trying to figure out my root cause. I have lymph node swelling, throat pain, constant fatigue, body aches, random allergic reactions to food (mcas reactions), headaches, anxiety, gut dysbiosis and recurring vaginal problems.

Anyways I am trying to figure out what the underlying issue is and I’m thinking chronic Lyme bc I tested positive many times for it. I guess I’m just wondering if people found their root cause and what it was/how they cured it.

I am hopeful, we got this guys!!!! Just have to find what is happening underlying and hopefully if we solve that we can limit mcas symtoms??

I wonder if cromolyn would also help with SIBO in the same group.

My MCAS has been well managed for a year, and my doctor supported me trying for a baby. I did EMDR for the trauma I have around all the years of undiagnosed, uncontrolled MCAS and felt mentally ready. Or so I thought. I’m now about to be six weeks pregnant, and the symptoms, particularly the nausea, have been so triggering emotionally I can barely handle it. It just takes me straight back to all the times I had terrifying symptoms and no relief or idea what was happening. I’ve wondered how I can go on with the pregnancy. Would love to commiserate with others with MCAS who are or have been pregnant.

Hi. So I am on the hunt for more of a root cause for things I have been diagnosed with pots and gastroparesis and yesterday this new doctor wanted to test me for MCAS I never thought I’d fit that because I don’t have all the stuff I see online. However after looking into it some of it adds up! I have a question does anyone ever have like lots of mucus build up after eating and like racing heart rate etc, I need to pay more attention I ate something semi spicy today and it’s happening but I swear i think it happens when it’s not spice because I even remember thinking man this is annoying not that long ago, like so much mucus I can’t talk sometimes because it’s all backed up and it’s in a matter of minutes after eating

I was getting severe throat closing feeling and sore throat, ear aches and pains, and like mouth sores feelings.

It stopped after the switch omg!!!!! I can’t believe it! THANK YOU!!!!!!!!

Finally found my first trigger! To stay away from. 🥹😭