r/MCAS

I eat sweet potatoes every single day and it’s one of my “safe foods”. Never made things worse. Today I got a snack made of ONLY dried sweet potatoes. Nothing else. No additives or preservatives or anything. As soon as I put one in my mouth abdominal cramping started followed by rushing to the bathroom. Is it because they were in a different form? Literally crying

Hello all, I've been dealing with mcas symptoms for quite some time. I have about 7 safe foods and am on cromolyn sodium which helps alot but isnt perfect.

Still undiagnosed and have bounced around so many dismissive doctors. I manage to find a gastro doctor who finally said I could have the possibility of MCAS and scheduled a colonoscopy/endoscopy.

I've never but put under anesthesia and I take a good amount of cannabis for sleep, pain and as a mast cell stabilizer. I'm afraid the anesthesia won't work and prep might put in a flair undoing all recovery I've worked so hard for. I REFUSE to stop taking cromolyn sodium for anything bc it has helped significantly much in certain areas.

I've been reading posts but I'm struggling to convince myself if it's worth going through all of it just for a slight chance of diagnosis and to be taken seriously by doctors. On the other hand I have a horrible feeling I will go through all this prep/procedure and the suffering for them to tell me they didn't find jack shit and it was all for fucking nothing.

It is worth the risk? Thank for any input.

I have tried to make such a list before, but it is super long and people hate nuance like “I can have a bit of avocado on a salad, but like 2 times a week, not more “

Anyone have *good* examples that have worked well? Right now I am thinking I will just send recipes.

My friends love to cook and love me, and really want to make it comfortable for me. (Very lucky for them)

ETA: PLEASE READ - I AM ASKING FOR EXAMPLES SO LIKE TEMPLATES I AM NOT ASKING FOR AN ACTUAL LIST so you dont need to tell me everyone is different.

Thank you to the people who read it and gave helpful advice!

I (33yo female) have been dealing with a sudden onset of issues since January 2026. It coincided with an androgen blocker I took for a while (1.5 years?) and stopped, as well as a couple rounds of antibiotics for dental issues.

TLDR- does MCAS cause heightened sensitivity to things that didn’t used to be painful?

Symptoms include:

- Sudden onset of migraines with visual aura primarily during ovulation (or the few days leading up)
- other headaches and light sensitivity
- an extreme intolerance to caffeine when I have been drinking a lot daily since puberty - I develop tachycardia and PVCs in response to only a little bit of caffeine , had to go to the ER multiple times before I figured it out
- very heightened pain sensitivity - I used to regularly get waxed and electrolysis but now they’re so painful I had to stop
- heightened reactions to all supplements and medications - Zofran gives me tachycardia now, magnesium theornate I have to take 1/3 the minimum dose and it works too well, progesterone cream I have paradoxical activating reactions to now when I tolerated it fine for years , etc
- my last few routine blood draws have been very painful, and I even got an injury from a standard IV ??? (Nothing visible on outside but whole arm hurt for 2 months afterward)

About 5 years ago I was treated by a naturopath for histamine and leaky gut issues but primarily manifested as stomach symptoms in response to certain foods. It completed fixed all my stomach symptoms and it was a miracle as I struggled with it for a decadeI and people always blamed it on my anxiety. BUT I NEVER had neurological or HR issues related to histamine before.

But a month ago my psychiatrist brought up MCAS as a possible unifying issue and i restarted taking Xyzal and started daily pepcid. It has cut down on headaches for sure.

This could all just be related to me having depleted allopreg levels caused by the stupid androgen blocker but this is all so new to me I wanted to get thoughts.

Hello! I’m a young adult who has been struggling with what I’m pretty sure is a mix of MCAS and HEDS, as my symptoms closely align and my mother if diagnosed with those conditions. Whether or not that is exactly what it is on paper, my inability to move, eat, and get restful sleep is constantly compromised. These issues started up in my freshman year, and I ended up dropping out of school and having to get a GED because my pain was too severe. I had such high hopes for myself as an athlete, but when you can’t get nutrients or reliably exercise or move those dreams get dashed pretty fast.

My therapist has told me i realistically need to accept that I’m disabled, and probably always will be to some degree. That I’m not going to be able to do the highly physical jobs that make me feel fulfilled because it’ll end up hurting me and I can’t eat enough to make up the calories. It’s really devastating me because I’m in worse health than my mom with MCAS HEDS and POTS. While I keep trying everyday to get better, it feels like it doesn’t truly improve at all. My pain has been lowered now that I’m on cromolyn sodium, but it’s not even my own prescription, my mother has been giving me hers. My nerve sensitivity is gone, but my joints are still agonizingly inflamed and my stomach is delicate as a daisy even on my low histamine low nickel diet.

I just want this to go away, I want to be able to ride horses and teach kids how to do the same. I would like to be able to attend my college classes in person, to be able to push through the pain. But I don’t think I can. I need to know if anyone else has felt this block, how do I make the feeling of un-fulfillment leave my chest while my body feels like it’s actively failing on me? I can barely stand up long enough to shower without pain medication. Every time I start regaining the function to do what I love it’s only a matter of time before I crash and burn. How do I push through the pain? Is it possible, or is it something I’ll always have to adapt my life to?

Sorry if formatting is off I use mobile. Let me know if my post doesn’t fit since I’m not officially diagnosed, and I will delete it. Officially my disorders are GERD, Hypermobility, Visceral Hyperalgesia, Functional Abdominal Pain Syndrome, Asthma, and IBS. My current doctors think that it’s just a nerve issue, but considering it’s almost never triggered if I don’t eat or breathe in the outside air its at the very least an allergy response. I have a visit with the family physician my mom saw that helped diagnose her in a few months.

I developed mcas after a covid infection 2022. First 2 years I couldnt function or even knew what drs or routes to take. Now im working full time, and have minimum if not any symptoms. Every now and then I will have a flair up from something though. This last weekend I went out with friends and had about 5 white claws in a 9 hour period. I didnt feel intoxicated. I went to bed and I felt fine before and woke up with a huge flair up. Anxiety, blood pooling, hyper adrenaline pots like symptoms. I realize alclhol is a big no no with mcas. My question is how is this now the only thing im reacting to? My biggest help with mcas over the past 2 years has been tirzepatide and remeron for those wondering what im taking. Hydroxyzine also in the mix but havent taken that in probably a year.

Rupatidine is an antihistamine, that supposedly also has mast cell stabilizing properties. It is freely available by prescription in the EU, and Canada, and probably Mexico, but not approved in the US. Has anyone had any luck sourcing this from online pharmacies?

I’m pretty sure I’m having a pretty bad systemic reaction to creams that were put in my ear and I can’t call the ENT to get it out of my ear until tomorrow and I can’t flush it with water because it will worsen the swimmers ear that we are trying to treat. I think I’m reacting to the steroid. I don’t do great with steroids.

I’m doing Benadryl around the clock on top of my other antihistamines but I can’t even eat or the reactions are getting worse.

Starting to panic a little because I’m waking up wheezing. I used my inhaler last night and I think I reacted to it or something because I felt worse when I woke up.

How do I know when to use epi? I’ve never had to use it but the wheezing is really scaring me. It’s off and on and Benadryl helps but when I sleep it gets bad

It’s causing a systemic reaction, probably because I reacted to several different antibiotics they tried for swimmers ear the week before so now my histamine bucket is overflowing. Can’t even stand to be around my cat, I feel so bad making him leave me alone.

I have my air purifier going in my room. I don’t know what else to do 😭 I haven’t been this hypersensitive since everything first started years ago

I’ve been getting itchy after my protein drinks occasionally too and that’s the only thing keeping me going

I get xolair every two weeks and I’m on MAX antihistamines daily already with Claritin x4 and 20mg Pepcid x2 a day plus singulair
Thank god my xolair shot is on tuesday 😭
I really need to see a specialist

But how do I know when to use epi?

Hey, everyone. What do you know about the possibility of NSAIDs increasing histamine responses?

Any links to research, news articles, and personal experience would be very appreciated.

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Some of my personal backstory:

One specific allergy trigger keeps getting worse and it has escalated to the point of danger and madness. ...and now my persistent symptoms are so bad I don't know what to and I am also wondering if I am reacting to new things as well... I am in crisis and trying to figure out what is causing this or how to get out of it. I just started reading about the NSAID thing and am wondering if this issue is in play.

I have chronic pain due to a genetic condition and acquired illnesses. I have been on daily aspirin for a few years now. It helps immensely with my joint pain and allodynia. In the past year, I have also been Rx'd celebrex, as needed, for severe migraines. I have been using it probably about 1x every 3 days. It is by far the most effective migraine med I have ever tried, with *seemingly* no side effects, AND it started helping with a lot of disabling symptoms from some of my other health conditions.

I am also on a LOT of other OTC anti-inflammatories and thinks to help with pain (eg high concentrated fish oil, high dose Magnesium). These all help a lot but I am still in sleep-ruining and life-ruining pain. Just to say, I am not solely relying on nsaids and think I could replace them with more dietary and OTC stuff because I'm already doing those.

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I’ve had histamine issues since stopping ssris and covid in 2020. Referred to immunology in 2021 and batted off with a letter telling me histamine intolerance doesn’t exist. Since then I self manage with Loratidine and famotidine and generally ok if I’m careful with what I eat and avoiding triggers. Around four weeks ago, I started getting patches of hives after the gym. Doubled the antihistamines and that mostly resolved. Fast forward to Tuesday and this is how I progressed through the day. Saw the dr, was given 30mg prednisolone for five days and fexofenadine. Had to call out of hours dr on Thursday at 1am due to wheezing and dizziness. She prescribed clorphenamine and told to take to help me sleep. It didn’t. So I’ve been taking steroids, fexofenadine, Loratidine, citirizine, clorphenamine and famotidine the last five days and nothing is working. My entire head is covered in hives and lumps. I’ve been strict low histamine diet the last few days (chicken, rice, broccoli, gf oats) and it’s worse today than it has been. Throat is itchy and sore, skin is on fire and my anxiety is through the roof. I have quercertin arriving today from Amazon but I genuinely don’t know how to get this under controls I go to Mallorca in ten days and I don’t actually know if I can 😭

When I say I titrated meds slowly… I mean ridiculously slowly and I only figured out to do this after suffering for about 4 years.

I finally learned I needed to trick my body into accepting meds and it’s a damn good thing I figured this out around the time I trialed Ketotifen because it’s a game changer.

What you first need to understand is that at this point I was only eating about 6 foods with just salt and no other spices because everything - including the food I was still eating had my body freaking out. That’s how screwed my body was. Food, stress, air … everything was a trigger and the hell it triggered was insane.

I had 27 symptoms I’d counted at one time. 27 serious symptoms like ataxia preventing me from walking without assistance, and burning bladder syndrome - I was in diapers for this.

Diapers.

The mast cells in my bladder area were freaking out.

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Before learning to titrate my meds - in desperation, I took prednisolone for about 6 months (never more than 10 mg a day, usually 5) - just to avoid being bed bound - and at the lowest possible dose that was moderately effective for me which was normally 5 mg.

About 5 mg a day helped me tremendously to function, though far from ideally, but I knew I couldn’t keep it going long term due to the overall negative impact to my body.

So, I used the prednisolone to help me on-ramp the Ketotifen first. My thinking was to keep the prednisolone going to keep my body from rejecting the medication and to start with a medication that would stabilize my mast cells (Ketotifen).

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I started Ketotifen with one drop. I needed this to work and I’d learned that I’d need ketotifen to integrate into my system without freaking my system out.

One drop for one week.

Two drops for two weeks.

Three drops for three weeks.

All taken before bed.

The process was slooooow. And it’s the best thing I’ve ever done for my health. If I’d tried to rush it, my body would have freaked out and I’d be in the same cage of ailing health I was in for years.

Today I take 4-5 mL per day. It doesn’t make me sleepy. That is ONLY because I titrated painfully slowly - because let me tell ya - everything makes me sleepy.

I have what is called “drug hypersensitivity” and altered blood–brain barrier permeability – my blood brain barrier may be more “leaky” or permissive than usual. I also have an increased neurotoxicity susceptibility – meaning I experience neurological side effects at doses most people tolerate.

So when I tell you I titrated painfully slowly - it was my only hope.

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Once I got the ketotifen going at full dose (2 mg per day - and this took many months to reach 2 mg) - only then did I slowly reduce the prednisolone until I reluctantly stopped it entirely. I remember clearly being so afraid I’d have to jump right back on the prednisolone.

But to my astonishment, the ketotifen was working considerably well on its own - enough to keep me functioning moderately well without prednisolone’s support.

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Then I began trialing other meds and, through a number of trials that did cause a fair deal of suffering at times, I found the meds I’ve listed (Ketotifen, rupatadine, and pantoprazole) as working for me.

There was no fairy godmother.

I also learned to treat myself as a science experiment. With each drug trial, I would state my hypothesis and record everything I could observe daily.

I will forever take this approach to my health care because I can tell you one thing - doctors weren’t figuring this out for me. They were doing the opposite- telling me it was anxiety and depression. Denying the pain. Never following the thread of ataxia and burning bladder syndrome to its root cause. That was the worse part of it all - dealing with medical “professionals”. Over 4 years I probably saw about 50 doctors - taking long breaks in between to recover from the mental strain seeing them resulted in. My favorite doctors were in Greece. They too didn’t know what was going on, but they were compassionate - and compassion goes a long way when no one has answers and it’s all you’ve got.

It was actually my long time psychologist who suggested this was long covid and MCAS. Then, I learned through AI it was also POTS and EDS.

My psychologist suggested I attend a MCAS meeting - you can find those online - and that meeting changed my life. I saw how people were treating their illness so I went to a country where I could find the meds they were taking - Serbia. Ketotifen is about $3 a bottle there for 100 mL. They have rupatadine there and I don’t think that’s in the USA. So rupatadine is both an H1 antihistamine and a PAF receptor antagonist.

The PAF-blocking activity may contribute to its anti-inflammatory effects, although the clinical importance of this compared with H1 blockade is still being studied. This dual mechanism is one reason rupatadine is sometimes considered unique among second-generation antihistamines.

The pharmacies in Serbia aren’t strict about prescriptions so I was able to quickly trial meds and sort through which my body would (likely one-day) accept. This would have taken me years if I’d have had to see a doctor, get a prescription, find it blows up my system … over and over … it would have been years until I’d finally discovered what works for my system. Years and more money - oh, the cost of this illness has been EXTREME.

In Serbia, and keep in mind I’d already had this illness for four years so I’d learned a lot about my body and meds in that time, I could manage my own healthcare. That was key. I used AI to determine if something just needed a few weeks for my body to adjust, or if it was unlikely to ever accept the med. AI isn’t perfect, but it was very helpful as I questioned every reaction throughout my process.

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Also, I use AI to check AI. I don’t just trust what it spits out. I also ask it for links so I can see how it’s arriving at its conclusions.

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Also, I wasn’t trialing what is considered to be dangerous meds, and, on top of that, I started everything at the most ridiculously low doses. Like a speck of a pill for example and even that could be like throwing a grenade into my system at times. These are not scary meds I was trialing either - simple things like, for example, Pepcid AC from the USA completely screwed my system for about 3 weeks. Something so harmless - that would have been as harmless as a glass of water to my body when I was healthy years ago. SMH

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So - that’s how it came to be that I learned this technique of minute titrations.

That is how I learned to set up my own personal drug trials as science experiments.

That is how today I am going to go outside in 95 degree weather without totally unraveling, I will eat cherries without becoming ataxic and feeling this pressure in my skull and this infuriating feeling of ants crawling over and around my scalp, and I will go to the gym and lift heavy weights to bring my bone dexa numbers back up after having been malnourished for so many years - unable to eat a balanced diet.

That was a lot to share. I’ve held back on doing this until I could trust what I was doing would last and continue working. I hope this story helps someone. I hope they read it and it doesn’t take them 4 years and as much money as I’ve spent to figure out the strategy of tiny titrations and in treating their body as a science experiment.

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Also, I am very grateful to Redditors - the last piece in this part of my wellness journey. I learned a lot about the meds I was trialing through people here talking about their experiences. It truly has been a godsend. A huge THANK YOU to all who contribute on Reddit. You matter.

Be well.
❤️

Especially pre period anyone else?

Antihistamines help clear a lot of my symptoms (although not as much as quercetin), especially after food, but I find if I take them daily I quickly become depressed. Does this happen to anyone else?

Has anyone else had issues with blood pressure. I’ve always gone into anaphylaxis with a few blood pressure drops to 72 and 60 but always had the vomitting, flushing and other symptoms first. The other day I woke up, stood up and was super dizzy that last ages. Felt tiny bit nauseous but was t sure if I was having a reaction. BP dropped to 96/60 took my epi as per my plan. Lucky I did as an hour later feet and hands went cold and yellow, throat pressure, nausea again and more adrenaline edit Bp trended down to 89 was unstable and spent the night in ICU. Hospital said was anaphylactoid as no trigger, just woke up. Now I get scared if I get dizzy which now I ALOT and no idea what my body has decided to do.

4 years of severe long COVID/MCAS with mostly neurological and cognitive symptoms plus significant food and environmental reactivity. Extremely medication sensitive. Have tried ketotifen, cromolyn, and famotidine, all with bad reactions even at low doses, though I may not have gone slow enough.

Looking for recommendations on the most tolerated first medication, ideally something that calms overall mast cell reactivity and helps with brain fog, so other treatments can actually work. What worked for you when you were highly reactive and just starting out? I am between trying cromolyn or ketotifen again, just slower, or experimenting with something like Allegra

So I dont have many foods still but I am gonna start trialing more foods again soon because I’ve been feeling a bit better overall. Is there anything you guys put on your chicken or eat with it to make it better. Like a sauce or something? I’m like gagging crying trying to get all my chicken down but I know I have to because it’s my only source of protein. I am grateful I can eat it and even have a protein source but oh my am I tired of it. I think this would the same with any other protein because I’ve never loved any type of meat really also so again any tips? I was thinking of maybe just mashing some potatoes and throwing them on top if I can find some I’m not reactive to idk I need more ideas.

I've been rigorously avoiding the common high-histamine foods for years, but every day I would always snack on dark chocolate assuming it was a relatively healthy snack. WELL, turns out I was wrong.

This might be common knowledge, and I may be an idiot, but sharing here in case helpful.

From Gemini:

• It's a Histamine Liberator: Cacao contains compounds that signal your body’s mast cells to open up and release their own stored histamine into your system.
• It Hogs Your DAO Enzymes: Because cacao is fermented, it’s loaded with other biogenic amines (like tyramine). Your DAO enzyme is responsible for clearing out histamine, but it gets distracted breaking down these other amines first, creating a histamine backup.
• The Fermentation Factor: The darker the chocolate, the more fermented cocoa solids it has. This means higher concentrations of the triggers mentioned above.

My episodes are triggered with estrogen oscillations. I was put on a progestin-only pill that blocks ovulation and reduces your own natural estradiol production. That made my MCAS symptoms MUCH better however didn’t make them go 100% away which is expected because it still allows some oscillation (periods of higher or lower estrogen). But still, it gave me some relief.

However, I went on that pill for MCAS reasons AND weird symptoms that I first thought they were from PCOS (sudden increase in menstrual flow, menstrual irregularities that didn’t exist before, sudden worsening of preexisting aura and hemiplegic migraines). After 2 years those symptoms started getting worse and more obvious (hot flashes, no sex drive, forgetting words, sudden EXTREMELY high cholesterol with no weight, dietary or lifestyle changes, body shape/composition changes including shrinking breasts and loss of roundness on the hips, sudden high blood pressure episodes that would last for a few minutes and go away, sleep disturbances). I quit the pill thinking it was that however it wasn’t. The symptoms didn’t go away for months, they kept going on, actually got worse because of MCAS, I couldn’t deal with all that BS anymore and I went back on the pill.

I went to the a gynecologist who’s specialized in HRT and menopause 3 days ago and told her everything and she was like… “you’re probably entering perimenopause”. And prescribed me transdermal HRT with a very low dose of estradiol (0.10 mg) and estriol (0.25 mg). She kept me on the pill. Yesterday I was already having an MCAS flare because of a sudden estrogen surge (I know when they come because of my skin quality, cervical mucus etc) and I applied the cream and hours later I was feeling worse (?). Increased blood pressure, palpitations, sleepless, wired but tired, you know the drill.

Anyone has experience on HRT?

Thank you.

Welp.... today in the US sucks to have mcas. I really hate the 4th. Hope y'all are staying safe