r/MCAS

I was under impression that anaphylaxis was "only throat closing" but now in my own researching, understanding all my symptoms for months could been anaphylaxis episodes and need epi pen for emergencies....

Good golly, last time I went to allergist, they told they couldn't test for food allergies like it wasn't real and said MCAS was rare so I'm traumatized getting help from them again

Why did I feel better and less symptomatic when I mainly ate artificial chocolate protein bars with loads of stuff I should have reacted to?

And why do I feel like crap on a low histamine diet with healthy, gut friendly foods?

Am I stupid for considering going back to that bar even if it's not good long-term?🫣

I’ll start..as soon as I start feeling nauseous (I have BAD Emetophobia too..) I go for a bath. At my worst of being unwell, I had about 3-4 baths per day. Even sometimes throughout the night.

A relative of mine whom I’m very close to had been diagnosed with POTTS and a suspicion of MCAS, ever since they’re only eating the same meal every day as any other food they tested caused a reaction. I really try to help them by finding MCAS friendly recipes and showing them I really care but as they haven’t been officially diagnosed and have no appointment with a professional before three months so no treatment at all, it’s really hard for them. Today we had a family gathering and all they could eat was chicken with no seasoning, rice and carrots, the despair on their face was very visible

I’m absolutely FUMING 😭😭. For the past few days I have desperately tried to use any form of nail polish. Colored nail polish, top coats, strengthening polish, and I’ve had a reaction every single time.

Just the smell causes me to recoil, and my face starts to get red and I get itchy and it burns. I’m actually so sad 🥲 MCAS has taken so much away from me.

I’m an avid beauty lover. I can no longer wear any of the many perfumes I own. I can no longer use so so many products because the fragrance causes me to go into a flare up. I can’t use so many of my cleaning supplies because it causes me to get sick.

I can’t even eat ketchup anymore :( I MISS IT!!!

I just started on medication so I really hope things get better. It’s been hard, I’m sure my fellow MCAS people will have had similar experiences.

Hello everyone, my sister has been experiencing extreme symptoms the most extreme of which being constant 24/7 persistent dizziness, extreme head pressure, and extreme nausea. I apologize in advance for the length of this post. 

Her symptoms started about two years ago, the day after getting new lenses in old glasses that were hard to see out of and the vision out of them looked like wearing goggles, as well as the changing of the covers of some outdoor cushions that had never been washed and likely had mold, pollen, dog hair, etc. and we suspect that she lived in a moldy apartment, but we don't know if any of this is related. Also we don't know if it's related, but she got sick a few times prior and never tested if the sickness was COVID, but it could have been. She also got into a very very small car accident about a month or so before her symptoms started but she was not hurt at all. Before her symptoms started she had a history of IBS, mold levels, anxiety/fears/phobias, worsening motion sickness, Epstein Barr markers from childhood, extreme stress, and going off of her anxiety medication earlier that year. She woke up one day experiencing vertigo which eventually turned into persistent boat-like, floaty dizziness that has been daily since then.

With her dizziness she also has experienced nausea every day and more recently extreme head pressure. With a functional doctor, she received very very minor relief over the course of four months but then she got COVID in early 2025 which caused everything to worsen. She began to have symptoms that mirrored gastritis including extreme fullness, intolerance to some foods, a soft-choking feeling in her throat, and the ability to only a very limited diet. Since then, she also has had her other symptoms worsen as she now cannot watch TV, look at her phone, read anything, look at photos, prepare any of her own food or drinks, sit on anything other than a hard chair, and she has extreme discomfort when she removes her heating pad. Also, she lost her period during this time frame for about five months and when it came back it brought with it bad pms and periods that made all of her symptoms flare extremely. It’s also worth noting that with these symptoms, her movement is limited and does spike when she moves her head and she cannot lie flat, lean back, tilt her head, etc. and nothing has made her symptoms go away, she has experienced them every single day with little to no improvement for approaching two years. 

In addition, she sat outside earlier this year for 3 minutes and since then her symptoms have increased immensely since then. She came inside with a feeling like she had just come off a fair ride and every symptom increased drastically, including head pressure which is now almost equivalent to the severity of her nausea and her dizziness. She also has had to limit her life even more due to anything raising her symptoms including talking, listening, looking at anything, or walking further than the bathroom. 

She has seen a slew of doctors prescribing different things and giving loose diagnoses but never coming to a real conclusion that felt right to them or us. Among these include neurologists, ENTs, neurothomologists, eye doctors, emergency room doctors, PCPs, functional doctors, gut health specialists, spike protein researchers, audiology specialists, nervous system specialists, acupuncturists, cardiologists, etc. No one has been able to say for sure what this is and give her a plan that is effective and/or treats her as a whole rather than just one specific symptom. By these doctors she's been diagnosed with PPD, vestibular migraines, potential BVD, mold toxicity, high histamine levels, potential POTS, long-covid, post-covid syndrome, crystal displacement

Currently, she is taking Pepcid, Claritin, DGL, Quercetin, Zinc-Carnosine, and she takes tummy drops to help with the nausea (they are not very effective), and very occasional Tylenol for head pressure or period related symptoms. Within the past few weeks, she went on Cromolyn and is titrating up by half ampules (with the goal of being on 4 ampules daily) and she tolerated the first two halves somewhat well but the third half has been giving her issues as it raised her nausea extremely and caused her stomach severe upsetness. She went back down and started taking it with food which helped slightly so she tried to go back up to three halves but once again experienced the same nausea, just not as long as the first time, so she is back down to two. 

As you can see, this is a lot and puts her, myself, and our family at a loss for what to do and how best to help her. If anyone has any advice or has gone through something similar, or even has advice on her meds please let me know.

Posting this a few places, sorry if you see it more than once!

Hi all, I’m relatively newly diagnosed with MCAS (about three month ago) and over the last 8 weeks I did an elimination diet and began adding foods back in to see what triggers my symptoms.

The first thing I tried was plain white wheat sourdough and I had a very strong reaction. I assumed this meant o had an issue either with wheat or gluten. I’ve since tried spelt and regular oats and I did not react the same way. Does that make sense that I would have an issue with the wheat but not gluten?

Worth noting that even during the elimination phase of the diet, I’ve been having gastric symptoms (heartburn, stomach pain, constipation). This has not improved or gotten worse since adding foods back in, and I’m unsure if these symptoms are the result of something else or because there’s some trigger I’m consuming that I didn’t eliminate.

I'm on Slinda, just starting pack 4. For over two years my skin has reacted every time my hormone levels shift, it's the rate of change that triggers it, not the levels themselves. This week my Oura temperature moved from +0.1 to -0.2 and within a day I had rashes, prickling and itching that's lasted two days now.

Slinda has genuinely helped, I'm less reactive than before and I can eat more freely again, which felt impossible not long ago. But I'm still getting these reactions with each hormonal fluctuation and I don't know what else I can do.

This has taken so much from me. Two summers lost with my daughter because heat and sun were impossible. My training stopped for a long time for fitness and I am a yoga teacher so my work is impacted. I've only just started moving again and every time a reaction comes everything pauses.

I can't take estrogen. I've used progesterone for years and it didn't stop the reactions. Other progestins would cause more bleeding which means more hormonal dips. I don't want to go down the medical menopause route. Slinda is the closest thing that's worked but it's not fully there yet.

I just want to understand if there's anything, lifestyle, timing, approach, that could reduce how much I react to these shifts and will Slinda continues to deepen its suppression.
Ive done years of functional health too and even studied it. Ive done HRT with Progesterone, testosterone and LDN.

I am currently taking Cromolyn, Montetlukast and Antihistamines daily plus Slinda. I feel so down it is really making life so hard and limiting my joy happiness and time with family.

My allergist/immunologist put me on Hydroxychloroquine 300 mg for a month (along with Famotadine and Bilastine). I don’t have autoimmunity (for which the drug is usually prescribed) but do have a positive immune activity marker. Based on how I feel on the medication, I will either be considered to have MCAS and be given mast cell stabilisers, dao, etc, or no. I was hoping to secure Ketotifen during this visit, as I thought that is the thing that I most need, but my doctor’s ‘step by step’ approach makes sense too, and I’m curious to see how it goes. Any thoughts or experiences with Hydroxychloroquine? Would love to hear.

From my many posts, ever since I was exposed to eggs, I was hyper reactive. It’s calmed down and antihistamines are working for me again. But this time I feel super ill when taking it (cold, shaky, sweaty, weak, sick drowsy) I’ve been checked for adrenal insufficiency but my tests were ok and was tapered off steroids. But still have symptoms of low cortisol.

I had to move back in with my family since I became chronically ill. My family has been cold to me a lot of the times, including eating foods I’ve developed allergies to. Even though the hyper reactivity calmed down, I’m a lot more sensitive now.

I began reacting to one of my cats but not the other. I finally realized it might be because she likes to sit on the same couch seat that a family member eats peanuts in. My throat almost closed up the other day right after petting her but not sure if it was something else that might’ve caused it. I don’t know how to “sanitize” her effectively without obviously using chemicals, it breaks my heart I want to pet and cuddle with her but now I’m worried of when she sleeps on my bed and I possibly get exposed.

Tonight I saw a family member eating yet again peanuts on the couch and directly after my cat went to go sit there. I had her get off the couch, she went into my room and I closed the door so my cats don’t get out and stay with me. I genuinely don’t know what to do and I lost it.

I know I’ll eventually get things figured out but I also can’t live on my own currently. How can I get better and have a job and live independently again when the people around me aren’t helping? Or when my body doesn’t cooperate?

I genuinely don’t know what to do, I feel anger, I feel heart broken with my cat, I feel thrown away by family. Its so hard to go from normal to living like this

I am still not diagnosed but got a referral to see a different allergists. I had a follow up appointment today with my PCP to check up on how I was doing after trying Singulair. Singulair was a god send and truly helped my symptoms until about 3-4 weeks into taking it when the mental health side effects hit and some auditory hallucinations.

I brought this up at my appointment and my doctor acted surprised and said he had never heard of that happening to someone with the auditory piece. Then made a comment that maybe all my problems are just mental health.

He is having me try accolate now instead to see if this helps. Has anyone taken this? If so any advice or experiences you can share?

I’m feel so discouraged and my doctor is now acting like MCAS isn’t what I have at all but I truly feel it is after all my research.

Hi all, anyone here take LDN in the morning instead of at bedtime? I’m supposed to take a medication at bedtime and I can’t take any other medication 4 hours before or after it, which makes taking LDN at bedtime a little tricky.

Anybody take it at morning? Did you experience side effects or notice it was less or more effective?

I think I just lost a lot of foods I can eat. Im down to only being able to eat freschetta gf pizzas, the feelsgoodfood brand, and the udis brand of gf products. I think I overdid it when I tried eating an old food I used to be able to eat, and now I think I might be reacting to the Udis brand. Does anyone have any thought about how I can become less reactive? Ive tried sooooo many things. Im only 26 and my quality of life is really bad.

Hello guys! Is it ok taking famotidine if I do not have heartburn or GERD symptoms? Bloating is my major symptom gut related and sometimes stomach cramps and gases. I also have POTS symptoms, is there any chance famotidine will affect that?

Steroid and Antihistamine doesn't work,
Is it MCAS ? how does MCAS feel like ? Can anyone help me ? What am i suposed to tell my doctor, ?

All this happened after i ate contaminated food and that day it was whole body itching and now its been 1 year since then.

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Hi all,

I am new to MCAS (+ Pots + ME). I just moved into a new apartment, and am having what seems like an allergic reaction to it. Wondering how to proceed.

I’ve been on fenofexadine and famotidine since last fall, supplemented by 500 mg quercetin since January. I‘ve had a rough go of it lately, with lots of malaise and aches off and on since January, which I was attributing to my ME.

When we moved into the new apt two weeks ago, I pretty quickly started sneezing, runny nose, etc. We figured it was dust, but I noticed that it got worse when I was near a radiator turned on. I have a known birch allergy, and there are four young birch trees in the yard, so I guessed their pollen might have collected in the radiator.

We‘ve kept me indoors with windows closed, cleaned the radiators, wiped down surfaces and vacuumed, got a hepa air filter. The sneezing fits have reduced, but I’m still really struggling with running nose, sore throat, post nasal drip, itchiness, shortness of breath, and the feeling like my face is sunburned. I feel extra rough in the mornings, like I’m still being exposed to something overnight.

Is there something obvious we’ve missed? Could it be that a flare is already triggered and I just need to wait more than a week to see it calm down?

This condition is rough. I so appreciate learning from you all in this subreddit.

Hi there! I was diagnosed with MCAS two years ago, after a flare up of severe pelvic pain and joint pain that was unresponsive to all treatment. I also have UMCTD, POTS, RA, and PANDAS, but my doctor believes the crux of the issue is MCAS.

I was unaware I could flare that bad again, until it happened Wednesday. I am back on Zyrtec, Allegra, Pepcid AC and started dexamethazone, and potentially going to explore more meds in the future. Right now, I am in so much pain and I’m looking for advice on pain management and also acceptance. I just got essentially promoted at work earlier this month, and the stress from that is part of what brought this on. I have been sick from work since Thursday, and am supposed to go back tomorrow (Tuesday). I am scared to be sick from work for longer, but I am so much more scared the pain will get worse than it already is. How do you all accept the diagnosis and take it seriously? I understand rationally that I need to take it seriously, and that being home sick for a flare up is just as valid as being sick with the flu, but I’m having a very difficult time putting that into practice. Any advice would be helpful. Thank you❤️