r/MCAS

How do you tell the difference between the two? The symptoms sound very similar.

I'm sick of it.I can't eat anything I love ever and not just that.I also get ruined day because someone else's dog touched my leg.Now I can't even eat and I'm all swollen and I'm sick of being swollen and I'm sick of everything being pet friendly cause I automatically can't go there,I'm sick of avoiding everything and still being swollen and sick and flared up and feeling awful.I'm sick of being misunderstood and not respected at all and I'm sick of all restrictions just get all swollen no matter what I do.I'm so sad and angry cause I was doing so well,it's not fair.I have to worry sm and I still get sick cause someone else just couldn't move their dog away.I didn't choose this,I don't hate dogs just to clarify,I'm just so damn tired.

Hey all! New to the MCAS world and have been referred to see an allergist in the Kaiser system. Any chance you know a doc within Kaiser that gets MCAS? I'm in Seattle area, but willing to travel within Washington State. Any leads deeply appreciated!

Hey yall, I wanna know if anyone shares such a strange and ungodly constellation of symptoms.

It started in 2023, after a period of high stress with chronic uticarias - spontaneous and inductible. It waxes and wanes for a while but suddenly came muscle pains. like the muscles tense up without any cause. They would ache and perticularky around the muscles would be dermatographia.

It starts to suddenlt get quite awful. Spontaneous “fibromyalgia like flares.” The dermatographia will suddenly become much more intense but with it comes full body pain, muscles everywhere pained, sensitive to touch, gi distress, and just overall awful awful episodes like this. as they die down, the dermatographia also improves.

Then, reactivity to Foods starts to spread to everything. bug bites look awful, eating food triggers weirs reactions, pain becomes chronic. now I just have chronic muscle and joint pain, small fiber neuropathy, and I’m honestly losing it.

Has anyone experienced a weird presentation like this. given the uticarias, allergy is considering mast cell issues despite negative bloodwork. i Just feel so alone in this presentation

Hi All, I have searched this reddit and seen some similar posts/ questions but they're not exactly what I'm looking for.

Whenever I eat something that I have a reaction to, I get this burning / tingling in my mouth. I can't even taste what the food tastes like because it's like I ate spicy Orajel/lidocaine.

I'm not talking about a nerve tingling effect (although i get outside my face when i have low BP). I'm talking about like a burning tingling in my mouth.

There has been 3x recently where I've been out to eat with my boyfriend and said "Oh my god that's spicy my mouth is burning" and he said "it's not spicy at all". The most recent time it was BUTTER with some seasoning in it. Another time it was cashew chicken (not spicy) and i've had it before and didn't react to it and it wasn't spicy!

Let me know if this is an MCAS symptom maybe?? Idk what else it could be.

TY :)

i was prescribed ketotifen 2 days ago for suspected mcas from the gp (can’t be officially diagnosed through my health board) but no pharmacy can source it! I’ve been to two independent pharmacies and 2 chains (boots and tesco). does anyone have a chain pharmacy they can recommend gets them in or shall i just give up and go with an alternative im also on famotidine and fexofenadine!

TIA😊

Hello dear community,

My doctor prescribed me now amitriptyline for my pain. And both are histamine h1 blockers and cross to the brain thus make you sedated, drowsy. I wonder did anyone ever combine it? And what was your experience?

Hey guys,

Huge flare here, taking Loratadine and adding Levocetezirine. Might not be enough and wondering to add Polaramine.

If doing so it is total 3 anti H1.
My doc is in holidays here, wondering if some of you accumulate 3 H1 ?

Thanks !

Quite literally right after I escaped the abuse of my parents, my health went downhill, especially after my MCAS got way worse after I contracted the C virus back in 2022.

I don't even have a doctor to help me with anything. I had to figure it out by myself and with the internet over years.
While I do have some interventions via antihistamines and mast cell stabilizers now, I feel exhausted and like I missed out on building a social life and a career I actually like.

I was isolated as a child, and now it simply continues.

For myself, I solved the puzzle, but the world is quite a hostile place right now, and I can't find a justification to keep going.
I tried to do so many things. I learned cooking, heavy lifting, running marathons, building things, learning about longevity, tried learning something cool and socializing, I tried this and that. Each time, my health took it away.

This part might be interesting:
In this subreddit, I quite often see someone mention methylation and Bartonella, and I indeed found multiple methylation bottlenecks and a positive Bartonella IgG from a blood draw.

It would be interesting to discover whether this is a common route:
methylation bottlenecks + Bartonella infections + COVID-19 = MCAS

But idk, I am so tired, and I have carried the burden of my life all the way with a weak social support system.

Please let me know if there is anyone who also feels like this. My social circle doesn't understand this state of life at all, and I would love to finally connect with people who are in a similar situation to spend time with at our own pace.
It would be amazing to build some good friendships with people who genuinely see and understand circumstances like that, and I believe it would make life so much more worth living.

I swear I am not boring to be around, but with conditions like this, time spent together means that instead of partying for 48 hours at a time, time is better spent in smaller but consistent portions and maybe some days are "MCAS" days.

Maybe anyone based in Germany too?

Please excuse that I am all over the place today. I just had to get this off my chest.

I recently found out I have MCAS, it helped to explain so much in my life and my boys. I have 2 sons, 8 and 10years old - they also have hypermobility and neurodivergence. Their MCAS shows up as chronic runny noses or coughs, complete meltdowns if they so much as look as chocolate. They've been avoiding gluten for the past few years - since a doctor said that their constipation could be helped with a gluten free diet.

But they are looking skinny and I don't want to restrict them unnecessarily, if I give them a gentle laxative like forlax do you think I could relax my gluten free rules a bit?

I am seeing my MCAS doctor next week and I'll book in to see their pediatrician soon too. I'm asking here because I don't trust doctors to have all the answers, and I'd like to know if there something else I should be considering or asking about. Thanks

Sorry but this is funny. I can laugh about this as I'm on the healing journey and now I'm looking back like WTF! Now I have a passport for next 10 years reminding me of this shit. I don't even look like me, I look like I could be my aunt or something. A thick bulky swollen jawline, hamster cheeks, swelling on the side of my nose a bit, saggy eyebrows. Also my hair got so thin!

Hii, I posted almost couple weeks ago after finally being prescribed cromolyn.

ORIGINAL POST

This medication is absolutely saving my life and I surprisingly tolerated the titration up to 4 ampules a day with not much trouble! It has been like my entire life since i could just eat or do anything without having to worry so much about rapid bloating, discomfort, mental short circuiting, awful nasal drip, etc etc

I am very ecstatic that somehow its working to help everything for me (the brain fog, my central nervous system, fatigue, sleep) i am actually so relieved and it’s been too long..

Wishing that this continues 🤞

I wear a smart watch to sleep and I got a 192 bpm reading last night. Normally I'd brush it off as a glitch but I just started Allegra+Pepcid regiment YESTERDAY for MCAS GI issues. It's a little *too* coincidental. I went back all the way to March and my highest spike was less than 120bpm. Anyone has similar things happening?

Physically I don't feel different this morning other than maybe I feel a lot better...? I normally sleep 1-9. I just woke up at 7 and feel perfectly awake, except for this hear rate spike scare. TIA!

Educational purposes only

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My body skin isn’t super sensitive to acids or other medium to harsh skincare chemicals, but I am super super sensitive to any sort of abrasion/trauma and flare almost immediately, especially with added heat. (I also have patches around my knees that turn red in heat, had them since I was little and they never hurt)

I don’t shave anything but my armpits, but I do sugar everything hips down. It’s way better than other methods for me, but I still get tons of tiny ingrown hairs all over my legs when it grows back in. Obviously exfoliation solves the issue, but when I’ve tried physical exfoliation like scrubbing mitts/gloves, slightly abrasive soap bars, and scrubs with medium to harder exfoliating beads, my skin develops an unbearable burning painful itch that doesn’t go away for at least a half hour. I’ve tried some gentle scrubs and chemical exfoliation over the years that haven’t been too bad, but I haven’t noticed much effect with them. The one I have currently is the nécessaire body exfoliator. It doesn’t make my skin flare that much but again I barely notice a difference.

Any recommendations for effective chemical body exfoliators and/or gentle but effective physical exfoliation that won’t make my body flare?

i’m going cuckoo bananas
My MCAS never really caused me random food allergies until a pretty recent bad flare up (granted for years before the flare up i still sometimes had some scratching and coughing eating a specific food but it’s recently gotten severely worse)

And so much worse where slowly but surely I can eat almost NOTHING GOOD
I’m afab ok i’m having horrific sweets cravings you know the deal. But my allergy to guar gum has spread to reacting to xantham gum and carob bean gum and carrageenan and omg suddenly the entire pastry and icecream and chocolate isles just DISSAPEARED

it’s been a year since i’ve tasted the semi sweet delicacy of this one matcha icecream from a place near my house i used to visit religiously and ever since my allergy got worse and worse over the last five ish years i haven’t been there in a year now out of fear because i don’t want to risk it
but oh my god
im craving so bad my favorite guilty pleasure
i’ve survived not being able to order any desserts at restaurants. At only being able to have like haagen daz cause im allergic to every other brand. to not being able to eat krispy kreme donuts despite having the joke diploma that gets your free donuts for a year but they use guar gum-
but im starting to lose it!

i just ate a pudding that used to be a childhood favorite specially imported by my family from my home country
AND I WAS ALLERGIC
CARRAGEENAN
I CANT TAKE IT ANYMORE

rant over 😁
so how do you guys handle becoming allergic to every favorite and comfort food on earth
do you just suck it up and eat it anyways
or stay safe

my will is slowly crumbling

Hi all, im 26M. ive been using testosterone for a year. i was fine with it and it really improved my life. but ive now started getting reactions to the oils. i think it could be the solvents. this is really pissing me off. i really do not want to give up the injections. i really cannot stop. is there any way at all that i can tolerate this or get around this issue? I've tried all the different brands and formulations. im reacting to all of them now. i dont want to stop. is there any way around this? anything at all i can do?

Is there anything I need to look out for that could be dangerous for me? Pretty nervous, never had anything classified as surgical done to me before.

My facial flushing is out of control, and - like I mentioned in a recent post - I'm only about a week in on treatment (cetirizine and Famotidine)... Which isn't doing anything for the flushing.

I haven't been active at all in a while (variety of reasons), but decided to do ten minutes - easy pace - on the elliptical after supper today.

About ten minutes after finishing, all of a sudden my face felt like the flush just dropped right out of it?

That's the only way I can describe it.

My husband rates my flushing on a scale of 1-10, I'm generally at a 6-7 lately, and I've been at a 5-6 all day.

This went down to 3, out of nowhere. I NEVER get down to 3 anymore, aside from first thing in the morning, before getting out of bed.

My face has been hot and awful all day, I was expecting it to get WORSE from exercise.

Is this a known thing? Or is my body just being its usual completely nonsensical BS self?

I’m trying to figure out if anyone experiences something similar. I can go from looking relatively slim and normal to visibly much puffier within hours, sometimes even faster.

It usually starts in my abdomen, then my face/chin/neck and upper back become fuller. My belly can become huge and hard but also kind of mushy, and I feel a tingling, stretching or pressure sensation as it happens. My face can literally look different from one hour to the next. Then sometimes I suddenly deflate again and look much more like myself.

Emotional stress seems to trigger it really strongly for me. Food can too, especially large meals, sugar, salty foods and some of my known MCAS triggers. I also get severe itching, dermatographia, flushing and occasional attacks with GI symptoms or chest tightness.

Does anyone with MCAS experience this kind of rapid visible swell up and down? I’m especially curious about people who can actually see their face, neck and body changing over the course of the same day. I’d love to hear what your swelling feels like and what you’ve found triggers or helps it.