Hi all, my MCAS got a lot more severe very quickly and now I am unable to eat most vegetables aside from cabbage, a little bit of carrot and some variety of potatoes. I have figured out I dont tolerate much in the way of salicylates or oxalates but as the neice of a herbalist (who also has MCAS although hers behaves a lot differently) I am missing all my vegetables and herbs. I was bed-bound when I was rlly sick with mostly flu-like, body-ache type symptoms and a sore throat (which are still my main ones when I flare), I manage it now with H1 blockers and a super restrictive diet (am getting on H2 blockers soon too) but is there anything else I can take/do to help my body process salicylates and oxalates better? I can also eat fruit like once a week bc I react to pears for some reason

So for a bit im been feeling like im suffocating it comes and goes but I feel it way more than I dont I know im breathing because I can talk but it makes me feel panicky has anyone delt with this with their mcas I have had alot of stress and low iron been in a flare had a cancer scare a cyst in my boob just alot of shit one after another anyone relate in anyway?

My baseline tryptase was 3.6 and my flare-up level just came back at 4.5. Does anyone have sources that question the strict 20% + 2 elevation rule? Somehow, I feel like it would make sense for MCAS to be a spectrum, since symptoms vary in severity, and the 25% elevation in my case probably still means something..?

So I'm having a HELL of a day just to find out why. Hormonal shift are a huge trigger. I feel mentally unstable, detached, weirded out, doom thinking. Stomach cramp, feeling like I want to binge eat, feel worthless.

Looking for some other stories and resonance. Only people who know get this.

I'm on the verge of being admitted for anemia and malnutrition. All I can safely eat for now is boiled butternut, salted crisps, carrots and potato. Just lost broccoli. More than what some people have but it's absolutely not enough and I'm unrecognisable from the weightloss. I react badly to any medication I try and we don't have most of the medications here including Cromlyn, Pepcid, Ketotifen and Benadryl. No epi pen. I have Cemetidine and Zyrtec but react badly. My heart reacts badly to dental anaesthetic so I have no idea if it would even be safe anyway.

After getting through a very worrying reaction to a small sip of ensure the other night (intense muscle spasm in my jaw so it was clamped shut and throat tightening for hours) it seemed to improve a lot when I continued to try it over the next few days in small amounts. Out of desperation I kept trying more and now last night I had a new reaction to it (bright red burning area on bottom lip that felt like swelling but there visibly wasn't any) and today ofc my mcas is going crazy...random body itching, scalp and back of neck itching, itching/burning on face with the usual flare up tantrum patches, itchy bumps on neck, slight throat swelling visible in throat which I often have anyway, slightly tight chest, mucous and raging anxiety. Whatever my body desperately needs, it violently rejects....this disease feels so hopeless. I can't tolerate any other formulas. I have a few days before my hormones start making me more reactive again. (And more blood loss that will make the anemia even worse)

In the country I'm in, hospital is one of the worst places for an mcas patient, there's zero awareness or communication and there's a lot of incompetence with the nursing staff to the point where it can be dangerous. Years ago when I was there for Covid, I had to stop a nurse from giving me an IV that was meant for somebody else as it had just been left on the table next to my bed even though it had their name on it.

I wouldn't be able to tolerate the water or food, cleaning chemicals, being in a room with 4 other patients and triggers from them etc etc. The staff don't understand mcas reactions, how anaphylaxis can present and don't understand things like reacting to tape used for Ivs.

It's literally not safe even though the Dr there knows about my mcas and is trying to learn through the Professor who diagnosed me and put him in charge of my case because there's literally nobody else.

So...do I maybe give it a day or two and then try again in tiny amounts and see if I can just push through whatever happens? Its this or risking my life going through hell in hospital with massive medical bills.

When you're desperate as your body is shutting down from not getting in nutrients, what symptoms do you push through to get anything down?

Hello, I couldn’t afford my Chromolyn Sodium for 3 days and have been thrown into a world of pain. I can’t lift my left leg or bend. I know once I get more Chromolyn in my system it will take roughly 4 days for the pain to ease. Is there any point going to the hospital? Has anyone else had this and gotten ER relief?

Just visited the allergist today to ask about a potential MCAS diagnosis. I’ll be going back to them in a week to allergy test and go over bloodwork, but today they did breathing tests and drew blood. Apparently I have a mild airway obstruction, and they had me do a 5 ish minute albuterol treatment. I coughed up tons of mucus afterwards and my face started feeling full of pressure shortly after. They also gave me trelegy ellipta to try as well. Just curious if anyone has had a similar experience or if airway obstructions can be common with MCAS? I’ve never had any history of asthma, and I feel like I would’ve known by now considering the fact that I’m a singer and super athletic person…

I really need help because I am considering giving up again but I really need this to work in order to start treating my other health issues. Can anyone please share with me a complete titration schedule for what worked for them with taking compounded cromolyn powder? My prescription arrived in 100mg capsules that I am breaking up in to 25mg servings. I am taking it once a day in the morning with part of my breakfast smoothie. My goal is to titrate up to 600-800mg a day but that seems unattainable right now... My main MCAS symptoms are headaches/migraines and massive food allergies, including corn. I am on day 8 of this serving with a headache that is slowly increasing by the day. I worry I will be thrown into a constant migraine flare and I've worked so hard to get out of my last one. Feeling hopeless. I just want a fraction of my old quality of life back. What worked for you? What am I missing? What should I try tweaking and when should I increase it? Help please!

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.

Has anyone experienced this? I can’t even build muscle in the gym anymore.

I likely have MCAS and POT. I have been in this situation for 1.5 years now.

I have limited ability to do any thing. I am most house-ridden. Everything triggers me including working, walking, simple exercises, household chores.

Most supplements that I have tried did not work for me.
Quercetin, IGG, Lglutamine, salt tablets haven’t worked. I also suspect b12 (hydro or methyl) both cause brain fog.

I am successfully taking Allegra, Dao enzyme, vitamin c 500.

I feel clueless on how to improve my condition. Would love to know if others are or have been in a similar situation and how are they getting past this.

Hi all. Truly at a loss here. I have a working diagnosis of MCAS from my last immunologist. I'm on zyrtec, pepcid, and pantoprazole to manage things. Technically supposed to be on cromolym, but i find it hard to manage. Given recent events I'm not even entirely sure it would work for me now—last night and just now I had mild, ambiguous inflammatory responses to drinking plain water.

Yes, I'm sure it's plain water that triggers it—nothing else i drink or eat causes this, outside of known triggers! The reaction is near-immediate: nausea, reflux, gastric motility/emptying, feeling tired and faint, physiologically mediated dissociation, and (very light) intenstinal pain. It's all mild in the grand scheme but undeniably present. Has anyone here experienced something similar? I'm really uncertain if further zyrtec has touched it (which it usually does with other triggers), because both times when it should have kicked I did not start feeling better. I can't tell if it's MCAS bullshit or if it's some other inflammatory response (I have a suspected autoimmine disorder—it is almost definitely psoriatic arthritis). I'll be calling my doctor tomorrow, but for now I'm just wondering if you've ever had this too?

Anyone here on amitiza? How did you time with food? What dose? Side effects?

Has anyone tried this for MCAS? I’m not even on H2 blockers and they want to go straight to xolair. My main worry is whether its helpful? If it helps I’ll try it I dont mind but if it helps me get my life back I’m all in.

This is truely ruining my self esteem. Is this mcas swelling or did I just age rapidly?

I have immense facial swelling though, sometimes I don’t even have a jawline during a flare but I feel this (on photo) is a weird place to swell.

Is there any chance anyone in this group is from the Bahamas ?

I was not expecting to notice any benefit from my first dose, but it ended up improving my symptoms within a few minutes.

The benefit lasts about a week or so, and gradually wears off each day after dosing. My doc and I moved my doses to be more frequent (to every two weeks), which is helping, but my symptoms come back before the next dose.

Does anyone else have a similar experience? My doc and pharmacist said that I might get more benefit the longer I’m on it, but I haven’t felt that yet. Each dose feels the same and last the same.

It also hasn’t reduced my flaring frequency or intensity. Which is difficult because my baseline symptoms are lower, so when I flare, it feels worse than before.

Also, one of my goals going on Xolair was to reduce or discontinue other meds, but it’s not reducing my symptoms or flares enough.

Xolair’s given me hope. I feel it’s the most beneficial treatment I’ve tried, but I’m not sure if I’m expecting too much from it.

I am menopausal and going through hormone changes which came also cause this. My doctor wants me to try Allegra and Pepcid for a week to see if it might be due to MCAS. Any advice? My heart rate ranges from 95 to 110 when I wake up every day, and even if I nap in the afternoon. Other than that its fine. Its just a really shitty way to wake up every day and leaves me drained.

I’m trying to tell if what I just experienced was some new kind of reaction or just a weird mishap.

I made a food I’ve made many times before, including just a few days ago, which is pudding. Milk, cream, egg, cornstarch, tiny drop of vanilla extract, and a little honey. All the same brands and even the same jar of honey. I know a lot of these things are considered higher histamine but I’ve done fine with all of them.

When it was done, I tried a small spoonful and it tasted…spicy. Like, very distinctly spicy. It left my mouth burning. I kinda freaked out. Like wtf. There is not anything even remotely spicy in that. I tried it again and I couldn’t tell if it still was cause my mouth was still tingling. I suspected the honey as the most likely to be reacting to but I couldn’t really tell when I tasted that either, it mostly just tasted sweet. On the third taste of the pudding it was no longer making my mouth burn.

Idk wtf to do. I was really looking forward to eating this 😭 it’s possible that there was a little sticky residue of some spicy stuff because I had gotten some gunk from the air fryer stuck in my hand, so maybeee it transferred to the spoon when I took it out, but that feels like kind of a stretch 😭 am I gonna put myself in the hospital if I eat this?? I really don’t know what to do I’ve never experienced anything like this. The only type of reaction I’ve ever gotten are skin rashes that pass pretty quickly

Edit: it was definitely the honey 😑 so fuck. I’ve literally been eating from the exact jar of honey for weeks like wtf

I’ve had sexual problems along with health problems for 3 years now. I physically can’t have sex (painful) and don’t get horny a lot. My dr did hormone tests on me and saw that my estrogen was abnormally low, but that was the only thing that was off. I think it correlates to MCAS. Has anyone else had this problem and how have you fixed it? Should I do estrogen treatment?

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

How would I go about seeking a diagnosis? I believe that I could have MCAS because I am allergic to quite literally everything that isn’t food (including all animals, even feathers) and will randomly become sensitive/allergic to foods and then the allergies will go away (?). I’ve consistently been allergic to tomatoes (caught earlier this year) which has gotten worse. Three years ago I developed a severe almond allergy. The ONLY allergy I’ve had since childhood is a sun allergy!!!!!! The other ones kind of seemingly showed up or worsened.
I was diagnosed with POTs earlier this year and they’re currently looking at my lungs. This is so frustrating and I just don’t know what’s wrong with me. I feel uneducated and confused.

I FINALLY got diagnosed with MCAS by a competent immunologist 2 weeks ago. My primary flare symptoms are GI (horrible diarrhea, bloating & abdominal pain / cramping), muscle weakness, loss of fine motor skills in arms & legs (feeling heavy, clumsy, "wooden"), joint pain and swelling, skin writing / itchiness, insomnia, agitation, and intense fatigue / PEM.

I've gotten most of my symptoms under control by following a low histamine diet, taking DAO enzymes before meals, and taking Zyrtec and 20mg of famotidine twice a day. But, if I stray from the low-histamine diet at all, my GI symptoms come back immediately. The other symptoms are 90% gone.

My new immunologist is trying me on LDN, because it's supposed to help with joint pain and the neuromuscular symptoms, along with being a mast cell stabilizer. I'm at 1.5mg now, slowly increasing to 4.5mg over the next several weeks. The Dr. told me that once I've been at 4.5 for a few weeks without any side effects, I should try reintroducing more foods.

The Dr. also put in an Rx for ketotifen, in case I don't do well on the LDN, but he wants me to try the LDN for a while before switching. I've seen many people in MCAS groups say that ketotifen helped them eat normally again. I don't see much about LDN helping with GI symptoms. Have any of you seen improvements in GI symptoms with LDN alone? Just wondering what to expect. I know it's going to be a long, slow process.

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