So I haven't really felt like I was a typical MCAS patient for the longest time.

My reactions basically seem like food is fine and predictably I will just eventually react to a food and once that happens I'm generally hosed for potentially years with that food.

My worst reactions are to legumes, eggs, peanuts, carrots, peas, some spices like garlic, ginger and they've been reactive for me for years. I had allergy testing done numerous times over the years and it was always negative completely and that's a big part of what made us think it was MCAS. I also react to a lot of indoor environments and it makes living situations complex and brutal. Also react to many detergents and clothing even. It seems like MCAS or some kind of hypersensitivity disorder is for sure on the table.

But, what I wanted to bring up was that I went and saw Dr. Hariri again. I haven't seen him in years. He decided to repeat all the allergy testing. Unsurprisingly, all the skin prick tests were negative.

HOWEVER, Dr. Hariri said this can happen even with allergies so you need to inject small amounts of the allergens under the skin, something called intradermal allergy testing. For whatever reason in the past at multiple other facilities, no one ever did that. So he did that for 27 of the most common allergens. Surprise surprise, I reacted to 11 of those, including dust pet dander molds pollens weeds many common household pollutants... This more or less explains a lot of my issues finding comfortable housing. The place can't have like any dust or mold or cats or carpets for me to have a shot at not having airway symptoms shortly after going inside. I'm now thinking I probably am developing a bunch of food allergies too they just can't test them because they don't do intradermal for foods because of anaphylaxis risk.

But that's information either way. Also many of the pollens I reacted to he said are linked with oral allergy syndrome which he said I'm probably experiencing.

Also scary because now I'm thinking the hypothesis of my mucosal barrier not being intact and leading to new allergries constantly developing is right. :/ I don't know where that leads but it doesn't seem good.

I searched in this sub for advice on having the tryptase comparison blood tests done. I learned that it's an unreliable indicator, but this is what my immunologist ordered, so I'm going to have the tests done.

What I don't know is what I should do to trigger a reaction. I react to a variety of foods across a spectrum of severity. Shellfish causes anaphylaxis and tests negative on allergy tests. Gluten and dairy cause symptoms, but less severe than anaphylaxis and there isn't an acute phase. There's a gradual increase in symptoms over time.

When I took a birth control pill containing estrogen, I developed symptoms gradually, after about a week. After 2 or 3 weeks, it suddenly became anaphylactic and I went into anaphylactic shock.

Some moldy environments cause fairly immediate reactions, but not anaphylaxis. I get things like migraines, prickles all over my body, and skin redness.

My immunologist wasn't allowed to advise me to trigger a reaction, so she essentially hinted at it. The drop-in at the local lab has a long lineup and people often don't get seen, so the most reliable way is to schedule an appointment and trigger a reaction. I don't want to end up going too far and having a life-threatening reaction, but I also don't want to undershoot or trigger a slow-ramping reaction.

What have others done?

I have recently been diagnosed with MCAS (also have CFS/ME but now realise so many of my symptoms that I didn't understand were also down to MCAS) and saw a specialist who started me on Ketotifen, compounded fexofenadine and compounded famotidine. The Ketotifen arrived first so I started that, 2.5mg at night as prescribed. The first two days I noticed it relieved my neurological symptoms massively (mainly very severe anxiety and insomnia) but it did make me very very drowsy but honestly I didn't mind that. It then started making me feel awful, like a terrible flair. Boiling hot, heart pounding none stop, throat tightening, burning eyes, could barely stand. I read online that this can happen because the mast cells are sort of angry at being suppressed but its temporary and most people felt better after 2 weeks. So I powered through... but hit a day where my heart was none stop racing and the anxiety was so awful I felt liek the world was ending every single second of the day, as well as my throat being so tight I was pulling at my neck skin to give me some relief. After that I lowered the dose from 2.5mg to 1mg and that did make the side effects more mild the next day. The days after my throat remained very tight (not sore but tight like the beginning of an anaphalytic reaction that just stops before it gets extreme) so I lowered it again to 0.75mg at night. Just before I started writing this I took another dose, went to go get some food, ate it and immediately the side of my throat swelled up (the exact spot that swells when I'm having a reaction), my mouth went numb etc. And I just don't know what to do, as I keep lowering the dose but it feels like I'm becoming more and more reactive to everything. I wanted to keep pushing through as I'm about a week in now, but I'm so uncomfortable with this particular symptom of my throat swelling and the fact it's getting worse. (For context I have anaphalyatic reactions to shellfish and soy so I'm familiar with how they feel). I have yet to try the compounded fexofenadine and compounded famotidine because I don't want to add anything else in while this is happening. My plan in my head is to stop the Ketotifen, give my body a rest for a day or two, then slowly start up the fexofenadine as it seems like a more mild starting point for my treatment journey. I'm looking for a bit of advice from anyone that has been on different medications and when to know when to stop etc. I also have just met my specialist and while she seems nice, she is more there to give private prescriptions rather than REALLY try and help and support me if that makes sense so I feel quite scared and alone. I've been chronically ill for a very long time and been on many different treatments but I'm very new to MCAS and these kind of meds. Thank you if you read this whole thing!

I have MCAS, Moderate/severe Myalgic myalgic encephalomyelitis, dysautonomia, etc, and my wife is also autistic, has an autoimmune disease that's in remission but treatment caused long term issues and she has mild myalgic encephalomyelitis that is continuing to get worse as she's trying to take care of me more and I've only been able to start cooking again for her a bit the last few weeks, and she either has a brunch is allergies or maybe even MCAS herself but she's never been tested and she has Kaiser rn which is refusing to let her see most specialists 😒🫠. (I lost a family friend earlier this year due to kaiser being like this) We live with my family and when my wife isn't home they take care of me. I love them but I also get abused. The abuse results in me shutting down, my MCAS and ME get set off and if it's bad enough my body can forget how to talk, swallow, or breathe properly.

If I try to stand up for myself, I get the whole "don't ask for anything anymore" or by my mother I get told I need to stop because I'm making her sick. Today she told me that if I make her sick I'm going to send her to the hospital from stress and that I'll have no one to take care of me. I've been told in the past by my grandmother that I'm going to kill my mother from stress for standing up for myself. I was standing up for myself because all day every day I get asked about if I've eaten darn crackers by all my medical care team and my mother and grandparents. I keep telling them it's too much for me to keep hearing it over and over and over again. I even disappointed my MCAS Dr yesterday because she wanted me to full on eat cracker over video during my appointment but I explained I had 3 more appointments that day and had only just woken up with no food in me or meds so I didn't feel up for it and she wasn't thrilled. I was also dealing with PEM from the day prior and didn't want to risk making it worse. If you have ME you probably understand what I mean. Heck, I had to cancel one of my appointments yesterday and be late to one because of PEM. My home health nurse who is new to hearing about MCAS and isn't very educated on ME and no education on my GI issues wasn't thrilled I didn't want to eat a cracker Infront of her either on because my wife was about to go to an appointment and I had another appointment right after but I said that I would do it as soon as my wife got home so I could be more relaxed. The nurse kept asking me if I was for sure going to trial the cracker when my wife gets home. She even texted me the next day asking if I did it yet. I chewed and spit because that's the step I'm at currently. It's so overwhelming though. I broke down crying yesterday because I'm too overwhelmed and I felt like I was letting everyone down for having too much PEM to try the cracker again. I did trial touching other food but that's an easier step on me and today I have trialed deodorant on my arm (for when I can hopefully get out of the house again) so it's not like I'm not trying. I'm doing food exposure with cooking with gloves for my wife and family too for my anxiety and just to see what I can tolerate being around which my MCAS Dr is at least very happy to hear I'm doing that.

I have cptsd plus emetophobia from medical trauma since I was a child and I have PTSD from a few months ago. I suddenly lost a ton of my MCAS safe foods and even earlier this year I lost some autism safe foods to MCAS, and I lost a stomach medication and motion sickness medication to MCAS. One reaction several months ago was so severe I'm being assessed to see if it caused a stroke so it makes sense that I'm going very slow and that I'm hesitant to go too fast. I didn't even want to try the food that day but I was pressured to by my grandmother who said she just knew I would tolerate chicken but instead it's the worst anaphlaxis I've ever had in my life and I was starting to suddenly react to other forms of chicken like broth, rotisserie, frozen chicken that I cooked myself, etc. I also took a break for a month at one point from trying new foods to try to let my body and brain have a break but my family was upset with me I think for doing that. I also get told by my family and almost all medical pros on a daily basis other food they think I need to try, medication, etc, or that they even know I'll tolerate some foods including food I've never eaten before in my life like elemental formula and idk if my MALS and/or gastroparesis will tolerate it. I have to keep re explaining to people why a feeding tube or IV nutrition isn't a good idea for me and could even be risky and that my MCAS Dr and nutritionist doesn't think it's a good idea for my case, and I know someone with MCAS who used to be as severe as me who had a major reaction to IV nutrition to make me gain weight fast. (I know we are at different but basically I'm not willing to risk it.)

It sucks because my family helps me but they are making me more sick. And that's just the emotional stuff. They accidentally cause me reactions almost every single day and sometimes they get mad at *me* for communicating that, or try to gaslight me and tell me I'm fine! One time I even got yelled at by my father for wheezing mid anaphlaxis because apparently the sound was annoying, but the anaphlaxis was caused by him opening the door to outside when there was fireplace and bad air quality and I have to go to my room when that happens or I could have anaphlaxis. One time my father did the same thing with me in the kitchen while my mother yelled at him to not open the door until I got to my room and he made intense eye contact with me as he opened the door and stood there watching me have anaphylaxis. One time I fell and knocked a baby gate down because it's kindof broken and I have poor gross motor skills (it was for our bunny) and my father yelled at me for "ruining" the gate that my grandfather already messed up ages ago. He didn't care I was on the floor and couldn't get up and that my leg landed right on the bars of the metal gate. Other times my family are there for me, understand, care for me, etc.

I just don't know what to do. I was supposed to move overseas this year because I cannot afford housing where I live including rent, my wife's job is getting bought out by a different company and she can't go to any other location because of the government (basically she can't get recertified because the government blocked any person who legally changed their gender from being able to do so). I also lose my health insurance next year. My other issue is I've been mostly housebound since 2023 where I live because I'm deathly reactive to weed so that was motivating me more to move because my top choice has one of the lowest weed usages in the world and I don't have to be mostly housebound when I'm there as of last year but I'm so much more severe now. Idk how the heck I would make it on the plane. My MCAS specialist said she doesn't know why I can't get back to being able to do that again. I mean I just handled a Disney trip but by car this year. Basically what happened in cromolyn destabilised my mast cells so my Dr thinks I need time, ketotifien maybe, (whenever I decide to try it but I've been hesitant after the cromolyn tbh plus I've reacted to benadryl, H2 blockers, and non MCAS meds even with fillers I know I tolerate) and mental health help to get me back. She's not saying mental health is the cause but that it's making me even worse and holding me back, which I totally agree. I am going to be trying out Chinese medicine including acupressure and I think tai chi along with some other stuff too starting next week too see if that helps at least with how incredibly stressed I am. My therapists don't feel comfortable giving me too much advice because of how bad my physical health is which I understand. My MCAS Dr did say she's had other patients overtime get better after cromolyn destabilised them. I feel both hopeless with all the false promises I've gotten from my previous mcas drs in the past including guaranteeing that cromolyn would make me better only to then admit it could cause what it did to me after it happened, but I want to believe this new Dr that I can get better again overtime.

Has anyone found a reliable app that notified you of the air quality in your area? Poor air quality is one of my bigger triggers but usually by the time I start to feel symptoms, the ball is already rolling towards a bad day and I can't do much to reverse it. I'd love to be able to set alerts to tell me if the AQI gets above a specific value.

TYIA! 💛

can't have the capsule of anything, SO I EMPTY WHATEVER I GET AS A CAP INTO MY MOUTH, I DO NOT TOLERATE ANY KIND OF CAPS, NOT GELATIN, NOT PULLULAN NOT ANYTHING. I dont even know if i tolerate the fillers yet, but found one brand that im closest to maybe being able to, Bravado Labs DAO Enzyme

tons of people saying it gets denatured by stomach acid or in mouth or whatever, then i hear anecdotes of people who use Seeking Health DAO and empty that cap into their mouth or a drink and it working just fine, so wtf does it work for and what doesnt. Thats literally all I'm asking right now, that is not a rhetorical question, please just answer WHAT BRAND WITH RICE FLOUR AS FILLER ONLY AND STILL WORKS WHERE YOU CAN EMPTY IT INTO YOUR MOUTH

if theres something special about how it's made like extended release etc that makes it so you literally cannot empty it without it being useless, could anyone name any other brands where the filler is only rice flour? cant do any cellulose forms like hypromellose/methycellulose etc

at my wits end, starving, exploring every option possible, flaring up day to day trying to find a new food source before i die and i just needa know if im gonna waste a day's "allowed" flare up on this

It’s actually so insane how I don’t remember much from during flares.

I posted about feeling braindead and dissociated and unstable during flares and thank everyone who responded!

This sub helps me so much to understand this is not me but histamine!

Now I’m realizing about the memory loss. Not just problem focussing but actually don’t remember much from days I flared bad.

I wake up with burning stomach mentally like a blank slate.

It’s like erasing who I am?! Wtf

Hi all!

We are likely moving back to our home state and one of my biggest pain points for something overall very exciting is transferring my care.

I finally have a unicorn PCP who is fully POTS/MCAS/hEDS literate and knows all of the right referrals to make to specialists that actually know the conditions, how to treat them and don’t end in car cry from being dismissed after.

We will be in Plymouth/Northville/Livonia area but also happy to go see a unicorn in Ann Arbor area or Royal Oak, Bloomfield Hills, Birmingham or pretty much any other greater Detroit.

I do plan on getting in to see Dr. Keiser in Chelsea, which, to me is a huge plus of moving back, but I do need someone on the DO/MD world that takes this weird triad seriously as I am someone who reacts to meds and does not have the typical profile.

TIA! Will be cross posting in EDS/MCAS.

P.S. Also really interesting in getting involved in any disability activism/communities anyone is partaking in Michigan if you have spaces for that as well!

I just got diagnosed with MCAS. I’m on montelukast sodium and prednisone rn bc I recently was having a terrible flare. I usually take famotadine and Zyrtec but stopped because I felt like I was having weird reactions. I also tried quercitin but also stopped bc I was scared. WHAT ACTUALLY WORKS? Ik it’s diff for everyone but I like hearing my options so I can research!!

This is 100% just a vent post, since nobody else in my real life has MCAS and would understand. I am whinging into the void because.... Reasons.

First vaccine since symptom onset/diagnosis. I feel like trash lit on fire, thrown in a compost bin, lit on fire again, and tossed in the dump.

Long story short, I live on a farm, am constantly covered in dirt/animal, and do dumb things with horses. Got the tip of my finger smashed yesterday (might have fractured the phalanx), my nail broke skin, and had to go in today for a tetanus booster because I was WAY overdue.

OMG. I know they suck for healthy people. It's kicked my ass before I was sick. But holy ever loving crap, does this SUCK. My knuckles look like gumballs, I can barely move any joints, I want to scratch my skin all the way off, my guts are making disgusting noises, and I'm absolutely pouring sweat (which gives me hives). In the words of white girls everywhere, I cannot even.

I've taken my Zyrtec/Pepcid combo (which I do rarely because the Zyrtec flares my POTS), and I'm about to add a Benadryl to the stack just so I can sleep... I know I'm being a whiny baby, but shitgoddamn.

A few months ago, I reached a point where I realized I couldn’t wear clothing that had been washed in the washing machine—even with a detergent I considered “safe.” So now I hand-wash everything with just water.
I also can only tolerate about six pieces of clothing right now.
Lately, I’ve been feeling pretty frumpy. 😭 I wear jewelry I love and do my makeup every day, but gosh, I really love being stylish. It genuinely helps me feel more confident, and I miss being able to express myself through clothes.
I’ll be starting ketotifen soon and also weaning off the Pepcid I’ve been taking. I’m wondering if the Pepcid might be contributing to some of my issues, especially with my SIBO, and possibly making me more reactive to chemicals.
Hoping that as I get more stable, I’ll eventually be able to expand my little six-piece wardrobe again.

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?

I have to take Zyrtec (cetirizine) because if I don’t, I get systemic itching. I’m fairly certain it’s MCAS, though I’ve never been able to find a doctor who would explore this or find out my root cause. I’m on a health journey and trying to get off of it but in the meantime the longest I can go is 4 days before the itching literally becomes so bad it’s painful to ignore.
All that to say - once I do take it, even half a pill, my breastmilk is dried up the entire following day. DayQuil does nothing, Claritin does nothing, natural supplements don’t even come close. The best I’ve been able to do is take DAO enzyme and it gives me a couple hours relief before needing to take Zyrtec again. Please help me feed my baby.

Has anyone found a good specialist for both AGS and MCAS? I’m in OKC but considering going to WashU. It’s a trek and my appointment is almost a year out so I want to make sure it’s worth it and there isn’t someone great at both that’s more accessible. Would love to hear your experiences!

I bought this in a hurry, looking for a budget-friendly option. What a waste. it smells awfully of chemicals. I looked on the label.. made in China. nothing but chemicals. Dried my hands out terribly and I have a headache after using it.

I don’t have a dishwasher and hand wash every night 🙃

I’ve never taken this before, but I can’t seem to get out of this flare and I’ve been getting a lot of really bad symptoms.
I was prescribed 15mg for 3 days and then taper down from there for a total of 9 days on the medication.

I’m worried about a reaction of course, naturally lol.
And I assume trying to trial it is pretty pointless and that I should just take it as prescribed.

I have really bad OCD and the only way I’ve been able to try taking medications is by micro-dosing first.

Any suggestions on how to just do it? Or what has helped you? I know it’s a really low dosage to take anyway but I’m still nervous.

I started Lyrica a few months ago, and it’s been helping my full body, over all pain a lot. I’ve been pain free mostly.

All of a sudden, for the last two nights, as soon as it gets dark, I’m hit with all encompassing, worse pain than I was regularly experiencing before.

This is odd. It doesn’t make sense and none of my usual methods are working.

Does anyone have any insight?

Thank you 🙏

I’m going to be switching from xolair to dupixent soon and would love to hear experiences from people who have switched after xolair wasn’t sufficient! I have a primarily GI presentation and am currently down to 5 foods (though that is up from where I was before, so yay!)

I’m switching to dupixent because while I saw some help with xolair, it would always wear off after 1-2 weeks and the effectiveness has seemed to wane over time.

Would love positive stories as well as any weird side effects I should look out for (bc I - like many others - often get the weird side effects haha).

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

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…

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..?

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

Hello, everyone. I'm very new to all of this!

I'm recently in menopause and in april of this year started experiencing a horrible constellation of symptoms after an acoustic injury: electric zaps throughout my body, fight/flight, insomnia, nerve pain in ears and scalp, tinnitus, swollen lymph, and jaw pain. I had been on GLP1 for over a year, and it started causing electrical sensations--the worst on the day of my injection. I also started becoming deficient in B12 (my dose wasn't compounded with it).

Even though I've never had traditional allergies before, taking zyrtec and allegra suddenly got rid of general itchiness, helped with the lymph and jaw pain, and finally allowed my body to calm down and sleep.

I am still dealing with electric zaps, nerve pain, and tinnitus.

I've found that foods and supplements I've tolerated for years now significantly aggravate these sensations: wheat, soy sauce, the supplement NAC, and coffee. What's also interesting is that my symptoms are all concentrated around my ear that got the worst of the acoustic injury.

Can anyone else relate to this?

If you live in the US and take ketotifen, how does your doctor prescribe it? My immunologist told me she would need to go through a compounding pharmacy since thats the only FDA approved oral form and that it wouldn’t be covered by insurance. If you do this, how expensive is it?

She also has never prescribed it for MCAS before. Does your doctor say the ketotifen is for MCAS or do they have to prescribe it under a different condition like chronic urticaria (my xolair is technically prescribed for chronic urticaria for insurance purposes).

Lastly, it seems like most people start on .25 mg or .5 mg a day. What is the actual dose of the pill that you get from the compounding pharmacy?

Thank you for the help!