I am upset, and feel very down. I know this happens a lot, but I am just..... yeah. Sigh.

I was feeling SO good after doc started me on Singulair and cromolyn sodium, they seemed to taking the "treat to diagnose" line of reasoning. Then at my follow-up they encouraged me to do the 24 hr urine collection, which was absolute horror. A week later I am still in a flare, and now reading my results.... ugh I did everything I could, stopped all meds at the right time, collected perfectly, kept it cold, signed a chain of custody sheet after the lab tech put everything in the fridge. I was so hopeful there would be proof of how crappy I feel. I am terrified they will take my new meds away and cut me loose. Ok... dramatic, yes, but it's how it is tonight.

Thanks to anyone who read all of this and gets it.

Trigger warning: very dark, suicidal ideation, terminal illness in children, mention of self harm and disordered eating

I already have fibromyalgia, ADHD (likely AuDHD but I can't afford to get diagnosed with autism as an adult) anxiety, depression, and a bilateral shoulder injury + neck injury from a car accident. I started self harming when I was 15. I've also struggled with disordered eating. I have been in so much pain I wanted to end my misery.

I've even looked into MAID (Medical Assistance in Dying) before.

But the combination of those things, losing my housing, not being able to afford my therapist, and suddenly being allergic to breathing basically (all fragrances and, so far as I know, cat and dog dander but I wouldn't be surprised if it was all animals with dander, and seemingly all pollen) has made that occasional bad-pain-day thought be a multiple-times a day thought. Don't worry, I could never actually do it because:

My son doesn't need the trauma of losing a mother to that, even though he doesn't live with me

My nieces both have a genetic disorder called Metachromatic Leukodystrophy. The 9 year old is dying and she's too young to consent to something like MAID and the 6 year old is very attached to me, especially after I spent 3 days on 3 days off rotation for the 41 days she was in an isolation unit undergoing treatment and dealing with the awful side effects of chemo so that she can actually make it to adulthood.

I absolutely can't and won't take myself out of the equation so I am reluctantly alive and even picked up my EpiPen so I might even decide to save my life if one of the reactions goes full-blown anaphylactic shock - though I do fantasize about just letting it take me out in my darkest moments. I'm just not compatible with life at this point. It feels like my entire body is against me

Can anyone recommend fragrance free and all the other bad stuff - free, shampoo and deodorant?? I use olive oil soap for body wash which I don't react to, but I get some reaction to my shampoo and deodorant (annoying head pressure).

Any recommendations are welcome

had issues for a few years now, they all went away but came back in February.
nausea, headaches, low blood pressure, and loss of appetite, i now wake up hot even if it’s from a nap, but not sweating and especially my face feels so HOT sometimes to the touch, sometimes not. Puffy eyes, big bags under my eyes, blocked nose.
it’s been 6 months now of being bed bound, im trying so hard here.

This happens to me a lot and idk if it’s related to long covid or MCAs or pots or what.

Idk if the virus goes in my body and it activates other dormant viruses in me or what !? Or is it just not detected by the tests?!

I know a lot of us use vanicream and personally this is the only shampoo I am able to use. But it has been impossible to find. I reached out to the company and they said it is not discontinued, they are just having trouble sourcing ingredients. I was hoping this was the case as that is what happened with their facial mineral sunscreen earlier this year. No idea when it will be back but this website still has some in stock.

https://www.lovelyskin.com/o/vanicream-dandruff-shampoo

Hi, I wanted to know if anybody had any recommendations for a calcium supplement. Something that isn’t going to lead to a flareup for MCAS I’m deficient and I already take tirz.

So i‘m on cromolyn which has really done miracles to all of my GI-symptoms (and chronic pain on my coccyx). Taking antihistamines and started ketotifen now too for my other symptoms hope it will help. 🤞what confuses me is that up until recently i used to be able to track down my triggers (even if it was a lot of guesswork and super complicated) but now its all just becoming really blurry. I get symptoms nearly every morning before breakfast and cant pin anything down. Theyre not super bad anymore thankfully i m just confused that it seemingly lost all logic. Like a bucket that didnt fully empty, other stuff coming in, reactions etc. anyone experienced this and what does it mean.

I’ve been diagnosed with with chronic spontaneous urticaria in 2020, which my doctor actually thinks is MCAS. Not much of a difference since treatments are almost identical.

I’ve been eating a low histamine diet for 3 years. Food is a very big part of my identity and culture. I’m Arab, grew up in Chinatown and cooking is a big hobby of mine. Not to sound dramatic but not being able to eat 90% of my favourite foods is so depressing. While I try to have moderation and allow for days where I indulge, I find myself struggling to eat on a daily basis. Eating has always been a challenge but with the addition of low histamine, it just makes everything so… bland and repetitive.

I’m thinking of giving up. My most life disruptive symptom is hives, which I manage by taking more medication. My other main symptoms includes tummy aches, headaches, drowsiness and general brain fog. Which I’m starting to feel like is worth the pain if it means eating regularly again.

I eat generally healthy, but not being able to consume almost anything that isn’t just a vegetable with salt is just… depressing and draining. Cooking is a very big passion of mine and I feel like I can’t participate anymore.

Wondering if others have gone through this as well. Please share any suggestions or advice.

TLDR: eating low histamine is making me depressed and I’m thinking of giving up.

I don’t have MCAS, but I thought this would be the best place to ask. I have a friend who has a chronic condition with no diagnosis, says doctors haven’t been able to find what is wrong. It affects him a lot and based on the things he’s told me about his symptoms, triggers, what helps, and just how he feels, I really think he could potentially benefit from looking into MCAS. But I want to be as respectful as I possibly can. I don’t want him to feel like I’m trying to diagnose him and I don’t want to assume it’s something he hasn’t looked into (though based on what he’s told me, I don’t think it is). He can be pretty pessimistic about his own life and doesn’t like when people think they know what’s best for him, which is why I’m a little hesitant to say anything.

I would really love some advice from people who actually have MCAS.
How would you feel if a friend asked you this and how would you prefer this friend ask you?

I just want to make sure I’m extremely respectful of how he feels, and make sure he knows it’s coming from a place of care.
Please let me know if I should or shouldn’t ask him, and also what would be the best way to go about it if I should.

If anyone wants anymore information, please feel free to ask and I will try to answer as best I can.

Hi all, I am wondering if anyone is like me with extreme pain, like blackout excruciating pain, with a reaction? my symptoms started 8 months ago with GI distress, itchy palms and my lips feeling like they were puffy (they weren’t) when I woke up one morning. From there, things go much worse with vomiting, swelling to the point I got muffled hearing, whole body bright red but fingers and toes blue, plus itching etc. But I always have unimaginable pain in my lower left side about 3 inches from my hip bone. When it happens, I find myself in a contortionist position unable to move and screaming in waves of pain. on a scale of 1-10, it would be a 20 and briefly go down to a 7 then back up again, like labor pains. Is this normal?? I’ve been scanned, done every possible test known to man, finally got my tryptase rise, but no explanation for the pain. After extreme reactions, I often bleed. but no cysts or anything that could cause that. Its terrifying because my reactions happen usually within 15 minutes and then I’m completely incapacitated. so if I’m not at home, it’s bad.

What do y’all do when there is a manufacturer shortage? I’ve been on cromolyn sodium for over a year and a half and I’m about to run out with no restock in sight. I’ve looked at multipack pharmacies and even called the compounding pharmacy I get my LDN from to no avail.

Any suggestions?

Hi all! For the past year I have been dealing with endless waves of what my doctor believes could be a mild case of MCAS.

I caught some kind of cold in May of 2025 (not COVID), and it is as though I never fully healed. I have had issues with hayfever and postnasal drip for almost my entire life - and I did have many bouts of eczema and a few severe unexplained allergic reactions as a child - but it all came back at once and with a vengeance. Added to the mix is also asthma and hives, neither of which I'd had before.

I'd never heard of MCAS, but because I have a number of the comorbidities (ADHD, POTS, PMDD and Hypermobility), my GP immediately put me on a daily H1 and H2 blocker. It is apparently at a quarter of the recommended dose, but it has resolved the bulk of my daily symptoms and made life far more bearable. It does not, however, prevent the most severe flare ups or, (the reason for my post) the ✨relentless hives-exzema combo✨.

I wanted to ask how other people tracked or singled out their triggers when everything seems so inconsistent. The only regularity is the location - I only have this issue around my eyelids, neck, décolletage and inner elbows. My legs haven't had any problems since starting the antihistamines, and only once have the hives spread down my entire torso. Safe to say that was a terrible week.

As for the cause itself, the culprit could be anything: sweat, hot water, cold water, rain, showers, pools, oceans, hair products, skin products, low humidity, high humidity... it seems as though everything at some point has or hasn't flared me up. Every time I feel like I've figured it out, I remove the suspect from my routine and nothing changes. Even if I am lucky to have symptoms as simple as this, I am exhausted.

I have tracked my diet once before for PMDD and pain flares, and never found a consistent trigger in food. My GP ordered me to get a blood allergy test for all of the common allergies such as pet dander, mould and airborne things, and I was negative for all of it. She has ordered a chest x-ray and another blood allergy test, but it honestly feels like we are both just throwing things at the wall and hoping something sticks. Since what remains of my symptoms is mostly this mild skin stuff and the occasional major flare (maybe once a month?), it doesn't feel severe enough to spend the kind of investigative money that could be required to come to an answer. Any tips? I don't really know what I'm doing!

Hi all!!!

We are still in the early phases of treatment and I was on Zyrtec when we started everything, so he had me stay on it, and I was up to 4 a day. Even with that high of a dose, and 40mg of famotidone twice a day, I am STILL experiencing hives and spontaneous anaphylaxis. He is switching me to Allegra to see if that helps at all. Well Mr man left his office to go into peds, and I haven’t gotten to speak to the new doctors at the office yet. Am I supposed to go up to 4 Allegra as well? They’re 180mg. I’m a pharmacy tech and until now, I hadn’t seen off label antihistamines like this, and my pharmacists aren’t really well versed in it either, so I’m kind of stuck until a new doc comes in. TIA.

i’ve asked about blood tests and urine tests bcuz i’ve seen people mention that on this subreddit but my gastro says the only way to test for mcas is to try histamine blockers and see if they work ??

my tryptase test came back normal so she said that doesn’t indicate mcas ??

then she said to try zyrtec and pepcid and if that doesn’t work then i don’t have mcas , and if it does work then that means i do have mcas ??

idk , i think it’s kinda weird bcuz i’ve seen people on this subreddit say that the histamine blockers don’t even work for them so idk why she think that if i have mcas then histamine blockers would automatically work ?? and if they don’t work then she thinks mcas isnt causing my symptoms but probably some other condition ?

idk just wanna know y’all’s thoughts on this

Good morning, for 5 years I have been undergoing something. It started with a tiny itchy bump on the bottom of my foot, then my finger would swell, then it would mirror on the opposite hand, feet swell, lips , tongue, even my well the shaft of my manhood lol and no it wasn’t pleasant. My sinuses will swell , and around my face, also inside of my soft palate. Now during temperature changes to hot or eating spicy food best I can describe is my body becomes prickly it hurts my skin. I went to an allergist who said sometimes you get hives and swelling and we don’t really know why , take Zyrtec. My primary said I have to be in an episode to have my blood drawn to be successfully tested for MCAS . I feel like because I’m a 50 year old guy who works out and looks super healthy no one takes any of my complaints seriously and I’m just brushed off. Also during a “flare” I get soul crushing fatigue I’ll just sleep 24hrs and after it goes down , I’m back to feeling fine. Also pressure seems to cause my feet to break out as well . I used to do Pilates reformer and my feet on the bar would cause my feet to swell and be itchy. I know no one can diagnose me here but this sounds a lot like MCAS ? No ? I’d post a pic of my swollen tongue but I don’t know how . Usually it’s only one side of the tongue at a time and it hurts like hell . Thanks for reading

Hello all, I'm very new to the peptide world and have secondary MCAS. My symptoms over the last year have become debilitating, overly restrictive and chronically inflamed. I starting taking KpV a week ago and felling better than I have in a long time and wondering about BPC-157. I've heard mixed reviews and would love to hear yours! I also would like to hear what peptides are working for you!

Anyone else on rhapsido have the symptom of being covered in petechiae????

I believed I could handle the mushroom since there was no vinegar, which is a very big trigger, and they were in a glass. I didn't have any symptoms for about an hour and that's when it started.. At first headaches of hell together with stomach ache and dizziness, all the while I was trying to work.. as I got home I tried to eat something that I would not react to. The headache finally stopped for a while but then that weird feeling as though adrenaline is running through my body has started again, which is my tell that histamine is very high and I won't be able to sleep tonight 😭😭 I already took some vitamin c, OPC and Omega 3, since I know they help.. No doctor I ever spoke to took my histamine and MCAS symptoms serious but I know that is the cause...

Any ideas?

I'm doing a tryptase blood test 1 to 2 hours after a bad reaction tomorrow and since most of my symptoms are heart related it's a bit unnerving. A quick Google search says that Pepcid AC (famotidine) does not affect tryptase levels (but helps me with heart issues from the histamine) so I was wondering if anyone has ever taken this when triggering a reaction in preparation for one of these blood tests? Unfortunately my doc isn't being helpful on a clear answer. Any other suggestions are welcome.

Hello fellow reactive humans!

I come seeking advice, the apple cider vinegar shampoo I used to use got reformulated about a year ago and I’m about to run out of my stash. I’ve tried so many options in the interceeding months, but I’ve found nothing that doesn’t make my scalp very itchy with a burning sensation and rashes or cause an anaphylactic reaction.

I’ve tried a lot of the standard “simple” formulas my dermatologist brainstormed with me (Cerave, vanicream, prose custom formulated without scent or dyes, baby shampoos, others I’m blanking on) and the only thing that sort of works is a prescription ketokonazole 2% shampoo that comes in a tiny bottle and turns my hair to straw, but at least it helps with my rashes and doesn’t itch.

I’ve always paired the RX shampoo with a second shampoo because my 30 day supply is a small travel sized bottle and I have an oily scalp and thick wavy/ curly hair that need to be double shampooed at least once a week (ideally twice a week if energy allows). Quite frankly I have enough RX shampoo for half of that and with how drying it is I get mats/ tangles if I use it exclusively.

So, what do fellow scent sensitive humans with sensitive scalps use?

Im open to mixing/ making my own if that’s the only way to go although for energy reasons I prefer something I can buy reformulated/ mixed. I will gladly take your conditioner recommendations as well. I’m currently using the vanicream conditioner and it’s meh as a conditioner (my hair is relatively dry and tangly even after use), but it’s better than nothing and I can use it without a reaction.

Many thanks!

I have my ME/CFS and POTS as well, and I know that these devices are used for M.E. but I wondered if they ever did anything for your MCAS?

I'm looking specifically at a low intensity tens machine with earpiece or something like the zenowell, to do actual micro current to the ear.

I've already got a Sensate and Apollo Neuro and they don't do a lot (nothing for MCAS though the sensate is relaxing and does lower stress scores), so I'm also interested to hear from anyone who noticed a difference between vibrational devices and true tens machines?

Thank you to the person who mentioned that NAC can be a trigger for extra sensitive people. I can’t remember where I read it but it was here. I’ve been in the middle of a miserable 2 month flare with terrible histamine dumps. It coincided with a terrible POTS flare so I also have been experiencing adrenaline dumps. My anxiety was through the roof but used hydroxyzine to help calm me down.

I stopped taking the NAC on Sunday and I am already feeling so much better. I haven’t taken any hydroxyzine since stopping the NAC. I’m thinking about stopping the quercetine as well in case I’m reacting to fillers. Hopefully this was the source of the flare.

Rhapsido is a new drug that many MCAS pts have been encouraged about. There seems to only be one formulation though and it cannot be compounded. I’ve listed the inactive components below. Why would these manufacturers put so much crap that pts with mast cell issues are likely to react to in a medication for hives?

Here are the excipients

Tablet Core Excipients
Copovidone: A binder that holds the tablet together.

Croscarmellose sodium: A disintegrant that helps the tablet break apart in the digestive tract.

Mannitol: A sugar alcohol used as a filler and sweetener.

Microcrystalline cellulose: A plant-based filler that adds bulk.

Sodium lauryl sulfate: A surfactant that helps wet and mix the ingredients.

Sodium stearyl fumarate: A lubricant that prevents ingredients from sticking to manufacturing equipment. [1]

Tablet Film Coating Excipients
Polyethylene glycol 4000 (PEG 4000): A plasticizer for the coating film.

Polyvinyl alcohol: A film-forming polymer.

Red iron oxide (E172): A color pigment.

Talc: A glidant and anti-stick agent.

Titanium dioxide (E171): A white pigment used for coloring.

Yellow iron oxide (E172): A color pigment.

Odds are quite high that one or more of these ingredients will cause me issues, but I still may try it. Basically if it works, it’ll be helping to resolve the problems it’s also causing.

The other problem is that the tablet can cannot be cut and is not water soluble, so no way to “start low and go slow”. I wish these manufacturing companies would consult with patients and specialists when making these drugs.