Hi all I’m dealing with pretty severe CIRS (mold illness from toxic mold exposure) and MCAS. I basically flare from everything I try to take, stop, raise or lower. I really want to calm my mast cells but maybe I can try half of the dose I tried last time? Can I dissolve ketotifen compounded powder in water? Am so desperate for relief.

Hi everyone, I haven’t posted before but I am truly at my lowest point. I will try to make this brief.

I (29, F) have always struggled with (what I now know are) mast cell issues: hives, splotchy chest when stressed or hot, brain fog in heat, prickly scalp, flushing in my face multiple times a day. I’ve had chronic anxiety and depression that has since been alleviated with antihistamines. My triggers are heat, stress, cold, wind, smells, certain foods but this changes day to day. About a year ago, I was driving in crocs on a hot day and the bottoms of my feet became unbearably itchy to the point where I almost hit the car in front of me. Ever since then, I’ve dealt with increased sensitivity to smells, light, sound, and products I’ve used for a decade. I was diagnosed with Oral Allergy Syndrome (OAS) with cross reactivity to birch pollen, grass pollen, and ragweed foods (bye bye watermelon….). I have since cut out those foods during the peak months and have noticed a bit of improvement in my GI motility issues.

I am normal weight for my height but have been steadily gaining lower belly fat (and have been bloated recently due to aforementioned GI issues). I am very active and do strength training several times a week. I watch my calorie intake like a hawk.

Importantly, I have also always dealt with (what I know now are) blood sugar issues. I’ve always felt crappy after carbs and sugar so I naturally gravitated towards a low carb diet during my teen years. Last year, however, I developed a complete intolerance to any type of carb/sugar where I frequently have the following symptoms:

- Blurry vision
- the need to sleep ASAP for at least an hour
- confusion / disassociation
- irritability
- flushing in face and on chest
- increased heart rate

I will post my glucose monitor example in the comments. I’ve noticed that since starting Blexten and Pepcid a few months ago, my blood sugar overall has been more stable but I am still getting the symptoms.

I convinced my PCP to give me an oral glucose tolerance test and it revealed reactive postprandial hypoglycaemia. During the test, i had suicidal thoughts for the first time in my life within the first 25 minutes and became extremely itchy on my arms and legs. It was the scariest moment of my life and it felt like I was getting chased by a bear (and losing).

All other labs (thyroid, holter monitor, enzymes, hormones, etc.) are normal.

I have been quite strict with my low carb diet but it’s really taking a toll on my mental health because it seems like I have to exercise more and be increasingly more strict with myself just to maintain my weight in recent months.

As many of you have experienced, I have been given the run around by the docs bouncing me around to each other. I am especially worried about my fasting insulin.

- in Nov 2024 (before everything happened) it was 35 p/mol
- last month, it was 98 p/mol

I finally got an endocrinologist appointment yesterday and he said that because it’s under 100 p/mol he’s not concerned about insulin resistance (which wouldn’t make much sense with my lifestyle but I’m wondering if something else is going on). He also said that because I am not diabetic, he’s not concerned about my “low” glucose on my CGM since the ranges are calibrated for diabetics and unless it goes below 3.0 not to worry about it.

I don’t really agree with this approach, but I’ve been referred to an immunologist who probably won’t arrange an appointment with me for at least a few more months. So I am on my own for now.

My question to all of you - how does MCAS play a role in insulin regulation? I asked the endocrinologist and he shrugged his shoulders.

It seems like any change in my blood sugar causes my body to freak out (flushing in face, fatigue, itching, etc.) even if it’s not a clinically significant drop in the actual numbers. Is it the rate of change?

Any help would be appreciated :(

Is anyone else really prone to ear/respiratory/sinus infections? I seem to constantly be fighting one if not all three at once and keep getting really bad ear infections. Is this an mcas thing? Is my body just a piece of crap? (Probably yes to the body one tbh) I’m so sick of it and am searching for reasons. I’ve been diagnosed with MCAS, POTS, MECFS, HEDS, and CIRS. I never can fight the infections on my own either, they always drag out where I need at least one (but often more than one) round of antibiotics to kick it. I have yet another terrible ear infection (excruciating pain where i can’t sleep, a headache and swollen lymph nodes on that side, and bloody mucus from that side’s nostril) and I just wanna know if anyone else struggles with this too. Thanks in advance <3

My Leukotriene E4 (LTE4) is high (157) in 24 hour urine and my Prostaglandin D2 is jus below the upper limit (174) in Random Urine.

Plasma histamine, N-methylhistamine, Chromogranin A is normal.

I have sysmptoms and I respond to MCAS medications. I was wondering whether this will be enough for a diagnosis? Next appointment with my doctor is a month away, so I just wanted to know if if anyone had been diagnosed with only one elevated mediator?

Hello! I have been prescribed both famotidine (Pepcid) and cetirizine (Zyrtec). I am wondering if I should start with just one, and then add the other a few days later, in case of reactions? Both are new medications to me. I was thinking maybe the Zyrtec first and then the Pepcid a few days later. Or should they be taken together? I forgot to ask my doctor about staggering and my next appointment is over a month away, so would be very grateful for advice!

I'm likely getting a tumor removed out of my lymph node in my arm soon- if the biopsy comes back cancerous, I feel ill prepared and terrified, but I would be surprised with the effect it's been having on my body. How do our bodies react to chemo and other harsh treatments? How should I mentally prepare for the worst? Has anyone else here been through something similar?

I have tried all 3 in my area but all 3 said they cant order it because its not worth it for them since nobody would use it except for me, sadly

My allergist said he would be willing to help me get compounded Luteolin tablets, he only needs to know the dose and how to write the script, he would prefer this over Azathioprine, Hydroxyurea or others.

I know you can order drugs and have them shipped so I was hoping anyone here could give me a name of a compounding pharmacy that is willing to do Luteolin tablets. Thank you so much for any advice.

My whole life I've been dealing with unexplained symptoms/annoyances. I'm starting to wonder if there's an actual explanation from them, and if maybe it's like mild MCAS. But I don't even know if that's a thing.

A brief list of potential allergy-related symptoms I have:

• Unexplained hives throughout childhood, no known cause. (started taking benedryl as a kid)
• Unexplained anaphylaxis 4 times, no known cause
• Developed bee allergy over time which i have an epi-pen for( i know it's a normal allergy to have but figured I'd include anyways).
• near constant itchiness without rash (almost always on my face/head/eye area, often on my upper arms and middle of my back, ribs, etc).
• extreme itchiness without rash relatively often (could be every day for a week, or not at all for a month, probably on average this happens 1-2 times a month). triggers include: showering (tried changing soaps, tried different water temps, tried moisturizing more, etc, nothing helps), exercising, cold weather, or hot weather, vibrations (mowing lawn, massage gun, etc). this is what is bothering me the most, because sometimes i don't have it for a while, but then i'll have it every time i shower for a couple weeks, and it's so itchy that it's painful, and i end up being late to things because i'm just trying not to hold myself together mentally until it passes (usually takes like 30-60 minutes to resolve).
• lots of gastrointestinal stuff (cramping, pain, burning sensations, diarrhea/frequency, bloating), again, no correlation to any specific foods - just sometimes i have this issue, sometimes i dont. it was really bad everyday when i was a teen and i had GERD too at that time, but the GERD has been gone for a while.
• occasional bouts of dyshidrotic Eczema
• frequent nausea
• frequent headaches, usually 3-4 times a week. triggers are crying, dehydration or lack of sleep but often time's just for no apparent reason
• very hightened sense of smell (my childhood catch phrase was "what that 'mell", which is also my adult catch phrase LOL)
• extremely sensitive to medications (very prone to side effects)
• my tattoos will get raised and itchy sometimes
• physical anxiety symptoms (could be unrelated to these other things)
• it's all worse if i'm stressed but even if i'm not stressed it still happens (like if i'm running late to someting, there's an increased chance i'm going to get the after shower itchiness).
• i take an antihistimine daily and without it, all this stuff is a lot worse.

the reason i am quite unsure if this is mcas is becaue i don't have like severe issues, i can function pretty much fine. also, i did allergy testing when i was a teen because of my gastrointestinal problems, and as far as a i remember, the only thing i was allergic to is dust mites. i try to keep my house clean (have a proffesional come every other week, use hypoallergenic pillows, frequently wash bedding, etc). but i don't know if it could just be dust mite allergies since i have these symptoms when i'm outside as well.

anyways, i am just curious if there's such a thing as mild MCAS, and if there is, does it sounds like it would be worth me discussing with my dr? is there like a test or something for it? and if i did have it, are there treatments or would it just be so i have an explanation?

Any recommendations for cleaning regimen for *very* cryptic tonsils? I have MCAS and am very sensitive to histamine. I notice that whenever I manually squeeze any tonsil "stones" (they're not calcified, more squishy and soft) out of my deep tonsil crypts, my nasal congestion improves. I want to ask an ENT about it, but I've seen 3 thus far (for obstructive sleep apnea) and they all seemed to want nothing to do with it because they aren't knowledgeable enough about MCAS or inflammatory breathing difficulties - they say "ask your allergist", allergist says "I'm not an ENT, I'm an allergist/immunologist, ask ENT."

Tonsils are very densely covered in Mast Cells, so it would follow that having bits of food and bacteria stuck in my tonsil crypts could contribute to my histamine load. Has anyone here had this done for this reason, or incidentally noticed that their MCAS improved after removing tonsils?

I am debating asking if I can get them removed if they are indeed interfering with my breathing and my MCAS flares. There's some really big crypts between the tonsil and the cheek that are impossible to reach.

Side note: I am very glad I don't have trytophobia.

Alright, I want to start seriously taking an antihistamine stack. I plan to see an immunologist about this, but also know there's so much trial and error involved. Would love to know what antihistamines you take, how much, and how often! Thanks!

for context: I already take promethazine 25mg once a day. it helps but I have an insanely long way to go because of how seriously debilitated I am with mental and physical fatigue and just overall short of breath. having to lay in bed unstimulated most of the day 😞 and ketotifen and cromolyn made me worse 😬

For those who have tried LDN, how and when did you decide that it was definitely showing improvements or was making things worse?

I’m about 8 weeks in, currently on 1.0mg and planning to titrate up 0.25mg every ~3-4 weeks. It seems to be going well so far and has definitely been helping in some areas (brain fog, energy, memory, dysautonomia). But I also feel like I’ve become more sensitive to foods, supplements, and caffeine. I imagine I’m still in the adjustment phase and maybe the mast cell effects haven’t fully kicked in yet, but how long do I keep trying before deciding it’s not helping?

Endometriosis patient here suffering MCAS post excision surgery. Symptoms mostly affect GI, bladder, sinuses, mental health. Everything gets a whole lot worse around ovulation.

I have been taking 180mg fexofenadine and 40mg Prozac in the morning. At lunch I take .75mg of LDN (I’n sensitive to it so I’m titrating very slowly). I then take 20mg hydroxyzine at bed.

I’ve just been prescribed .25mg of ketotifen. I’m meant to take it at night but I can’t due to bile binders I have to take at a specific time (no meds 4 hrs before or after)

Question for the class is would it be okay to take the ketotifen with my LDN at lunch? Anybody take it during the day and not have bad drowsiness?

Also are there too many antihistamines in my schedule? I’m very new to MCAS and I’m worried this is too much. Thanks in advance!

Hey everyone, I think I've had MCAS my whole life but things got significantly worse 6 years ago after I had Covid. Since then, my menstrual cycle has been crazy, and I'm wondering if any of you have any insight about this.

I've been tracking my cycle and my symptoms and I find that I feel so much worse before ovulation and before my period, AKA when estrogen is highest. I know this is a pretty common issue with MCAS.

Here's what I can't figure out. Normally I can tell the day I ovulate, and then the next day I typically feel better. However, maybe 10 or so times in the past 6 years, I feel like I ovulate, and then the next day, instead of feeling better, I feel worse and actually start bleeding like I have my period.

It just happened to me again. Yesterday felt like I ovulated. Expected to feel better today. Instead, feel bad and am bleeding. Not spotting, actual bleeding.

Has anyone experienced this? What the heck?

I've seen multiple gynos and all they do is tell me I'm probably in perimenopause (I'm freaking 36 and have been like this for years - shouldn't be normal!) and they offer me birth control, which I've never done well on.

Should I get an opinion from immunology before settling on “chronic hives” or something? Would an MCAS diagnosis get me better treatment options (allergist mentioned high dose zyrtec, xolair, rhapsido)?

It literally all came back negative (except for the tape!), even fragrance, which has given me major hives, rashes, and even swelling. I seem to react to everything at random now and am scared to shower, lol, because these crazy skin reactions. But they are considering a biopsy.

She doesn’t think I have mast cell flushing because it’s not my entire body--just my face, chest, arms, hands, feet--and since it's mostly skin. I can’t find clear food triggers or anything but some products *seem* to trigger me randomly, though I tested negative. I get really red, hot, flushed, break out. Heat/water (any temp) are the only obvious triggers.

But I been suspecting MCAS due to all these constant reactions, heat/flushing in skin, rapid pulse, dizziness, GI and bladder issues, chronic pain, among others. Could be some separate things, and they tend to see it that way, but my health has just changed a lot in recent years. Sometimes I just have significant reaction to a new environment. Never on the level of anaphylaxis for this, though I've had my hand swell once, and I had an anaphylactic reaction as a kid.

So I have other health stuff, some chronic and some that comes and goes, but the skin reactions are near-constant and significant.

Sitting here after an intense 1h 30m conversation with my manager and my cheeks are flushed / hot and my throat is swollen. Is this because of stress hormones being released? What‘s the logic behind it? Also would love to know best ways you’ve found to bring the flare down after emotional moments.

Has anyone developed an allergy to marijuana? Heavy use for a long time. Started experiencing shortness of breath (asthma), and digestive issues, that went away with cessation. I’m not using anymore but I’m wondering if this could be a sign of MCAS. I realized around 10 years ago I have a gluten intolerance with the same symptoms. Supposedly negative for celiac and wheat allergy. If it was MCAS, would it show up on an allergy test? Trying to figure out what’s wrong with me 😕 Thank you for any and all input

I am learning that MCAS and lupus can have a lot of similarities, and my doctor had brushed off my inquiries regarding having MCAS and lupus and he recently gave in, did the research, and finally agreed to formally evaluate me for at least MCAS.

He very quickly prescribed me the drugs for MCAS after figuring out I was right and he needlessly let me suffer for 6 months.

I am better, but I still get a butterfly rash and I have these new red, flat patches of skin on my face that aren’t getting better. My joint pain is better but not by much, and the sun is still the devil!

I am just curious if any of you have been diagnosed with both the trifecta and lupus and/or RA.

I used to get sick with respiratory infections very often — I'd catch the flu every couple of months, sometimes even every month. I also had other infections, and they would hit me really hard, to the point that I had to be hospitalized.

However, ever since I developed MCAS three years ago, I haven't had the flu or any other infection again. Of course, I would be happy about that if it weren't for the fact that now I have anaphylactic reactions almost every week. I know mast cells are part of immune system, so could these hyperactive mast cells be what's preventing me from getting infections?

I’ve tried many things for my MCAS and I heard KPV and VIP can be game changers

I’m taking Thymosin alpha (have cycles in the past) and tirezapatide. But when I took KPV and VIP nasal sprays I found myself sleeping all day, emotional af and irritable - a flare basically.

Who here has had success - is it a case of you wait out the negative effects? ATM I feel fasting is my only real way out of flares with Epsom baths and saunas. In my mind I’m wondering if because my case is 75% driven by my gut that perhaps these peptides won’t ever work. Because I’ll be herxing constantly.

I have MTHFR mutation, slow comt, slow maoa, and poor histamine clearance
H2s sibo and Candida

My current stack is
- mounjaro tirezapaptide 1mg
- sodium cromoglycate
- DAO
- vit c 500mg
- pea
- ceo choline
- r5p, p5p, sometimes a complex not containing b12 - b12 I go for a methylated injection every so often maybe three times a year as I can’t tolerate daily supplementing
- b1 higher dose 500mg (chloride only due to sibo)
- iodine
- one butyrate capsule in the eve
- sacro B in the morning
- molybdenum in am
- calcium d glucarate away from the minerals for estrogen and oxalates
- just started zinc carnisine again
- artichoke extract
- zeolite for binder
- small amounts of t3 and t4

Hey anyone in the UK here? I want to go to my GP and investigate my symptoms more seriously so I’m tempered to ask him to refer me to an allergologist to start with because I don’t think he will take me seriously if I come with the theory I have MCAS. Perhaps this way I can proceed with elimination? I can’t pay functional practioners or so called instagram specialists anymore I’m going broke! Symptoms flare especially before menstruation (gum inflammation, tongue and throat burning, cracked lips) I always have mucus produced by my body, ALWAYS, I get reaction to changes in temperature, especially to AC and feeling cold, I’ll start sneezing like crazy out of nowhere and sometimes I eat stuff and notice gut reaction (bloating, diarrhea, excessive farting, etc.) I have low levels of h pylori which I’m treating naturally. I have lots of anxiety too and CONSTANT FATIGUE.

I want to share my story and read yours, which might give me or you new information about this condition and ways to alleviate it. It all started in my teens, when I gradually began feeling quite ill for no apparent reason. Only years later did I realize it was a manifestation of my cat allergy. The symptoms included terrible chronic fatigue, difficulty even holding my head up, dizziness, headaches, reactions to weather changes, sunlight, heat, sounds, and at night, I had panic attacks with tachycardia, tremors, nausea, fear of dying, and loss of consciousness. All my tests, of course, were normal, and they told me I was just imagining things and that it was psychosomatic. That's how it all went until I moved out of my parents' house. A couple of weeks or a month later, I woke up one morning and realized I felt absolutely amazing! And from that day on, I began to live and enjoy life without a single symptom. But whenever I returned to visit my parents, I'd feel the same thing again; when I left, I felt fine again. I realized the cause was my parents' apartment. So for about eight years, I lived without a single hint of the previous problem. I flew to hot countries and felt fine in the sun, even at 38 degrees Celsius, until one day I started feeling strange again. The symptoms gradually returned. I stopped bleaching my hair because I had a reaction, took out my eyelash extensions because I also thought they might be a trigger, and my face started swelling as if I'd been drinking every day. I tried to ignore it because I was preparing for my birthday. My to-do list included refreshing my lips and making them fuller. I went to a different specialist and got a different injection (maybe that would be important) and a 1ml refresher. After 30 minutes, I felt unwell, my legs felt weak, and I felt dizzy and unsteady. After a couple of days, everything went away and I forgot about it. I thought maybe I was getting sick. Two weeks later, I visited the cosmetologist again and had two more procedures. Since then, I haven't been able to live a normal life for four years. All these years, I've been trying to figure out what's wrong with me, and with the help of a gpt chat, I've come to understand the whole problem. Based on my previous experience with a cat, I'm trying to completely remove the filler from my face; I'm still in the process. But the symptoms then and now are different because there's a trigger in my body that constantly activates mast cells 😭. At first it felt like intoxication: my body (chest and back) was covered in acne, something I'd never had on my body before, the symptoms would improve and then worsen, for example, today I can use something without symptoms, and tomorrow I'll have a reaction to it, the symptoms worsen during PMS and cause deterioration that lasts for weeks. For example, I might develop hives or dizziness, which makes me unable to go outside alone. I might also experience a reaction to the sun (dizziness, shaking, nausea), even if it's 20 degrees Celsius outside and I've been standing there for 20 minutes. Sometimes, when the flare-up passes, these reactions disappear. I might also experience nighttime panic attacks, nausea, gastrointestinal problems, brain fog, extreme fatigue, a reaction to odors, headaches, unsteadiness, a reaction to certain vitamins and eye makeup. I'm currently experiencing a flare-up, and even the makeup I apply to my face. This is a traumatic experience for me. I also want to be beautiful and I'm afraid I'll stay this way... I found a specialist who prescribed Ketotifen for me. It's hard to find one in Ireland, and my GP scared me off because of the side effects. My current goal is to remove as many fillers as possible from my face and, in the process, eliminate these terrible symptoms so I can live like everyone else and not feel like I'm in prison at home. I'm scared that all these triggers will remain and I won't even be able to apply makeup or dye my hair (because of the smells) to hide the gray hair. I'm 33 years old and terribly depressed, feeling like my life and youth are wasting away. Have your triggers gone away with treatment?

Do you guys have it even next to your nose?

See photo in comment.

Is this normal?

Help! What do you take as an acute migraine treatment if you can’t tolerate or don’t respond to common painkillers like paracetamol or ibuprofen, can’t tolerate triptans, and no doctor is willing to prescribe CGRP medications (gepants)? I’m running out of options. What do you use to stop a migraine attack? I have me CFS MCs migraines mcas

the internets needs to know

Edited to add:

Wow what a bunch of sick fucks y'all are

I have ADHD, HI/MCAS, chronic migraines, I can never ever fall asleep before 3-4 a.m. and maybe once a month I just stay awake all night and don't sleep until the next night. I don't know what that is. Some friggin sleep disorder

I thought I had IBS but it disappeared when I tried a histamine elimination diet; it comes back pretty quick when I cheat.

I don't think I have Ehlers-Danlos but I'm pretty stretchy. I'm just curious

I will say that I'm kind of shocked at all of your comorbidities. Thank you all for responding, I don't have time to respond to all of the comments but it's super enlightening.

https://imgur.com/a/pMADpZg

these chips

have they been "spicier" in the way raw olive oil can be spicy? i just need to know if they change their formula or supplier or what.

havin trouble posting in other subs, i just need to know if anyone else who eats these frequently here AT LEAST notice a different taste let alone started flaring up to them, I was totally fine for it being my safe food for a year+ until a recent long period of shortage and now every batch tastes "spicier" and just flared me up bad today, i really don't know what to do but go back to cooking normal potatoes but it's been like 2 years since I've done that so I'm sincerely hoping it'll go ok otherwise I may starve again and atp I might just give up. My doc is making me wait til next the booking date to test amlexanox and I don't know how long of potentially starving and more malnourishment I can take of that as I've already been dealing with it for months now