i’m pretty sure that my five-year-old is suffering from MCAS. He’s reacting to almost every food that he eats. He starts having breathing problems. His throat has red spots and he’ll get congested. His appointment is not for a whole year still and I need help and guidance right now I have him taking Childrens Allegra twice daily and giving him asthma treatment as needed. Any other pointers you guys could give me or anything else I could do for him to help him I would gladly appreciate it. We did live in a moldy apartment for about seven years. I found the mold in the HVAC system.

About 5 hours ago I walked across a room that had been just wiped with a swiffer wet jet. My feet were already sweating at that time.

About 20 minutes later I was driving home and noticed how badly my soles were burning.

I came home and ran my feet under cold water for about 15 minutes and washed with a mild soap.

I often have allergic reactions when I come in contact with cleaning agents. I get very sick just smelling them even.

So despite the foot rinsing a full on reaction has started.

My mouth, lips and tongue are all numb, I’m having a tight chest, my feet of course are itching and stinging as well as my hands itching, my face is swollen, I’m nauseous, having bad diarrhea and just feel overall bad.

I took a double dose of Benadryl when I got home and just took another double dose.

What else could I do? It’s not bad enough to need an EpiPen for, but man am I miserable

I get really anxious after volatile organic compound MCAS trigger especially scent related things that make me faint or nauseous. I'll notice my nervous system feeling unsettled and on high alert for hours afterwards.

The nervous system calming techniques that work for trauma triggers and emotional activation don't work as well for MCAS events.

I think I'm only tolerating ghee. It's very sad because I live in Spain and they cook everything with olive oil, which I used to love but now I react pretty badly to it.

Has anyone experienced severe adverse reactions to receiving the flu vaccine (cell-based)? I am require me to get it again for my educational program with no exemptions allowed. Any advice, suggestions, methods of not (almost) dying?

So to preface: I am diagnosed with POTs, + am suspecting MCAS. Not looking for a diagnosis I am going to talk to my doctor soon but I wanted more of a yeah that sounds like it could be or nah thats not what that is.

Symptoms: I've always had GI issues but I have had three huge flares this year where I woke up in the middle of the night with nasal congestion, severe nausea, diarrhoea, burning feeling like my head is full and hot even if I'm not physically hot, shaking, tachycardia, dizziness. Then in the morning this often causes severe cramping. This lasts a day but for a week+ I couldn't eat properly with severe nausea and discomfort.

I also get reccurrent episodes of eating something and an hour later having a single episode of diarrhoea and urgency, just general discomfort and such. That being said I am also very constipated most of the time going only 3-4 days except for when I have an episode. I also get acidy stomach and bubbling feelings sometimes for eating things and mild bloating. My GI system never feels perfect, a good day is just not a bad day.

I was given domperidone after going to the ER one time (originally metoclopramide but gastroenterologist gave domperidone to reduce risks) for nausea and possibly emptying problems because ondansetron was not working. I only take it occasionally at night time now.

Gastroenterologist did an endoscopy and found nothing except for Hill Grade 3 loose lower oesophageal sphincter. BUT later found Chronic Gastritis (mild) from the biopsies. To me thats just evidence of some sort of immune response going on. Done all the tests to exclude infection or IBD.

I also have "eczema" on my lips, nipples, undereyes, and labia. Very atypical even dermatologist couldn't confirm eczema but thats what we called it since I had eczema as a child. Lips have been >5 years of swelling, reddness, and pain, the rest have been within the last 3 years. This is worse when I don't take an antihistamine (I take one everyday otherwise feel shittier and I am allergic to dustmites). I also occasionally have throat swelling (minor). I have recently been taking half of an over the counter H2 blocker too which maybe is helping for GI symptoms but hard to be certain.

I get itchy skin especially legs but no hives or anything like that other than the weird eczema and swelling of lips etc. I put tacrolimus ointment on my lips occasionally but it can sometimes make it worse but sometimes helps too. I use hydrocortisone for my nipples and labia which helps but doesn't go away. These symptoms can coincide with other symptom flares but can be by themselves or just with nasal congestion.

I know MCAS can often coexist with POTS hence why I'm more inclined now to consider it. I do NOT have EDS I am incredibly inflexible and do not have stretchy skin.

Does this sound in the realm of possibility? I am definitely going to talk to my GP and maybe see an allergist soon but wanted to see if this is similar to anybody elses experiences.

Hey all,

Posting on behalf of my girlfriend who has suspected MCAS with classic symptoms. She's been trying to work out more lately but will flare afterwards, for instance was flared for two days-ish after going to a spin class with flushing, anxiety, feeling ill etc. She does not have similar issues with walking.

Has anyone found a way to work out or do cardio without getting such a severe flare? I asked my own chronic illness support group for tips, but we all have ME/CFS so none of us can exercise at all, lol.

For management she currently takes H1/H2 blockers (Zyrtec/Pepcid) and avoids high-histamine foods. No current access to ketotifen, cromolyn, or other stabilizers due to bad insurance.

Thanks!

My MCAS physician is concerned that Zyrtec could be contributing to my chronic fatigue so wanted me to titrate off it and try Claritin or Allegra instead. Claritin has caused me fatigue in the past and did this time too. It’s clear that Zyrtec has also been causing fatigue now that I’m largely off of it.

I was hopeful that Allegra was the solution. Last night I took a 12h dose of Allegra and I’ve been in a drugged stupor all day, barely functioning, and needed a long nap. I thought the fatigue from Claritin was bad but this is worse. Debating whether I should give it some time, though I won’t be able to function in the meantime, or try another formulation like Kirkland’s generic. If you’ve experienced fatigue from Allegra did it get better with time, did other formulations help, or what medication(s) ultimately worked for you? Welcome experiences and suggestions. Thanks!

As title says i saw an allergist today. Ive never been tested for any allergies but have been sick my whole life and the only thing that makes me feel better is antihistamines but they dont work all the way. Ive had 3 days without having a reaction to anything after weeks of daily reactions. so the events of today are really sticking out to me.

Also i dont know if i should go too into what all the symptoms im experiencing are, specifically because i dont want to skew my perceptions of things too much (in regards to theorizing on why im so sick all the time) and im not asking for medical advice. But if people are curious i can share. Its all very frustrating.

I did not take my morning zytec or the other two allergy meds i am on this morning because i didnt want them to affect the results. I did tell the doctors this.

I explained all my symptoms and he was similarly confused to how random they are. Especially because a lot of the things ive been reacting to have been fine for years. And also do not always make me sick.

They tested me for 50 foods, and 8 molds. And my skin did not react significantly to anything they poked me with except the control, which honestly didnt itch at all just swelled a bit, and none of the spots are bothering me now (an hour later) either.

However, during the test i began feeling nauseous and lightheaded, my nose started running and my throat got itchy.

Shortly after my face, scalp, ears, and throat are itchy, my stomach hurt, i had an upset stomach, my chest felt weird, my joints felt stiff, my jaw started aching, and my muscles felt sore. I felt dizzy, and weak, and like the ground was moving. My ear canals hurt and itched And my heart was beating fast.

They gave me a liquid form of my antihistamine and now an hour later i feel okay but very fatigued.

He put in an order for MCAS testing but i have to come in during a bad symptom flareup for a clear answer. Shouldnt be too hard it happens all the time.

I asked him if he knows what else it could be and he said with how ive been experiencing symptoms he has no clue besides MCAS

So yeah thats where im at. I feel kinda lost. I only know about MCAS's existence because two weeks ago i had a huge allergic reaction while at work and i was still dealing with it when i went to pick up my cat's meds. Explained to the front desk girl at the vet what was going on and why i was having a hard time processing stuff and she said she really related to what i was dealing with. And had recently been diagnosed with MCAS. I didnt look into it but now im wondering if i should read about it.

Im a bit scared. If the tests come back negative i might freak out because i am sick of feeling awful every day. Its ruining my life and relationships.

2 Allegra, 1 Zyrtec, 2mg ketotifen 2x/day, 2 pepcid 2x/day, I think that’s it for the MCAS.

Ears are so itchy and I’m getting ear infections which I do have drops for, my husband and I took a shower together and he used a body wash on me that my elbows are still broken out from like 4 days later, and my PMDD is nearing pretty extreme mood wise.

I just needed to vent. The 4mg ketotifen per day isn’t helping at all.

Singulair made me crazy.

Doctor doesn’t seem to know what else to try since some antihistamine got shot down by insurance. So I don’t know how to advocate for myself.

Like genuinely do not know how to advocate for this.

I’m sorry, I just needed to vent as I cry.

I’ve noticed my triggers around eating out have been getting worse over the past year. About six months ago I had a trigger that was bad enough that it stopped me from being able to eat at all and caused a flare. I haven’t eaten out since.

My main concern is airborne triggers: scented candles/diffusers, heavy cleaning product smell, perfume in a crowded room, kitchen smoke, poor ventilation in general. Once something like that hits, it spikes my dysautonomia and can kill my appetite and ability to eat entirely (ruins the vibe fr).

What I’m trying to figure out: has anyone else had this progression, where it got worse over time until eating out stopped being an option? Do you still eat out at all, or have you basically stopped? If you’ve stopped, what do you and your partner and/or friends do instead? My boyfriend and I used to go out together and I’m trying to find something we can do together that doesn’t risk a flare and lifts some of the grief that comes with chronic illness.

I often see people describing their throat pain as closing up, throat tightness, itchiness, soreness, aching, etc .. but what I experience is sharp stabbing throat pain, like a raw nagging consistent sharp stabbing pain that lasts for 5 or 6 hours after eating high histamine foods.

My symptom timeline generally goes as follows...

5 to 30 minutes after eating offending item... Hives, swollen lips, throat partially closes and feels tight, itchiness, dull pain..., hoarseness of breath, eyes swollen and blurred unfocused vision.

30 minutes to 2 hours after eating offending item... Joint pain, extreme tiredness, excessive hunger, keep getting blood sugar drops and dizziness, urinary symptoms (bladder urgency, bladder swelling and stabbing pain, and whenever I try to go, inability to urinate).

2 hours after eating offending item...after other symptoms have worn off, I'm left with sharp stabbing pains in throat (alongside bloating, gas, GI symptoms).

I guess what I'm wondering is... is the sharp stabbing pain in throat common? Are the urinary issues common also? Does anyone else experience this?

I’ve been dealing with SEVERE reactions to any supplement or medication I tak. Foods give me bad reactions too but nothing like supplements. It’s been 4 months of this and it is scary. I tried KPV which I was sooo excited about bc I heard wonderful things with helping MCAS and it appears even with the most microdose of 5 units, it caused my throat to close and my chest to hurt and many other symptoms. How can this be :( I’m so sad. Has this happened to anyone else? Does anything else work? Ugh

Started off with a POTS diagnosis and now years later after a terrible experience with post op sinus surgery I believe I am in a ful blown MCAS flare. My pcp is fantastic at advocating for me and helping but my immunologist is very heavy on the allergy and athsma side and focuses too much on my athsma.

Any decent MCAS dr who will diagnose and actually listen here in MD?

I feel so lost navigating this!

Here I am shivering, covered in two blankets and have the heater on (very unlike me, I prefer the cold). My sister checks my temperature and it was only 38.5. I took paracetamol an hour ago and now it's 38.9. I'm cold but my cheeks are so flushed.

I am having quite possibly the worst flare up I’ve ever experienced. It’s been two years of progressively declining health for me. It started my freshman year of college in 2024 with just presyncope episodes and some heat intolerance. I just found out I’m allergic to mold, and my freshman dorm was really badly kept up so I think the mold may have triggered many of the issues I have now. As the year progressed I got more and more anxious and depressed, I even started to restrict my eating a bit. In January of 2025 I got the norovirus and shot out of bed to the bathroom in the middle of the night, unfortunately I passed out in my bathroom, badly hitting the back of my head on my toilet and shower step, right where the back of your skull meets your neck. It was after that I started to have bad “panic attacks” like never before, coming out of nowhere and so severe my whole body would sometimes lock up. I was diagnosed with anxiety and put in therapy, which really didn’t help. I was put on Zoloft and took that for about a month semi-inconsistently before getting off it, later I was put on lexapro but that really didn’t help either, again, taking it semi-inconsistently. By this time, it’s summer and I’m down about 50 lbs, going from 189-145 lbs (I’m a 5’10 woman for reference). In August, after little improvement of symptoms, I finally had a thyroid scan. My results came back heterogeneous no nodules. My sophomore year of college was not much better. While able to maintain my weight mostly, I had several flare ups during this time. Heat intolerance, hunger, nausea, fatigue, achy joints and limbs, just felt like I had the flu most of the time. I would even get fevers out of nowhere. I was still being exposed to mold at the time. After showering I started breaking out in hives. My stress continued to grow over the course of the year, had multiple trips to the er, everything was normal. My tsh has been normal this whole time. Finally got referred to rheumatologist in March. My tpo and thyroglobulin antibodies were high, tpo at 70, thyroglobulin at 265. Very high ANA. Rheumatologist diagnosed me with dysautonomia and hypermobility after I scored an 8/9 on the Beighton Test and prescribed me compression socks and more sodium. She said we’d “monitor” my antibodies and said that it was probably temporary thyroiditis triggered by a virus or something. She never followed up, never tested me again. My t3 was slightly low at 2.5, but because my tsh was normal she wasn’t comfortable treating me for thyroid stuff. I went on vacation to California about a month ago to visit family, and the whole time I was ungodly stressed. I kept having multiple adrenaline dumps, and I also began losing my appetite very quickly after little bits of food. I would get bloated and uncomfortable very quickly. I also started eating gluten, dairy, and processed meats again after not having really eaten any of that stuff in almost a year. I was also consistently exposed to heat and was getting exhausted from that. The day after I got back from my week out there, I had to move into my new apartment. I had to carry heavy furniture up three flights of stairs again and again in the humid midwestern heat in the moldy building. I was alright the next few days, still feeling anxious and off, and having a few more bad adrenaline dumps. Finally, it got to the point where I was barely able to eat anything. I was in-and-out of the er for days straight, everything looked fine on my ct scans, bloodwork, urinalysis, ekg , etc. They gavw me just a bunch of random medicine and iv fluids. My potassium was a bit low at 3.4 but was raised to 3.7, and later 4.2 after I was admitted to a hospital in my hometown. I was in there for two days from the 26th to the 28th. Theh scanned my thyroid and it came back as hyper vascular and heterogeneous. They gave me prescribed reglan for stomach motility that I stopped taking due to minor twitching it caused. I am also taking doxycycline mono, Pepcid, and protonix, and they gave me an updated .25 alprazolam prescription. I lost around 10 lbs in this week, about 139 this morning. I have been able to eat some nutritious foods, but not nearly enough calories. My mouth itches and my head itches when I eat certain foods, pretty much most foods atp. My heart is pounding, my bp has been low. I’m so tired, I’ve been crying everyday multiple times a day for over a week. My body aches, my ribs, back, neck muscles and under my arms are so sore. My arms are weak from being poked with so many ivs. I’m still urinating and it’s pale, I’m still having solid daily bowel movements and gas, so I’m hoping that means my stomach is still moving… idk. I’m mostly nervous about the allergic-type reaction to eating foods I’m NOT allergic too. My IgE came back at 100, idk. I’m just tired, I want to eat, I have an appetite I just get bloated and full quickly. Why is this happening… when will this end? Will I go into anaphylaxis or something? Am I gonna be okay? I’ve never been this scared in my life.
Please, how long does this last and is there any way to get over this?

Primary question - do I need to be in a flare to test positive for MCAS?

Some background: In 2023 I became sick with SIBO. I went through a very traumatic 4 months where my body wasn't holding on to any food/nutrition, doctors did every test before they would even consider doing the SIBO test, and then finally got my diagnosis. I took 1 round of antibiotics and started to recover. My doctors never bothered searching for the root cause, which I suspect was low stomach acid, so within 6 months I had it again. It took 2 rounds of antibiotics to start recovering. Recovery wasn't going great and my GI didn't want to search for anything else, so I left them to see an FMD. They did a gamut of testing and found that I had a GI Candida overgrowth, likely a result of the imbalance antibiotics caused in my system. Treated that, started getting better, a year later the Candida came back, treated it again and now here I am.

I've had years of severe GI issues that have dramatically impacted my life. I've been underweight, unable to eat outside of a very restricted diet, panic attacks that come on when I'm physically feeling at my worst, had heartburn, bloating, dizziness, occasional nausea, etc. However I've never had certain histamine symptoms like widespread itching, stuffy/runny nose, or anaphylaxis. I sometimes get itching around my nose and mouth but I have no idea if that's related.

My Dr suspected MCAS and told me to start taking famotidine and digestive enzymes so I still digest well. I took it for about 3 weeks and my heartburn, one of the symptoms that was causing me the most discomfort and would cause a cascade of issues, got much better (checks out lol, famotidine helps with heartburn as well as being an H2 blocker). She then ordered an MCAS test for me and said I didn't have markers for MCAS so there was no way I have it. However, even after just taking famotidine consistently for about 2 months now I feel worlds better. It's not just a heartburn thing, it's a brain fog, and energy, and responding well to food again thing.

A friend of mine has a wife with MCAS and he told me that her specialist said she had to be in an active flare to test for MCAS. Does anyone else know more about this? I'm starting to think that my doctor doesn't know enough about MCAS and it's possible that I have it.

I have had a severe Vitamin D deficiency my whole life (my levels ranged from a minimum of 3 to a maximum of 23).

Whether I get Vitamin D from the sun or other sources, the result is always the same: agonizing, wrenching pain in my arms and legs; dangerous arrhythmia; a total loss of appetite; and insomnia caused by the pain.

Even micro-doses, like 250 IU every other day, trigger this. Yet without Vitamin D, my mitochondria almost completely stop functioning, leaving me unable to do anything but sleep.

If anyone else experiences something similar, what have you found out about it?

Nearly 8 years of trying to figure out what I've got going on within my body. A lifetime of anaphylaxis, asthma, food sensitivities, allergies to weird stuff, lichen planus in mild to severe forms, heart racing, unable to sleep, esophagitis, random hives from apparently nothing, the most intense itching I've ever had and nothing resolving with any form of regular treatment. 15 doctors in total, 10 of them shrugging saying "gosh, I just don't know".

Of the 10: 3 primary care, 1 dermatologist, 3 gynecologists, 1 quack naturopath, 1 dentist, 1 periodontist.

I finally found an amazing naturopathic doctor in May, who, within 15 min of conversation said they suspected MCAS. It was a fast track to see specialists who can help with my issues: 2 derms (one who specializes in mucosa inflammatory diseases), 1 gynecologist, and 1 allergist who all said the same thing...MCAS.

Today, I have a diagnosis of MCAS and am on the path to getting regular meds in my tool box to help with this miserable condition.

Finally!

Hi everyone! I have hyper pots. My doctor prescribed me Clonidine which made me break out in hives, then we tried Guancafine which caused even more hives. Should I discontinue these specific medications if I’m breaking out in hives? I don’t mind hives but I’m worried it could progress to something worse. What medication alternatives would be a better option for beta blocker or soemthing similar for hyper pots ? My doctor doesn’t seem to know

How long did it take for you to build up to your therapeutic dose - and what dose did that end up being for you? I am trying to manage my expectations. I just started it about 2.5 weeks ago, and I tried to start at 1/2 vial once a day, but cut it back to 1/4 vial due to headaches. Last night I tried to take a second dose of 1/4 right around bedtime, and I was awake and unable to fall asleep for HOURS. Definitely not going to be a nighttime thing for me, but I am already noticing some improvement with my GI issues. I am really interested to see if this med could have the potential to help with my skin flares that are caused by food...but I just wonder how long I'll have to wait to really tell. Any advice on how quickly to move up would be great as well. My prescription says to take one vial four times a day. I've also seen that some people take two vials four times a day.

Do you eat high histamine foods ? High salicylate foods ? High sulfur or oxalates foods ? What is the most efficient in triggering your tryptase ?

My allergist said that MCAS is EXCLUSIVELY diagnosed through tryptase test (or at least he implied it heavily, as he said there was official diagnostic criteria, one of which was tryptase levels). In other words, if tryptase comes back normal, all my complaints will be dismissed and i will be officially labelled as a 'psychotic patient'...

Last year my husband started getting random episodes of anaphylaxis. ER would treat with Epi and Benedryl and send him home. At the time he had a job but then lost it due to constant episodes. He had no insurance so we couldn't see an allergist. An ER doctor from a different hospital we ended up in admitted him to the hospital for observation after seeing his visits over the past year. He suggested HAE or MCAS. I have been reading all your posts and been doing research. Aug 1 he finally got health insurance. We immediately went to the allergist. Showed him all the visits and the doctor immediately prescribed cromolyn and singulair. He started the doses a couple days ago and he said the cromolyn seemed to make him very sleepy but otherwise all itching has stopped. He is no longer scared he is going to wake up choking for air. We go for a follow up in a couple weeks but so far great success. I am beyond happy he is feeling more like himself. He said for a year he dreaded every day that he would end up in the ER because of something mysterious. He had already been at deaths door 3 other times for different reasons and he didn't want it again.

Thank you all for sharing your stories and tips for getting a diagnosis and treatment. Preparing for a long life ahead and continuing treatment but he should be able to live a full life.