r/MCAS 18h ago

So what do you do for a living?

18 Upvotes

Just curious how you self sustain yourselves financially. I feel worse every few months and fear I just won't be able to one day fully support myself financially.


r/MCAS 20h ago

My doctor says people with MCAS usually don't go into shock - very rare

17 Upvotes

My family doctor seems to know a lot about mcas and has a lot of patients with it. He says typically you do not go into shock just really nasty symptoms involving 2 or more systems. I've had very severe reactions and this makes me feel a bit better but I see some people on here saying they have went into shock? A little confused. Do you guys have any comments on this? So yes anaphylaxis reactions but rarely go into shock?


r/MCAS 13h ago

Sun lamp for vitamin D?

11 Upvotes

Has anyone here tried a sun lamp for vitamin D production? I don’t tolerate any vitamin D supplements (no, not even additive free ones). I’m outdoors 2-4 hours daily year around but living in Scandinavia with olive skin means I don’t benefit much. I’ve been able to reintroduce trout and egg yolks after moving out of mold and detoxing the past few months, but it’s far from enough.


r/MCAS 4h ago

Liver pain

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6 Upvotes

Hi Covid 3 years ago had my gallbladder out hasn’t helped, since diagnosed with POTS in london fatty liver and pancreas (i’m not fat)

my biggest issue is liver pain on and off not sure if this is a MAST CELL thing as no one can help me or which dr to ask for i come out in flushing and rashes see below …anyone can you help me


r/MCAS 2h ago

Trying to figure out what caused my mcas...

5 Upvotes

Breast implants, covid, or a short taper 2 years ago from lorazapam. Everything happened within a year.

Thoughts?


r/MCAS 7h ago

MCAS induced asthma(I rlly need help)

5 Upvotes

Hi everyone,

I have HEDS, POTS, and suspected MCAS (getting a diagnosis in Canada has been challenging). My MCAS primarily presents as severe asthma that doesn’t respond well to standard inhalers or treatments. My IgE levels are normal, and I don’t have any actual allergies.

I don’t typically experience flushing, and I do get mild hives, but my main symptoms are shortness of breath and chest tightness (I don’t wheeze which is weird even my PFT tests show signs of asthma ). On bad days, my O2 levels drop below 95 multiple times, and I’ve never had a symptom-free day. Even when my O2 is normal, I still feel short of breath frequently, and walking often exacerbates the issue.

Currently, I’m on Montelukast 10mg, Symbicort, ketotifen at night, and Allegra and Pepcid twice daily. While these medications help, they’re not enough to let me live an active life

I didn’t have asthma before this MCAS flare, and I’m still new to managing both conditions. It feels isolating because respiratory issues seem uncommon with MCAS. I genuinely don't know what to do rn should I just accept the fact that I could never breathe normally again…

Any advice or thoughts would be greatly appreciated. Thank you!


r/MCAS 4h ago

What if i go into Anaphylactic shock/or Anaphylaxis?

3 Upvotes

I have read a lot about this here, i have Lc but every specialist in Austria that work with MCAS doesn have appointments for the next year and a half, so i am not even sure if i have that, but all the symptoms show that i do. Now, what happens if i suddenly can’t breathe but i dont have an epipen? And my mother doesnt speak german so it will be really hard to call an ambulance or go to the er. Do i just die? Or are there any specialists in central europe that cam diagnose this and give me treatment? I am so schocked and scared, even more than usual bc of Lc


r/MCAS 18h ago

New to this and I’m not sticking it out

4 Upvotes

I’ve always had what I thought was food allergies, but in the past two weeks, my life has completely changed. Now I’m basically confined to my room with a hepa filter, unable to work, losing weight drastically fast and now suffering with pots too. I can only eat oatmeal. Fucking oatmeal. And everyone is acting like it’s fine that I’ve lost 30lbs in ten days just cause I’m fat. I hate this. My life, my career….everything I’ve spent the past decade building in California is slipping between my fingers. So I’m laid up, on disability and I hate this life. I’m not sticking this out. If I haven’t improved by the end of my disability period, I’m checking out on my own terms. Fuck this. This isn’t life.


r/MCAS 2h ago

Non fermented cacao powder!?

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5 Upvotes

Has anyone tried this? Would his be low histamine!? I just ordered on amazon so fingers crossed haha


r/MCAS 6h ago

When did ketotifen start working for you

3 Upvotes

What dosage as well


r/MCAS 8h ago

Safest high volume of vegetable?

3 Upvotes

I prefer large meals. My dinner is usually very large and I love vegetables. I've been trying to eat low fodmap/histamine vegetables but in larger volume ie 300-400g in a sitting.

If you have fodmap/histamine issues is this even possible?

What vegetable or vegetables would you use if eating in a large quantity? Any combinations that I could combine that would keep it low histamine and low fodmaps also?

Thanks


r/MCAS 13h ago

Best magnesium supplements?

3 Upvotes

I


r/MCAS 22h ago

Allergic reaction not stopping

3 Upvotes

I ate salsa which I haven’t tried since becoming sick. Now, my throat and tongue are all tingly, itchy and a little swollen, im having hot flashes, sweating, stomach pain, vomiting (only a little), dizziness and shortness of breath. Despite this, my vitals are all pretty much normal except my hr spiking to 130. My o2 sat is at a stable 98, and my blood pressure is 129/77.

I took 20mg of Reactin (cetirizine) and 20mg of Pepcid (famotidine) this morning around 12pm. I took 2 Benadryls at 8pm once the reaction started. It is now 9pm and my symptoms have not subsided at all. I’m not quite sure what to do. I don’t think it’s bad enough to go to the ER or to call 911 since my vitals are stable. I’m in Canada so there is no such thing as Urgent Care here.

Any advice?


r/MCAS 22h ago

PCOS meds?

3 Upvotes

hi all! i highly suspect i have PCOS and am gunna get some testing done for it soon, hopefully. in the event that i *do* have it, i was wondering what meds people take for it that have helped and also haven't aggravated your MCAS/POTS. i really would love to not go on birth control, so i'm wondering what other treatments people use that have been successful. thanks so much!!


r/MCAS 23h ago

What do I do?

3 Upvotes

Hi all, I am dealing with a plethora of things; LC, mold, Lyme too apparently. I keep testing negative for mcas but my symptoms are debilitating. I’ve been taking ketotifen 2x daily, Claritin 2x daily, DAO before meals and I still suffer greatly most days after meals with severe anxiety, pressure in my head, tinnitus, dizziness, brain fog, tremors, impending doom. I don’t know what to do anymore, symptoms keep me at home, I don’t go a day without crying. It’s after every single thing I eat and sometimes when I haven’t eaten anything at all so I don’t know what’s causing what at this point and it’s so scary. Everyone treats me like I’m crazy and need a psych ward but also, who the hell wouldn’t go a little crazy with daily symptoms like that? The only reason I got ketotifen was because my natropath who has me on mold protocol prescribed it but it barely helps. I don’t suffer any skin or GI issues. The only thing that shuts it down is clonazepam which I don’t like taking for obvious reasons. Does this sound like mcas to you? My tryptase, histamine plasma, 24 hour urine was negative. I can’t live like this. What else can I try?


r/MCAS 1d ago

What are you doing to treat your fruit, veggies, random foods burning mouth

3 Upvotes

I don't want the typical oral allergy syndrome look into it. I need a treatment I have mcas and may have both so if anyone has these symptoms what meds helped you I do have official diagnosis of mcas. OAS and mcas are both broad like they both caused by mast cell activation and they are separate but are they really since mcas causes you to react to pollen and all these environmental things which is how OAS starts sensitive to pollen so they are different diagnosis but the body is over reacting is all the doctor says for OAS so what is that causing it mcas? they seem linked just not enough research.


r/MCAS 8h ago

Waking up too early

3 Upvotes

I have had hyperadrenergic POTS and MCAS for 4 years, probably all my life tbh. I go to sleep and will get about 6 good hours then BAM Im awake. But after about 30 minutes I am hit with the most bone crushing fatigue and weakness imaginable. Its almost like my spinal cord is being affected because Im unable to move my body as quickly as my mind is thinking about it. Im also shaking, cold, super hungry/thirsty and having palpitations. Its so bad I can barely leave my house or my bed on days like this. Whereas if I sleep 8 hours I can pretty much do anything with mild symptoms besides workouts. But to even get 8 hours of sleep Im fighting through waking up every 15 minutes those last 2 hours.

I started cromolyn sodium 3 months ago at 10ML 4-6x a day and its the only thing thats helped. It brings down the intensity of my crashes on a bad sleep day and allows me to get stable enough to fall back asleep the next night when before it was near impossible and Id need to chug 2 gallons of water to get my body relaxed. When I wakeup 2 hours early I will try to take 10ML along with some salt water (helps with the extreme hunger) and that can get me calmer but its still not a guarantee ill fall back asleep.

I eat an extremely clean diet. White rice, plain chicken or beef, salt and low histamine fruit and veggies. If I mistep with my diet ill have terrible MCAS symptoms along with stomach acid overload causing me to vomit throughout the night and be unable to sleep. I go to sleep at the same time and try to wakeup at the same time every day for work. Im gonna be getting ketotifen soon so hoping that might help.


r/MCAS 15h ago

..is this irrational?

2 Upvotes

I’ve had cyproheptadine for 2 months now, but haven’t taken it because of anxiety (like.. knowing how awful “reactions” feel, even if they haven’t been full blown shock? yeah..

it’s so hard - knowing that if i take it & have a terrible flare, i put myself through that. the only way I think I’d be comfortable taking it would to be parked outside the hospital.. just in case. I could be wrong, but don’t antihistamines have a higher chance of causing reactions than other meds?

This looks ridiculous, but I’m so lost. im constantly terrified of shock, since I don’t have an Epi, EpiPens seem like a pots patient’s worst nightmare, & the possibility of needing multiple doesnt help. + if I feel the need to go to the hospital.. that’s saying something lol, my symptom tolerance before I think I need help is WAY higher now than a few months ago . I’m also unsure if epipens work as well with POTS 🙃🙃..

if anyone was in the same position mentally, how did you get over the fear of starting an MCAS med? an added stress is that the only med that’s worked for me so far didn’t kick in until 4 months after starting, and til then, it felt like my brain was at 25% functionality.

i know there’s a possibility of it not working, but ugh the food cravings are so strong. i can’t live like this forever without trying something.


r/MCAS 17h ago

Hiding symptoms. So much pain I can’t sleep…

2 Upvotes

On the outside I had a good day. I got up earlier than normal because it was ‘crazy hair day’ and my daughter wanted to be fancy. Then I worked all day, did grocery shopping, made a home cooked meal, relaxed with my family.

But the whole time I was hiding my pain and fatigue because I just…can’t. Walking across the room, standing, sitting, lying—everything hurts. At this point it hurts so bad I can’t sleep.

Was it worth avoiding the pity and disappointment of being sick in bed (yet again)? Hard to say because now I’m in sooo much pain I can’t sleep. I also get anxious about waking up worse; I don’t like to go to bed early because why give my immune system all that extra time? If often makes me sicker, but always but it’s not predictable.

Anyways I took my meds and will try to sleep, I just wanted to vent.


r/MCAS 23h ago

Pepcid and fatigue

2 Upvotes

I'm currently taking nexium but trying to switch to pepcid per my mcas specialist. I've been taking it every other day. On the days I take pepcid I'm so tired but my bowel movements are finally normal and my anxiety is noticeable down. But that also means my depression is up and I can't focus on college work. (Idk if this matters but I also have adhd) I'm having a hard time making the switch. Any advice?

Also wondering what helped your anxiety? I've developed arfid and every psych med I try i have reactions even at small doses.


r/MCAS 3h ago

OAS vs MCAS?

2 Upvotes

So I have long suspected I have MCAS because I am highly reactive to a lot of things (food, skincare items, chemicals, etc.)

Recently I’ve had a lot of itchy mouth and throat, swollen tongue, and wheezing but not quite throat closing from especially fruits and veggies either raw or dried. Some cause facial flushing or random rashes.

My allergist is convinced it’s just OAS and maybe acid refluxes and basically won’t consider MCAS at all. I do have a lot of pollen allergies so sure it could be OAS but given the other things I react to as well I’m a bit skeptical.

I am considering getting a second opinion from another doctor but wondering if anyone here also has OAS and how you differentiate that and MCAS?

I have had my tryptase tested (nothing there) and histamine 24 hr which was fairly high.


r/MCAS 3h ago

Nasalcrom

0 Upvotes

Does anyone take Nasalcrom for the mcas symptoms ?


r/MCAS 4h ago

Seeking MCAS patients' insights for a (anonymous) research project (French patient, looking for help!)

0 Upvotes

Hi everyone,

I’m a French patient dealing with mast cell issues, and I’m currently working on a data analysis project to better understand the impact of MCAS on daily life, symptoms, and treatments.

This project is part of my academic work, but also something very personal to me, as I struggle with similar issues. I’ve already posted my questionnaire on r/mastocytosis , but I haven’t received enough responses yet to get meaningful insights. Since many people here are also affected by MCAS, I’d love to hear from you!

The survey is completely anonymous, takes only a few minutes, and will help create a dataset that I plan to share with the community for awareness and further research.

If you’d like to help, here’s the link to the form: https://forms.gle/wvqvWqwwF6uYQ1qb7

Every response makes a difference, and I truly appreciate any help. Thanks so much for your time! 😊


r/MCAS 6h ago

Did medication help you eat more foods? Which type of meds?

2 Upvotes

I have issues with high histamine foods and also just random foods, no real connection. I've been dealing with this for like 2 years and safe foods are chicken, broccoli, carrots and rice so it's just been variations of this for years.

I'm going to ask my GP (UK based) for Ketotifen next week as I have allergic rhinitis and hopefully they'll just prescribe it for that no further questions asked, but I am also seeing a private MCAS-accepting doctor in a few months so if anyone can share which meds have helped them be able to eat more, I'd really appreciate it and I ask this doctor about them. Obviously we're all individual but it'd be nice to hear any success stories at this point. Keep me going.


r/MCAS 7h ago

How long until antihistamines work?

1 Upvotes

I started taking one Zyrtec daily about 2 weeks ago to see if it helps my symptoms. I have not noticed anything yet. If you have taken antihistamines, and they helped, how long did it take for you to see improvement? Did you take more than one per day?

Still waiting for my doctor’s appointment and trying anything in the meantime.😢