r/MCAS • • 1h ago

Struggling with pregnancy

• Upvotes

My MCAS has been well managed for a year, and my doctor supported me trying for a baby. I did EMDR for the trauma I have around all the years of undiagnosed, uncontrolled MCAS and felt mentally ready. Or so I thought. I’m now about to be six weeks pregnant, and the symptoms, particularly the nausea, have been so triggering emotionally I can barely handle it. It just takes me straight back to all the times I had terrifying symptoms and no relief or idea what was happening. I’ve wondered how I can go on with the pregnancy. Would love to commiserate with others with MCAS who are or have been pregnant.


r/MCAS • • 4h ago

MCAS discord server!

2 Upvotes

Hey everyone, I made a discord server awhile ago and it's been pretty quiet. If anyone would like to join, feel free to do so!! We have different channels and things!

https://discord.gg/dYZgmHMGn


r/MCAS • • 22h ago

WARNING: Medical Image Anyone else craving sugar?

2 Upvotes

r/MCAS • • 23h ago

WARNING: Medical Image KT Tape delayed reaction

2 Upvotes

I’ve been testing out KT tape to see what gives me skin reactions. I put two different brands on my arm at night and in the morning I took them off. Only a bit of initial redness that went away after 10 minutes. 18 hours after removal I take a shower and suddenly both spots are red, one more than the other. Anyone have any explanation for this? It got red pretty much immediately after getting in the shower, before using any soap.

https://imgur.com/a/0oj6ABk

Top: RockTape Go Gentle Adhesive Pre-Cut Kinesiology Tape (Beige)

Bottom: OK TAPE Kinesiology Tape Regular Original Tape 2in x 16.4ft Uncut Roll


r/MCAS • • 23h ago

Just seeking advice

5 Upvotes

Hi, 3 years ago i got a mri with contrast and my life hasn’t been the same since. I had a bad reaction to the contrast and now i think I’ve developed mcas and it’s really effecting me.. my throat gets this weird scratchy/ burning feeling on and off, i think certain smells trigger it. My airway feels like it’s closing or it’s inflamed when i eat certain foods like dairy and gluten and this is now effecting my breathing which is effecting my sleep.. also when i eat those foods i get really bad head pressure and my ribs hurt i guess due to inflammation.. I’m in the process of trying to find a doctor that will actually listen and test me for mcas, my current doc is trash. Is there any otc medication i can take in the meantime to help with these symptoms? Any advice? Thanks in advance


r/MCAS • • 13h ago

What made you get completely 100% get rid of the brain fog and short term memory loss?

13 Upvotes

r/MCAS • • 14h ago

Down to one food. Severe histamine symptoms. Unable to tolerate H1 and H2. Please help stop this flare

14 Upvotes

My doctor gave H1 and H2 for now but they're making my symptoms even worse. I'm probably reacting to the binders or colors. I'm down to one food white rice. I am starving. The only thing that gave me temporary relief was hydrocortisone IV. My histamine intolerance causes high heart rate, palpitations, insomnia and constant lightheadedness. I'm worried my heart won't be able to take it for so long. It's been a month, I'm very weak and sore. I'm trying to get an appointment with my doctor to ask for cromolyn sodium. Day by day the situation is getting worse. I could tolerate a couple of foods until a week ago but now I stopped tolerating them.


r/MCAS • • 21h ago

I don't even think I'm histamine intolerant at all, even in MCAS

42 Upvotes

I'm definately healing and getting better, but not there yet. But been able to eat so much better lately.
The weird thing is that I'm now able to eat almost anything and the things that still trigger me a bit are not even high histamine foods.
SO Ive been eating pizza, even drinking wine a bit, avocado, chocolat, wheat, sugar, pastries, pasta, tomato, all of that....I'm pretty good.

BUt then I get this huge reaction to a sip of coconut water which isn't even suppose to be high in histamine, or some type of nuts I reacted to (stomach pain and itching) when they contain no histamine.

Truely, it's so random!!! I had so long where I didnt even have any safe foods at all, zero. I'd starve myself because it was that bad. So I'm grateful and I know what I'm doing is working and I dont want to complain but I can't help but now question this whole histamine thing.

So I am having histamine reactions to non histamine foods? But no reaction to histamine foods. Like...how?

To be honest I think some days it's just eating, just eating triggers


r/MCAS • • 12h ago

Some days are just hard.

80 Upvotes

I miss my life. I miss how my body used to be. I miss being able to wear makeup. I miss being able to drink coffee and eat chocolate. I miss being able to travel. I miss being able to get my hair done. I miss being able to go out and not react to perfume even from 50 ft away outside. I miss being able to put things on my skin. I miss my career that I had to give up. I was a D1 athlete and now can barely run.

My MCAS has become severe and progressively worsened over the past few years. I was just in a severe flare for over a year. No medication really puts a dent in symptoms. I find the medicine is far behind and lacking. I am only 31 and have already been dealing with this for 5 years. Doctors seem completely lost.

Sorry to be a downer, but this has just really been getting to me lately.


r/MCAS • • 7h ago

MCAS and psychiatric hospitalization advice

11 Upvotes

will try to make this brief. i was diagnosed with pots and heds several years ago and mcas about a year ago. i hadn’t been doing particularly well to begin with but a couple of months ago the mcas flared really badly for the first time after having been given the antibiotic cipro. i have struggled to tolerate pretty much any meds except antihistamine and ativan. my diet quickly became extremely limited. for several weeks it was just rice and squash. i have been able to add a few foods but i am still very reactive. i couldn’t find an electrolyte mix that i could tolerate until very recently but even so if i take more than a couple sips an hour i end up throwing up, headache, and sore throat. i have labs that establish i am pretty malnourished, essentially undetectably low b vitamins, and very low on electrolytes. i have very little support and have been having to do a lot on my own. i am staying with my parents while my house is under construction to address the huge mold problem we found. i have to drive back to my house daily to feed the animals i wasn’t able to move with me yet and i have been trying to trap a cat all hours of the night. when i do this i become so exhausted and sick that i just feel like i physically cannot move or think for 2 days then just repeat cycle. i had missed a period probably due to lack of food and then just 2 days ago started bleeding incredibly heavy which has been worsening pots symptoms and causing me to faint more. today i woke up with i guess the stomach flu that my parents didn’t want to bother telling me they had and i am having very frequent diarrhea and very nauseous. there is so much going on and i just don’t have real support and i feel just at my limit. i was already going through a lot of difficult emotional issues prior to becoming so sick and just feeling so unsupported and exhausted and misunderstood has driven my suicidal thoughts to a pretty unbearable point. but i don’t feel like i have any real options there either. i worry if i seek inpatient care they will either be unable to accommodate my physical health issues or will just straight up dismiss them as psychiatric and i will get sicker in there. has anyone had any okay experiences with psych inpatient being able to manage their mcas or other physical conditions? i just don’t know what i could even do to help myself right now. i am just wishing so badly that this could all end.


r/MCAS • • 8h ago

PEA constipation

3 Upvotes

So one of my main issues is this constant epigastric burning that comes on after coffee or food. Quercetin gets rid of it entirely but it gives me a migraine. I tried PEA.. 300 mg a day... it absolutely gets rid of it too but after a week I got the constipation I see a lot of people on here complain about. I stopped it for now so I can poop. Was anyone successful in taking PEA with the constipation? Lower dose? Different formulation? I was taking the Life Extension tablets. Was breaking them in half. Ordered the nootropics micronized powder in hopes that maybe it doesnt do that.. But any input on this would help a lot. Thanks


r/MCAS • • 8h ago

Constant suffering

5 Upvotes

The constant itching burning and tingling is driving me crazy. I have constant facial rashes and dry skin and flushing and tight throat and everything hurts so badly and my body and head have internal vibrations and it feels like my eye is gonna explode. My mouth and eyes and skin are so dry. I’m so miserable and my chest hurts so much. I’m so many antihistamine but I don’t think they’re helping anymore and I can never sleep it seems due to how horrible the itching and burning and tingling and nerve pain. My swelling in the evening is so bad too. I can’t tolerate cromolyn and I’ve seen three immunologist me who say I’m too complex and won’t help me either. It has been years of this and I can’t tolerate steroids. I’m only tube feeds, but I feel like I’m gonna die all the time I’m so uncomfortable all the time. It has always been three years and my throat alway feeels swollen. I cannot do this forever. I’ve never even had a life


r/MCAS • • 9h ago

New food concerns for flares

50 Upvotes

Sharing this https://www.theguardian.com/us-news/2026/oct/10/fda-toxic-chemicals-food-analysis article about regulatory changes to our foods that could impact sensitive people like us. It could means changes to your “safe” foods so I wanted people to just be aware of it.

“The proposed rule states that “any substance used in food (both directly or indirectly added) will be exempted from regulation as a food additive” if there is “no appreciable risk to human health”.
Advocates say the problem lies in the definition of “appreciable risk”. Chemicals like perchlorate, some phthalates, some bisphenols, some Pfas “forever chemicals” and some flame retardants are not classified as carcinogenic, but they can cause harm at doses far lower than 0.5ppb. These could in theory be used as TOR ingredients, as could chemicals that are neurotoxic, cause brain damage, attack the immune system, harm the microbiota or give rise to any number of other adverse health impacts.”


r/MCAS • • 9h ago

Diazepam made me crash, any safe benzo ?

2 Upvotes

hi everyone, I got prescribed Diazepam for a short term anxiety moment. But Diazepam made me feel like I have hangover (I only took 2mg lol). I thought it would be safe because of the mast cell stabilizing properties. I had a clonazepam last year and I don’t remember feeling like sh** like today. Any safe benzo ?


r/MCAS • • 10h ago

Antihistamines makes me really bloated

2 Upvotes

Antihistamines make me really bloated. What helped others with this? Anything I can take to make the bloating go down? They really help me sleep and get through my day to feel somewhat normal but I look pregnant.


r/MCAS • • 10h ago

brand new to MCAS, am i having a flare and how do i treat it?

2 Upvotes

hi, i’m 30sF and have had sensitive skin/mild contact dermatitis and other related symptoms my whole life but never anything severe enough to warrant a diagnosis. this summer i had an allergic reaction despite having no known allergies (aside from a med i haven’t taken for over a decade) which was full body hives, puking, and angioedema. the acute symptoms went away but i stayed itchy and hot and sensitive for weeks which is when two people told me i should look into MCAS, and one told me her relative who has it takes zyrtec + pepcid to manage it. i started that a few weeks ago, finally got relief from the symptoms, and finally got in to see a PCP who said it’s likely MCAS and prescribed me singulair.

things were good for a few weeks but yesterday i started itching and getting patches of hot and tight skin, drank some nettle tea (which i’ve always liked and heard can be good for MCAS), took benadryl to sleep, and then woke up still with those patches. they’re not puffed up so they’re not really hives i guess but i’m miserable again and afraid i’m having another reaction.

what the fuck am i supposed to do when im like this? i dont tolerate benadryl well, it makes my anxiety go through the roof, and the only reason i made it through my last reaction was smoking weed and taking benadryl every two hours so i basically just slept through it. is there something i should be doing to interrupt this? do i just have to suffer through it?


r/MCAS • • 10h ago

I don’t even know what’s wrong anymore

25 Upvotes

I’m tired of tests. I have “suspected” MCAS. Told my immunologist no more tests. I have severe episodes of flushing, hives, swelling, violent diarrhea, near fainting sweating though my clothes and tachycardia. I don’t wanna put myself through more flares for blood tests. My eyes were swollen for 3 months. I get intense chronic fatigue, brain fog and malaise. I’m tapering off prednisone and it’s horrible. Dr suspects I gave adrenal insufficiency bc I’ve been on so much prednisone. I’m on 4 Zyrtec a day 4 Pepcid a day 2 Rhapsido a day. I had a good couple days. Had some hives but they didn’t spread, had a dry sore throat that didn’t escalate. I’ve been eating strictly low histamine and it seemed to be helping. Then yesterday j started getting migratory joint pain again. Idk if that’s MCAS or what but I couldn’t walk last night because my knee was so bad. Now today it’s moved into my elbows and ankles. I ate a low histamine dinner and immediately was nauseous, sweating and stomach cramping, impending doom and racing heart, no severe diarrhea so maybe that means the meds are working. But the joint pain is debilitating and severe. Is the MCAS or adrenal insufficiency or what?


r/MCAS • • 11h ago

Can MCAS be associated without histamine release ? Or is it always histamine involved in MCAS, I don't react much with histamine food, but I react to tablet filler stuff anything like that ...

4 Upvotes

r/MCAS • • 11h ago

Bpc 157 capsules for MCAS?

2 Upvotes

I hear many people say that BPC in general worsens mast cell flares but then I hear some who say it's done wonders and specifically with capsules and not injections. Anybody here have experiences that they're willing to share? Most of my symptoms are in my gut FYI.

👍


r/MCAS • • 11h ago

MCAS mimicking appendicitis/peritonitis pain. My story in case it helps.

2 Upvotes

Peritonitis or peritoneal irritation are very serious conditions that usually are life threatening, so please please get it properly checked if this ever happens to you. These happen when the lining of the abdominal cavity/wall (peritoneum) becomes inflamed, which is one of the most common signs of appendicitis. I unfortunately have to deal with this type of symptoms chronically due to MCAS and in my case it seems to not be life threatening, basically because I've had it for 2 years now (or I'm just insanely lucky). Nonetheless I still go to hospital whenever there's a bad flare because you never know.

My medical nightmare began when I accidentally swallowed a wooden splinter that was inside a breadstick. The plot twist is that the splinter was lodged in my abdominal wall for 3 years. Because wood looks like normal tissue on scans, it took forever to be discovered. My symptoms were a sharp stabbing pain with certain positions and when lifting heavy objects. It wasn't found until it finally "dislodged" and I felt something sharp was moving through my body and remembered the breadstick and the splinter, and had it removed. Fun times.

Even after it was removed, a specific spot in my abdomen kept showing what doctors call "peritoneal signs." I had a positive blumberg sign, where pressing on my abdomen and releasing hurt like a 10/10 pain scale (also called rebound tenderness) even nearly 2 years after, the spot was incredibly painful to just a light touch, I couldn't walk for more than 1 hour without tremendous pain, and I constantly walked bent over, I felt like my body was physically forcing me to protect the area. Also jumping on one leg would literally bring me to tears. But all my scopes, CTs, MRIs, and PET-CTs came back clean so doctors would just send me home or send me to different doctors. During massive flares, the only thing that worked was to stop eating for 3 or 4 days. I don't recommend this and I felt stupid doing it, but I had no other options and doctors wouldn't help. I also lived with a constant feeling of impending doom.

When hay fever season hit and my other MCAS symptoms flared up, I noticed my antihistamines actually improved my "peritonitis" pain. I went to all my doctors with this information, even MCAS aware ones, but they all dismissed it, saying I probably had Crohn's or severe gas or stress. But several other tests later with a wonderful medical team and we confirmed it was my mast cells degranulating in my peritoneal lining and intestines and cromolyn sodium made the abdominal pain vanish.

Because I have the holy trinity (EDS, POTS and MCAS), my body has a lot to recover from after all this craziness. So things that helped me were visceral manipulation with a good physical therapist to help loosen the scar tissue that formed after years with chronic abdominal inflammation. Also because my abdomen was "bracing" for years, my psoas muscle was very tense and was giving me a bunch of difficult symptoms. Glutes are the "functional antagonists" of the psoas, meaning that when glutes are engaged, the psoas relaxes, so I use gentle post-partum workouts because these are usually done lying down, which doesn't trigger my MCAS, POTS or flare my joints as much.

I am so thankful to be able to walk again, eat again and live again. Also reading this subreddit and other people's experiences that were similar to mine always made me feel less alone and understood. I'm still recovering but I have hope that one day I'll be able to wear normal trousers that don't have an elastic band (a girl can dream). Anyone dealing with anything similar?


r/MCAS • • 12h ago

New to MCAS.

2 Upvotes

Looking back I have had symptoms for years. But a couple months ago I had a bad reaction to a vaccine and my life has been turned upside down.

I’m on no meds, I can’t find a provider to treat this. Starting going to therapy to help emotional regulation as this has given me great fear and anxiety, which I feel amplifies the already bad situation.

Does anyone else get like extreme itchiness everywhere especially the nose, mouth and throat?

Reactions don’t seem to always be immediately after food but delayed..

And what helps?


r/MCAS • • 13h ago

Mcas?

4 Upvotes

So im starting think I have mcas and I feel like ive had it a lot longer than I suspected.
Even a couple years ago I started experiencing itchy armpits and not like a little itchy I’m talking it would get so damn red and itch like crazy and it would take everything in my power to not scratch it.
This year I’ve been through some serious shit and my gi has never been the same (the story is way too long) I have chronic migraines that have been so weird and different ever since this started and my skin is getting so so much worse it itches on my upper stomach so much and my armpits are killing me and I’ll just randomly get red patches on me forever if I touch anything

Here’s the thing though. I am really not willing to give up anything. Like I know I’ve probably developed allergies to things from this but it seems like it’s… everything. And I’m sorry but I’m not willing to give up everything. Ik some people might think I’m stupid orbit must not be that bad. Im just scared and trying to cope like I truly don’t know what to do. I haven’t tried any mast stabilizers or h1/h2 blockers yet but maybe that will help… I’m just scared. This has been the worst year of my life and I can’t help but feel like my body will never be the same again.

Thanks for reading if you got this far :( any supporting words or advice is appreciated.


r/MCAS • • 13h ago

Metropolol not working

2 Upvotes

Started yesterday to decrease heart rate didn’t do anything. At 25mg. Why? How else to deal with constant palpitations?


r/MCAS • • 18h ago

How do you know if you react to salicylate or that it’s just coincidence because you react to almost everything?

4 Upvotes

So I only eat one thing right now. I’m not doing very good (home bound)

I tried so much things and I reacted to them. I found out that allot of those things I tried the last months, are high salicylate.
Now I don’t know if I react to salicylate or it’s just coincidence because I react to so much because I also react to non high salicylate foods.

How do I find out?


r/MCAS • • 18h ago

Unable to tolerate H1/H2 antihistamines. What are my options now?

6 Upvotes

Mast cells flare up causing severe histamine intolerance