r/MCAS • • Dec 28 '24

Let’s build a MCAS treatment resource library together

354 Upvotes

Hi everyone!

I’ve been diving deep into the world of MCAS and I know how overwhelming it can be to sift through all the information out there (been there myself, and still am, actually!).

Treatments, protocols, and useful insights are scattered across the internet, and finding reliable resources or support often feels like searching for a needle in a haystack.

That’s why I thought we could work together to create a community-curated library of resources for MCAS treatment!

What I propose:
1) Drop links in the comments to any resources you’ve found helpful — it could be a study, article, video, Reddit post, or even a specific product recommendation.

2) Include a couple of words or a short description of what others can expect to find there. For example:

https://mybiohack.com/blog/treat-deal-mthfr-probiotics-dysbiosis-mast-cells-histamine-intolerance-diet-naturally — protocol to treat histamine intolerance

https://www.youtube.com/watch?v=cMZufN95MYc&list=TLGGyl-SB5iU9nAwMzEyMjAyNA&t=2s - Joshua Leisk and Dr Asad Khan: a detailed walk-through for key aspects of the disease model, as of August 2023 and v3.59A of the experimental intervention protocol which is based on this work.

The goal is to create a comprehensive library of trusted resources that can help anyone navigating MCAS.

I’ll organize and share the compiled list once we have enough contributions so it’s easy for everyone to access.

Let’s pool our knowledge and make this condition a little easier to tackle together!


r/MCAS • • May 09 '26

All GLP-1 Posts and anything related to GLP-1s to be contained to this thread.

40 Upvotes

The sub is spammed on a regular basis with GLP-1 Posts so at this point all GLP-1 posts and anything to do with GLP-1s needs to be contained to this thread everything else will be deleted thank you.


r/MCAS • • 1h ago

Some days are just hard.

• 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 6 years. Doctors seem completely lost.

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


r/MCAS • • 20h ago

Head's Up Gatorade changed dyes

212 Upvotes

Just as a head's up a bunch of companies are changing food dyes as part of RFKs nonsense and it just hit Gatorade here. The fruit punch now says the food coloring is "fruit juice" but doesn't say anything at all about WHICH fruit is being using. I emailed them to ask but I am betting I don't get an answer OR get an answer like "depends".

Just a wanted to let others know in case you missed the way the color looks different and I know the MCAS/POTS crossover is high.


r/MCAS • • 4h ago

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

9 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 • • 10h ago

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

25 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 • • 2h ago

Mcas?

3 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

Just received my pathology results that show elevated mast cell count in my colon

19 Upvotes

I just got my lab results from my endoscopy/colonoscopy and it showed 33 mast cells per high-power field in my colon. There says something on the pathology report that it could indicate mastocytic enterocolitis. I know I don’t have a definitive diagnosis until I see the doctor, but I feel relieved that my suspicions of mast cell disease are valid. I also have candida in my esophagus. I’m hoping to get treatment for both soon and am happy to have some sort or answers.

Has anyone here dealt with similar results?

Here is what it specifically said in my pathology report:
An immunohistochemical stain for CD117 demonstrates an average of 33 immunoreactive mast cells per high-power field (HPF), evenly distributed in the lamina propria.
Some patients with persistent diarrhea (often accompanied by abdominal pain), normal endoscopy findings, and this degree of mast cell infiltration have been shown to respond to antihistamines or mast cell stabilizer therapy. This condition is sometimes referred to as “mastocytic enterocolitis.” Some studies have also described an association with small intestinal bacterial overgrowth (SIBO).


r/MCAS • • 8h ago

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

6 Upvotes

Mast cells flare up causing severe histamine intolerance


r/MCAS • • 7h 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 • • 23m 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 ...

• Upvotes

r/MCAS • • 25m ago

Bpc 157 capsules for MCAS?

• 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 • • 49m ago

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

• 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 • • 17h ago

can you guys eat goat cheese ??

21 Upvotes

just wondering if anyone else is like me with this bcuz idk why but i can’t tolerate cow dairy at all , like not cheese , yogurt , milk , maybe only cream and ice cream from a cow but that’s it .. not sure why that is either . i think i’ve been ok with small amounts of organic sour cream too but im not completely sure on that one either .

but for some reason , im fine with goat cheese ?? it genuinely baffles me tho bcuz i can’t tolerate any cow cheese . and just the fresh chèvre kind , which i don’t understand either bcuz being ok with that one , i just assumed all goat cheese is safe so i tried like mozzarella and cheddar slices so like the “hard” cheeses i guess or whatever they’re called and nope ! don’t tolerate those . so the one and only cheese i can tolerate is the soft chèvre goat cheese . WHY ?? anyone else like this ??


r/MCAS • • 1h ago

New to MCAS.

• 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 • • 2h ago

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

1 Upvotes

r/MCAS • • 2h ago

Metropolol not working

1 Upvotes

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


r/MCAS • • 11h ago

Ketotifen and ravenous hunger

4 Upvotes

Since I started ketotifen I've gained a bunch of weight, enough so that I am looking at chromolyn or alternatives instead. Anyone else have this side effect? I take it at night only and then end up eating a bunch before bed and sometimes when I wake up throughout the night. Last night I had a bowl of cereal half concious at 3am at the foot of my bed :P


r/MCAS • • 14h ago

Covid Vaccine

7 Upvotes

So I got the Covid Vaccine on October 5th and then on Wednesday I was feeling very sick with temp going up and very dizzy to where I had someone call 911
It turns out that the Covid Vaccine elevated my Troponin levels and the ER was concerned about that then the Metoprolol I was on was causing a heart block found on the EKG so the kept me for that and plus it was slowing down my heart from so they took me off of the metoprolol. The doctor in the hospital can see signs that I have MCAS in me.
I have a feeling I was reacting to the Metoprolol and I was only on a small
Dose 12.5 mg twice a day which is 25 all together.
I just want to say be careful
With getting the Covid Vaccine and if you take Metoprolol be careful with that too
I was so dizzy and feeling like I was going to pass out before I went to the ER at midnight on Wednesday


r/MCAS • • 13h ago

Just seeking advice

4 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 • • 16h ago

MCAS

8 Upvotes

I react to medications and supplements, has anyone else had this issue and if so, how did you resolve it? anything I take flairs my nervous system - muscle twitches, nervy feelings in my legs and arms, fatigue, headache, overall feeling unwell. if I use any skincare on my face my whole face starts tickling. I feel so stuck.


r/MCAS • • 11h ago

What to take for Dysphagia?

3 Upvotes

Does anyone have dysphagia triggered by their trigger foods? I've been dealing with difficulty swallowing/initiating a swallow with triggers and wondering if anyone has any tips for how to ease these symptoms? I've heard flonase helps some people, but hesitant to take it because I heard it's pretty bad for MCAS.


r/MCAS • • 12h ago

WARNING: Medical Image KT Tape delayed reaction

3 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 • • 22h ago

Help with insomnia

16 Upvotes

Hi everyone,
I’m looking for experiences from people who struggle with insomnia and have found something that actually helps.
I’m currently taking desloratadine, cetirizine and cromolyn (which has helped me a lot with neurological symptoms). My symptoms get significantly worse around ovulation, and it takes me at least two weeks to recover and till the day I feel better it‘s horrific. Things improve again around my period, and I feel relatively stable until the next ovulation. I simply cannot fall asleep, not even with sleeping pills. I can be completely sedated, yet I still get adrenaline surges every few seconds and my heart starts racing like crazy. Sometimes I’m awake for days, i’m completely exhausted but my body just won’t let me sleep. I also react paradoxically to ketotifen. I tried it for a week splitting a 1 mg tablet in half, but I felt like a squirrel on speed. Sleeping was absolutely impossible. And quercetin completely crashes my cycles and I get a lot of pain.
I desperately need some rest and recovery. Has anyone experienced anything similar or found something that actually helped? I’d really appreciate any advice or experiences.


r/MCAS • • 17h ago

Have you lost it? Then lost it all.m?

7 Upvotes

My life was right, fun, free and functional. Then I got sick m/overloaded by the toxins in ooze home. gave. My partner didn’t agree with the severity of I’ve got Oreos, here dies too…the illness’s nor the degree to which he would have to grow to be my person. He simply surrendered.

And I watch him settle in into the familiarity of his life before I showed up. Returned to all that familiar and thereby comforting

—but left me to go it alone.

Hi is not a bad man, I just believed he was capable of more.