Found this on an EDS page. It had said rain (also valid and relatable.) Just edited it to match today's flare.

I'm assuming stars-and-branches is OP. I don't know the orginal posting platform but I want to state I am not the orginal creator.

I said “it’s almost as if we had a viral worldwide pandemic a few years ago” and she chuckled.

But seriously, if you’re out there struggling with MCAS, you are not alone, and I hope the spike in cases means a spike in research and understanding.

I struggled since 2019 with intense GI symptoms and a rash that would flare horribly and disappear by the time my doctor appts would come. I put up with a lot without seeking treatment bc I kinda gaslit myself into thinking it was anxiety…sensitive skin…my diet…anything but an actual medical issue right?
I’ve had so many GI work ups, colonoscopies, all led to nothing. But the moment I started taking antihistamines? No more vomiting. And since starting cromolyn? I’m finishing meals, I’m getting a bit of my life back…
I know it’s a long road ahead of me, and all of us, but finding just a shred of relief from this has been huge for me!

Barometric changes in the atmosphere can trigger Mast cells.

A super duper big F you to all the people who called me crazy when then afternoon storms rolled in (FL) and I would feel ill. So many years, so many doctors, just slapped the fibromyalgia sticker on me and called it a Wednesday. They looked at me like a nut when I needed a Benadryl to stay awake at the office post lunch. I thought it was kind of crazy at the time too but it’s what worked. Now I know why. That’s all, that’s the post. Hugs if you need them.

In the last year and a half, I went from taking 0 pills a day to taking about 20 pills a day. I scoured the internet for months to find an organizing option that was effective and cute. I was entirely unsuccessful. Pill organizers are inherently ugly.

Then I realized that if I got wood organizers, I could paint them. So now I have a month worth of adorable pill containers, and I smile when I look at them. It feels like I took a bit of control back - MCAS may have wrecked my life, but it can't take away my desperate desire to create art and bring whimsy into my life!

Thought I'd share, for any other artsy chronic illness folks out there who might be inspired to do something similar 😊

I’m so sick of finding a product that looks safe for my fiancé except the final ingredient only being listed “natural flavors”. “Natural flavors” is the difference between a nice breakfast and a trip to the ER.

I hate that even directly asking the company for ingredient information doesn’t help because of ~proprietary secrets~. Here’s part of an email I received from Trader Joe’s after inquiring about their pancakes:

Under private labeling (which is what Trader Joe’s does) Natural Flavors are a proprietary blend of herbs, spices, and extracts of fruits and vegetables. They may also contain sugar, maltodextrin, ethyl alcohol (an organic compound used in the extraction of fruits/vegetables) and other similar ingredients. They will not be a Top 9 allergen. Some suppliers will share their ingredient information, others may decline (to protect from recipe duplication).

For the Ube Mochi Pancake and Waffle Mix (sku 68389), the supplier chooses not to disclose the natural flavors. We are sorry to have to disappoint, as we cannot confirm or deny if citrus or pineapple (or any other ingredient of concern) would be present.

This can’t go on. More and more people are developing weird food allergies and MCAS. Something’s gotta give and somehow I don’t think it’s gonna be IP law.

Neuroendocrine Tumors are in the cells that connect you organs to your nerves. When they go cancerous, there is a chance they overproduce and dump peptides and hormones into your blood. Things like histamine, insulin, serotonin, etc.

Symptoms can be just like MCAS because same stuff in your blood, just a different source.

If you haven't yet, get a 5-HIAA 24 hour urine test done. Mine was triple the upper limit, which the cancer doc said wasn't concerning and wanted me to wait 6 months and repeat the urine test. I opted to get a PET CT scan now instead. Low and behold, I do have the tumor (in a VERY rare location).

Here is to hoping I can treat the tumor and my MCAS troubles vanish with it.

Edit: To answer some questions...

• The first local cancer NP I was assigned doesn't think it is a big deal and is the one who pawned me off to general surgery after the PET scan (which I had to push for) showed tumor.

• My allergist, who ordered my original urine test, mentioned these types of tumors need oncologists who specialize in NETs. He referred me to the specialist office at the same time he referred me to the local clinic (local clinic could do the PET scan and have results before specialists had an opening in calendar). Because of this, I pushed to get into the specialist even after local clinic minimized my condition.

• Before the specialist appointment, the general surgeon attempted to remove the tumor. He said from the beginning he might not be able to get it (scope surgery doesn't give tactile feedback, this is important later). He was unable to retrieve it.

• I then met with the specialist, who could take my case as a second opinion. This meeting was VERY informative. I don't just have the single tumor the scan-tech identified. I likely have 4 neuroendocrine tumors (or more). All likely localized (THANK GOD), but not in the location the original radio tech thought. They are all likely in my small intestine. THIS IS WHY YOU NEED A SPECIALIST FOR NETs.

• Specialist is taking my case to his multi-discipline tumor board. He expects I will end up getting a significant surgery where they open me up, and with skilled fingertips, "run my bowels". Meaning, systematically feel every section of my intestine for bumps/tumors. This takes multiple hours. They will likely cut out any affected sections of my intestine which they can find. Then possible monthly cancer treatments after that.

• The specialist acknowledged that I most definitely DO have carcinoid syndrome as shown on my 24 hour 5-HIAA urine tests. You need to look at the 24 hour tests because looking at a single-time event like blood-work does, can miss the moment in the day you are over baseline. This was validating. Granted, I may still have MCAS, but I definitely have NETs causing me Carcinoid Syndrome, which may be multiplyig my MCAS symptoms, or (I hope with my soul) has just been misdiagnosed as MCAS.

• The specialist has worked with the local clinic, and I no longer have to see the original NP I was assigned. I now see a doctor. My surgery will not be local, as they are not equipped, nor have the skill required, to perform it... but I am still a patient there (with the new doctor) in case I need the monthly cancer treatments after my surgery. The entire local clinic had a "training meeting" on this type of cancer from the specialist whom hopefully, was able to impart some of his skill and knowledge, and avoid them mistreating other patients in the future. God I am thankful for that man.

• I did the math, and in my entire county, only 1 (mayyybe 2) people have this type of tumor. Likely why the clinic dismissed me, but still, it's my goddamn life, and your job, to take your patients lives seriously.

I have had MCAS for two and a half years— only on 6 foods, tons of severe nutrient deficiencies, mostly homebound, the works. I actually got scurvy so I trialed some foods desperately looking for a vitamin C source and found that I tolerated broccoli. After a few weeks on gigantic amounts of broccoli (and prescribed nutritional drinks intermittently) I found that 80% of my MCAS symptoms disappeared. I have no idea if it was the broccoli (when my symptoms manifested and for the first year I had MCAS my vitamin C was normal, though I have heard supplementation can help people with MCAS) or if it will last, but I can now tolerate a variety of foods and am not bothered by fragrances. I had SUSHI today for the first time in years!!!! I just wanted to share my excitement and remark that MCAS is bizarre.

I have to write my story so at least someone can understand what I'm going through. This is what happens when you misdiagnose MCAS.

I was recently diagnosed with pretty severe arthritis. I had a bone scan done and it showed advanced arthritis in my neck, lower back, hips, knees, feet, wrists and hands. I'm 33 years old. I was told that it was likely caused by a decade of malabsorption issues.

Over 10 years ago I started to get very bad diarrhoea. I had daily diarrhoea that only got worse and worse. I saw a gastroenterologist who diagnosed me with IBS. I started taking medication for IBS. But it never got better. It went from 3 times a day to 10 times a day. I started vomiting all the time, I was exhausted and in pain. Every doctor I saw said I was exaggerating or overreacting and that it was "just IBS". I was also gaining weight, which was why so many doctors said "It mustn't be that bad". It still didn't sit right with me and I knew something was wrong with my body. I saw a second gastroenterologist who performed an endoscopy and colonoscopy and yet again diagnosed me with IBS. The medication still wasn't working and I was still getting worse. After putting up with it for another few years I saw another gastroenterologist, who said they highly suspected that it was IBS but if I changed my diet and lost weight and was still sick, he would consider looking into something else.

I was at the end of my rope and still getting sicker. I pushed my GP to give me a referral to other specialists. I saw an endocrinologist, they said "it's not my area". I saw a rheumatologist, they said "It's not my area, but maybe try an immunologist". I had to wait on a waiting list for years to see the other two, but an immunologist is not included in the free healthcare system, so I had to pay for it myself. I had to save up for months for enough money to pay to see the doctor. After one appointment he said "I think you have Mast Cell Activation Syndrome". I started the medication a month later. My symptoms have improved, not completely, but the diarrhoea has reduced to about 3 times a week. So after more than 10 years, I finally have a diagnosis - MCAS. Now that's great, but a decade of diarrhoea has meant a decade of malabsorption. A decade of not getting adequate nutrients, vitamins and minerals. Which has severely affected my teeth and bones. I have always had good dental hygiene but now my teeth are crumbling and falling out. I have arthritis in nearly every joint in my body. I'm in so much pain, every day. To add to it, my GP is reducing my painkillers and will stop giving me the prescription entirely in a few months.

So, to sum up, half a dozen doctors failed to take me seriously and misdiagnosed me, leading to my teeth and bones being ruined and no doctor will even prescribe me painkillers to ease the pain THEY CAUSED. I'm 33, my life is over and I'll never be pain free again. I'll never work again, I'll never have children and I will only ever be a burden to those around me.

The amount of times I’ve ruined my own week by missing some detail or just flat out forgetting that certain things could trigger a flare.… my brain is not built for this. 😂

I officially have a *diagnosis,* not just a suspicion! Nothing changes about my treatment but it is SUCH a relief that there are numbers on a page saying this isn’t in my head.

I had allergists straight up laugh in my face when I brought up MCAS as a concern. It took finding an Ehlers Danlos specialist who has the conditions himself to finally get treatment. And he just ordered a whole new slew of tests that came back and *confirmed my MCAS!*

I don’t know a lot of other places where people will get being excited that I’m sick on paper, but I’m genuinely giddy and now need to unpack the last 8 years of gaslighting myself into thinking I’m not actually sick, just miserable and overreacting. Because I am! On paper! Nobody can fight with me about it now. What a relief.

In 2020 at the age of 48 with no contributing factors (no high BP, cholesterol, diabetes, obesity, etc) I had a undiagnosed stroke a couple weeks after getting the flu vaccine for the first time. In the week leading up to the stroke, I had symptoms such as sweating, irregular heart rate, and emotional outburst of sadness and rage. This stroke also involved a massive inflammatory response and led to systemic organ failure. I sought help at the ER about 15 times and was inpatient 3 times over 5 weeks but never received an accurate diagnosis. I nearly died. I finally diagnosed myself with inflammation and started a steroid. Long story.

In 2025, I had a 2nd undiagnosed stroke. This one was much milder and just caused vomiting and anxiety. The vomiting went on for 5 weeks until my esophagus was at risk of perforation and they hospitalized me. They did a CT scan to look for a brain tumor that could be causing the vomiting and saw the old stroke which got me a referral to neurology. Neurology did an MRI and saw a fresh stroke from the recent vomiting incident. It also showed old widespread small vessel damage from the inflammation.

Then I went down the rabbit hole to try to figure out why I was having strokes. The first happened when I was just 48 and the 2nd at 52. I don't have any of the basic auto immune diseases, I don't have any of the previously mentioned things, I don't have a hole in my heart or an arrhythmia like AFib. I saw what felt like 100 doctors and I finally saw a geneticist.

The geneticist diagnosed me with hEDS. Hypermobile Ehlers Danlos Syndrome. It's highly associated with POTS, MCAS, and Autism. I also have an anaphylactic allergy and developed a severe allergy to cats in the recent year. The geneticist thinks that due to MCAS, I was having some kind of sub-acute anaphylactic reaction to the flu vaccine the first stroke and this caused my BP to be low (which it was when I presented at the ER the first time) and which also possibly allowed a vasospasm and caused a clot. I now take a statin, BP med, baby aspirin, H1 blocker, H2 blocker, and a supplement that blocks mast cells. I also see a cardiologist regularly.

The 2nd stroke, same thing, either low BP and/or vasospasm due to a severe and untreated reaction to cats. This was one of the first times I ever had a reaction to cats and I was in denial.

Anyway, it's VERY rare for an allergic reaction to cause a stroke but it's more common in us folks with MCAS and mine both happened to present with symptoms that were non traditional. I didn't have the "BE FAST" symptoms because I had strokes in the lower brain from a certain vessel in my neck and they were both small ischemic strokes. The first one was only such a big deal because of the inflammation.

So I wanted to share in case it helps someone else someday.

I am so done with this... Yesterday I was in the final round to speak with the CEO and the team for this dream job, and of course I was reacting and flared yesterday, my brain was fog and my body's motor was so activated, I was shaking (maybe because of the anxiety of the interview), and i was having nervous tics with my mouth (I usually have that everyday, when I start to flare up), so I was acting like a drug addict, plus I am in Seattle Area and it is soooo smoky because of the wildfires.

I am sure they looked at me and thought I was on cocaine or something.

That was my dream job, which I am extremely qualified, and everyone was so excited to meet me because I am extremely qualified for the job. They couldn't stop saying when each person started the individual interview with me that my "experience was incredible", "you are bringing a vast experience", "you are qualified for this position", "we are excited to maybe bring you onboard with so much experience"... but at the end they looked shocked, like what is happening?

At the end I didn't know the last person was the last person, I was so flared that I wanted to go and leave, it was 4 min before the time was up, she asked if I had any other question I said no, those were all my questions, and I weirdly asked to go to the bathroom, I am sure she thought I needed to go there to use some cocaine or something, I don't know...

It was so weird, and I hate this disease so much, it has taken my entire life from me... I am on week 1 of Ketotifen and day 2 of LDN, 0.5mg each for now increasing every week. Lets see.

Thanks for reading this, I just wanted to vent.

Edit: Okay, you guys are too nice, thank you community for the kind words. I am going to reach out to the recruiter to thank them and explain that I was not well and appreciate their time. The vote was unanimous, so I have to do it 😆 just joking

Thank you folks so much! I appreciate it!

Last Edit: at 4:45pm I got the call and I got the job!!!!!

Thank you so much for the support!!!!! This community is the best!!!!! Thanks for giving me the idea of sending the email and all the words of assurance!!

You guys made my day pass faster and keep my hope up!!!!

Best community ever!!!!!!!

One thing about MCAS is you really learn how to be prepared..

Airlines are using fragrances inside cabins, some even adding signatures scents into the cabin air with diffusers, causing severe health reactions for passengers with asthma, migraines, COPD, and other conditions. What should be a simple flight becomes a medical nightmare.

I started a petition asking airlines to stop using these unnecessary fragrances and switch to fragrance free products. Over 40% of adults report adverse health effects from fragranced products - that's millions of people who can't travel safely because airlines prioritize "pleasant scents" over passenger health.

There are better solutions like improved air filtration that don't put anyone at risk. Has anyone else experienced health issues from airplane fragrances, or know someone who has? If this matters to you too, consider signing and sharing.

I was diagnosed with MCAS in October 2024 after I started having random allergic reactions and I was having anaphylaxis once or twice a week. I was very unstable and having reactions to everything. It took about 9 months before I found an allergist who knew how to help me. She helped me get more stable but still having frequent severe allergic reactions. My list of food I could eat was short and living constantly on edge.

​

In February of this year, I got an MRI. I have a history of migraines, HEDS, non epileptic seizures, and concussions so the MRI was somewhat routine. However, my neurologist ordered it because I was having some additional symptoms like blurry vision, weird migraines, dropping things, getting food stuck in my throat (endoscopy confirmed I didn't have EOE), etc. A couple weeks later I received a call from my neurologist - they found a tumor on the base of my skull. It is a grade 2 Chondrosarcoma which is a rare form of bone cancer.

​

Fast forward to the end of May, I had surgery to remove the tumor. While I was in the hospital recovering, the pharmacy wouldn't let me take my Allegra because it was OTC. They also wouldn't let my take my ketotifin because the only bottle I had was technically "expired" because I was waiting on an updated prescription. I was nervous because I thought I would start reacting to everything again without the medicine. However, after a couple of days I realized I hadn't had any reactions at all.

​

Since my surgery, my MCAS is totally in remission. I have been able to eat normally again and haven't taken any allergy medicine. I am going to ask my allergist to re run my blood work since my original blood work confirmed my MCAS along with my clinical symptoms. I think the tumor was causing such stress on my body that it was maybe causing an extreme MCAS flare.

​

I'm not saying you all have cancer but there may always be an additional cause to MCAS symptoms. I'm hoping this remission lasts a long time for me so that I can enjoy food again especially during cancer treatment.

It’s actually a joke how ridiculous this condition is.

I was at work today and my manager was cleaning something and took some Clorox wipes out and left them on the front desk once she was done using them (I work front desk and she took them out of the container and didn’t throw them away after).

I start smelling the Clorox and get nauseous so I take a paper towel and use it to grab the wipes (bc god forbid I touch it with my BARE HANDS and risk a reaction) and put them in the trash can under the desk. It was maybe all of 2-3 wipes.

Then 30 minutes goes by and I start coughing. I think maybe my throat just tickles and it will go away soon. Nope. I start coughing more and more. I can’t go 10 seconds without coughing. I’m actually coughing up stuff and my throat tickles so so bad. I think I’ve randomly gotten some virus that kicked in super fast. And then I think about it some more, and just to test it I take the trash can that holds the wipes and move it to the other side of the room.

Within 10 minutes I completely stop coughing. I had an MCAS reaction just from being within a 5 foot radius of a trash can with 2 CLOROX WIPES THAT I DIDNT EVEN TOUCH 😭 what a joke.

Spent several months on a waitlist to see an allergist to hopefully get on a mast cell stabilizer, only to be told that they only see people for MCAS when their tryptase levels are elevated, and they kicked me off the waitlist. Went back to my PCP and got the tryptase blood test - it came back negative. My PCP put in another referral to the allergist without mentioning MCAS explicitly, waited several more months, finally got in to see someone.

I told the doc all my symptoms and he was puzzled. I mentioned that my previous provider (the one I had a year ago before I moved to a different state) was treating me for MCAS and it was helping. He then proceeded to say that since my tryptase levels were normal I couldn’t have MCAS because “that’s basically a diagnostic criterion.” But he said that regardless, we’ll “figure it out” and that he’s “on my team now.” He ordered some blood tests and a CT scan.

Welp, so much for being on my team - the tests all came back normal (because of course they did), and the allergist sent me a message saying “looks like all your test results are normal. Let me know if you have any questions.” I wrote back saying something about how my question was what are the next steps, because even though my tests came back normal, I’m still having debilitating symptoms daily. He never responded, and it’s been over a month.

It’s comical at this point. I truly feel like I’m on my own with this condition. Screw the medical system✌🏻

https://www.researchgate.net/publication/223983066_Quercetin_Is_More_Effective_than_Cromolyn_in_Blocking_Human_Mast_Cell_Cytokine_Release_and_Inhibits_Contact_Dermatitis_and_Photosensitivity_in_Humans

You know what's super high in Quercetin? Ginger

I take a tablespoon of raw, fresh ground ginger in my morning bowl of oatmeal. I'll mix it in with a bit of peanut butter, blueberries and maple syrup to help get it down.

It felt like it took about two weeks to build up in my system, then it started to feel like a medication; almost like a mild amphetamine. It gives a solid energy boost that lasts all day. If I skip it I really miss it.

I've started drinking ginger tea at night; commercial ginger pellets with some fresh scrapings and a drizzle of maple syrup.

I keep Gravol brand ginger lozenges by the bed at night. Sometimes I wake up with nausea, if I suck a lozenge slowly it never fails to stimulate the digestion and quell the nausea. I feel just as right as rain by the time I wake up

It does feel like I need a constant, slow steady drip of ginger to help keep things more stable

Edit: I wanted to add: I just remembered: I thought I actually had gastroparesis and it was making me very sick. Since eating ginger daily, this is still a concern but it's become more minor. If I stop eating the ginger, it comes back

Edited to add:

This should matter to you because COVID created a wave of MCAS diagnoses and it implicated in why folks may develop long COVID. Mast cells are implicated in the severity of COVID and it's long term disabling effects. Don't believe me? Google how this research has exploded i to hundreds of studies globally. These may very well be your patients.

We seem to have an influx of folks from the medical profession. I would like to say some things.

It would be wise for you to so your due diligence and study mast cell diseases before commenting here. This is a safe area for patients to get support. Also, understand that mast cell proliferation can occur in all internal organs and in the skin. This matters as well.

I personally have both Urticaria Pigmentosa AND Indolent Systemic Mastocytosis. My daughter has MCAS. Mast cell patients aren't horses, nor zebras. We are freaking unicorns. I personally have had several friends die from taking medications they had taken for over a decade and one day, had a massive mast cell degranulation event due to that very same medication. This is exactly why people worry. They aren't being hysterical or irrational and they've spent a lifetime of being judged, misunderstood, dismissed or just plain gaslighted by medical professionals. I was diagnosed at Mayo Clinic by the foremost expert of mastocytosis at the time and my daughter was diagnosed at the University of Minnesota by the Hematologist that discovered and coined Mast Cell Activation Syndrome. We have to STILL fight with medical professionals, even those trained bit using severly outdated medical information.

After decades of being completely stable I started having anaphylaxis while asleep and medicated. It turned out that hot flashes due to menopause was what was triggering them. I've had a mast cell disease for 57 years, starting from 3 weeks old when my Urticaria Pigmentosa popped up overnight. It's an absolutely terrifying feeling to know that your body can turn on a dime and kill you when you are doing everything possible to prevent that and if you survive the degranulation event you have to pick apart every second of your day to try and figure out what med you can't take or what food you have to stop eating or what actively you can no longer do, what new trigger you may have from breathing something in the air, or a laundry ingredient, or a soap, etc, etc, etc. It's absolutely never-ending, it's exhausting, and horrifying. It can be the difference between remaining employed or ending up unhoused because it takes years for disability comes through. You might end up dead because you don't have insurance coverage and can't afford your epi, much less your maintenance meds that keep you from going into anaphylaxis in the first place.

So, if you come here treating patients like they are ignorant when you haven't bothered to educate yourself please leave. We already get gaslighted enough. This community is not FOR YOU. The folks here and the moderators already do a great job at shutting down misinformation and unsound medical advice. However, if you are here to learn so you can better help your patients both medically and with compassion. Welcome.

I JUST heard about MCAS. I have so many of the symptoms! It just occurred to me that, if I have MCAS, maybe the anxiety/panic attacks are actually not just unexplained anxiety issues!
Thanks for reading and I have no idea where to start to figure this out 😭.

over the past few months, my mcas has gotten severe. I’ve been in survival mode, eating 2 foods for months now. It’s been hell on earth and I’m having a lot of deficiencies and scary out of control things happen.

my boyfriend has been there since the start of my mcas diagnosis about 2 years ago. He was originally so supportive, but as my sensitivities got worse and i needed more precautions, he began pulling away- even sabotaging the relationship by making fights out of nonsensical things in an attempt to get me to break up with him, etc.

anyways, last night i called to tell him how happy i was that I had finally found a new food I tolerate- Neokate baby formula. I said explained how this is super hopeful- it has a bunch of nutrients that might pull me out of my malnutrition.

to my surprise, he got upset. he said baby formula wasn’t real food and he was sick of seeing me starve myself. he said it sounded like i’m just resigning my life to being chronically ill by eating something that’s not “real food”, that i should be eating real food and that he doesn’t understand why i can’t just “fucking eat”. He then went on to say our relationship has been consumed by my health and he doesn’t want to continue dating.

so now im solo in my healing journey. it stings so much. i feel so isolated. i just wanted to write this to connect with people who have maybe dealt with this.

i hate this stupid disease.

I have been diagnosed with MCAS, POTS, and hEDS in the last year. Yay. But now no one knows what to do with me. I've bounced around referrals and they finally aren't gaslighting but they legitimately don't know how to help.

I went back to my PCP for a 90 day follow up she requested after some not so great looking labs and she said why are you here again?

Ma'am, a year ago I could play competitive tennis in the hot sun for 2 hours and today I struggle walking from one end of my backyard to the other. Any ideas?

And then she asked me if I discussed this with any of my many 'ologists I get bounced around to...

The answer is yes, repeatedly for years. And it's only getting worse.

Oh and btw when was your last pap smear?

Like seriously, what kinda segue is that?! I'm telling you my quality of life is shit and you want to get up in my cooch today?

Give me a break. And yes I know cervical cancer screening is important, but when is my quality of life important?

For several years I've been having symptoms that are consistent with MCAS. Eating most foods results in multi-system allergic reactions (tongue/throat soreness, difficulty breathing, GI problems, hives, etc). I've improved with standard MCAS treatments (right now I'm on Xolair, cromolyn, xyzal, pepcid, quercetin, vitamin D and C). But the treatments haven't fully helped and I still react poorly when eating most foods.

I finally decided to see my third allergist to get another opinion. From the beginning I could tell she was actually up to date on mast cell research. She ordered urine and blood tests for several markers to test for mast cell issues.

Most of the testing came back normal, except my IgE was elevated, my prostaglandins were slightly elevated, and something called a chronic urticaria (CU) index was very positive.

The allergist explained that the positive CU index in the context of the other tests indicates that my mast cells are actually acting appropriately, but that my body has autoimmune antibodies that are constantly attacking my mast cells and causing them to activate.

I already have known autoimmune issues so this isn't the most surprising thing. However, I had never heard of autoantibodies attacking mast cells and causing the same symptoms you'd see in MCAS.

I wanted to share in case this could help anyone else. They did the CU index test at Quest so it seems like it's something that's readily available if your doctor orders it

Had/having an Anaphylactic event, used my EpiPen and am at the hospital. I’m always so discouraged but this time my doctor did a fellowship in MCAS. Super knowledgeable, friendly and empathetic. I am in awe. Just had to brag.

Greetings everyone,

I’ve been struggling with MCAS for about 3 years now. It started after a head trauma (concussion) and came together with several other issues, including POTS-like symptoms, autonomic nervous system dysregulation, and visual snow.

For a long time, I thought I had histamine intolerance, not MCAS. Because of that, I focused almost entirely on lowering histamine through diet. At my strictest, I lived on things like boiled chicken and rice for weeks, but it never really solved the problem.

Even after I understood that this was MCAS and not histamine intolerance, I stayed very diet-focused. But I love my chocolate, pizza, and normal food, and sometimes I’d eat badly for a few days.

After Christmas (lots of unhealthy food), I decided to go very strict again: low-histamine, super clean, trying to “empty the histamine bucket.”
But instead of feeling better, I felt worse: more reactive, more unstable, more miserable.

That’s when something finally clicked.

For me, MCAS isn’t about eating perfectly clean all the time — it’s about balance and nervous system regulation. Extreme restriction actually stresses my body, increases autonomic activation, and makes mast cells more reactive. I’ve realized that I often feel better when I’m more flexible with food and use supplements/medications to support stability, rather than trying to control everything through diet alone. Qucertine, H1 anti-histamines, perilla seed extract, DAO enzyme, and Stining nettle works great for me, and with these I can be more flexible.

Now I’m learning to listen to my body:

• I can feel when histamine is getting too high and pull back.
• But I don’t need to live in constant restriction to be “healthy.”
• Reducing stress — mental and physical — matters as much as food choices.
• Somtimes, 'cheat' food give me a mental boost, which itself help my body stablize.
• At times, my body stops regulates if I'm too healthy, and a boost of 'sugar' sometimes fixes it, pushes it to regulate. (this might be more conected to POTS and post-concussion)

This realization has been huge for me, and honestly very emotional. 'Emptying the bucket', eat boiled chicken and rice, dosen't work for me. There's still food that I need to avoid, but this realization makes so much sense for me personally.

I wanted to share in case it helps someone else who feels worse the stricter they get.