I have a rare immune disorder called MCAS that basically makes me allergic to living. AMA!

This is what we believe my wife has. It's very difficult and at this point, she is completely bed bound and unable to tolerate any light at all. Her sensitivities to smell are extreme.

What was your diagnostic journey like? Because it's hell for us lol.

I'm sorry that you guys are going through this. Honestly it is a very difficult journey, but it is doable. I got lucky. I had never heard of MCAS before I was diagnosed. I went in for an allergy skin prick test to renew my immunotherapy shots, and my allergist said "it's impossible for you to be allergic to this much. Something else is going on". He knew of MCAS so he knew what symptoms to look out for. He did very minimal testing. First he made me read off which symptoms of MCAS I had based off the wikipedia page. I had all but the two bone ones. He scraped a tongue suppressor across my back to test for Dermatographism. He then did a blood test for serum tryptase. It came back negative, which is usually indicative of MCAS (positive is more for Mastocytosis) so that confirmed his suspicions. I didn't have to do the bone biopsy or anything like that which is nice. There is a fantastic support group on Facebook called Mast Cell Activation Syndrome Community that has a map of competent physicians who know of MCAS and are able to diagnosis, and treat you. They also have subgroups for each region of the US, as well as for other countries (I'm the moderator of the one for the Midwest). I highly highly recommend checking the group out!

What was the most awkward situation caused by a allergic reaction?

When I was in 2nd grade I had my first ever MCAS induced migraine. It happened during a school assembly in which my favorite author at the time was speaking to our class and signing books. I was basically sitting there on the gym floor sobbing because I was in so much pain, and also lost control of my bladder in front of the entire class and my favorite author

Who was the author?

Honestly I don't remember. Part of MCAS for a lot of people is memory issues, I barely remember middle school let alone elementary school. I think it was a female author who wrote books about important people in history, like the man who devoped the vaccine for polio. For some reason that sticks out in my head but no idea if that's actually who it was or not lol

I feel you, I have chronic migraines, multiple a day. Are you taking any meds specifically to prevent them? I can recommend some.

No preventive meds aside from allergy meds I'm afraid. I can take excedrin in small doses occasionally, but no preventative meds at the moment. I would love your recommendations thank you!

I've almost wiped out my migraines with Candesartan, prescribed by my neurologist. it's actually a blood pressure drug usually. Also had success with sodium Valproate but that had horrific side effects. You could also try taking Melatonin each night, I was prescribed that too.

I'll do some more research on those and talk to my doctors about them. Thanks!

Are you able to take ibuprofen?

While I was growing up I suffered from severe migraines and my doctors told me I'd "just have to learn to live with them", then I started trying random OTCs and ibuprofen noticeably dulled the pain. You gotta drink water or eat food with it but that's the only inconvenience (I'd vomit if I didn't).

They were bad enough I wanted to die a few times. Went to the hospital once because it was too painful. They gave me the good stuff 8) that turned out to be a nice experience.

I'm able to take acetaminophen, but not ibuprofen unfortunately. I have a problem with not being able to tolerate most NSAIDs

Few years ago i was having a stroke and didnt know. All but one of my veins in my brain was clogged from a giant blood clot.

Doctors gave me so much morphine i pissed myself when asking to go to the washroom i was so out of it. Id been asking to go for hours but couldnt stanf without fainting and collapsing so they wouldnt let me up to go. Doctors said they had no idea how i worked for 3 days while my blood clot would have been steadily getting worse.

Never in my life do i want to feel that pain again. I couldnt even keep a sip of water down without puking.

I'm so sorry you went through that! Blood clots are common in MCAS so I'm constantly on the lookout for them. I'm scared to get one, because morphine is a HUGE no-no for MCAS. Morphine and codeine derivatives can kill us before doctor's are done administering the medication. Scary stuff! I'm glad that you were able to recover and get through that though

What type of music do you like listening to?

Despite being allergic to my emotions, I like emotional music. Anything along the lines of Fallout Boy, Mayday Parade, The Maine, Panic! At the disco, etc. So pretty much any emo, alternative, or pop-punk type stuff is my jam

Ah I can see that by your username. I love it! Me too!

What happens when you have an allergic reaction to your emotions (or just to things in general)? Do you get hives for one thing but something else like difficultly breathing for another allergy?

Yeah so my reactions vary. My reaction to sadness is different from my reaction to being nervous, for example. When I'm nervous, I break out in red hives on my chest, my throat closes slightly, I get super pale in my face, and I shake uncontrollably. When I'm angry, the same thing happens, but I also cry uncontrollably, and most of the time I faint. A lot of my reactions to emotions are very similar to panic attacks. Stress makes me feel like I have the flu, complete with a fever and vomiting. I also react to being really happy, but that reaction is more upset stomach and hives than anything. I rarely go into full blown anaphylaxis from my emotions, but it has happened before

Give a listen to The Julianna Theory. They have a different vibe accept albums, but it's all really amazing music.

Oo thanks for the recommendation! I'll listen to them tonight

Vibrators would make you sneeze?

Sneeze, itch, throat close, nauseous, upset stomach, take your pick. On that topic, some people with MCAS are allergic to sex, sperm, or their own female fluids.

Holy shit - so how do you balance risk and reward with sex?

Trial and error honestly lol. I monitor my heart rate to make sure I'm "safe". We also try to minimize me touching fluids such as sweat and ~other stuff~. I also do what I like to call "pregaming" where I pop an extra benadryl and a zyrtec before we get down to business lol

Your bf/gf is an awesome person for helping you through this.

He said thank you! He was with me before I was diagnosed, so he's stayed with me through it all. I'm sure it does put a strain on him, especially on the days when he has to take off work to care for me, but he never says it does.

What do you enjoy doing for fun, and how is that affected by your condition?

My top two hobbies are archery and embroidery! Archery has kind of been put to the side for the time being. Most days I'm too fatigued (chronic fatigue is a symptom of MCAS) or my muscles are too inflamed for me to hold a bow. But I actually picked up embroidery because of the mcas. I can do it from bed, and it's easy enough to do. The only issue i have with it is accidentally stabbing myself with the needle. I have another disorder called Dermatographism (a symptom of MCAS) which basically gives me hives and welts anytime something pokes me or there's pressure on my skin

My friend always wraps a band aid around the top of their finger when they knit, I don’t know if that would help with you.

I'm actually allergic to the adhesive on band-aids! So it could help some people with MCAS but unfortunately it would do more harm than good for me

do you use thimble?

I don't currently but I do have one on it's way in the mail!

Have friends and family been supportive? Have you run in to folks who straight dont believe you?

Also forgot to add, yeah there's a running joke in the MCAS community that MCAS "must be all in our heads" as that what we're told a lot by people who don't believe us, or by doctors who had never heard of the condition. Had a neurologist tell me I was "crazy" when i told him about it, even after i showed him the wikipedia page for it, and the note from my allergist that explicitly states "Mackenzie has medically proven MCAS".

Thank you for the reply! I cant imagine how frustrating that must be for you.

Do you hold down a job? Or have you been able to receive disability for this? ...was/is it a pain to explain MCAS to the disability adjudicators?

Some of us MCAS patients are able to hold jobs, while others aren't. I can't do anything that puts me at risk for getting sick, so no retail, customer service, or food industry (getting "muggle sick" such as a cold or the flu could be deadly to us, and can last up to 10x as long as what you would have). I'm planning on starting an etsy shop for my embroidery to make some extra money, but at the moment I rely on my parents to help with rent and groceries. I also have a GoFundMe set up since medical bills for MCAS can be expensive. I'm not on disability because it just seems so incredibly daunting. The majority of people who apply for disability are denied the first, second, and even third time they apply. MCAS does qualify someone for disability, but it is extremely difficult to actually get that process started, let alone be accepted. The system itself is not the greatest so a lot of us just don't even bother

Ableism is real...

Very much so. Also currently arguing with a man on Twitter about him invalidating the experiences of MCAS patients who nearly died from Quorn products. Ableism is more rampant than we think, even within the chronic illness and disability community!

All of my close friends have been incredibly supportive. A lot of my honor fraternity members help me to spread awareness, and some even wear the MCAS ribbon. My parents have been incredibly supportive, albeit very scared about what I'm going through. Some of my family such as aunts, uncles, and cousins have severely questioned it. One aunt is a nurse, and she hadn't heard of it, so she thought my doctor was a pos. One of the biggest problems my family has had is my newer use of a cane. I don't use it everyday, so on the days I don't I fold it up and keep it in my purse. But I do occasionally use it on days when my MCAS causes severe inflammation, or my MCAS-caused arthritis acts up. My family is all either from Texas or Alabama, so they've all got very old fashioned views on disability in general.

Are your reactions mild or severe and what problems if any do you experience living everyday life?

I have both mild and severe reactions! My reactions to things change from day to day as well. So one day I could only get a small skin rash from soy, but have severe life threatening anaphylaxis the next day from the exact same ingredient. Living everyday life is definitely difficult. I have two $300 air filters in my one bedroom apartment running constantly, I cant eat leftovers, have to take a total of 27 different meds daily (as well as two shots monthly), have to constantly monitor my blood pressure and heart rate, and any time I go outside or open a window I have to wear a special n95 mask to filter the air

I've got a friend with that! It didn't activate (unsure if I am using that correctly) until after she had her breast implants removed. Poor chick gets anaphylactic going up the elevator to see her doctor. Does it have genetic components? Her daughter is allergic to a ton of things (not nearly as reactive as her mother), always wondered.

I've met a lot of people who have developed it after some sort of cosmetic surgery, very weird! It can have genetic components in some cases! Some people develop it from the KIT gene mutation (I forget which specific one but it's one of the KITs), and some people develop it from their parents, or pass it to their children. We suspect my aunt (father's sister) has it, as well as her child. So we believe my father either has a very minor form of it, or is a "carrier" for it. Your friend's daughter very well could have developed it from your friend!

Whats the simplest thing you do that activates an allergic reaction?

This is a fun question lol. Honestly? Breathing. If there's something in the air (literally anything) and I breathe it in I risk a life threatening reaction. Another one I would say is just waking up. If I wake up before my body is ready then any number of reactions could occur

Oh..shit

My exact reaction when I learned that too

then do you wear facemask/s or not?

I do! Currently I'm using an n95 vogmask with one exhale valve. I also have a n99 cambridge mask on it's way from the UK. Both of these masks last between 3 months and a year so I'm pretty much constantly buying them when they go in stock. I also have some plain fabric ones that I use inside if I'm not feeling well due to pollen in the air, cooking smells, or anything else indoors that might be triggering me

Hey you should consider doing a 48 day fast only drinking water, dark green leafy juice, Seamoss and dr Sebi alkaline herbs that are high in cleansing and detoxing the body. Go on google and type in “ tea posh naturals”. And invest into herbal cleansing packages. You can really reverse any illness load your body with plant based iron, oxygen and keep your PH level high. Buy oh testing strips from amazon. No disease or condition can thrive in a oxygenated body with a high ph level. Stop solid foods now and fast. It will be difficult but I promise you can do it. Make sure it’s spring water with kelime juice it it. The water then becomes naturally alkaline

I'll look into this thanks! I have blood sugar problems so I don't think I could successfully do a 48 hour fast, but I've done 24 hour ones before just fine.

What do you eat everyday?

MCAS varies from person to person, so my diet might differ from another MCAS patient. Basically I follow a strict low histamine diet, so no alcohol or fermented foods, no citrus, no leftovers, no melons, no bananas, no strawberries, no spinach, no wheat, gluten, dairy (except duck or quail eggs), etc. I pretty much live off vitamins, fresh and flash frozen fruit, organic grass fed chicken, oats, and cassava flour. Sometimes I do react to my safe foods, so sometimes the only thing I can eat in a day include water (trippe filtered of course).

All those things makes you most disciplined person on planet Earth. I mean you are brave man.

Lol thanks! Sometimes I do cheat, drink a soda or eat a cookie, and just deal with the consequences

Have you done any research on how far we're from creating a cure for this condition?

I haven't done nearly as much research as I should, but the general consensus is that nobody knows how far we are from a cure. MCAS became a medically recognizable condition and official diagnosis in 2007. It wasn't until 2015 until a somewhat decent treatment plan was created. The issue with a cure is that it wouldn't be a one-size-fits all cure. Some people are randomly born with MCAS, some develop it after trauma (such as a really bad car crash), some inherit it from their parents, some get it from a specific genetic mutation (a KIT gene mutation), and some people just randomly develop it in their late 40s-early 50s with no known reason whatsoever. On top of that, there's only really two or three "experts" on MCAS, and both are full time doctors so not really a lot of people working on a cure at the moment

What are the consequences in the case of a soda or a cookie?

In the case of a soda (I like dr. Pepper), brain fog (term we use to describe when we have trouble thinking, concentrating, or we become dissociated- similar to the idea of a cloud surrounding your brain), an upset stomach, and a headache. So not too bad but still not great.

In the case of a cookie, it depends on what is in it. Lotus Biscoffs for example are very soy heavy, so they give me all the above symptoms, plus a rash/small hives, some itching across my body, and they also make me very tired. The tiredness comes in from a mediator (chemical released by angry mast cells) called PGD2 which puts us MCAS patients to sleep.

Damn, all that from some cookies.

How does brain fog feel to you? Is it unpleasant?

cloud surrounding your brain

This part resonates with me but my brain fog comes from very different things but it feels kind of nice. It probably doesn't for you if it's a common occurrence in your life?

Sometimes it does feel nice to not be able to think or concentrate! I wouldn't say its unpleasant nor pleasant. It just "is" I guess. It feels hard to describe, but essentially when it happens I just trail off, have problems forming a sentence, aphasia triggers. It feels like the world is fake, like I'm floating, and like my soul/consciousness/whatever has separated from my body

I just read an article that links MCAS to COVID outcomes! Have you heard anything about that yet? Essentially, the crazy inflammation being seen in hospitalized COVID cases appears to be people with undiagnosed MCAS. They are seeing success in using the same medicines used to treat MCAS in helping COVID patients avoid the dreaded cytokine storm.

Source:

https://www.researchhub.com/paper/817177/summary

Yeah actually! Surprisingly, COVID has been very good for the community, as people with undiagnosed MCAS are now being diagnosed, and are beginning treatment. COVID is very very dangerous to those of us who have started treatment however. With MCAS, your immune system is super hyperactive. It's always going way above the rate of a "normal" person. COVID also makes your immune system hyperactive, so an MCAS patient with COVID has a double hyperactive immune system, which is not good to say the least. Unfortunately, the only confirmed case of an MCAS patient with COVID (that I know about) died from COVID pretty early on into having symptoms. Since then, the community has been very scared, and the vast majority of us are hiding in our homes, and will be until 2021.

Cytokine storms are also very very common in MCAS! Sometimes it's hard to tell if I'm on a "histamine overload" or if I'm in a Cytokine storm. COVID also happens to be the reason why a lot of MCAS drugs are currently in a shortage. I'm having problems accessing pepcid (prescribed as it is triple the strength of what you can buy at walmart) and quercetin. The community completely understands testing these drugs against COVID, and even recommended doing so, but we just wish that the media would wait a little while longer before announcing these drugs to the public.

I just had a baby and struggled with heartburn in my last trimester. I had a lot of trouble accessing pepcid as well. I thought it was because a different OTC heartburn med was recalled so people were buying pepcid instead? I didn't realize it had anything to do with Covid

Yep pepcid was announced as a "potential miracle drug" for COVID so it flew off the shelves. The announcements all went by "Famotidine" which is Pepcid's scientific name. But you're right about the other antacid! The brand name for it was Zantac, and was one of the best working (yet controversial) MCAS drugs. So when it was recalled and MCAS patients could no longer get their prescription, they had to switch to pepcid. That, combined with the COVID announcements, made pepcid virtually impossible to get. Definitely a double whammy

Are you allergic to cosmetics?

Yep! I can't wear any sort of foundation or concealer. I have two safe lip glosses, and a safe mascara from kiss freely but other than those, I am makeup free

Good to hear there are safe cosmetics on the market.

Very few, but they're safe for me! They do contain olive oil and some of them contain coconut, which about 50% of people with MCAS react to. Luckily I'm not one of them!

How do you celebrate your birthday?

This is actually the first year that I'll be celebrating since being diagnosed, so I have no idea what I'm going to do yet. In the past I've had a bite or two of cake after I've had some benadryl and always kept my EpiPen close by. Last birthday I went to dinner with my boyfriend and roommate, and tried to find something on the menu that I would react the least to. I think this year I will try to find either a safe cake or cookie recipe for me to eat while celebrating at home with some friends and a movie or board games

Oh, well when that happens I wish you a happy birthday

Thank you in advance!

Does medication help? I am severely allergic to many things as well and know that some meds are hit or miss.

If so, what kind? Most effective ones for me knock me out.

Some medication works for me, some doesn't. I can't tolerate most NSAIDs and antibiotics. I take birth control to manage those symptoms, as well as zyrtec, montelukast, pepcid, benadryl, xyzal, and fexofenadine daily as histamine blockers. I also take supplements such as Magnesium l-threonate, quercetin, and B12, all of which are mast cell stabilizers. I also do several different nasal sprays, eye drops, and ear drops. In the past I have done immunotherapy shots, and those helped a little bit. I stopped them because they triggered my dermatographism too much. Xolair helps a lot of us. It works pretty well for me, but not as much as I would like. Prednisone is another one that a lot of us use that helps with hives, itching, and the like

Is there an activity/hobby/sport or whatever you would like to do and you cant because of your disorder ?

When I was in high school (in texas) I was in marching band and played flute. I loved it, but it always made me sick. Now my heat intolerance and lungs make playing the flute or being in a marching band nearly impossible. I also love dancing but with my heart rate issues and near constant inflammation, I can't dance much

Hi Mackenzie! Thanks for sharing. I have two questions for you.

1. What is something you are proud of having done?
2. What is something you wish friends/loved ones would tell you? Or, what are the most supportive comments or actions loved ones do for you?

1) I would say maintaining a 3.5 GPA and having a scholarship for college while going through all this. I'm a math major, with a business minor, and have changed majors twice now (physics, comp sci, now math) so it's definitely been a challenge. 2) mainly I just want friends and family to know that remission isn't an option for me due to the severity of my MCAS (less than 5% of cases have the option for remission). I hate comments like "get well soon", "feel better", "hope you recover". While having good intentions, comments like that do more harm than good. I would like instead of they said things like "what can I do to help you?" Or "Hope your flare/reaction ends soon!". One thing that I really really appreciate the most is when people carry things for me. I can't lift anything about 5 pounds without suffering, and going up stairs is slow and difficult, so I really appreciate it when people offer to carry heavier things for me or just stay by me when going up the stairs instead of going ahead and waiting for me to get to the top. Very minor things make all the difference!

What's your survival kit for venturing outside? Or are you housebound? Do you need a special clean room at home?

I try to keep my bedroom as clean as possible. I'm technically not supposed to allow my two cats in there but I just can't say no to them! Because of COVID, I'm pretty much housebound except to go pick up meds and to go to the doctors. Aside from that, when I do go outside, I have to wear a special sunscreen as too much sunlight makes me have a reaction, it can't be too hot outside or too cold, I dress in layers so that I can remove and add layers as needed to regulate my body temperature, I have a rather large purse that contains alcohol free hand sanitizer wipes, single use gloves, my collapsible cane, emergency meds (eye drops, ear drops, ear pressure stabilizing plugs, zyrtec, baby aspirin [one of the only NSAIDs I can tolerate], stomach meds, EpiPen), and I wear my n95 Vogmask! If it is a particularly sunny day, I also wear dark tinted sunglasses to protect my eyes since I'm sensitive to light.

Phew that's quite a list, sounds like you've got every provision you need though. Must be tough with covid now having to stay in all of the time. Cats are good for regulating emotions, I'd argue they are a valid medical treatment in your case 🙂

Very much so! One of them helps to keep things interesting though, so that's fun lol. He has recently learned how to open doors so it's been difficult to try to wrangle him and keep him in one place. He makes up for being an ass by waking me up when I'm sleep walking, or leading me to bed if I have bad brain fog and fall asleep on the couch. He somehow understands what's going on, and is most definitely a medical necessity lol!

Are you disabled to the point of not being able to work and get financial support from your state?

I'm asking because I have a chronic condition involving allergic reactions that I've been seeking to have properly diagnosed as MCAS.

I had to stop working due to severe symptoms and I havent financially recovered at all. Going to the E.R. frequently for axphyxiation, urticaria and swelling. Idiopathic, no known cause.

I'm not a doctor by any means but the symptoms you mentioned are very common in MCAS. I have all of those too so I would be willing to bet it's MCAS. My advice to be diagnosed is to call around different allergists and immunologists in your area to see if they're knowledgable about MCAS. Allergists and immunologists are the doctors with the highest probability of knowing about MCAS.

I'm able to work from home in the sense that I make and sell embroidery designs off of etsy. But I'm not able to hold a job working in a store or anything like that. Flexible desk jobs are an option, but with COVID those are hard to come by. Theoretically I could get financial assistance from the state, but that process is disheartening and very very difficult to go through, so at this point I rely on family and a GoFundMe. Some people with MCAS are able to successfully get on disability, and others are able to work any job that they choose so it's really dependent on your own symptoms

Thanks for answering. I really hate to ask about money but, man, everything seems bleak. I just turned 29 and this has been going on since I was 25. It's literally hell. I take so many anti histamines just to get out of bed and not have to sit in a cold bath because my skin feels like it's on fire.

I've looked into applying for disability through my state but it seems nearly impossible. People waiting years to just be denied over and over. Not to mention, in my state it pays and abysmal amount to survive on.

Sorry to ramble, I don't really have anyone to talk to about it. Thanks again and I hope you're doing well.

No dude you're fine. I perfectly understand where you're coming from, we're in the same boat. Disability here too is just simply not worth the hassle since it pays not enough for us MCAS folks to live on. I hope you find relief soon friend

Kinda vague question, but how has your life/perspective changed after being diagnosed? 20 sounds really late to finally find out the reason why you're allergic to life.

I'm actually the youngest person I know to have been diagnosed with MCAS! Most aren't diagnosed until their mid-50s. My perspective on life has changed quite a bit. When you're told that you can die at any second, with seemingly no cause or warning, your outlook on life changes significantly. I try to live with no regrets, and I try to not let the little things bother me. Before being diagnosed, I was obsessed with trying to make people like me. Now I just don't give a damn. I try extra hard now to see the good in every single situation. I stop to smell the Roses (hypotethically of course, smelling a rose could kill me) more now, and often stop to just sit on a bench and watch the world go by. I appreciate the beauty of the world more now. I also understand others better now. Before being diagnosed I never understood the plight of the chronically ill and disabled. I too didn't believe people with mysterious chronic illnesses. Now I don't question anybody. If someone says they have something, I believe them 100% since I know most won't.

Are you allergic to your cats?

Surprisingly and thankfully no! If their hair gets too much it can make me itchy, but it's rather the dust associated with the hair than the hair itself.

Thank goodness! We have two cats as well and also have highly allergic family members that we need to make significant accommodations for when they visit. Glad to hear you can enjoy your furbabies without much change.

Very interesting AMA. I hope you are able to find comfort where you can and that you’re cured as soon as possible. Thanks for sharing you story and your time!

Thank you!

Sounds close to fiber myalgia? Or however it’s spelled. My MIL has it and doctors thought she was just faking or nuts.

It's somewhat similar! It can be caused by MCAS, and vice versa, and the two are often comorbid so they are present together in a lot of patients

Isn't MCAS also a system on an Airbus?

It is indeed! It's also the acronym for a type of military testing. Lots of different meanings for "MCAS"

How do you completer everyday tasks?

VERY carefully. I have to clean every week (like deep cleaning the entire apartment). When I use cleaning products or wash the dishes, I wear thick rubber gloves. For showering i have to sit most of the time, and have to filter the water. Washing my hair is a huge pain. Organic toilet paper is a God send. If cooking smells too much, I wear my n95 mask to filter the smells. Most of the time I also sit on a stool while cooking just in case I start to pass out!

I don't know anything about your illness, so this might be a useless comment. But if washing your hair is a pain, maybe the no-shampoo method is something for you. I haven't washed my hair with products for over a year, and it feels awesome.

Huh I'll have to look into that! MCAS makes me sweat a bunch at night so I always wake up with gross greasy hair so I'm not sure if it'll work for me but I'll definitely look into it. Thanks!

What "test" finally diagnosed it?

And are there levels of severity? Your symptoms sound like 2 of my friends symptoms, except yours sound more severe.

Are there any treatments to alleviate your symptoms?

There's currently no official test to diagnose MCAS. Most doctors will use one or all three of the following to diagnose you: review of symptoms based on the wikipedia article, a serum tryptase blood test, and a bone biopsy.

There are definitely a huge range of levels of severity. My MCAS is actually on the average side of those diagnosed while leaning more towards the worse side. Some people are completely bedridden, have really bad schizophrenia or other severe neurological disorders caused by the MCAS, other immune/autoimmune disorders (and just other disorders in general) caused by the MCAS, are strictly tube fed nutrients, can't be in sunlight, etc. The majority of people who have MCAS go their entire lives without knowing they have it. For some people, their only symptom is seasonal allergies or a food allergy or two.

Treatments vary from person to person. A very small percentage of people obtain remission through treatment, but the majority of MCAS patients just try to manage their symptoms. A lot of medications (particularly h1 and h2 antihistamines and other histamine blockers and mast cell stabilizers), avoidance of triggers, restoring the gut through clean eating, and "fixing" any underlying causes such as lyme disease or mold poisoning.

This AMA is making me wonder if I have it, mildly! I'm allergic to ~30 different kinds of pollen, salmon, pistachios (but no other tree nuts), have had 1 idiopathic anaphylaxis and 4 triggered by salmon (I think), sometimes develop random hives, and my skin welts if I scratch too hard. Do you think seeking treatment is worth it if it's mild?

Most definitely! The skin welting thing is called dermatographism btw, a huge symptom and warning sign of MCAS. Having mild MCAS just gives you a better chance of going into remission and never having a problem with it again! I say its super worth it. If it's mild, you may be able to survive off of a few antihistamines and diet changes alone and feel so much better

Since it's so "strange", do people believe you're ill? Or do people think you're faking, exaggerating, or a hypochondriac?

A LOT of people think MCAS patients are faking. My neurologist thought I was making stuff up, even after having my diagnosing doctor send him a letter about it and giving him access to my Google drive of research. I've dealt with a lot of food allergies since middle school, and I've been very open and vocal about how allergies affect people. I was always sick as a kid and still get sick easily. Because of this, people who know me or knew me when I was younger understand since they saw what I went through as a kid. But as a general rule, unless someone has heard about MCAS, or has a chronically ill family member or friend, they won't believe me.

What can't you eat?? Anything in particular you like to have?

Pretty much anything that is high in histamine or typically cannot be tolerated by MCAS. The list off the top of my head that I can't have are soy, sesame, strawberries, melons, corn, bananas, peanuts, walnuts, pecans, hazelnut, gluten, wheat, coffee (unless grown to be mold free), alcohol (whether the drinking kind or the hand sanitizer kind), fermented foods so no pickles, kimchee, olives, vinegar of any kind, spinach, black tea, etc etc. The list goes on and on and honestly I don't have memorized everything that I shouldn't be eating. I think the list is too long for that lol

Can you eat steak? I hope you can eat steak. Is so good.

Unfortunately I can't eat beef :( when I would eat them anyways, I always wanted it to be super well done so not really sure if that counts as actually eating steak lol (shameful I know). I'm originally from Austin, Texas, so I was constantly surrounded by delicious BBQ but it always made me so sick

That's awful x.x... Was hoping you could at least be a T-rex if you can't eat any veggies

Some people with MCAS can only survive off a carnivore diet! One of my good friends with MCAS follows such a diet. She primarily relies on fish and beef, whereas I primarily rely on fruits and chicken.

Do you know if you have hEDS as well? My mum and I both have hEDS and she has MCAS, the two are comorbities so it'd be interesting to see if you have that too.

I have not been tested for it no. I don't seem to have any of the "weird" bendiness or elastic skin that is common with EDS. I know I'm more "stiff" than the average person so no idea what thats about lol

Have you recognized what is true anaphylaxis and what is anxiety thinking you may be experiencing an anaphylactic reaction? I would have to imagine early on you prob thought every initial symptom was serious and have learned to realize what is mild and what is serious now? How often would you say you have used an Epi Pen?

I have actually never used my Epi Pen. My allergist hates me for that. It's very very hard for me to tell what is true anaphylaxis and what isn't, purely based on the fact that 1) there are many different "levels"/severities of anaphylaxis and 2) I'm so... used to it? My allergist said that I go into pure anaphylaxis at least 3 times a week, but I'm so used to the symptoms that it doesn't seem worth using an Epi Pen. Normally I just pop some meds and go to sleep and hope it gets better. Not the best or safest method, but i mean hey i haven't died yet so something has got to be working.

Also epi pens are very expensive and we're still in a shortage so if I hit one everytime I went into anaphylaxis, I'd be spending close to $300 a week

Wow. Not the answer I expected, lol. And you’re right they are incredibly expensive. Go go American healthcare. Prohibiting life saving meds via cost. Well good for you for not having to!

Lol thanks! Highly considering getting a doctor in Canada to get cheap epipens and just dealing with the long journey lol

I'm sorry if this is too personal, please don't answer if you feel uncomfortable, but have there been times where you felt like giving up? And if so, what have you done to get back up?

Also, what are some things you wish to do in the future?

No you're fine this is a great question! Honestly this disease has been very very hard on my mental health. When I was first diagnosed I was very scared and felt like shit constantly due to starting so many meds. I mentioned in another comment, but I ended up thinking "is it even worth trying to live with this?" So I ended up talking to a doctor, getting mental help, and got put on several antidepressants. They have significantly helped. Aside from the meds, I track my moods daily using the Pixels app. It allows me to put my general day into a single color to represent my mood so that I can better track what events put me down. Therapy isn't my thing (tried and hated it) so I try to rely on my friends and family when I need to vent. They're very understanding of my situation so they try to listen to me whenever I need a shoulder to lean on. I went through a huge grieving process, and am still going through it. I'm currently going through acceptance. I've accepted that this is my reality, and that I don't have a chance for remission, and that I can't ever had kids (family is a huge value to me, so I've come to accept that I will instead be adopting). I'm doing a lot better than I was when I first got diagnosed, but I still have issues. My boyfriend and I are currently working on a system to signal when I need help, and when I just want to be able to do something myself. Sometimes I do need help but want so badly to push through it and do it myself, so when he offers to help, it makes me upset.

In the future I wish to find two or three entirely safe meals that I can eat daily while trying to reintroduce other foods one at a time to really narrow down what triggers me. I also hope to be able to see a specialist to do further testing to find an exact cause of my MCAS, as well as to diagnose any other comorbid conditions

Was your MCAS caused by something else? I have EDS and know this is a common comorbidity.

I have no idea! We think I was born with it because I've had problems since I was born with my lungs and sinuses and such (chronic life threatening asthma as a newborn, several ear tubes and ear surgeries, full blown depression at the age of 5, etc). We think I inherited it from my father who shows minor symptoms, but we aren't entirely sure if it's just that or if I have another underlying cause such as a genetic mutation.

Do you have any tips for keeping your spirits up? I don't have food allergies but I have GI issues and a bunch of other stuff and am also in college and just, I don't know, I feel you might have something to share

Honestly? Antidepressants. I was diagnosed before going on antidepressants and I was in the lowest place in my life that I have ever been. I kept thinking "is it even worth trying to live with this disease?" So I went and talked to somebody and got help. I'm now on two different antidepressants, sleep meds, and hemp oil for anxiety and oh my God do they make a HUGE difference. Therapy isn't my thing, so I decided to give meds a try and I will never go back.

If meds aren't your thing, I follow a whole bunch of those cheesy "keep your head up even when you're down!" Illustration pages on Instagram and Twitter. They seem like such a weird thing to be into, but when your page gets flooded with them, you read them even if it's on accident, and I always feel better afterwards. LadyBlueBottle on Twitter is probably my favorite one, she posts a lot so I'm constantly reminded that it's okay to not be okay, and its okay to not be productive if im not feeling well.

I'm also on an antidepressant and thankfully on some meds that reduce pain when eating. You're right, it makes a world of difference. I still have trouble getting out of my own head though. I'm ambitious and try my best in life but am also battling doubts constantly. Honestly, the main reason I clicked on your ama was because something in me resonated, gave me hope. I saw you switched majors a bunch, what are you working towards?:)

I really like 4amshower comics, they're so wholesome and usually make me smile, but I'm going to check out the one you recommended as well! Thank you!

I also have trouble getting out of my head. I try to distract myself by watching YouTube videos or something interesting like Hoarders. Makes me feel "normal" lol.

Originally I wanted to earn a Ph.D in astrophysics and work for NASA. Quickly discovered I hated physics and it was triggering my MCAS and sending me to the hospital with what appeared to be daily panic attacks but was just a Mast Cell Attack. Switched to computer science to try to do astrophysics from that route, but it just sent me right back to the hospital. So math it is! When I was majoring in physics and comp sci i was also double majoring in math, so after being diagnosed i had to drop the comp sci in order to be able to heal and focus on my health. So now the plan is to just get a bachelors in math and work for either the private sector, or to do analytics for a government agency. I might end up doing a masters degree online, but I'm still not sure of that yet. I only have two more years until I have my bachelors so I guess I'll figure everything out then!

Even though we'll probably go our separate ways, I feel like I found a kindred soul. A friend:)

Woah. I'm sorry that your body put a wrench in your plans but I am glad that you found a happy medium and didn't stop trying completely! I'm still reeling that you're allergic to your emotions but it makes sense. It's like your body is set on max mode:0 It always blows my mind when people are good at math also, I have dyscalculia, so numbers and I don't really get along. I'm obsessed with the human body and the brain especially ( triplet born 3 months premature, resulted in a brain hemorrhage, so natural passion) so my "safe" place is a psych degree but what I really want to do is go into medicine or neuroscience. I want to help people so badly but I want to be interested in what I'm doing too, to reduce chances of burn out. I wish you the best! You're going to be amazing:)

Thank you! Your plan sounds awesome and I hope the best for you too!

Does your skin break out with tiny blisters that if scratched turn into big itchy sores ?

Occasionally yes! I have chronic hives on top of that so it's difficult to tell if it's just MCAS hives or something else

Do you ever feel like...you know just giving up on life? Also who's your inspiration to be as strong as the person you are right now?

Sometimes I do yes, especially when I was first diagnosed. I'm not super religious (I guess you could say I'm wiccan but I don't do the whole ritual/worship thing associated with that), but I believe that I got sick/was born sick in order to help educate people, and help lead us to a cure. I feel like everything happens for a reason, and thus I got sick for a reason.

Thank you for saying I'm strong haha, it's hard to be but I try. As far as inspiration goes, one of my biggest inspirations is Sarafina Nance. She's an astrophysicist who's quite popular on Twitter. We're good friends, and talk occasionally. She's verified and super popular now so we don't talk as much, but I still look up to her. She helped me a ton when I was struggling with dropping my physics major and giving up on my dreams of being an astrophysicist. When I was first diagnosed, she helped me by spreading my GoFundMe throughout the academia community. Her dad battled cancer, and shes Arab-American, so she's battled her fair share of racists and rude people determined to take her down. She also got told she had the BRCA gene for breast cancer, and got a preventative mastectomy. She documented her journey, and through the entire time she smiled through it and continued to support others. She's the strongest person I've had the pleasure of being friends with and without her support I probably wouldn't be in the positive position that I'm in

Can people visit you in person to your house or does that risk your environment too much? Can you go to group gatherings like a wedding if it’s only for a little bit?

I can have people over as long as they're not sick. I also make people take their shoes off before entering (so they don't track in pollen or anything else that will trigger me) and use hand sanitizer once inside. Group gatherings are fine as long as it's not too stressful and nobody is sick. As far as weddings go, I can't wear makeup anymore due to the MCAS so I avoid unnecessary weddings as much as possible. If it's a wedding I want to go to or have to go to, I try to eat beforehand, or bring safe food with me. I don't shake hands or hug anyone (always have to explain like "oh sorry I have an immune disorder so I can't hug you but I'm hugging you in spirit!"), I bring extra meds and my collapsible cane, and always end up leaving pretty early on into the reception

How hard is your allergic reaction? I assume not too bad because you would be dead by now.

One would think. All of my reactions have the potential to be life threatening or deadly. Some have been, some are minor. The reactions vary from day to day and from trigger to trigger

What's the worst allergic reaction you have gotten?

In high school I was a student aide for my favorite chemistry teacher. I helped clean the lab the majority of the time. One day I walked in to clean the lab after the lower level class had finished their experiments. Their experiment was something involving roasting peanuts. I walked in and immediately blew up like a balloon. I broke out in hives, couldn't stop shaking, vomited, and had to call my mom to come pick me up and take me home. She kept trying to take me to the hospital, which, in hindsight- realizing that I was in full blown anaphylaxis- would've been a good idea. I had trouble breathing, and was genuinely scared I was going to die.

What causes an allergic reaction with elevation change? Does the pressure changes just affect you more due to hypersensitivity? Thats the one im most puzzled about.

The loud noises and bright light ones would, i suppose, fall under that kind of tangent that puzzles me.

As far the loud sudden noises and bright/flashing lights go, such stimuli causes a chemical process called Degranulation within Mast Cells. During Degranulation, the mast cells release chemicals call mediators that cause reactions (think of a tree as a mast cell, it shedding it's leaves is Degranulation, and the fallen leaves make you itchy).

I suppose it is the same with the elevation change. I am super sensitive to pressure changes, including barometric and air pressure changes. I'm not entirely knowledgeable about this aspect, but I believe the pressure change activates the mast cells, resulting in a reaction.

I get the barometric one for sure. I grew up at sea level and moved to the rockies. Here its well over 3000feet above sea level, we get these things called chinooks and temperatre will go from -20 to +20 celcius in hours and ill get headaches.

But you are then basically having a reaction to the shedding of the mast cells? As in histamine is being released, thus causing an allergic reaction same as people to pollen or pet dander or whatever else?

Correct! With people like me, the shedding just happens on a much larger scale and happens way more often than what people experience with "normal" pollen allergies

I'm so sorry you have to do deal with this!

It sounds like you stay really positive. How do you manage that?

I try to focus myself on helping others through their MCAS journey and raising awareness for the disease. I like to think that if I help just one person, then the disease is worth it. It sounds oddly morbid, but when I was a child I often told my parents that I wasn't meant to be alive. I still believe that I was meant to die young. That mentality, whether true or just total BS, helps me to think that I'm alive for a reason, that I'm meant to be helping people and spreading awareness. That helps me to feel positive and feel needed

How did you make it to 20? Also congrats on finding out

Honestly no idea. I was put on some super strong antihistamines when I was 10 so I'm thinking that significantly helped me avoid death as a teen.

Was MCAS your initial diagnosis or was it a long process of elimination?

Kind of both actually. I didn't go seeking a diagnosis but rather it appeared in front of me. Growing up I was diagnosed with asthma, allergies (food and environmental), IBS, IBS-D, IBD, endometriosis, and PCOS. All of which were wrong

I know that feeling. My immunologist thinks I have MCAS as well. Originally was told IBS, allergies etc. Eventually led to mastocytosis being the cause. Just recently though have had tests for other things, MCAS among them.

Do you have any medications like mast cell stabilizers?

I do! I take so many that I forget which are just antihistamines and which are actual stabilizers, but off the top of my head I take Magnesium l-threonate, quercetin, baby aspirin, and xolair

Xolair is what is being recommended for me as well. Have had decent-ish success with otc histamine h1 and h2 receptor drugs. They managed to lessen symptoms, but don't always keep me out of the hospital.

Same here for me! I have a doctors appointment this week to discuss trying prednisone on top of the xolair. Xolair works well, but caused me major cravings and weight gain.

Ketotifen was my original, but after a while it seemed to stop working. Hopefiully the xolair works longer. Did you do any of the bone marrow aspiration tests? I am not looking forward to mine.

I've heard of the bone biopsy but I haven't heard of the bone marrow aspiration tests, I'll have to research that. I hope yours goes well and also that the xolair works for you! Pro tip for you: when you go to get the xolair done bring something sugary with you to eat/drink right after. The sugar cravings are very intense.

Its the same thing just different name. And I will keep that in mind.

Ah okay, thanks for educating me on that! I still have much to learn.

How does one become allergic to emotions? How is it experienced? Do you know anything about the science behind it?

I experience it in the form of rashes, uncontrollable shaking, uncontrollable crying, major inflammation across my body, nausea, and fainting.

I'm not entirely sure on the science behind it, but from what I understand, experiencing strong emotions is a chemical process that causes mast cells to Degranulate, meaning that they release a series of mediators (chemicals) that cause reactions. Two such mediators are histamine (most common) which is what causes seasonal allergies in common folk (and keeps MCAS people wide awake and paranoid), and PGD2 (which causes MCAS people to fall asleep-kinda like narcolepsy). Sometimes these mediators are released at the same time, so you've got a chemical making you sleepy, and one making you wide awake and paranoid. For me, this combination results in hallucinations (minor visual, like something moving in the corner of my eye, auditory, and smells [God the smell thing is awful and it sucks])

What do you normally eat, and is it difficult to make sure you get all the right nutrients and stuff that your body needs?

I eat a lot of fresh foods. I pretty much rely on fruits, vegetables, and organic grass fed chicken. I can also eat duck and quail eggs and do quite a bit. People with MCAS are typically iron, B12, C, and D deficient. I am all of the above, so I try to cook with a cast iron pan as much as possible to get my iron, I take B12 and C vitamins daily, and I try to sit by a window as much as possible (similar to Jaundice babies) to get some Vitamin D

Do you have EDS?

I don't think so. I'm more stiff than I am bendy, and I don't have the elastic skin thing. I do have collagen problems and take collagen daily, but aside from that I have not been tested for EDS or hEDS.

So is it just a Russian roulette on what's going to trigger you? Or do you have a set list of things you know are going to cause a severe reaction, mild reaction, etc.

I'd say it's more like Russian roulette but with trends. So I know soy and corn will ALWAYS cause a reaction. Both of those are always severe reactions. Things like bananas I know will always cause a reaction, but the type and severity of a reaction is somewhat random. Even foods that I deem safe, such as green cabbage, can quickly become not safe. I have another controversial condition called "Leaky Gut Syndrome" which basically makes it to where I become more and more allergic to foods the more and more I eat them. So I have to be very careful to make sure I rotate my safe foods.

Oh my. So what do you eat? What’s your favorite food?

I follow a low histamine diet! My favorite food is pumpkin, which, unfortunately contains histamine. My favorite low histamine foods as of late have been green cabbage, and turmeric and ginger tea

What do you do to keep your environment alergen free?

I have two HEPA+air filters that are constantly running. I keep the windows and doors closed as much as possible. I clean (wipe down every surface, vaccum every surface, wash all bed sheets, etc.) Once or twice a week. Every other week I deep clean, so the couch cushions get washed, pillows get washed, bathroom gets scrubbed, all filters are changed, etc. I use chemical, dye, and scent free shower products, cleaning products, and laundry products. I double or even triple filter every water that I drink, cook with, or bathe in.

That is surprisingly not much different from my cleaning habits. I was even thinking about getting HEPA air filters and UV lamps. I'm not allergic to anything or immunocompromised, just lazy and thought those two things might make the cleaning process easier

I would say that the one weird cleaning thing I have to do is dust the walls, especially if the pollen count was high recently. But yeah a lot of my cleaning habits are similar to people who are generally considered to be "neat and tidy". It definitely does get tedious after a while lol! I absolutely love my HEPA filters. The ones I have have lights on the top that change color to represent the air quality in the room, and then the fan speed either increases or decreases to match that quality. They were about $300 each, so kind of expensive but I think they're worth it even if you just have seasonal allergies or if you have pets.

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As a warning, people with chronic illnesses hate this question. But I will answer in an attempt to educate.

The simple answer: I didn't have a choice. I didn't opt to become ill or disabled. It simply happened, my choices are to either live with it, or kill myself. And I'm not ready to go yet. I have no desire to kill myself. I want to live life, and to see the beauty in everything, and live all the great experiences that everyone else gets to live, so I had to learn, adapt, and change my lifestyle so that I am able to live a happy life.

Edit: the original question has been deleted, but for those wondering, the question was along the lines of "how are you still alive?"