Sparrow Profile picture
Jun 17, 2018 22 tweets 9 min read Twitter logo Read on Twitter

A really weird thing about #MCAS is that I can eat a food and be fine, but if I eat leftovers of the exact same food a day or two later I'm ... not fine

Before I knew abt MCAS, I thought I was just immunosuppressed and reacting to bacteria other people could tolerate
This is sort of true, actually

I was probably reacting to the products of microbes breaking down food

More on the science of that here


When I have a bad MCAS reaction, it looks a LOT like food poisoning

I won't go into the gory details, but at my worst I need IV fluids and prescription strength anti-nausea meds (which happen to also treat anaphylaxis like symptom)

It was always hard to tell *why* I suddenly got "food poisoning"

Especially because other people could eat the same food and be ok

But certain family members *also* reacted to the same foods

Surprise, mast cell diseases often run in families…

I mention all this for a lot of reasons

It's hard to find providers knowledgeable about #MCAS

I could have saved myself a lot of pain and suffering, and also stopped throwing out food which was perfectly safe... just not for me
Also, as I mentioned earlier, it's hard to know that you should be looking for an underlying condition

When the symptoms you experience are "normal" in your family

Because maybe a lot of people also have this weird set of symptoms

This is true of #MCAS and #EDS

These issues are so common in my immediate family (and again, I don't know for sure who else has mast cell issues but I have suspicions)

That it's my half siblings who are the "weird ones" with "iron stomachs"

My partner has "a good immune system"

It's important to remember that #MCAS wasn't officially recognized by the WHO until 2007

So we literally had no way of explaining why I mysteriously kept being the only one with "food poisoning"

Other than "something something immunosuppression"
Since figuring out that I have #MCAS with the help of my GP and also educational threads like this

I've been able to avoid the emergency level flare ups

Because I can recognize what is happening and treat it early with antihistamine etc

And avoid triggers when possible
[food, ableism]

I know there are a lot of jokes floating around about people "making up" or exaggerating their food allergies / intolerances

And I'll admit, when I first read about #MCAS, it sounded made up

But just because you don't understand something doesn't mean it's fake
[food, ableism]

My two huge food access needs are "no leftovers unless they're frozen" and "nothing fermented"

But telling people "actually, I can't eat vinegar it's fermented" is hard because it totally sounds made up

Again, there is actual science to back this


I don't have the energy to personally educate every person I interact with on the science of #MCAS

My family and friends are still learning, as am I

But if someone tells you a weird rare food allergy: consider believing them, not assuming it's "made up"

If you work in food service or even are just inviting a friend out for a meal

It really makes a HUGE difference when people don't interrogate me or roll their eyes at my food intolerances

Even if they don't fully understand them


It also takes time to figure out what your particular food triggers are with #MCAS

Literally months

Sometimes "can I eat this food" at this temperature after exercising…

I'm lucky, because I've had a lot of support from friends and family asking where I can safely eat or what I can eat

It's hard when the answer is "I honestly don't know yet, because I'm still figuring it out"


I *SO* appreciate the people who bothed asked about my food access needs

And accepted "I don't know yet, but I will keep you posted" as an answer

Or "it depends"

[food, ableism]

I know a common "joke" about food intolerances is "if you're so allergic why did you eat it yesterday?"

Well, that is LITERALLY ME because if it's leftover food, it stops being safe because of histamine content

Again, actual science

[food, ableism]

So please

Believe that I am the expert in my experiences, even if I'm still on a steep learning cliff about food access needs

If someone says they can't eat something: believe them

You don't have to know why, or police if it's "real" or "fake"


The whole idea that you can -- or even should -- spot a "fake disability" is part of what underpins ableism

Ambulatory wheelchair users in particular deal with this A Lot

#disability #ableism


Spotting "disability fakers" is honestly just a way of policing other peoples' bodies

Don't self appoint yourself as The Arbiter of Disability or The Disability Police



Also, a really concrete and good form of allyship for #disability solidarity

Is if your friends joke around about someone's "fake allergies" or "making [illness] up for attention"

Kindly help educate them on why it's not their job to be the disability police
If you are the kind of person who would fight to support someone's right to choose abortion

Please also support my right to decide what I put in or on my body in terms of food access needs

It is really that simple


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More from @UntoNuggan

Jul 28, 2018
I mean if exams are in blue books and hand written, and people taking notes on laptops and other accessible technology have trouble writing by hand, then this is ZERO SURPRISE but I bet @Lollardfish is right it's time for able academics to yell about laptop bans
"Oh but students who have trouble writing by hand can get accommodations via disability services--"

Did you know that accommodations require a doctor's note

And not everyone can afford a doctor

Also some professors are actively hostile to disabled students
I had this one professor who had an "absolutely no laptops" rule and i presented my handy note from disability services

But it was a tiny seminar

I was the only one using a laptop

My classmates asked questions about why I was exempt

It was awkward af

Laptop bans are bad
Read 24 tweets
Jul 23, 2018
Getting really tired of this thing where a marginalized person says "this will harm my community" and people say "you're exaggerating that hasn't happened"

then like a week later the thing happens. The same doubters are all WHO COULD HAVE PREDICTED THIS CALAMITY

The good thing is once you spot the pattern it's easier not to become one of those people WHO COULDN'T HAVE PREDICTED THIS CALAMITY because they didn't listen to / believe marginalized people.
It's really easy to personally break this cycle. Ready?

1. If a marginalized person says a thing will harm their community, believe them.

2. Signal boost and see if anyone suggests ways to help

Yes it is that simple
Read 11 tweets
Jul 18, 2018
Since it was apparently news to a lot of people that straws are used for accessibility (DESIGNED FOR IT, even)

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Also for d/Deaf people who want to test the doneness of bread but can't tap it to check if it "sounds hollow"
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These can be an access tool for those with back problems, chronic pain, coordination issues...
Read 27 tweets
Jul 13, 2018
I need environmentalists to hear that when they say "some sacrifice is necessary" to save the planet

& they're talking about *tools disabled people use to drink*

What I hear is "it's okay if you dehydrate if it's for the greater good"

I hear eugenics. 🙃

If you ASK disabled people, we could maybe work together on lifehacks to save the planet that don't limit our access to hydration.

Read 13 tweets
Jul 10, 2018
[Food, dietary restrictions]

Working on a mind map of my #MCAS triggers

This is part of the fermented/Aged Food branch. One intolerance has a cascade effect on other foods.
[food, dietary restrictions]

This mind map thing is really helping me process some feels and I think also it's less "here's my huge list of food intolerances" more "a few categories that have many sub categories"

Which is helping ease my internalized ableism tbh
[Food, dietary restrictions]

I know there's a lot of overlap with mast cell triggers, so in case this helps anyone here's my current mind map of #MCAS triggers

Help with captioning is appreciated.
Read 12 tweets
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In case you are also chronically ill and planning for potential power outages or heat waves, here are some things I do or am considering doing for copes

Hopefully this will help someone else
It sounds weird but this dog pad is pressure activated cooling power. It requires no electricity and is reusable. (You can also make it RLY cold in the freezer.)

There are big dog sizes that work for my entire body…
Consider filling a bathtub or bucket/tub with cool water. Dip your feet or entire body in to lower your body temperature.
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