Thread by @UntoNuggan

[food]

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

#MCAS

mastattack.org/2017/10/mastat…

[food]

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)

[food]

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

mastattack.org/2014/05/mast-c…

[food]

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

[food]

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"

#MCAS

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

#MCAS

[food]

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"

[food]

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

#MCAS

[food]

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

mastattack.org/2016/04/the-de…

[food]

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"

#MCAS

[food]

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"

#MCAS

[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

#MCAS

[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"

#MCAS

[ableism]

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

[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

#ableism

External Tweet loading...
If nothing shows, it may have been deleted
by @UntoNuggan view original on Twitter

[ableism]

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

🌈