#Mast Cell Activation

[chronicallydragons]

anyone else ever wish they could lie down harder? Like, I'm already horizontal, but I need more horizontal. I need to be absorbed by the floor. I think that would fix me

[weatherwaxironboots]

It's me sitting in bed eating my last chocolate uncrustable as I google "diet for fixing mast cell activation"

I cannot live my life this itchy.

But can I give up sugar and carbs??????? I get to keep my cheese I think but goddamn

No more uncrustables for this sad itchy lady. 😢

[thebibliosphere]

tw: content under a cut for talking about calorie counting (in a positive way), restrictive medical diets, and MCAS 'remission.'

So it's been 5 months since I last saw the GI doctor who took me seriously regarding my mast cell dysfunction, and not only have I gained a LOT of foods back into my diet under his care without experiencing idiopathic anaphylaxis, but I've also managed to eat 2000 calories almost every day for the last 5 months.

Prior to his care, since 2020, I had been mostly surviving on a liquid diet with the odd bit of solid carbs and protein when I could handle it.

Which was better than the 2 things I could digest safely prior to 2019, which were oatmeal and filtered tap water toward the end when I was dying. But even after I recovered from that, any time I went over 700 calories a day in solid food, I'd be writhing in pain.

I still have days when the pain hits, and all I can manage is liquids, but those days are so much less, and thanks to being able to eat more foods, I can at least liquidate more nutrients to make sure I'm getting what I need.

Things will never be 100% healed. That's not the nature of this kind of immune disease. But they're better. I'm better. I'm still so scared to say any of this is in remission because MCAS is wildly unpredictable. But I'm so much better than I was.

And I'm going to go happy-cry and eat a gluten-free cupcake about it.

[98lindsey]

I was out with my family for my birthday at a restaurant when I started having an allergic reaction. So I pulled out my IV stuff to give myself something to stop it and my dad asks:

“Do you want to go in the bathroom and do that”

I laughed a little “um, not really”

I understand it’s a little strange for me to pull out needles and meds and everything in public, but the restaurant bathroom is the last place I want to be when setting up something to inject into my blood stream 😬

Can we normalize people having to regulate their bodies with medication in public please?

[thatchronicfeeling]

Medical Person: What are your symptoms? Disabled/Chronically Ill Person: This is a trap.

[stagegoose]

shout out to those of us chronically ill people who have stacks of rare diagnoses that took years or decades to dx. Shout out. to those of us in those categories who had earlier diagnoses questioned because of our other, at this point undiagnosed, rare illnesses.

To have a doctor look at something very concrete and telling of a certain diagnosis (for me, it was a muscle biopsy that showed a very obvious mitochondrial cytopathy) and go 'nah i don't think its actually this thing we have evidence of' because you also have another completely unrelated rare illness is gross and inexcusable.

If you are in this situation, i pray that things prevail for you. Remember that you know your body far better than any medical professional ever will, and that no matter what they say, you're not crazy for having inexplicable symptoms.

to deny the idea that someone can be doubly sick with three or more different rare illnesses when we know so little about genetics and all the different ways the human body can screw itself over is extremely and without a doubt idiotic. we all deserve better.

[gabessquishytum]

As a disabled/chronic illness person you're legally allowed to assign disabilities and chronic illnesses to any fictional character. In case you were wondering.

[kirby-the-gorb]

we are about an hour into rare disease day in my timezone! (it's always the last day of february, whether that's the 28th or the 29th.) the true prevalence of mast cell disorders is unknown, as they are often misdiagnosed or ignored. and mast cell activation syndrome, the most prevalent kind of mast cell disorder, only had diagnostic criteria laid out for the first time in 2010. so whether or not it's truly rare is really up in the air!

(personally I suspect it is just aggressively underdiagnosed but I'm not a research scientist or diagnostician right now. and even if it is rare, it's gonna be a lot less so than it was 5 years ago as certain respiratory infections are known to trigger it into visibility. that's what happened to me when I got mono at the end of 2015, further compounded when I got covid in 2022.)

all chronically ill people face a lot of hurdles when it comes to seeking diagnosis, accommodation, and treatment (all of which can be severely complicated by any intersecting marginalities), but rare diseases present a special challenge.

for example, I have an immune disorder. my immune system does not like being alive, my mast cells are way too jumpy and throw a tantrum over every little thing. you'd think an immunologist would be the one to treat me, right?

I've had 6 immunology referrals rejected in the past 9 months alone. multiple major immunology clinics in my major city tied to a major research university outright refuse to see patients with "mcas" written anywhere in their chart.

after 8 years of being debilitatingly ill, and suspecting it was immune mediated for 6, and getting it confirmed beyond a shadow of a doubt by the bone marrow biopsy last month, I will have my second ever appointment with an immunologist. another 2 1/2 months from now. the first immunologist lied to me about the reliability of the one available blood test, when I first came up with the hypothesis by myself 6 years ago, and forced me to abandon my (correct!!! now proven!!!) hypothesis for 3 entire years while we wandered around lost and got nowhere other than even more thorough process of elimination.

okay, well if my immune system is attacking me, maybe it's technically autoimmune? that's the rheumatologists instead of the immunologists, what do they have to say? dick all my dude, I don't have rheumatoid arthritis so they just shrug at me and go "idk, fibro? I don't know why you're here" and send me home with nothing. (I literally had a rheumatologist say to me, verbatim, "I don't know why you're here." buddy it's your job to read the chart and decide if I get seen or not, you tell me. at least he had a snazzy outfit.)

being chronically ill can be a terrible struggle no matter what, but a disease that is perceived as rare, accurate or not, adds a whole new layer of bullshit. (and of course there are much much rarer diseases out there, with even more hoops and dead ends and struggles and all-new layers of bullshit that even I don't have to deal with!)

anyway I'm having a shit time and using this awareness day as an excuse to productively bitch about it 👍

[lastoneout]

so we get to add medical adhesive to the list of things I am apparently mildly allergic/sensitive to alongside *checks notes* jalapeños, gabapentin, compazine, reglan, softsoap brand liquid hand soap, oats, ginseng, most deodorants, steroids, and the sun

[talkethtothehandeth]

If you wear strong fragrances in public I hate you ♥️

[melblink13]

Hi! I’m a chronically ill design student studying the experiences of people with chronic health conditions interacting with primary care If anyone would like to take my survey that would be great!

[imaginarylungfish]

i have a history of chronic illness, so i've been to many doctors. but you know the one i hate the most (besides the obgyn)? dermatologists.

i'm an afab genderfluid person with mcas. yes, i have acne. but i don't go to the dermatologist for that. i go for other things. but you know what they always bring up? acne treatment. no, thank you.

why do people think i must rid myself of my acne? i literally don't care about it. in fact, it kinda makes me, me.

my acne causes no harm to me. it doesn't hurt. it's just there. treating it could cause me harm (ie. a flare up), so i don't want to risk it.

but society seems to be offended by acne, especially on afab people.

idk this was just a rant. but like i hate beauty standards ughhhh

[98lindsey]

My sister: “So are you just not going to do anything ever again?” (Asking in reference to me not joining them on a family trip.)

Me: “Um, maybe. That’s kind of what being disabled means.”

Like seriously. Being disabled is literally not being able to do everything able-bodied people do. Me not going on the trip was a necessity so I didn’t push my body too far and crash, not something I chose because I didn’t feel like going.

[wheelie-sick]

What is Idiopathic Mast Cell Activation Syndrome?

Idiopathic Mast cell activation syndrome (MCAS) is one of several mast cell disorders. MCAS occurs when there are a normal number of mast cells in a person's body but they over-release mast cell mediators causing random allergic reactions in multiple systems of the body. MCAS is incredibly common being present in an estimated 17% of the population.

Symptoms

MCAS symptoms are incredibly varied and always occur in multiple systems of the body. Anaphylaxis is common.

[ID: A graphic labeled "Some common symptoms of Mast Cell Disease" A graphic of a person standing in the center with multiple organs visible is shown. Around the person are lines pointing to specific areas of the body labeled with the body system and symptoms. Clockwise these read "Neurological headache, brain fog, cognitive dysfunction, anxiety, depression Cutaneous (Skin) flushing of the face/neck/chest, hives, skin rashes, itching with or without rash Cardiovascular light-heartedness, syncope (fainting), rapid heart rate, chest pain, low blood pressure, high blood pressure at the start of a reaction, blood pressure instability Gynecological uterine cramps, bleeding Urinary bladder irritability, frequent voiding Systemic and/or organ specific Anaphylaxis angioedema (swelling) Skeletal bone/muscle pain, osteopenia, osteoporosis Gastrointestinal diarrhea, nausea, vomiting, abdominal pain, bloating, gastroesophageal reflux disease (GERD) Ear/Nose/Throat/Respiratory nasal itching and congestion, throat itching and swelling, wheezing, shortness of breath and more" In the bottom left corner "Symptoms can be sudden and unpredictable in onset learn more at tmsforacure.org"]

MCAS symptoms are specifically not allergies. the reactions may look like allergies but the two are not the same and MCAS is not a condition meaning "many allergies" While MCAS can have some consistent triggers one of the defining features of the disease is that reactions are random and happen unpredictably.

Anaphylactic shock is not a requirement for diagnosis.

Diagnosis

MCAS is diagnosed by an immunologist. It is in part a diagnosis of exclusion and requires ruling out both allergies and systemic mastocytosis as well as other conditions such as certain types of tumors.

Diagnostic criteria for MCAS is debated. Some immunologists follow the symptom-based diagnosis approach in which case the diagnostic criteria are:

Recurring and severe anaphylactic-like episodes that involve more than one organ system

and

Positive response to mast cell stabilizing or mediator medications anaphylaxis-type symptoms

Others follow diagnostic criteria based on laboratory findings. In this case the diagnostic criteria are:

Episodic symptoms consistent with mast cell mediator release affecting two or more organ systems evidenced as follows:

Skin: urticaria, angioedema, flushing

Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping

Cardiovascular: hypotensive syncope or near syncope, tachycardia

Respiratory: wheezing

Naso-ocular: conjunctival injection, pruritus, nasal stuffiness

and

A decrease in the frequency or severity; or resolution of symptoms with anti-mediator therapy: H1 and H2 histamine receptor antagonists, anti-leukotriene medications (cysLT receptor blockers or 5-LO inhibitor), or mast cell stabilizers (cromolyn sodium)

and

Evidence of an elevation in a validated urinary or serum marker of mast cell activation: Documentation of elevation of the marker above the patient’s baseline during a symptomatic period on at least two occasions; or if baseline tryptase levels are persistently >15ng, documentation of elevation of the tryptase above baseline on one occasion. Total serum tryptase is recommended as the markers of choice; less specific (also from basophils) 24 hour urine histamine metabolites, or 11-beta-prostaglandin F2.

and

Primary (clonal) and secondary disorders of mast cell activation ruled out.

These are not all proposed diagnostic criteria as the subject is heavily debated. Generally, a laboratory-confirmed MCAS diagnosis is considered more legitimate.

Treatment

MCAS is a very treatable condition. Generally treatment follows a path from antihistamines -> mast cell mediators -> biologics.

Epipens are given to MCAS patients with a history of anaphylaxis.

Antihistamines are divided into 2 categories: H1 antagonists and H2 antagonists. These categories are determined based on the histamine receptor each one targets.

H1 antagonists mostly deal with systemic and cutaneous symptoms. H1 antagonists are also further divided into first and second generation antihistamines. first generation antihistamines include diphenhydramine (Benadryl) and Hydroxyzine. These tend to cause drowsiness. With second generation H1 antagonists cause fewer side effects and include drugs like loratadine (Claritin) and cetirizine (Zyrtec)

H2 antagonists primarily affect the gastrointestinal tract and include medications like famotidine (pepcid)

Typically when treating MCAS a person will be put on both a second generation H1 antagonist and an H2 antagonist.

When antihistamines do not treat symptoms well enough the next step is a mast cell mediator. The most common mast cell mediator is cromolyn sodium which is available by prescription only. (this is technically available OTC but it is at 1/50th the dose used for MCAS) Mast cell mediators work by preventing the degranulation of mast cells in the first place.

When both antihistamines and mast cell mediators are insufficient someone with MCAS might be prescribed a biologic such as Xolair to treat their remaining symptoms.

Sources:

American Academy of Allergy, Asthma, and Immunology

Mast Cell Hope

Mast Cell Activation Syndrome: Proposed Diagnostic Criteria

[tea-and-spoons]

If you made a mistake (or two or five or hundreds) in your medical care, you are still a good person. You still deserve care, you still deserve to feel better 💙

[thescrappyraccoon]

Image description: Drawing of female presenting person with title “Anatomy of This* Spoonie.” The woman’s body is covered with different images representing the many symptoms she experiences. Caption at the bottom of image says “*This spoonie is Skye Harmon, a woman with Ehlers-Danlos sunrooms, rheumatoid arthritis, orthostatic and heart intolerance, mast cell activation, and fibromyalgia. It is not necessarily the experience of any other chronically ill humans.”