Another challenge: There’s no known cure for MCAS, though pinpointing and avoiding triggers that may push your mast cells into overdrive and taking medications to chill them out can help. Read on to find everything you need to know about the condition, including how it typically shows up and is diagnosed, and what a care plan might look like.
What is MCAS?
Technically, there are three types of MCAS. In the case of primary MCAS (a.k.a. mastocytosis), a genetic mutation causes your mast cells to clone themselves and proliferate, Cem Akin, MD, clinical professor of allergy and immunology at University of Michigan, tells SELF. Secondary MCAS is triggered by specific allergens, like foods, pet dander, or bee venom. But there’s also a third type, idiopathic MCAS, which doesn’t have a known cause, as in Dr. Barkoff’s case.
This mystery-cause form of MCAS has gained credence over the past several years as doctors have seen more cases that don’t fit the other two molds, Joshua Milner, MD, director of the Division of Pediatric Allergy, Immunology, and Rheumatology at Columbia University, tells SELF: “You have someone who goes into anaphylaxis more than once, and you can’t explain it [with an allergen], and you test them for mastocytosis, and it’s not that either.” So the only potential cause is one we don’t understand yet.
Sometimes MCAS seems to happen after a traumatic health event like an injury, illness, or surgery, Dr. Milner says. Take Dr. Barkoff’s run-in with strep. It’s not that the infection caused her mast cells to become chronically overzealous—but perhaps her immune system was depleted or somehow primed to be reactive, and the strep pushed it over the edge, she says.
A similar scenario happened to Caroline Cray, a healthcare recruiter and content creator with MCAS. She’d had severe food allergies since childhood, but after an anaphylactic reaction to nuts in her first year of college in 2017, she found herself in and out of the hospital on a near-weekly basis, her throat closing and her face puffing up in response to seemingly anything she ate, breathed, or touched. “I don’t even know how many EpiPens I took during that fall semester,” she tells SELF. When she was finally able to see a mast cell specialist and get diagnosed with the condition in 2018, the trickiest part to process, she says, was that she could react to a particular trigger—like a known allergen—or for no obvious reason at all.
What are the symptoms of MCAS?
One of the stickiest things about MCAS is the massive range of symptoms linked to it—which makes it easy for a doctor to mistake it for another condition or plop you in the mast-cell bucket preemptively while missing whatever else is at play. That’s why it’s also controversial; some experts think that MCAS is overdiagnosed, particularly when patients have a bunch of seemingly unrelated symptoms, and tests don’t add up. All the recent chatter about MCAS on social media—there are more than 130 million videos on #mcas and #mastcellactivation on TikTok and over 21,000 users in the r/MCAS subreddit—may also be leading some folks to wrongly self-diagnose, particularly if they’ve been long searching for answers. No one is sure exactly how many people have it—estimates range from less than 1% to as much as 17% of the population.
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