Being diagnosed with MCAS syndrome: "I am allergic to everything"

I was fourteen at volleyball camp when my pelvis started to itch. I couldn’t focus on the game. The itching became violent. I ran to the bathroom and locked myself in a stall.

I was wearing new volleyball shorts with built-in underwear, and I wondered if the new shorts were somehow causing an allergic reaction, so I pulled them down to my ankles, but the rash only spread to my thighs and turned into hives. Soon my forearms were on fire and splotchy, and my tongue felt huge. I noticed a tingly sensation in my throat that felt tight, and so did my eyelids, and everything burned. Nothing brought no relief, no matter how hard I itched my skin or scratched my tongue with my teeth.

I pulled my shorts up and ran to the bathroom mirror. My lips were three sizes too big. My vision was blurry, and my eyelids were starting to swell. My face was not my face. My skin was like a red balloon. I hadn’t eaten anything except pistachios. But that wasn’t new. I ate pistachios every day. I didn’t know what was happening. I stumbled out of the bathroom and onto the court. I walked out, embarrassed, trying not to disturb the game.

“Coach,” I said, tapping her shoulder. “I think I’m having some sort of reaction—”

“Oh my god, your face!” someone shouted from the court. 

Everyone stopped playing. Fifty girls were staring at me. When the coach turned around and saw me, she gasped. 

That’s when I threw up everywhere. I felt myself falling. Everything went black. 

When I regained consciousness, I was in a wheelchair with an IV in my arm and could hardly breathe. I remember clutching my throat. It was closing. I could barely swallow. I couldn’t see because my eyes had swelled shut.

“My baby, my baby!” I heard my mom cry. 

“Save my baby!”

Shit, I remember thinking. Mom stopped embarrassing me, but my eyes were swollen shut, so she couldn’t see me rolling them. 

That was my first allergic reaction to red ants and my first anaphylaxis episode. At first, I thought it was an isolated event. I thought I was allergic to pistachios, and that’s it. But it happened again at seventeen, this time to red ant bites.

I was at a football game in Florida during my senior year of high school when at six red ants bit me on the ankle. I didn’t have my epi-pen. I didn’t know I was allergic to ants back then. 

That one was a close call; I almost didn’t make it to the hospital in time. I was at boarding school that year, and my friend’s dad drove me to the ER, but no one was taking my allergies seriously. On the way to the hospital in the car, my friend’s dad asked, “Do you mind if we stop for take-out real quick?” They pulled into a McDonald’s before I could say no. My throat was starting to swell.

The third time was a weird one: anaphylaxis-induced exercise. I was jogging outside the summer I was eighteen, and all of a sudden, the symptoms of an allergic reaction began again. I ran home as fast as I could. I wasn’t sure if I’d make it. 

Everything itched. I scratched my arms and legs as I sprinted the half-mile home. By the time I ran down the hill through the woods to our house, my face and body were covered in hives, and my tongue was on fire. My mom gave me six Benadryl and drove me to the hospital. After that, no more cardio.

Slowly, over a period of six or seven years, the allergic reactions have grown more severe. I feel like I am allergic to everything.

Now I’m twenty-three, and the list of things my body is allergic to includes bee stings, gluten, peanuts, pistachios, cashews, mushrooms, rice, corn, potatoes, grass, dairy, soy, coconut, tomatoes, vinegar, all spices, all preservatives, artificial dyes, seafood, beans, almonds, dogs, cats, dust mites, apples, bananas… the list goes on.

I’m a senior at UNC-Chapel Hill. For breakfast, I eat blueberries. For lunch, I have plain chicken on plain lettuce with some cucumbers or carrots. For dinner, I eat more chicken. Dessert is dried mangos; well, until my last month (I had an anaphylactic reaction, so no more dried fruit for me!) Also, no more meat. So I can eat four foods now: blueberries, cucumbers, carrots, and chicken.

I can’t keep on weight. That’s a problem. It’s hard to gain weight on the foods I can eat. Sometimes I itch for no good reason. I have gone into spontaneous anaphylaxis. Yes, this is a real thing. You can have a life-threatening reaction to nothing at all.

I never know if I’ll end up in the hospital. I take Benadryl, Zantac, and Zyrtec every day, just in case. The good thing is that if I become allergic to all foods, I could still survive with a feeding tube.

I’ve been to allergists, cardiologists, and internal medicine doctors. I’ve had many skin-prick and blood tests and heard theories about gluten and GMOs. I have received no conclusive answers. The best they can give me is, “Always carry your epi-pen.”

Read more: How to ask someone about their health condition

Three months ago, in April, it happened again. It was a Friday night. I ate steak at 8 pm. By 9 o’clock, I was doubled over in pain and itching everywhere. I took four Benadryl to try and stop my allergic reaction to steak. 

The stomach pain felt like I was having appendicitis. I broke out in cold sweats, then came extreme nausea. I ran to the bathroom. I couldn’t stand up straight. I called my boyfriend, Adam. “Something’s not right,” I said. "I think I am having an allergic reaction to steak."

Adam was downtown drunk on a party bus. “Do you need me?” he asked. “Should I stop the driver and come to you?”

“No,” I told him.“I don’t know.” I hung up the phone and dialed my mom. By that point, I was itchy all over, and my throat felt tight.

“Madi?” my mom said.“What’s up?” 

I said again, “Something’s not right.”

“Madi, what is it? Are you having an allergic reaction?”

The pain in my lower abdomen felt like an organ had burst. I could hardly talk.

“Madi,” she said, “Do you have your epi-pen?”

I felt like I was going to fall over. There was a thick layer of sweat coating my skin. 

“I’ll call you back,” I said to my mom because I was beginning to worry that my epi-pens were expired. But before I could find one, I had to call Adam. 

Sitting at the toilet, gagging, lightheaded, and nauseous, I called Adam again.“I’m itchy,” I said. “I need help.”

“What’s happening?” asked Adam. “Should I call 9-11?”

But I couldn’t talk. My insides were rumbling, and I felt intense lower abdominal pain. I could tell I was about to vomit. 

“I’m getting off the bus,” Adam said. “I’m coming to you.”

But I couldn’t respond. I had to put the phone down on the floor. Something bad was about to happen. I get an impending feeling of doom during all of my allergic reactions. 

I thought something was not right. Quickly I sat on the toilet. I picked up the trash can. That’s when I had explosive diarrhea and projectile vomiting at the same time. Adam stayed on the line.

Meanwhile, I was also losing consciousness, itching, and dripping in sweat. It looked like I’d just jumped into a pool with my clothes on. 

Once I stopped puking and could talk again, barely conscious, I said to the phone, “Adam, I’m not okay. Call 9-11. I am having a severe allergic reaction.”

And he did. We hung up. A minute or so later, I received a call from the police. 

“Can you verify your name and date of birth?” 

I almost laughed. I could hardly speak.“Send someone,” I said. “About–pass out–“

“An ambulance is en route,” the dispatch woman said. “Madison, can you tell me, is the door to your house unlocked?”

“No,” I said.

“Listen,” she said, “I need you to go unlock the front door now so the paramedics can come in.”

And I said, “I don’t think– can’t move–“

“Ma’am. You need to unlock the front door now, or the paramedics won’t be able to help you.”

I was naked on the floor, covered in vomit, sweat, and my own shit. There was a bathrobe a few feet away. I reached for it and covered myself. This won’t last forever; I kept thinking. You feel bad now, but this won’t last forever. You’ll survive, or you’ll die. This won’t last forever. And this thought reassured me.

I was able to get up and unlock the door. It took all my concentration to stand up. Stand, I thought. Walk. My vision went black. Two steps. Four. I remember the phone was too heavy to hold. I kept dropping it. I could barely walk the abdominal pain was so bad.

I made it into the hallway. I stumbled to the front door. I unlocked it. 

“Now,” the dispatcher said, “Is anyone else in the house with you?”

I said, “Dunno.”She said, “Go look.”

I walked back through the hallway. Cori’s bedroom light was off, but Riley’s was on. 

“Riley!” I tried to yell. It sounded like a slight moan. I was embarrassed by how I smelled, but I knew I needed help.

“Riley!” I said again. I banged on her door.

“Yeah?” she said, opening up.

“Need–help,” I said, slurring my words. I handed her the phone and struggled to close my bathrobe.

“Hello?” Riley said into the phone. “Okay. Yes. She’s still conscious. Madison?” Riley said, “where do you keep your epi-pens?”

I pointed to my dresser inside my bedroom.

“Have you used one before?” Riley asked, picking up the yellow box and opening the tester. I shook my head. “Do you want me to do it?” she said, “or can you?”

And I said, “Me,” because I was half-naked, and I hadn’t had time to clean up yet and didn’t want her to see me like that.

I practiced with the tester epi-pen. It took more force than I’d expected. The first time I swung the tester against my thigh, it didn’t click because I didn’t do it hard enough. I practiced again with the tester and used enough pressure this time. It made a click. Then I picked up the real thing and jammed it into my thigh.

By the time the paramedics arrived fifteen minutes later, my allergic reaction symptoms had subsided; I looked much better and wasn’t itching anymore. The epi overwhelmed my system, causing uncontrollable shakes. My legs were bouncing all over the place.

Adam arrived at the same time as the paramedics. He was drunk and rubbing my back as I cried on the bed. 

He joked, “You know; if you wanted to see me that bad, you only had to ask.” I laughed, and the paramedics asked why a girl my age had so many medicines. I rattled off a few of my allergies. Adam said, “It’s easier for her to say what she’s not allergic to. She is allergic to everything” He kissed me on the cheek and rode with me in the ambulance.

 Read more: Kissing with allergies

Sarah calls it M-CAS on the phone. I don’t like the acronym. It sounds cute or casual. I prefer the full name: Mast Cell Activation Syndrome.

My mom met Sarah’s mom at church one day. It was a chance encounter. They began talking, and Sarah shares all my allergic reaction symptoms. She’s been to the ER sixty times in the past year.

“I can be walking through a parking lot,” Sarah says, “smell cigarette smoke, and go into anaphylaxis shock right there on the street.”

Sarah has MCAS, Mast Cell Activation Syndrome. 

MCAS is a rare disease that basically means you’re allergic to everything. In other words, in MCAS patients, mast cells release too much histamine. And the mast cells release histamine when they’re not supposed to. It turns out I have MCAS too. It’s a new diagnosis, added in 2007, and most doctors don’t know about it. 

Half of the doctors who know about it don’t believe it’s real, like how people would scoff at Fibromyalgia or Irritable Bowel Syndrome before these diagnoses were accepted as a real thing. As you might expect, this makes receiving treatment difficult and living with MCAS invalidating. 

After listening to Sarah, I repeatedly asked her and myself, ‘do I have Mast Cell Activation Syndrome?’

Sarah texts me from the ER. She had a chipmunk bite and needs rabies vaccines, and it turns out she’s allergic to the vaccines. She requires four of them. 

I’m in the ER, too, because of yet another allergic reaction to ant bites. We joke about the hospital being our second home. It’s only funny because it makes us feel better.

She recommends Epsom salt baths. “You can add lavender,” she says, “But some people react to that,” I say, “Knowing my body, I’ll play it safe.” Sarah laughs.“‘Knowing my body,'” she says. “That’s something I always say.”

For more information on how do you get diagnosed with MCAS, keep reading! 

How do you get diagnosed with MCAS?

To get diagnosed with MCAS, you typically need to follow a diagnostic process involving medical professionals. Here are the general steps involved in obtaining a diagnosis for MCAS:

1. Consultation with a Healthcare Provider: Begin by scheduling an appointment with a knowledgeable healthcare professional, such as an allergist, immunologist, or specialist in mast cell disorders. Finding a healthcare provider experienced in diagnosing and managing MCAS is crucial.

2. Medical History Assessment: The healthcare provider will review your medical history in detail during your appointment. They will inquire about your symptoms, their frequency and duration, and any triggers or patterns you may have noticed. It is essential to provide comprehensive information about your symptoms and how they affect your daily life.

3. Physical Examination: The healthcare provider will conduct a physical examination, which may involve assessing your skin, lungs, and other relevant areas to check for signs of allergic or inflammatory reactions.

4. Symptom Evaluation: MCAS can present with a wide range of symptoms affecting various body systems, including skin, gastrointestinal, respiratory, cardiovascular, and neurological symptoms. The healthcare provider will evaluate your symptoms and their association with potential mast cell activation, comparing them to known criteria for MCAS.

5. Laboratory Tests: The healthcare provider may order specific laboratory tests to support the diagnosis. These tests can include measuring levels of certain chemicals and markers associated with mast cell activation, such as tryptase, histamine, prostaglandins, etc. However, it's important to note that normal laboratory results don't rule out MCAS, as levels can fluctuate, and other factors may be at play.

6. Trigger Identification: Identifying triggers is essential to diagnosing MCAS. Your healthcare provider may ask you to keep a detailed record of your symptoms, including when they occur and any potential triggers or exacerbating factors. This information can help establish a pattern and identify triggers associated with mast cell activation.

7. Additional Tests: In some cases, additional tests may be required to rule out other potential causes of your symptoms. Depending on your circumstances, these can include specific allergen testing, imaging studies, or other specialized tests.

It's important to note that MCAS is a complex condition, and the diagnostic process may vary based on individual cases. Working closely with an experienced healthcare provider knowledgeable about mast cell disorders can help ensure an accurate diagnosis and appropriate management plan.

The official website of The Mastocytosis Society provides comprehensive information about MCAS, including diagnostic criteria and management guidelines. You can visit their website at https://tmsforacure.org/.