According to an interview published in People magazine, Boston native Carolyn Cray was diagnosed with food allergies when she was 2 years old. She had been eating crackers containing nuts when her throat began to close.
Cray was rushed to the hospital, where she was diagnosed with a number of food allergies, including peanuts, tree nuts, sesame, seafood, and various fruits. Over the course of her childhood, she outgrew many of those allergies but remained vigilant about avoiding cross-contact.
Cray is now 24, but at 18, her world would change drastically. After checking the ingredients, she ate an ice cream sandwich and immediately experienced the telltale signs of anaphylaxis.
She said:
It felt like all the blood was rushing out of my head, and I got super tunnel vision. So I basically thought, oh my God, I think I’m having an anaphylactic reaction.
She immediately administered her epinephrine auto-injector and rushed to the ER where she was released six hours later.
Over the next six months, Cray experienced a number of successive reactions, ultimately landing in the ICU at Boston’s Children’s Hospital in September 2017. At the time, doctors prescribed her immunosuppressants and told her her reactions would eventually subside in a few months. But that did not happen.
Over time, the reactions became so severe that Cray was forced to move back home from her college dorm. Her mom took it upon herself to drive her back and forth — a 45-minute trip each way — because she felt too weak to drive herself.
She said:
I just felt like a ghost. I felt like nobody would really notice if I was there or not. I was really, really depressed. I didn’t want to do school anymore.
In May 2018, doctors at Brigham and Women’s Hospital finally issued a definitive diagnosis: Cray was suffering from mast cell activation syndrome (MCAS).
The Genetic and Rare Diseases Information Center (GARD) summarizes MCAS as follows:
Mast cell activation syndrome (MCAS) causes a person to have repeated severe allergy symptoms affecting several body systems. In MCAS, mast cells mistakenly release too many chemical agents, resulting in symptoms in the skin, gastrointestinal tract, heart, respiratory, and neurologic systems. Mast cells are present throughout most of our bodies and secrete different chemicals during allergic reactions. Symptoms include episodes of abdominal pain, cramping, diarrhea, flushing, itching, wheezing, coughing, lightheadedness and rapid pulse and low blood pressure. Symptoms can start at any age, but usually begin in adulthood. The cause of MCAS is unknown. Diagnosis is based on the symptoms, clinical exam, and specific laboratory testing. Other conditions may need to be excluded before MCAS can be diagnosed.
There is currently no cure for MCAS, but symptoms can be managed with antihistamines and a strict low-histamine diet that avoids such foods as hard cheese, fish, spinach, sausage, and alcohol.
Cray said:
The last six or seven years have been a bit of a roller coaster. A few years ago, I was able to eat basically all foods except for those main allergens, like peanuts, tree nuts, mustard, sesame.
But the last few years, it’s been really, really difficult.
Her difficulties forced her to take medical leave during her junior year at college.
To help her manage her symptoms, Cray adopted an extremely restricted diet consisting of just two foods: oats and a hypoallergenic, amino acid-based formula for people ages 1 and older who have food allergies or gastrointestinal disorders.
With this diet, Cray was eventually able to complete her junior year remotely and moved back to campus for her senior year.
She is currently working with a naturopath who will begin helping her slowly reintroduce foods into her diet, starting with broccoli, boiled chicken, and carrots.
Despite her difficulties, she still remains patient:
It would make sense to crave things and miss food and be sick of oatmeal. But my survival brain kicks in, reminding me of the ramifications of symptoms, and frankly, it’s not worth it.
