How oats and formula became one woman's lifeline against life-threatening allergies

Imagine being told the only way to survive against your life-threating allergies is by eating just two specific foods for the rest of your life. For Tik Toker Caroline Cray, this unbelievable situation became her reality due to a fight against an exceptionally rare and serious illness called mast cell activation syndrome (MCAS). At only 24 years old, Caroline's told PEOPLE about her scary experience battling this disease.

From an extremely young age, Caroline dealt with severe food allergies that made her daily life incredibly hard. Even before she turned two years old, Caroline developed dangerous allergic reactions to peanuts, tree nuts, sesame seeds, mustard, kiwi fruit, seafood, and various other fruits. While she was eventually able to slowly reintroduce and eat some of those foods again as she got a bit older, everything changed devastatingly during the very first week of her college in 2017. 

Caroline thought she was purchasing a safe ice cream sandwich delicacy from a food truck after carefully reading the ingredient list. But she ended up with a terrible, potentially fatal anaphylactic shock after just two bites, though. It did not take long for her throat to shut entirely, preventing her from breathing. Her survival of this terrifying allergic response required an emergency ambulance ride to the hospital.

Despite receiving emergency hospital treatment and being put on strong medications by doctors, Caroline's condition refused to get any better in the following months. The extreme allergic reactions and episodes simply continued to occur, growing more and more deadly each time, rather than getting better. With her allergies becoming more severe and potentially fatal, Caroline was forced to drop out of college and return home to live with her parents. Caroline's loving mother took up the task of being her personal driver and caregiver because she was too frail, constantly unwell, and dizzy to drive or go any place alone. Day after day, her mom drove Caroline to important doctor appointments, medication pick-ups, treatments, and anywhere else she needed to go just to survive.

"I just felt like a ghost...like nobody would really notice or care if I was there or not," Caroline told PEOPLE that recalls those dark times, reflecting on the profound isolation, loneliness, and overwhelming despair she experienced during this horrifying chapter of her life. The mental health toll and drain of her rare illness was just as crippling as the constant physical symptoms she battled every day.

In May 2018, following numerous arduous months of dread, anxiety, and anguish, medical professionals were finally able to identify and diagnose mast cell activation syndrome, the horrifying ailment that had befallen the now 24-year-old. The body's mast cells become defective as a result of this chronic, extremely serious condition, dangerously producing an excessive amount of inflammatory compounds and chemical triggers. This constant mast cell activation leads to recurrent life-threatening anaphylactic reactions and allergic attacks that can happen anytime without warning.

Treating and managing MCAS requires patients to follow an extremely restrictive low-histamine diet that completely eliminates all foods, drinks, and items that could possibly trigger the mast cells to become activated and cause an allergic reaction. Caroline has to cut out common foods and ingredients like eggs, meat, fish, dairy products, nuts, alcohol, and even avocados from her diet. As her condition rapidly worsened throughout 2018 and 2019, her personal list of "safe foods"  that didn't make her violently ill dwindled all the way down to only two lone options that she could consume without risk - plain oats and a hypoallergenic nutrition formula that tasted like bland, flavorless vanilla protein shakes.  

Imagine being limited to only those two bland, boring food items every single day, week after week, month after month, year after year, with absolutely no variety or change. For a grueling period of five long years between the ages 19 and 24, Caroline persevered and pushed through this restrictive, monotonous diet with remarkable determination, resilience, grit, and inner strength that most of us could never fathom.

A much-needed lifeline and ray of hope finally emerged one day when Caroline decided to openly share and document her battle with the cell activation syndrome by posting a telling video about her extreme dietary limitations on the TikTok social media app. To her surprise and relief, the video unexpectedly exploded and quickly went viral online across the internet. Suddenly, Caroline found herself connecting with an entire community and support network of others from around the world who were also battling and fighting against mast cell activation syndrome themselves. These new online connections started suggesting creative ways and twists for Caroline to use her limited two safe ingredients, like making oat-based pasta noodles, pancakes, breads, and even dairy-free ice cream treats. These novel recipe ideas brought some slices of variety, joy, and excitement back into Caroline's previously highly restricted diet.

These days, Caroline is slowly and very carefully attempting to reintroduce some new foods into her system under extremely close medical supervision from her doctors and nutritionists. So far, she has started with bland items like broccoli and plain boiled chicken in moderation to gauge her body's response. But she remains extremely cautious and hyper-aware of potentially severe allergic consequences at all times, telling PEOPLE, "My survival instincts kick in constantly, reminding me of the grave dangers of inadvertently triggering another violent allergic reaction just from eating the wrong thing".

Caroline Cray's powerful and eye-opening personal story pulls back the curtain on the harsh daily realities of living with the rare mast cell activation syndrome, shining a much-needed light on this often misunderstood, mistaken, and overlooked condition. Her incredible courage in persevering and managing her extremely complex health situation while being so open about intimately sharing the details of her struggles has helped raise widespread awareness. Her inspirational journey has provided hope, perseverance, and motivation for others battling rare diseases, chronic illnesses, and life-threatening conditions.

In today's modern world, where food is such an obsession and an inescapable part of our culture and social fabric, the profound level of sacrifices Caroline has had to make simply to preserve her own well-being and survival cannot be overstated. Having to permanently give up eating almost every single food and ingredient except two bland items is absolutely unfathomable for most people. Yet Caroline's perseverance through such extreme and overwhelming adversity stands as a powerful testament to the incredible strength, fortitude, and resilience of the human spirit when confronting life's biggest challenges head-on. Her ability to keep going, adapt, and find moments of joy along the way despite it all is truly inspiring on a deep level.