Navigating Adulthood with EoE
Growing up, I was able to eat anything and everything. I lived for Chinese dumplings and scallion pancakes, cheesy quesadillas, mint chocolate chip ice cream. And, I was known for having an insatiable (never-ending) appetite. While as a kid I had extensive environmental allergies and moderate-to-severe asthma, food allergies and other food-related conditions (think EoE) were not on my radar.
It wasn’t until my twenties that my food allergy journey began. A few months after finishing graduate school and moving to New York City, I developed a yeast allergy that nearly landed me in the hospital due to asthma complications. Little did I know that this was only the beginning of my reactions to food—over the next few years, I developed a gluten intolerance as well as an allergy to shellfish and mollusks.
While I cried many tears over the thought of never having an authentic NYC bagel ever again, after eliminating those foods from my diet, I felt so much better. I experienced so much more energy! I learned to adapt to my gluten-free lifestyle and other food restrictions. This opened me up to discovering new restaurants and bakeries that could accommodate my dietary needs. With my body responding so positively to the changes, I felt like I finally had my diet under control. However, eight years after developing my first food allergy, my already restricted diet flipped upside down once again.
One late September morning, I woke up and could barely eat or even drink water. Every sip or bite of food caused a searing pain in my chest. I knew something was really wrong when I could barely swallow; I lost twenty pounds in a month. Even walking was a challenge due to severe chest and stomach pain.
Luckily, my gastroenterologist was able to perform an endoscopy (putting a camera down my throat) to see what was causing my painful symptoms. Biopsies confirmed that I have eosinophilic esophagitis, a chronic allergic disease of the esophagus.
What is EoE?
Similar to many others who are also diagnosed with eosinophilic esophagitis (EoE), I had never heard of this disease, let alone knew how to pronounce it.
Since my doctor didn’t explain EoE to me in much detail after the diagnosis, I started to do my own research and through the American Partnership for Eosinophilic Disorders (APFED) and the CURED Foundation, discovered that EoE is a newly identified rare disease, impacting roughly 1 out of 2000 people in the United States. It is an immune-mediated allergic condition that causes inflammation in the esophagus. In other words, when someone with EoE is exposed to food or environmental allergens (personal triggers), eosinophils (a type of white blood cell) accumulate in the esophagus, causing inflammation and even tissue damage.
One of the most frustrating things about EoE is the difficulty in determining your personal EoE triggers. Every patient with EoE has their own unique sensitivities. Unfortunately the standard allergy skin-prick test does not always correlate with EoE triggers. This results in a very long and tedious process of food trials and repeat endoscopies. You have to test out individual foods one at a time.The food trial process can last from 6 weeks to a couple months.
Considering the symptoms I had been experiencing, my EoE diagnosis made a lot of sense; chest and stomach pain, acid reflux, difficulty swallowing, choking, and rapid weight loss. In many ways the diagnosis was a relief; I finally had a name for what was causing me so much pain. However, this was just the beginning of my EoE journey.
The Diagnosis is Just the Beginning
Stephanie with a new recipe she can eat.
My EoE diagnosis complicated my life in ways I never could have imagined. I started to avoid social situations, especially if food was involved. I felt incredibly isolated and singled-out in many social environments, feeling uncomfortable having to explain why I wasn’t eating.
Since I have extensive EoE food triggers (it is easier for me to say what I can eat vs. can’t), I am unable to eat at most restaurants or even the majority of prepackaged snacks and fruit. Suddenly I had to prepare all of my food from scratch. This made daily life pretty complicated—going to work meant making sure I had enough food to last all day, attending any type of social function required a lot of planning and bringing my own meals, and travel suddenly felt unattainable.
If preparing food was not time-consuming enough, I found myself running around the city between my GI doctor, allergist, and dietitian, while still managing a high-pressure, full-time job. Being diagnosed with EoE and food allergies as an adult is incredibly challenging and it is hard to imagine the obstacles until you go through the experience yourself.
Now that it has been nearly three years since my EoE diagnosis, here are a few key pieces of advice that I would give someone else going through a similar situation.
Give Yourself Space to Grieve
When faced with new food allergies or intolerances, it can feel overwhelming and exhausting. Not only are you learning how to scrutinize food labels and cook with different ingredients, but you are also going through a grieving process. Food loss and grief are very real. Food allergies impact not only your day-to-day, but family events, holidays, traveling, and cultural food connections.
Before developing food allergies, intolerances, and EoE, I took for granted how much food permeates everyday life. Food is everywhere you look and plays such a strong role in our social lives. Please remind yourself that it is okay to take all the time that you need. It is important to feel all of the emotions that come with the grieving process.
Food is Medicine
Read more about EoE here.
When you live with food allergies and EoE, eating allergy-safe food is actually part of your medical treatment. Sadly, there is no magic pill that cures it, but eating the right foods can treat EoE and improve my health. However, you must approach diet with bio-individuality in mind. Something I’ve learned over these past few years is that it is possible to be allergic to anything—even foods that are traditionally considered “healthy.” It is important to remember that what is “healthy” for one person, might cause an allergic reaction or negative immune response in someone else.
I’ve definitely encountered a lot of disbelief and surprise that I have to avoid so many different foods. While I initially felt very self-conscious explaining my EoE triggers, through time I have learned the importance of self-advocacy. It can be very challenging for others to understand why I have to maintain such a restricted diet but this is the only way I can remain healthy and keep my EoE under control.
Finding a Support System
Food allergies and EoE can feel very isolating. Finding a support system is key to making this huge lifestyle change actually sustainable. There are many types of support systems out there; whether it is having family and friends who listen and learn about your condition, to meeting others with food allergies on social media. Patient-education conferences are also good places to surround yourself by others who understand the unique challenges of what it is like to live with food allergies.
EoE often makes me feel very alone. However, having the support of my family and other food allergy and EoE friends makes it just a little easier. Not everyone will understand why you have to avoid specific foods. Finding a few key supportive people or resources can help you gain the confidence to advocate for yourself even when it might feel awkward.
Adapting to food allergies and EoE as an adult is a learning process that takes time. Life as you knew it transformed overnight. It can feel overwhelming to merge your lifestyle before food allergies with your new food restrictions. But, you will adapt and become a pro. Eventually your focus will shift away from what you can’t eat to all of the amazing foods that you can. And that is something to celebrate.