Stephanie: Rediscovering Food Joy with Asthma & EoE

Stephanie: Rediscovering Food Joy with Asthma & EoE

Thank you for joining me at The Open Cookbook and following my health story.

It is challenging for me to separate my journey with allergies, asthma, EoE, and autoimmunity. I see these allergic and chronic immune-mediated conditions as completely intertwined — they move as one, each alerting me before the next, and I am trying to learn how to read their mysterious signals.

Being so open about these personal experiences does not come naturally to me, but I hope by sharing my own health journey you might see your own story or recognize someone you love.

Facing My Allergies & Asthma

I have a hard time remembering when I wasn’t ashamed or embarrassed about living with allergies and asthma. The last time I recall not feeling self-conscious about having allergic conditions was in second-grade, holding hands with my elementary school friend, heading to the nurse’s office. We would always go together to take our daily medication, often skipping down the hallways, blissfully happy to have each other. While I would sit there patiently, breathing in medication from the nebulizer, I would stare at my friend in disbelief, as she would admirably swallow gigantic pills, almost the size of her pinky finger. There was no judgement and only acceptance. We had each other, in camaraderie and with a youthful understanding.

I have only recently realized that my asthma tries to communicate with me, warning me that something is wrong. Despite being hyper-aware of my body and any new symptoms, I have always ignored my asthma. I never took it seriously enough, using my inhaler more than I should, and never facing the reality that I needed to see a doctor. I realize now that it is because the people around me in my past — teachers, friends, and classmates — who dismissed the seriousness of asthma, thinking that I was using it as an excuse. To this day, I have to remind myself to not ignore my asthma, trying to shed the cloak of shame that surrounds it.

Seeing Food in a New Light

In 2010, when I first moved to New York City after graduate school, enjoying food was my main focus when I wasn’t working late nights at a high-pressure job. My weekend ritual with my boyfriend, now husband, was to head to Tal Bagels on the Upper West Side and grab everything bagels, smothered with cream cheese, tomato, and lox. I would meet friends in Chinatown and devour lamian, hand-pulled noodles, on Doyers Street. I loved exploring Koreatown, craving banchan and all of the salty and pickled delights.

About six-months after just beginning to explore the boroughs and all the amazing food they each had to offer, I suddenly faced my first food allergy. After a severe flare-up of my asthma, an allergist discovered that I had developed a yeast allergy, triggering all of these new symptoms. I reluctantly gave up yeast and said goodbye to pizza, beer, and of course bagels – and yes, I cried many tears over losing my favorite weekend ritual. Luckily, removing yeast improved my asthma almost immediately, but mysterious symptoms kept piling up.

And so I began my food journey, removing food gradually, and then very suddenly. After yeast, gluten shortly followed when I became very ill with gluten-sensitivity and Hashimoto’s thyroiditis, an autoimmune disease that attacks the thyroid. For a couple years, removing gluten put a lot of symptoms at bay until reactions started happening again. Dairy became hit or miss. Oysters suddenly gave me migraines and nausea. Shrimp would cause me to wheeze. Chemical smells made my vision white out and I would nearly faint. Random rashes started appearing on my neck, hands, and around my eyes. My asthma started to flare up again and after visiting allergist after allergist, there was still no answer. Unfortunately, this continued until my reactions to food spiraled out of control.

Learning about EoE

One month before my thirty-sixth birthday, I suddenly lost the ability to eat. Every bite of food or sip of water came with excruciating pain, the simple act of swallowing became treacherous, and I lived on coconut water, chicken broth, and pureed potatoes. I forced myself to take tiny bites of food and just focused on the act of eating – a big adjustment for a natural-born food fiend. I could barely walk, too weak from the lack of food, and every step brought a searing pain to my chest and stomach.

Fortunately, I was given a diagnosis fairly quickly after an endoscopy, with my gastroenterologist calling me on the phone, providing a synopsis of eosinophilic esophagitis (EoE). My mind was oddly calm and just relieved to have some answers for what was causing the troubling symptoms. I began frantically researching the rare disease, trying to understand my options. I learned that EoE is a chronic immune-mediated disorder that causes inflammation in the esophagus, most likely caused by food and environmental allergens. However, unlike IgE-mediated allergies, the reactions can be delayed, making it quite challenging to identify your triggers.

Despite trying a couple of medications, my symptoms were not improving and eating continued to be challenging for me. I immediately began the Six Food Elimination Diet and was hopeful that my food reactions were within the top most allergenic foods. Unfortunately, my body continued to reject most food and my list of safe foods continued to dwindle down.

This was without doubt my lowest point – both my physical and mental health were on edge. I could eat only a handful of foods and was even starting to lose foods that had just recently seemed to be safe for me. At the same time, I was also diagnosed with Sjogren’s syndrome, an autoimmune rheumatic disease, as well as a rare GI motility disorder, making eating even more of an obstacle. I was forty pounds lighter and barely recognized my reflection. I had five endoscopies in one year, sadly a common occurrence with EoE. I suffered from food anxiety and clutched to the few foods that made me feel safe. I tried an amino acid-based formula (also known as an elemental diet) to give my body a break from digesting food proteins, but even that was not tolerable.

My Kitchen as Sanctuary

Suddenly, the place I felt safest was my own kitchen. This is where I had (and still have) the most control and it became a place of comfort.

Leaving my apartment for more than a few hours started to cause severe anxiety since I could only eat food that I made myself. Spontaneity, even of the simplest sort, such as last minute plans with a friend, was suddenly out of the question. I would overcompensate by lugging food around with me — I couldn’t be without at least one meal with me at all times. Even going to work presented new challenges, having to prep for every weekday meal since dinner was often spent at the office. I developed an unhealthy habit of rationing my meals due to a fear of being without any accessible food.

Since eating became so fraught for me, I turned to cooking shows for my food replacement and pleasure. Every weekend for over a year, reruns of Top Chef, became my conduit for eating. I watched hours at a time, absorbing the flavors through my eyes — I couldn’t get enough. As I ate my simple soup of chicken broth and overcooked vegetables, I devoured the elaborate meals on television. When Padma and Tom provided critique to the chefs, the vibrant yet delicate colors of a crudo or a perfectly cooked duck, gave life to my bland food, virtually seasoning it. While my body had been wiped of its memory on how to process most food, my mind still remembered.

Rediscovering My Food Joy

After a couple of years on a very restricted diet, my relationship to food has in some ways become stronger than before. With restrictions, comes creativity.

While I always loved food, I never really enjoyed cooking until I had no choice but to make every meal for myself. Now, cooking brings me a sense of peace, meditatively chopping vegetables and learning the properties of foods I never cooked with before. I have more appreciation for every fruit and vegetable. Flavors have intensified. I am able to jog specific memories by just looking at other people’s food. I love to make my husband laugh when I smell a bag of Honey Dijon potato chips for a good couple of minutes before he is allowed to enjoy the snack.

Living with EoE, I have learned to accept repetition. I have eaten more squash and zucchini than I ever imagined possible. Pureed, sauteed, roasted, steamed, boiled — I have tried it all. They are like old friends and make me safe and secure. I have yet to tire of bananas, starting every morning with the same banana-coconut smoothie. Potatoes will always make me happy, but roasted is no doubt the best. I never cared for cooked carrots growing-up, but now I can’t get enough. The recent introduction of basil brings out subtle flavors in vegetables that I never knew existed before. Coconut is my lifeline.

Fortunately, I have found a treatment plan that is working for me at this time and my safe food list is beginning to expand. Any introduction of a new food in my diet creates an explosion of joy and childlike wonder. My new lifestyle requires an immense amount of preparation and anticipation of the unknown but I am learning to ease into it.

Friends often ask me what food I miss the most. Of course while I would love to enjoy another everything bagel, the feeling of desperation that I initially experienced has dissipated. I’ve discovered that what I actually miss the most is not a particular taste or texture, but the experience of sharing a meal with family and friends — the feeling of inclusion. While that experience might never look the same for me, I am learning how to create new types of food memories, dreaming my way into meals that I never knew existed.

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3 thoughts on “Stephanie: Rediscovering Food Joy with Asthma & EoE”

  • A fellow allergic person here (card and EpiPen carrying). You write beautifully. I think the notion of food anxiety is so difficult to explain to someone who hasn’t gone through it, and I’m grateful for people like you who take the time to speak out both about it and what you’ve been through. I look forward to reading more. Have a great weekend!

    • Wow, thank you for your kind comment and for reaching out. It means a lot to me, especially to connect with a fellow allergic person! Food anxiety is definitely such a big issue when dealing with allergies and it is hard to understand until you encounter it personally. I hope to keep touching on these specific allergy topics and continue to raise awareness. Take care!

  • This was very helpful in understanding the link that asthma has to multiple symptoms and situations. Thank you for sharing.

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