Thank you to Melissa for sharing her story about growing up wth EoE and being so open about her experiences of living abroad in Italy.

Melissa’s EoE Story

I am 27 years old and I live in Connecticut with my husband, Nathan. I grew up in Connecticut, but after getting married in 2016, I moved to Aviano, Italy where my husband was stationed with the US Air Force. We lived there until March of 2020, and we are so thankful that we were able to move back when we did, as the pandemic would have kept us locked down in Italy for a long time more. I currently work as an administrative specialist at a nonprofit organization called The Connection Inc. Some of my favorite things to do are bake and try new recipes with healthy ingredients, plan and host parties and events, traveling and I have been enjoying weight lifting (although I’m not the best at it haha) because it makes me feel strong.

When were you diagnosed with EoE?

I was officially diagnosed with EoE when I was 11 years old, although I had demonstrated symptoms since I was very young, even before 5 years old.

How long did it take to receive a diagnosis?

If I count starting at 5 years old, it took about 6 years. Thanks to my mother for realizing that something was wrong when I was coughing so much while eating as a child.

What was it like having EoE growing up?

Until my actual diagnosis of EoE, I was diagnosed with asthma, which now as an adult I am learning is EoE induced asthma. Growing up, I was always trying new medication or going to new doctors and it just seemed annoying as a child. I also had other GI issues, so I remember being uncomfortable a lot of the time and having to use the bathroom everywhere we went because my stomach always hurt.

My diet restrictions began at my diagnosis at 11 years old, and thankfully cutting out dairy was the first step and one that helped me to feel much better up until college, which is when I began experiencing more symptoms. Looking back, my parents and I did not know much at all about EoE which I believe was a hindrance in my overall wellness, and it’s most likely due to the fact that it was still a newly recognized disease when I was diagnosed, so doctor’s did not share many resources to help me.

Can you share what challenges EoE brings to your life, especially as an adult?

When I was in college, I noticed that my EoE symptoms and other GI issues began to worsen. I thought at the time it was due to stress, and that very well may have been a big factor. Over the last few years, my EoE has always been present, but I have been able to manage it by avoiding dairy, with the occasional enjoyment of eating cheese, gelato, pizza (I lived in Italy so I just had to enjoy it a little bit haha).

Since college, I have gone in for endoscopies multiple times to hopefully find out why things were worsening, but I think my biggest hindrance was that I was never able to stick with one doctor long enough to see me through treatment. For example, I went to college in Ohio, so I had a GI doctor there, then I moved home to Connecticut for only one year after college and had to switch to a new GI doctor, and I then moved to Italy and had to find a GI doctor while abroad.

While living in Italy, my doctors told me it was only post nasal drip even after an endoscopy, despite me already having an EoE diagnosis. That’s a glimpse into how widely varied healthcare can be while living in a different country. That experience was frustrating, and while my symptoms worsened tremendously my last year living in Italy, I felt that I had no support or guidance from a medical standpoint.

Again, I believe that stress really caused my EoE to become the worst that it had ever been. From about November 2019-July 2020, I was unable to sleep lying down — I slept on the couch most nights because my chest had so much tightening and pressure. I was having severe heartburn, I could hardly swallow, and I was coughing constantly.

When I was back in the States, I ended up in the ER twice because I felt like food was stuck and I was honestly in so much pain and discomfort. Fast forward, I currently still have symptoms that affect my day to day life and I’m working with a dietician, my GI doctor, my naturopath, and my primary care doctor to get to the root of my issues, which I believe is more than just EoE. I still do not know my food triggers/sensitivities since I continue to have so many symptoms even while on an elimination diet.

One of the hardest things living with EoE as an adult is that food is definitely a social thing. Everything seems to revolve around people and food and I can’t easily go out to eat. It always takes extra work for me to prep and it can be exhausting and expensive. Even when eating, it can be embarrassing to always be coughing, clearing my throat and dealing with so much mucus during and after eating.  I have been trying to avoid most of the top food allergies until I can somehow narrow down what’s actually bothering me.

What would you tell someone newly diagnosed with EoE?

I would let them know that they’re not alone and to help connect them with others who have EoE. I felt alone in my suffering for so long, but just connecting online with other people who feel what I feel and experience what I experience, makes me feel so much more empowered. I would also say to be your own advocate — you know your body best and you know when something is not right, even when doctors might tell you everything is fine. If doctor’s want to take the easy route and put you on medication forever, but that’s not something YOU want, fight for finding the root cause. There are amazing functional medicine and naturopathic doctors who have been helpful in my journey of finding the root issues, while also knowing that medicine is extremely helpful at the right times.

Have you discovered anything new about yourself living with EoE?

I’ve realized that I want to truly experience health — I don’t think I’ve been very healthy my whole life. I’ve had a lot of medical issues ever since I was really young and I’m honestly not sure why. Having EoE has made me appreciate my body more and all that it has been through. It makes me want to take better care of myself with the foods I eat and the products I use, and has made me realize that so many people have forgotten that food, herbs, sunshine, exercise and more can be so healing to us. I’ve been on a journey of really digging deep to find the root cause of not just my EoE but also my other GI issues and other medical issues. I also have realized, even though it would be easier to eat whatever I want, I have enjoyed using allergy friendly and healthy ingredients to recreate favorite family recipes, desserts, and more and hopefully I can share that more to help others.

The post Melissa: Growing Up & Learning with EoE appeared first on The Open Cookbook.

Let’s just say that I got really lucky in 2019 when I decided to attend the APFED (American Partnership for Eosinophilic Disorders) Patient Conference. The very first person I met at the conference was Amanda, one of the only other adult EoE patients also in attendance. We were both recently diagnosed and going through similar experiences, learning how to live with EoE and the unique challenges that come with the disease. At the end of the conference, we exchanged phone numbers and have supported each other through the ups and downs of living with EoE ever since. Thank you, Amanda!

Can you describe your path to diagnosis?

My path to being diagnosed with EoE was long and complicated (to say the least). Unfortunately, I think a lot of other EoE patients have a similar experience because it is such a rare disease and can be mistaken for other diseases like GERD.

I had my first endoscopy in May 2018. The gastroenterologist immediately suspected I had EoE and I will never forget him saying “eosinophilic esophagitis” for the first time. My mom had taken me to the appointment and when we spoke to him after the endoscopy. I still felt a little off from the anesthesia and even my mom, who was sitting next to me, asked politely, “Excuse me?” I remember she asked the doctor how to spell it so that she could write it down. After I got home and took my usual post-endoscopy nap, I remember we searched for EoE on the internet and tried to figure out what it was because I had never heard of it before.

While my first gastroenterologist suspected EoE, it actually took me nearly one year to have what I would consider an “official” diagnosis at the age of 34. I ended up changing gastroenterologists after my first endoscopy to find a closer doctor to where I live. The second gastroenterologist I saw was torn between EoE and GERD after my next four endoscopies with her, and that was when I went to get another opinion at the University of Pennsylvania’s Esophageal and Swallowing Disorders Program.

The gastroenterologist who I see now at UPenn has been a lifesaver and one of the things she said to me during my first appointment was — “You definitely have EoE.” It was comforting and reassuring, in some way, to have a doctor give me such a concrete answer after a year of searching for answers.

What symptoms led you to seek medical care?

My worst symptom was constant, unrelenting, pervasive, maddening, aggressive acid reflux. Did I use enough descriptors? The reflux was awful and would wake me up at night from choking and coughing, and I considered it to be a “good day” if I could make it to 10 a.m. without experiencing any reflux. Most days, I would wake up with reflux in the morning and it would just get worse throughout the day. It felt like it was bubbling up into the back of my throat and I could hear it crackling sometimes. It was so uncomfortable.

I tried every over-the-counter medication I could find, changed my diet, and made all of the lifestyle changes I could find recommended on the internet, but none of it worked or alleviated the reflux. I also had significant nausea, stomach pain, and some issues with swallowing food. Thankfully, I never had a complete impaction with food getting lodged in my esophagus, but I had a few instances where food would get stuck for a moment and slowly move through my esophagus, which can be scary. The reflux was definitely my worst symptom and what prompted me to seek treatment. I first went to my primary care doctor and he prescribed Omeprazole. Once we realized I could not take that due to side effects, he referred me to a gastroenterologist.

What do you find to be the most life-changing aspects of living with EoE?

Right now the most difficult aspect is the amount of medication I need to take each day just so I can eat comfortably. I currently take a swallowed steroid (Budesonide) and it is not very portable because it has to be mixed with honey right before taking the medication. Pre-pandemic it was annoying to go out to eat and have to mix my medicine at the table after I was finished eating. I made sure to always carry a small dish, spatula, honey, and the Budesonide in my purse if I wanted to go out to breakfast or dinner.

Although it is frustrating to have to take medicine multiple times per day just to eat without symptoms, I am extremely thankful that my EoE is in remission and I can eat everything. I think another difficult aspect is the worry that comes along with EoE. I have tried so many treatments and they have all failed after a few months, so this is the longest I have gone with one treatment that has continued to work. I feel like sometimes I am waiting for the other shoe to drop and for this treatment to not work anymore. 

Before my current treatment plan with Budesonide, I tried multiple elimination diets. During the elimination diet trials, the most challenging aspect was finding the joy in eating. I didn’t want to cook, I didn’t want to go grocery shopping, and I didn’t want to see any friends or family. I mostly didn’t want to see people because this usually included a meal or some type of food, requiring me to bring my own food or having to explain to others why I didn’t want them to try to make me food (I was always afraid I couldn’t trust the food although I know everyone meant well). The elimination diet was a very difficult experience and isolating experience. It was exhausting and I felt like an outsider.

Many of your symptoms are triggered by environmental and chemical allergies. Can you describe how this has impacted your day-to-day?

I am definitely convinced that my EoE triggers are from environmental and chemical allergens since after trying several elimination diets my EoE never improved.  It seemed like no matter how I adjusted my food it did not affect my EoE. I have discussed it with my allergist and gastroenterologist and they both agree it is a possibility too. Many of the EoE moms I met at the APFED Patient Conference said they usually don’t have their children do endoscopies and trial treatments during the spring when environmental allergies are usually at their worst. 

After I was diagnosed with EoE, I went through a period of time where I was getting hives that would appear, disappear, and reappear throughout the day. After doing patch testing with my allergist, we figured out that I have allergic contact dermatitis and am allergic to a host of chemicals and ingredients commonly found in most products we all use.

That diagnosis affected my day-to-day life tremendously because I usually get hives on my hands or any exposed skin on my arms whenever I leave my house, which is my safe zone. All of the products I use in my house are safe for my allergies, but when I go out in public I am usually exposed to cleaning products and other chemicals that will trigger my hives.

Can you share what challenges EoE brings to your life, especially as an adult?

As an adult, I definitely faced challenges at my work and especially when I was trying online dating. Online dating is difficult enough as it is, right? But it became even more difficult for me when every date usually revolves around food or drink. I never wanted to explain EoE to a new person on a first date, so I think unfortunately it deterred me a little bit from dating as I was trying to get the disease under control. I never trusted eating out while I was on an elimination diet, so that really limited my options in the dating world.

At work, I experienced similar difficulties when colleagues or clients would want to go out to eat. I didn’t want to explain EoE to “work” people because I tend to be very private with my personal life at work. It was also challenging because even if I could avoid explaining, people would always ask questions if I didn’t order food or just had a coffee at lunch.

Any tips for balancing living with EoE while working in an office environment?

My biggest tip would be to make sure you have everything you need to be comfortable at work and to not put too much stock into what other people think. At my current office, I have all of my own “safe” cleaning products at my desk so that I can keep my own space clean and free from other cleaning products. Previously, I always got hives from the products they used on my desk so I just notified my boss that I had allergies and did not want anyone cleaning my office. Luckily, my current boss is great so of course he agreed and didn’t ask me too many questions.

When I was on the elimination diet and had to go out to eat with a client, I would just simply say I had allergies and it was too difficult for me to eat out. People usually respected that response and didn’t ask me too many questions, but it was definitely hard at first. A couple of times I tried to bring my own food to restaurants, but many restaurants will not let you do that, so I would just have a coffee. Although it felt isolating and strange, I realized I had to advocate for myself and not worry about what other people think, which is of course easier said than done.

What have you learned living with a rare disease?

I have learned not to take my health for granted. I never really thought about it before EoE affected me and my ability to eat. I try to be more appreciative of life, in general, and eating food, specifically.

I know it may sound dramatic, but I truly appreciate that my diet is unrestricted because I realize my EoE and treatments may change and who knows what the future holds, so I have to just be appreciative now for what I can do. I think it is important to be appreciative and always advocate for yourself in your daily life and with doctors. Advocating for yourself is especially important when you have a rare disease because the path to diagnosis can be extremely difficult.

What would you tell someone newly diagnosed with EoE?

It will get better. Find a gastroenterologist who is well versed with EoE and the most recent treatment options and research. That is the most important advice I can give. It helped me so much to find my current doctor and significantly reduced my stress level because I know I can rely on her and what she tells me.

I would also say to get involved with APFED or other groups dedicated to eosinophil-associated diseases because it helps you feel less isolated. If you’re as lucky as I am you might also make a friend who will turn out to be your biggest source of support. Sometimes you need a friend who knows what you’re going through and just gets it.

Have you discovered anything new about yourself living with EoE?

I am proud of myself and my ability to have such strong willpower to complete the various types of EoE treatments I had to do (elimination diet, new medication, etc.). I am also proud of how I keep everything in perspective and try to keep a relatively positive attitude despite the EoE diagnosis. I try my best to be resilient and live life to the fullest.

The post Amanda: Balancing Life With EoE appeared first on The Open Cookbook.

Thank you to Lara for sharing her EoE story and the challenges to reach a diagnosis. If you would like to learn more about Lara, be sure to follow her on Instagram (@epinepherywhere).

Lara’s EoE Story

My name is Lara, I’m 27 years old and from Washington, D.C. I’ve lived with life-threatening allergies for my entire life and also have several allergic conditions, including EoE. While sometimes this can feel like a lot to deal with, I do my best to take it in stride and not let it get in the way of my life. Things I still love to do despite my allergies and chronic conditions: traveling, exploring D.C. and eating way more sweets than a normal person should be able to!

When were you diagnosed with EoE?

I was first diagnosed with EoE when I was 23. I had never heard of EoE and had no idea what it meant for me day-to-day or long-term. At the time of my diagnosis, I wasn’t experiencing the typical symptoms of EoE, such as difficulty swallowing or chest pain. While it wasn’t great news to get a new and unexplained diagnosis, the fact that I wasn’t symptomatic at the time let me ignore my diagnosis for those first few years. I adopted an ignorance is bliss attitude and chose not to think too much of it. This of course changed as time went on and I eventually developed symptoms and needed treatment.

How long did it take to receive a diagnosis?

During university I became very sick. I developed symptoms such as extreme fatigue, loss of appetite, brain fog, etc. These symptoms lasted for months and no doctor could find a reasonable explanation for what was causing this. I saw infectious disease doctors, rheumatologists, hematologists – you name the specialty and I probably saw the doctor. Eventually, the only indicator of anything wrong was an extremely high level of eosinophils in my blood. My doctors had never seen a number that high (I’ve always been an overachiever!).

Shortly after the doctors discovered my unusual blood count, the unexplained symptoms I had been experiencing disappeared, so I wasn’t too concerned with why I had so many eosinophils swimming around in my veins and just went on with my life. During this time I continued to see doctors and they kept telling me I had higher and higher levels of eosinophils in my blood.

I eventually had an allergist who suggested that I get an endoscopy as she thought the eosinophils in my blood could be indicative of EoE. When I talked to my gastroenterologist about performing an endoscopy, he was very hesitant, as he felt that the risks of the procedure outweighed the chances that I actually had EoE. I remember telling him that if there was even a 1% chance I had EoE that I wanted to go through with the procedure. He told me there was 1% of a 1% chance that I had EoE. Then, go figure, I was that 1% of a 1%! After that first endoscopy I was finally diagnosed.

At the time of my initial diagnosis, I wasn’t experiencing your typical EoE symptoms, but in the years since this has changed. Now that I have developed symptoms, my life has been a balancing act of trying to find the right medication that works for me that also doesn’t cause side effects that outweigh the benefits. Before I started this EoE journey, I used to think that when you get sick, a doctor prescribes medication and then you get better. I’ve since learned that diagnoses aren’t linear and it’s a constant battle of changing symptoms, changing medications, and for me, lots of endoscopies.

Can you describe your medical team for EoE and how they help you through the process?

To get my initial diagnosis I saw so many doctors. It felt like they just passed me back and forth like a football until the ref finally stepped in, grabbed the ball and said “Hey, I think it’s EoE!”. Now that I have a diagnosis I work closely with my allergist and gastroenterologist. Since EoE is an allergic condition of the esophagus, I’ve found that the combined care of these two specialties has worked the best for me. They work closely together, bouncing ideas and expertise off each other to give me the best quality of care.

Can you describe your approach to balancing life-threatening allergies to peanuts and treenuts with EoE?

The majority of individuals with EoE have certain foods that cause their EoE symptoms to worsen, so a diagnosis can also result in extensive food restrictions. My doctors believe that my EoE is genetic rather than the result of ingesting allergens, so as of now I haven’t had to limit any additional foods with my diagnosis. That being said, I’m not sure I believe that this is the case. While my diet is still varied at this point, I am in the early stages of figuring out my EoE, and think that additional food restrictions could be very possible in the future.

I’ve had my anaphylactic allergies for so long that managing them is second nature at this point. While I’m comfortable in managing my allergies, when I was first diagnosed with EoE, it felt like this new big scary thing I didn’t understand that I now had to deal with on top of my allergies. While I didn’t welcome my EoE diagnosis with open arms, I eventually came to terms with it as another aspect of my health that I have to manage.

Can you share what challenges EoE brings to your life, especially as an adult?

Because I haven’t had to further limit my diet, I haven’t found too many social challenges that go along with my EoE. For me, the biggest challenge by far is the medication. I’m currently on a liquid medication that I have to take day and night, that needs to be refrigerated constantly, that I can only get in a two week supply – plus, it is not covered by my insurance so it’s very expensive.

I love to travel and while I haven’t been able to travel far recently due to the pandemic, I’m already envisioning the difficulties that will come along with travel and medication management when I can’t get more than 6 feet from a 2 week supply of refrigerated medication. I also have been trying to move abroad for the last few years and managing my EoE has created an added layer of complication in that process. I’ve been doing extensive research and making many overseas phone calls to try and find out if I can get the medication I need outside of the United States. While this is challenging to navigate, I’m hopeful that I can find a creative solution.

What have you learned living with a rare disease?

I’ve learned that you really have to advocate for yourself and for your care. Doctors aren’t miraculous and can’t snap their fingers and figure out a difficult diagnosis and then immediately provide effective treatment. You need to be able to voice your symptoms, what tests you want done, and what medications you want to be on.

Being your own healthcare advocate is so important, especially with a rare condition. You also need to find healthcare professionals who will listen to you. Doctors are always looking for the most obvious diagnosis, so if you don’t fit that mold, oftentimes they will write you off. You have to search and find a healthcare provider who listens and will work to find a diagnosis and the most effective treatment for you.

What would you tell someone newly diagnosed with EoE?

I would tell a newly diagnosed individual to find a community of people that understands what they’re going through. When I was first diagnosed, I had absolutely no idea what it meant for me, and honestly my doctors didn’t know either, so I felt like I was left with no information. Finding a community of people online who also have this rare condition has been helpful and made me feel much less isolated. Also, funnily enough, one of my best friend’s boyfriends also has EoE. We found out about each other’s diagnoses by chance and now we complain about our medications to each other and compare notes from our doctor’s appointments!

Have you discovered anything new about yourself living with EoE?

I’ve learned that I’m resilient. I’ve had life-threatening food allergies on top of other medical issues for my entire life, so it was initially really daunting to receive yet another diagnosis. But eventually I learned that I can not only handle it, but that I can make the best of it. It’s another part of my journey and that’s okay.

The post Lara: Journey to an EoE Diagnosis appeared first on The Open Cookbook.

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.

The post Stephanie: Rediscovering Food Joy with Asthma & EoE appeared first on The Open Cookbook.