Melissa: Growing Up & Learning with EoE

Melissa: Growing Up & Learning with EoE

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.

Melissa preparing a gluten-free and vegan gnocchi with her grandfather.

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.

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