Food Shouldn’t Hurt: Raising Awareness for World EoE Day

Eosinophilic esophagitis symptoms can often go unrecognized for years, leaving many people struggling with trouble swallowing, food impaction, reflux, and discomfort while eating. For most people, eating is something they rarely think twice about. It’s part of daily life — gathering with family, celebrating milestones, connecting with friends, or simply enjoying a favorite meal.

But for individuals living with Eosinophilic Esophagitis (EoE), eating can become a source of anxiety, discomfort, fear, and isolation.

That’s why this year’s World EoE Day theme, “Food Shouldn’t Hurt,” resonates so deeply.

EoE is a chronic immune-mediated disease of the esophagus that can make swallowing difficult and painful. Many people living with EoE experience symptoms such as food getting stuck, chest discomfort, difficulty swallowing, vomiting, reflux-like symptoms, or avoiding certain foods altogether. For some, symptoms begin in childhood. Others spend years adapting their eating habits without realizing what they are experiencing is not normal.

Too often, people living with EoE suffer silently.

Many learn to:

• chew excessively
• drink water after every bite
• avoid social situations involving food
• eat very slowly
• fear food impactions
• limit foods they once enjoyed

And because these behaviors become normalized over time, diagnosis is often delayed.

More Than a Medical Condition

EoE affects far more than the esophagus. It impacts emotional well-being, relationships, social experiences, mental health, and quality of life.

Children may feel different from their peers. Parents often carry the stress of navigating restrictive diets, school challenges, and uncertainty around symptoms. Adults may avoid restaurants, business dinners, dating, or travel because eating no longer feels safe or enjoyable.

This is why awareness matters.

World EoE Day is not just about recognizing a disease — it’s about validating experiences that many patients and families have struggled to explain for years.

One of the most powerful ways to increase awareness and understanding of EoE is by listening to the real experiences of patients and families living with the condition every day.

At Gastro Girl, we’ve had the privilege of sharing conversations with patients, caregivers, and advocates whose stories help shine a light on the emotional, physical, and social realities of living with EoE — while also offering hope, connection, and encouragement to others navigating similar challenges.

Samantha’s Story: “I Thought It Was Normal”

Samantha struggled with swallowing for more than 25 years — choking on pills, food, and even ice cubes. For years, she was told it was “all in her head.” But after landing in the emergency room, doctors discovered her esophagus had narrowed to the size of a coffee straw.

She was ultimately diagnosed with EoE after years of silent coping strategies and unanswered questions.

In this powerful patient voice episode, Samantha shares her journey from childhood choking episodes to emergency procedures, clinical trials, and ultimately finding remission and hope.

Listen to Samantha’s story:
I Couldn’t Swallow: Samantha’s EoE Journey

Joshua & Jeni’s Story: Navigating Pediatric EoE

What’s it really like for a child to live with EoE?

In this inspiring episode, Jeni and her son Joshua share their family’s journey navigating pediatric EoE — from the earliest warning signs to preparing for college life while managing a chronic condition.

Their story highlights the resilience required to manage EoE as a family, including navigating diagnosis delays, treatment decisions, symptom recognition, and the transition from pediatric to adult care.

Listen to Joshua & Jeni’s story:
Pediatric EoE: Joshua & Jeni’s Journey

Matt’s Story: Finding a Path Forward with EoE

Living with EoE can make eating and swallowing a daily challenge. In this episode, patient advocate Matt shares his personal experience navigating diagnosis delays, food triggers, treatment adjustments, and the emotional realities of living with a chronic swallowing condition.

His story offers an honest look at the resilience, trial-and-error, and determination many patients experience while trying to regain control of their health and quality of life.

Listen to Matt’s story:
Living with EoE: Matt’s Story

Wendy’s Story: Finally Finding Answers

In this heartfelt episode, Wendy shares her experience living with EoE, including the confusing early symptoms, years of uncertainty, and the coping mechanisms she unknowingly developed before finally receiving an accurate diagnosis.

She also speaks openly about the emotional and social impact EoE had on her daily life — and how receiving answers and treatment helped her move forward with greater understanding and hope.

Listen to Wendy’s story:
Wendy’s EoE Journey

Expert Insights & Evidence-Based Education

In addition to sharing patient stories, access to trusted, evidence-based education from experienced gastroenterologists is essential to helping patients better understand EoE, recognize symptoms earlier, and feel more confident navigating conversations with healthcare providers.

At Gastro Girl, we’ve had the opportunity to feature leading GI experts discussing the latest understanding of EoE, including diagnosis, treatment approaches, symptom recognition, quality of life, and emerging therapies.

Explore the Gastro Girl EoE playlist on YouTube:
Gastro Girl EoE Playlist

Featured Episode: Understanding EoE with Dr. Milli Gupta

“Food shouldn’t get stuck when you eat.”

If you find yourself chewing excessively, drinking water just to swallow, or avoiding certain foods altogether, it may be a sign of something more serious than occasional reflux or picky eating.

In this updated episode, gastroenterologist Dr. Milli Gupta explains what EoE is, why symptoms are often overlooked for years, and the treatment options available today.

Watch the episode:
Understanding EoE with Dr. Milli Gupta

Featured Episode: Trouble Swallowing? Signs You Shouldn’t Ignore

Does it ever feel like food gets stuck when you swallow? Or that eating takes more effort than it should?

In this episode, Jacqueline Gaulin speaks with gastroenterologist Dr. Neil D. Parikh about the warning signs patients often overlook — and why swallowing difficulties should never simply be ignored.

Topics discussed include:

• Why food may feel like it’s getting stuck
• The difference between reflux and something more serious
• Common Eosinophilic Esophagitis symptoms patients normalize over time
• When swallowing problems require medical evaluation
• How EoE is diagnosed and why earlier recognition matters

Listen to the episode:
Trouble Swallowing? Signs You Shouldn’t Ignore

Family-Friendly EoE Education for Kids & Caregivers

Education around EoE is also important for children and families navigating symptoms, diagnosis, and treatment together.

That’s why Gastro Girl created fun, family-friendly educational content designed to help explain digestive health topics in a more approachable and engaging way for younger audiences.

Oliver Super Beardie & the Case of the Sticky Swallow

Get ready for a tail-wagging adventure as Oliver Super Beardie sets out to solve a mysterious throat trouble affecting his buddy Sam.

Joining Oliver is pediatric gastroenterologist Dr. Sophia Patel from Cleveland Clinic, alongside host Jacqueline Gaulin. Together, they help explain:

• Signs and common eosinophilic esophagitis symptoms of EoE in children
• Why swallowing problems shouldn’t be ignored
• How EoE is diagnosed
• What treatments and support may help kids feel better

Watch the episode:
Oliver Super Beardie & the Case of the Sticky Swallow

World EoE Day, recognized annually on May 22, is a global awareness initiative dedicated to increasing understanding of EoE and improving recognition of the signs and common symptoms associated with this often underdiagnosed condition.

This year’s theme — “Food Shouldn’t Hurt” — shines a light on the very real physical, emotional, and social challenges many people living with EoE experience every day.

The World EoE Day Alliance brings together patient organizations, advocates, healthcare professionals, and partners from around the world to help:

• Raise awareness of EoE and its symptoms
• Encourage earlier diagnosis and treatment
• Improve education and support for patients and caregivers
• Advocate for better care and access to resources globally

Learn more:
World EoE Day

For patients, caregivers, and healthcare professionals, it marks an important milestone—a chance to elevate understanding, break down stigma, and promote access to earlier diagnosis and effective care.

We’ve curated some of our most popular evidence-based resources to help raise awareness and support the EoE community.

EoE Playlist on YouTube

Our Gastro Girl YouTube channel is full of EoE-focused content—conversations with GI experts, real patient stories, and compassionate explanations of what EoE is and how it’s managed. You will also learn about common eosinophilic esophagitis symptoms
Check out the EoE Playlist

EoE Health Hub

From symptom checklists to podcasts and articles, our EoE Health Hub is your one-stop destination for credible, easy-to-understand information.

Just Diagnosed with EoE?

Start here: Gastro Girl’s EoE Toolkit is a step-by-step guide for navigating your diagnosis and what to do next.

Is Your EoE Under Control?

Use our EoE Patient Guide to reflect on your symptoms and prepare for more productive conversations with your doctor.

A Safe Space to Ask Questions

The Gastro Girl YouTube channel has become a space for patients, parents, and caregivers to connect, share experiences, and learn from each other. Whether you’re a parent unsure of what’s “normal,” or an adult silently struggling to swallow—you’re not alone here.

• It takes an average of 4+ years and multiple doctors for many patients to get a proper diagnosis.
• EoE is often misdiagnosed as GERD, allergies, or behavioral issues—especially in children.
• Without treatment, EoE can lead to esophageal narrowing and permanent damage.
• Early diagnosis and ongoing care are critical.

Could It Be EoE? Know the Signs

If you or someone you love is experiencing unexplained digestive symptoms, difficulty swallowing, or food getting stuck, this visual guide from APFED breaks down the most common signs of EoE in both adults and children.

Specialist Directories

• APFED Specialist Finder (including dietitians)
• Gastro Girl’s Zocdoc-Powered Provider Finder

Education & Support

• Gastro Girl Just Diagnosed with EoE Toolkit
• EoE Health Hub
• APFED.org – patient education, research, and advocacy
• CURED Foundation – patient education, research, and advocacy
• GAAPP – Global Allergy & Airways Patient Platform

We’re deeply grateful to organizations like APFED, GAAPP, CURED, and so many others working tirelessly to improve care and awareness for eosinophil-associated diseases.

A heartfelt thank-you to Sanofi and Regeneron for supporting our mission this month—helping us reach more people with the education, resources, and hope they need.

With gratitude and purpose,
Jacqueline Gaulin
Founder, Gastro Girl