Eosinophilic esophagitis (EoE) is a chronic disease of the esophagus (the “food pipe” that goes from the mouth to the stomach). It is typically triggered by allergies to certain foods (dairy, wheat, soy, fish, nuts, or fish), or environmental substances (pollen, weeds, or trees), resulting in a buildup of harmful cells (eosinophils) in your food pipe that causes inflammation, redness, swelling, and damage to the food pipe.
Many adults with EoE describe symptoms such as swallowing problems (dysphagia), burning in the chest (heartburn), feeling food move slowly down their food pipe, or experiencing chest or stomach pains. These symptoms may be accepted by the person as ‘normal’, until they became unbearable, or they end up in the emergency room with food stuck in their food pipe (food impaction).
Delays in Diagnosing EoE
Doctors who are not familiar with EoE may initially diagnose a person with gastroesophageal reflux disease (GERD) because symptoms of GERD are very similar to EoE, and may include a burning sensation in the chest (heartburn) sometimes spreading to the throat, regurgitation of food, difficulty swallowing (dysphagia), or sensation of a lump in the throat. As such, it can be very difficult to distinguish GERD from EoE and may lead to a delay in the proper diagnosis and treatment of EoE.
Some other factors that may contribute to a delayed EoE diagnosis, or a delay in a person seeking medical care include the following:
- Symptoms can come and go with the changing of seasons (because of seasonal triggers), which can lead the person to think it’s a seasonal allergy that will get better.
- People with EoE may develop coping behaviors, such as drinking liquids to help food go down, avoiding foods that are difficult to swallow, or chewing foods for a longer time in order to make it easier to swallow. When these behaviors are no longer effective, the person seeks medical care.
- Some people don’t seek medical care for swallowing difficulties until food is stuck in their food pipe (food impaction), and emergency removal of the food is required.
It’s common to hear stories from people diagnosed with EoE, describing years of distressing symptoms before finding a doctor who was able to diagnose their condition.
Gastroenterology Healthcare Team
If you have uncontrolled GERD or symptoms of EoE, it is important that you discuss EoE with your doctor. If EoE is not diagnosed and treated; narrowing, scarring, and inflammation to the food pipe may worsen over time. If your doctor is not familiar with EoE, find a specialist who is.
People with EoE require life-long monitoring and treatment by specialists who are familiar with the disorder. The healthcare specialty team could include:
- A doctor who specializes in food pipe (esophageal) disorders, called a gastroenterologist.
- A doctor who specializes in food and environmental allergies, called an allergist.
- A health professional who specializes in diet and nutrition, called a dietician or nutritionist.
Your specialty healthcare team will work together with you to:
If you have difficulty finding a doctor who is familiar with EoE, you may contact the American Partnership for Eosinophilic Disorders (APFED). This advocacy organization can assist you in locating a gastroenterology doctor, allergist, or nutrition specialist near you. (www.APFED.org)
The information contained in this newsletter is intended for educational purposes only. Please talk to your doctor about your EoE symptoms, and discuss any foods that may be contributing to your symptoms. To learn more about EoE, click here, or to read other newsletters about EoE or other health related topics, click here.
Copyright ©2017 Link Health Group LLC. All rights reserved. Authored by Susan Jenny BScN (2017).