What is eosinophilic esophagitis or EoE?

Let’s start with the basics. Eosinophils are a type of white blood cell that play an important role in fighting certain infections in the body. The esophagus is the tube that connects the mouth with the stomach. Eosinophils are not normally found in the esophagus. But they can build up there, usually due to an allergic reaction, and cause swelling, pain and trouble swallowing. EoE happens when eosinophils build up in the lining of the esophagus.

You can take control of your EoE.

By finding out what is causing your EoE symptoms, you can reduce them and start living a more comfortable life. You can still go to school, go out with your friends, go away to college, start a career, travel…all the things you might hope for your future. Treating — and more importantly, preventing — the allergic reactions that cause swelling and pain are the key to living a more comfortable life and vital to preventing EoE from causing permanent damage. EoE is a lifelong condition, but it doesn’t have to slow you down.

Understand the causes of EoE

EoE is a kind of allergic response. Here are some of the things that are associated with EoE: 

• Food allergies. Allergies to certain foods can cause EoE symptoms, especially dairy products, eggs, soy and wheat. 
• Environmental allergies. Some people with EoE also have allergies to things like pollen, animal dander, mold and/or dust mites. Some people with EoE also have asthma, eczema or other allergies that cause a skin rash. 
• Family history. If you have family members with EoE, your child has a higher chance of having it, too. 

What does EoE feel like?

People with EoE often describe feelings such as:

• Heartburn or other pain in the chest or stomach area.
• Nausea.
• Food coming back up into your mouth after swallowing (regurgitation).
• Vomiting.
• Trouble swallowing dry or solid foods, with a feeling like food is having a hard time moving down the throat. In some cases, the food can become stuck (food impaction), requiring emergency medical attention to dislodge it.
• Problems sleeping due to discomfort in the chest or stomach area.

The symptoms of EoE can be different for everyone. Talk to your doctor about any symptoms you are having, even if you are not sure EoE is causing them.

Getting an EoE diagnosis can be tricky. You may work with several doctors while you try to find out what’s going on. But it can be a relief to find out what has been causing your symptoms.

Here is something really important to know — your symptoms alone are not enough to diagnose EoE. To diagnose EoE properly, a specialist must perform an endoscopy and remove tiny bits of tissue from several places in the esophagus (biopsy) and test them for eosinophils.

If your doctor thinks that you may have EoE, your path to a diagnosis may include the following:

• A physical exam. Your doctor will examine you and also ask you questions about your symptoms: what they feel like, when they happen, what foods you were eating when they happened, and how long symptoms last.
• Upper endoscopy. This is a test where a flexible tube with a camera at its tip is gently inserted into your mouth and down your throat to take a look at the inside of your esophagus to see if there is irritation and swelling. That might sound uncomfortable, but don’t worry: You will be given medication, anesthesia, so you are asleep and comfortable during the procedure. A doctor called a gastroenterologist — a specialist in the care of digestive diseases and conditions — will perform the endoscopy and also remove a tiny bit of tissue from several areas in your esophagus (biopsy) so that the number of eosinophils can be counted. A high number of eosinophils in the samples — doctors will look for 15 eosinophils per high-power field — suggests EoE. Learn more about what to expect during an endoscopy.
• Allergy testing. You may have skin prick testing or blood tests to check for other allergic conditions and to see if other testing is required. With skin prick testing, your skin is exposed to possible allergy-causing substances using a small tool that pricks the surface of your skin, and a doctor or nurse sees how your skin responds. Remember, EoE is officially diagnosed by endoscopy and biopsies. Allergy testing through blood or skin pricks are not used to diagnosed EoE. They also do not determine exactly which food or environmental factor may be triggering your EoE symptoms. There are new tests being developed now to help find food and environmental triggers of EoE.

There is no known “cure” for EoE, so it needs lifelong management. Several types of health care providers may help you manage EoE. These include, but aren’t limited to, those who specialize in gastroenterology, allergy/immunology, nutrition, and mental health to help you cope. Living with a chronic condition may make you feel frustrated, disappointed and angry. These are all normal feelings and it’s okay to speak up about them. If you have a hard time coping with these feelings, talk to one of your health care providers.

There is no one-size-fits-all treatment for EoE. Your health care providers will work with you to create a treatment plan for your needs. Your plan may include a mixture of medications and dietary changes, as well as follow-up endoscopies and biopsies to see how you are responding to treatment. Common ways to treat EoE include:

• Medications. Your doctor may prescribe a number of medicines to help control symptoms. One example is a “proton pump inhibitor” (PPIs). It’s the same medicine that is used to treat chronic heartburn (reflux). They are pills that are available both over the counter and with a prescription that reduce the production of acid in your stomach and reduce swelling in your esophagus. You may see the PPI names omeprazole, omeprazole with sodium bicarbonate, esomeprazole, lansoprazole, rabeprazole, pantoprazole, or dexlansoprazole. Another type of medicine is a corticosteroid medication that you inhale through your nose a swallowed steroid that coats the lining of your esophagus and reduces the swelling. A new type of biologic medicine called dupilumab is also available to treat EoE and is given as an injection. It targets certain allergic factors to help stop inflammation and is now approved by the FDA for EoE. Your doctor can let you know if this medicine is right for you.
• Elimination diet. This is one option for EoE treatment and also a way to try to identify the food or foods that may cause your EoE. Your health care team will ask you to stop eating certain food groups and then gradually start eating each one again, to determine how they affect your symptoms. This is called an “empiric elimination diet.” The most common food groups that are taken away and then re-introduced include milk, wheat, eggs, soy, and sometimes nuts and shellfish. You will work with your provider to select the food or food groups to eliminate up front. This process requires that endoscopy be performed not only after eliminating the foods (to see if the diet has worked and your esophagus has healed), but again after each food is re-introduced, to see how it affects your esophagus and figure out which foods are actually EoE triggers.
• Dilation. Some people with EoE develop a narrow esophagus, which makes swallowing uncomfortable. In some cases, a gastroenterologist may recommend a type of procedure called a dilation where a physician stretches the esophagus so that food can pass through more comfortably. Dilations are not permanent.
• Feeding tube. In rare cases, it is not possible to receive needed food and nutrition by eating and swallowing. In those cases, doctors may recommend a feeding tube. It is placed into the stomach so a special formula can go directly to the stomach without needing to swallow it.

You may find the following resources to be helpful for information and support

Online Resources and Communities

The American Partnership for Eosinophilic Disorders (Apfed) offers extensive online resources for people living with EoE. There is a special page for kids, a dedicated page for teens, information about middle and high school accommodations, and guidance on managing EoE at college.

The Campaign Urging Research for Eosinophilic Disease (CURED) provides valuable, reliable online resources, including stories from people living with EoE.

The EoSNetwork is a charity in the UK that provides resources for people living with EoE and other eosinophilic diseases.

Food Allergy Research & Education (FARE) provides resources for people living with food allergies.

Books

Danielle Travis. My Real-World Guide for Eosinophilic Esophagitis: A Guide to Helping Children, Parents, and Anyone Else Navigate Through the Thoughts and Feelings Associated with Eosinophilic Esophagitis.

Scott Sicherer. Food Allergies: A Complete Guide for Eating when Your Life Depends on It.

Robert A. Wood and Joe Kraynak. Food Allergies for Dummies.

Vesanto Melina, Dina Aronson and Jo Stepaniak. Food Allergy Survival Guide: Surviving and Thriving with Food Allergies and Sensitivities.

Marianne Barber. The Parents’ Guide to Food Allergies: Clear and Complete Advice from the Experts on Raising Your Food-Allergic Child.

How can I manage my EoE at school?

In middle school and high school, your parent/guardian can help communicate to the school what special needs or accommodations you might need. Examples of special needs/accommodations that can be arranged through the school include but aren’t limited to:

• How medicine will be stored and accessed.
• How food and drink will be provided, served and accessed.
• Any special accommodations for school-sponsored field trips and extracurricular activities.
• Arrangements for homework, assignments and tests if more time is needed.
• Ensuring confidentiality of your medical condition.

I’m getting ready to go away to college. What should I do as a person with EoE?

Before you leave home for college, make sure you have:

• A full set of medications, complete with prescriptions for refills.
• A plan for covering the cost of your medications.
• Copies of your health insurance card, medical records and care plan.
• Your next medical appointment scheduled.
• An emergency plan should you need urgent care while you are away at school. Your plan should also indicate whether or not your medical information can be shared with your parents or caregivers. Put together a comprehensive medical history that includes your diagnosis, names and doses of medications, food and other allergies, prior surgeries, and names and contact information for your doctors. This way if you have a medical emergency or issue, you won’t need to call home to get it.

Also speak with officials at your college regarding your personal needs, such as dietary modifications and access to safe foods in your dining hall. Consider having a mini fridge in your dorm room so you can stock safe foods that the dining hall does not supply, or you may want to have after dining hall hours.

You may wish to check out online materials about living on your own, managing dietary needs, and handling urgent issues while away at college.

How should I transition from pediatric to adult EoE care?

As teens become independent adults, they transition into being responsible for their own health care. This involves changing doctors from those who treat children to ones who treat adults. Generally, this happens between the ages of 18 and 21, depending on your provider. There are several things you can do to start taking care of your own health, such as:

• Checking in yourself when you arrive for an appointment, rather than letting your parent or caregiver do it.
• Making sure you understand what your medications do and when and how to take them.
• Planning for how you will eat when you are away from home, if you are on a special diet, and/or learning how to read ingredient labels and prepare your own food.
• Participating in conversations with your parents/caregivers and your doctor so you know and understand what is going on with your health.
• Learning how to schedule your own medical appointments and how to fill/pick up prescriptions.
• Learning how to get to appointments on your own and becoming comfortable with talking to your health care providers by yourself.

For example, your doctor or health insurance company may want to speak only with you, and you will need to allow your parents or caregivers access to your health information if you are comfortable with them having it. Talk with a member of your care team to learn more about your personal situation. Help is there for you to make this transition as smooth as it can be. Your goal is to connect with an adult care physician who can be a long-term care partner for years to come.

See more answers to common EoE questions on our FAQ page.