What is eosinophilic esophagitis or EoE?

Eosinophils are a type of white blood cell that play an important role in fighting certain infections in your body. Your esophagus is the tube that connects your mouth with your stomach. Eosinophils are not normally found in your 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 your esophagus when they shouldn’t be there.

You can learn how to take control of EoE.

There is no cure for EoE. It is a lifelong chronic illness. There are things you can do to help yourself feel better. You can still engage with friends and family, go to work, travel…all the things you may want to do. Treating your symptoms and the underlying inflammation are keys 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 usually an allergic reaction to food or something else in your environment. Here are some of the things that increase the chance of developing EoE:

• Food allergies. Eating certain foods can cause EoE symptoms, especially dairy products, eggs, soy and wheat. In contrast to a sudden allergic reaction, repeated exposures to food triggers over time can start a delayed allergic process that leads to EoE symptoms.
• Environmental allergies. Many people with EoE also have allergies to things like pollen, animal dander, mold and/or dust mites. Often people with EoE also have asthma, eczema or other allergies that cause a skin rash.
• Family history. If you have family members with EoE, you may have a higher chance of having it, too.
• Certain early life exposures. Some things, like having to take antibiotics in your first year of life, might also increase the chance of developing EoE later in life.

While a lot of other possible risk factors are being studied, these have not been confirmed for EoE. For nearly everyone with EoE, we do not yet know why the disease starts in an individual patient, but this is an active area of research.

What does EoE feel like?

People with EoE often feel things like:

• Trouble swallowing dry or solid foods or pills, with a feeling like something is stuck in your throat or esophagus is the most common symptom that adults with EoE might notice. This is not normal and should be checked out by your doctor.
• Some people have had symptoms for a long time, and do not always feel that food is going down slowly. Other signs of “trouble swallowing” can be eating very slowly or being the last one at the table, needing to always drink a lot after each bite to help get foods down, dipping foods in sauces to make them easier to swallow, chewing very thoroughly, and even avoiding foods that might be dry or tough in consistency. Some people with EoE have trouble swallowing pills, get anxious about pills, or never were able to swallow them in the first place.
• In some cases, symptoms like heartburn or pain in the chest can be seen with EoE, but these are also seen with many other health conditions.

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.

How is EoE diagnosed?

If you have had symptoms for a while, it can be a relief to find out what has been causing them. If your doctor thinks that you may have EoE, he or she will order certain tests to see what is causing your symptoms. You will most likely have:

• 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 they 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. You will be given medication, 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 your esophagus (biopsy) to have it checked for white blood cells (eosinophils). A high number of white blood cells in your esophagus may mean you have EoE, but not always, so sometimes additional tests are needed. Learn more about what to expect during an endoscopy.

There is no known “cure” for EoE, and currently it needs lifelong management. Several types of health care providers may be part of your health care team to 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.

There is no one-size-fits-all treatment for EoE. Your health care team will create a treatment plan that is customized to 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.

• Medications. Your doctor may prescribe certain medicines to help control EoE. One example is a “proton pump inhibitor” (PPIs), such as omeprazole or esomeprazole. It’s the same medicine that is used to treat chronic heartburn (reflux). They are pills that reduce the production of acid in your stomach, but in EoE they also work to reduce swelling and the number of eosinophils in your esophagus. Another type of medicine is a corticosteroid medication that may be used for asthma (such as fluticasone or budesonide) but is swallowed rather than inhaled to treat EoE. These medicines work by coating and soothing the lining of your esophagus and reduce the swelling. A new type of medicine called dupilumab is also available to treat EoE. Dupilumab is a biologic medicine 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 find 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. Once you know the causes, you would avoid eating those foods over the long term. There are a variety of elimination diets; your care team will let you know which one you may start with. Some people opt to just eliminate one or two foods to start, while others may want to eliminate more.
• Dilation.
• In people with EoE who develop scarring in the esophagus (which is called an “esophageal stricture”) or who are not responding well to other treatments, the gastroenterologist may gently stretch (dilate) the esophagus to let food pass through more easily. This treatment may not be needed in everyone, and it’s important to know that it usually has to be paired with a treatment to reduce inflammation, since the dilation only opens up the esophagus. This procedure is safe to perform in people who have EoE.
• Feeding tube. In rare cases, a person with EoE may need a feeding tube to receive a special diet or formula to get enough nutrition. Some people may also be able to drink the special formula (elemental formula) without needing a feeding tube.

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.

See our FAQ page for answers to common questions about EoE.