• Eosinophilic esophagitis (EoE) is an illness found in the esophagus (the tube that links your mouth and stomach).
• EoE is the result of an allergy to certain foods (which are not the same for all people).
• It occurs when a type of white blood cell, the eosinophil, builds up in the esophagus, causing irritation and scarring of the esophagus.
• EoE may cause trouble swallowing, heartburn and food getting stuck in the throat.
• Infants, children and adults can all have EoE.
• EoE is a lifelong health issue.
• A gastroenterologist can do tests to see if you have EoE.
• Caring for EoE means figuring out what foods cause a harmful reaction or using certain medications to control the disease.

Symptoms

Symptoms of EoE are not the same from one person to the next. Below are some common symptoms and in what age group they are most likely to happen.

Finding out you have EoE can only be done by an endoscopy and taking small tissue samples of the esophagus (the tube that links your mouth and stomach).

Endoscopy

• An endoscopy is done to get a small piece of the tissue (biopsy) from your digestive tract to look at under a microscope to see if there is damage.
• You will be given medicine to help block pain and make you relaxed and sleepy.
• During the endoscopy, your gastroenterologist will use a long, thin (about the width of your little finger), flexible tube with a tiny camera and on the end.
• The tube is passed through the mouth and esophagus into the small intestine as your gastroenterologist does a careful exam.
• Ask your doctor for more information about endoscopy.

After the endoscopy, a doctor will test the tissue samples. If a large number of eosinophils, the type of white blood cells that can cause EoE, are found in the tissue, it is likely that you have EoE.

Next steps

• If your tissue sample says you have EoE:
  • Your gastroenterologist will talk with you about the best next steps for you. Possible options may be:
    • Your GI doctor will give you information on diet and medicine options.
    • Your GI doctor may put you in touch with a registered dietitian (RD) to help you learn more about food tests and elimination diets that could help.
• If your tests do not show EoE, some choices your doctor may give you are:
  • Tracking your symptoms (try the MyGIHealth® App).
  • Tracking your diet.
  • Considering other tests and medications.

The three main choices to care for your eosinophilic esophagitis (EoE) are changes to your diet, using certain medications and esophageal dilation. Along with your GI doctor, you also need to see an expert registered dietitian (RD) for this condition. Your GI doctor and RD will talk with you about which choices are best for your case of EoE.

EoE diet

There are a few diet options that could help you care for your EoE. Do not start any of these diets unless your doctor or RD tells you to do so:

• Targeted elimination diets — Foods that test positive on allergy testing are removed from the diet.
• Food elimination diet — This type of diet has shown success in some patients. Instead of getting rid of foods based on allergy testing results, patients get rid of common allergy-causing foods (milk, eggs, wheat, soy, peanuts/tree nuts, and fish/shellfish).
• Elemental diet — All sources of protein are removed from the diet and the patient drinks only an amino acid formula. Sometimes, a feeding tube may be needed.
• Food trial — Specific foods are removed from the diet and then added back one at a time to figure out which foods cause a reaction.

Diet management involves repeat endoscopies with tissue sample as foods are reintroduced to find out which foods are tolerated.

EoE medications

As of now, the FDA has not approved any drugs for the treatment of EoE. However, some doctors have found these to help ease the pain of EoE in certain patients:

• Topical steroids — These are swallowed from an asthma inhaler or a mixture to control EoE.
• Acid suppressors — These may help ease reflux symptoms in some patients in combination with dietary therapy or drugs.
• Proton pump inhibitors (PPIs) — These are most often used for reflux, but can be helpful in EoE.

Esophageal dilation

In some patients, there may be scarring and narrowing of the esophagus (the tube that links your mouth and your stomach) that diet therapy or medications may not treat. As a result, some patients may need to have this area of their esophagus “stretched.”

• Esophageal dilation (stretching) can be done at the time of an endoscopy.
• Often, a balloon is inserted through the flexible tube and then blown up in the area of narrowing to stretch this area open.
• This can be helpful in relieving the sense of food sticking with swallowing.
• Doing this procedure has a small risk that bleeding may occur or a hole could develop in the esophagus (perforation). Rarely, these complications need to be treated with surgery.

Still having symptoms?

Even with a firm answer, it can feel frustrating, or even scary, to keep having symptoms. The first question to think about is:

• If you are following specific food restrictions or plans, are you consuming the allergen by mistake?

If you are on either a food management plan or drugs, and your symptoms have been there for at least six months, you should speak with your GI doctor about trying both at once to help your EoE symptoms or about other options you may have.

Newly diagnosed

For some, hearing that they have EoE is a relief, a reason for their symptoms and a light at the end of the tunnel. For others, it can be scary and daunting. Many will have a mix of feelings. All of this is completely normal. No matter what you may be feeling upon hearing you have EoE, know that you are not alone. If you are getting overwhelmed by your new diagnosis, don’t wait to reach out to a mental-health expert to talk through the changes. Working with your health-care team (GI doctor, nutritionist, allergist), you can make a health and nutrition plan just for you, to help put you in control of your symptoms and your life.

Additional resources

There are a number of support groups for caregivers and patients with EoE. Reach out to your GI doctor, registered dietitian, local hospital or community center for more details. American Partnership for Eosinophilic Disorders (APFED) is a trusted resource for adult, child and teen patients, caregivers, health-care providers and researchers. www.apfed.org

• In some patients, EoE is made worse by the progress of esophageal narrowing (strictures), which may cause food to lodge in the esophagus (the tube that links your mouth and stomach), which is called impaction.
  • This can also make eating very hard and painful for children and adults.
• Sometimes, an emergency upper endoscopy must be done to remove the food that is lodged and obstructing the esophagus.

Try using the MyGIHealth® app to keep track of your symptoms.