Eosinophilic esophagitis (EoE) is a newly recognized disease that is associated with soreness and swelling of the esophagus (the swallowing tube between the mouth and stomach). The swelling is due to inflammation from eosinophils which are not usually found in the esophagus.
What are eosinophils?
Eosinophils are white blood cells which are also referred to as “allergy cells” since they are frequently associated with allergic inflammation. Eosinophils are not usually found in the esophagus, but can be found in other parts of the digestive system or gut because they can help fight infections from parasites as well.
What are the symptoms of EoE?
- Stomach pain
- Chest pain
- Problems with swallowing
- Food getting stuck in the esophagus
- Poor growth or weight loss
- Reflux symptoms (such as heartburn, vomiting or acid taste) not helped with reflux medicines
How do I find out if my child has EoE?
The only way to find out if your child has the allergy cells in the esophagus is to do an endoscopy (a test under anesthesia using a light with a camera to look into the esophagus) and take biopsies (tissue samples) from the esophagus. This has to be done by a Gastroenterologist, also known as a GI doctor (a doctor who specializes in problems of the stomach).
Why would my child need to see an Allergist?
EoE may be caused by food allergies, airborne allergies (like pollen), and/or reflux. Allergists are doctors that take care of allergies, including food allergies. They can help find out if food allergies or airborne allergies are causing your child's EoE.
How do you treat EoE?
There are two main ways to treat EoE: dietary treatment (change in diet) or medical treatment (taking medicines).
What does “dietary treatment” for EoE involve?
Since EoE can be caused by food allergies, the Allergists may do allergy testing to find out if your child is allergic to any foods. If they find possible food allergies, they may recommend that your child stop eating those foods. This is called the elimination diet. Another option is to only drink a specialized formula and not eat at all. This is called the elemental diet. There are 2 types of diets that Allergists use for EoE patients- the elimination diet and the elemental diet.
What is the elimination diet?
The elimination diet is a restricted diet. Your child may be asked to avoid particular foods that may be causing the eosinophils to be present in the esophagus. These food allergies are usually identified by Allergists doing different types of allergy testing. If your child is allergic to many foods which need to be eliminated, a dietitian will help make sure your child is getting the necessary appropriate nutrition.
What is the elemental diet?
The elemental diet consists of a hypoallergenic highly specialized, nutritionally complete formula as the only source of food. These formulas have amino acids which are the building blocks of proteins so there are no whole or partial proteins that may lead to food allergy and hence, EoE. They also have fats, sugars, vitamins and minerals to provide all of the calories and nutrition your child needs. The elemental diet may be used if the elimination diet does not work. In some instances, patients on the elimination diet may have so many food restrictions, that they may require this formula as a supplement to meet all of their nutritional needs.
What does “medical treatment” involve?
Because reflux can cause EoE and EoE can cause reflux symptoms, we usually recommend our patients take medications for reflux. Sometimes we may give medications to help with symptoms of food getting stuck in the esophagus. This may include steroids by mouth (but only for a brief period) or a steroid inhaler used for asthma that the child swallows instead of inhales. After the swallowed steroid is given for 3 months, the Gastroenterologist may want to repeat the endoscopy to see if the eosinophils are still present.
What happens at an EE clinic visit?
Typically, the EoE clinic visit involves 3 days (Monday, Wednesday, and Thursday). On Monday, after speaking with your Gastroenterologist, the Allergist will ask you several questions about what type of symptoms your child has with particular foods and then perform a physical exam. To find out if your child has any food allergies, he or she will undergo allergy testing. First, we do skin testing to different foods like milk, egg, soy, wheat, beef, chicken, rice, peas, etc. Skin testing is not done with a needle, but with small prongs on the surface of the skin. It only takes 15 minutes to get the results. Sometimes we have to do blood testing as well to confirm the skin test results. We also do patch testing and this test takes a little longer to find out the results.
What is patch testing?
Because skin testing and blood testing do not diagnose all of the food allergies a patient with EoE has, we will also place patch testing on your child on Monday. Patch testing is a delayed type of testing and involves putting food in aluminum disks or cups on your child's back with tape and then leaving them there for 2 days. After 2 days (on Wednesday morning) your child would come back to clinic to have the patches removed from the back. The next day (on Thursday morning) your child would come back one more time to actually have patch test sites read and reviewed.
Why are there 3 types of allergy testing for food allergies in EoE?
The 3 types of food allergy testing for EoE are skin testing, blood testing and patch testing. All patients should try to have skin testing and patch testing. In some instances, the Allergist may also recommend blood testing to confirm the results of skin testing. All of these forms of testing may be required to identify all of the possible food allergies in a patient with EoE.
Once the Allergist figures out all of the food allergies that your child may have, we would discuss how to avoid those foods. Our dietitian is usually involved in the process to make sure your child is still meeting nutritional needs. After avoiding the foods for at least 3-6 months, the Gastroenterologist may want to repeat the scope to see if the allergy cells have gone away. If they have, your child would return to the Allergist to discuss how to go about reintroducing those particular foods back into the diet.
How are foods reintroduced into the diet?
Some foods may be reintroduced into the diet after a normal biopsy. Usually, one new food is added per week at home while watching your child for any symptoms to come back. We will provide you with a food diary to monitor the symptoms. One or more endoscopies with biopsy may need to be performed during this process to check for inflammation. The Allergists may want to re-add some foods by first performing a food challenge in the hospital to make sure no serious allergic reactions occur.
Can EoE come back?
Yes, after foods are reintroduced into the diet, EoE can come back which is why the Gastroenterologist may need to perform endoscopy with biopsy periodically when foods are being reintroduced.
Do children ever outgrow EoE?
Some children may outgrow EoE and their food allergies, but others may only partially outgrow it and may still have some food allergies. There are also some children who may not outgrow the EoE. It is hard to determine which children will outgrow EoE and which children will not.
What are the long-term effects of EoE?
Some children may not completely outgrow their EoE and food allergies so they will continue to be followed by the Gastroenterologists and Allergists. Regardless, your child should be able to lead a normal life. We don't know all of the long-term effects of EoE, but studies do not show that these children develop cancer of the esophagus. If not treated, patients may develop strictures (narrowing or tightening of the esophagus) that cause swallowing difficulties.
What should I do if I think my child has EoE?
If you think your child may have EoE, contact your primary care physician and discuss your child's symptoms. He or she may decide to refer your child to a Gastroenterologist and/or Allergist.
Resources for EE patients and their families
Food Allergy and Anaphylaxis Network (FAAN)
10400 Eaton Place, Suite 107
Fairfax, Virginia 22030-2208
FAAN is a nonprofit organization with a mission to increase public awareness about food allergy and anaphylaxis, to provide education and to advance research on behalf of those affected by food allergy
Kids with Food Allergies
73 Old Dublin Pike, Ste 10, #163
Doylestown, PA 18901
FAX (215) 340-7674
Kids with Food Allergies is a national nonprofit food allergy organization dedicated to fostering optimal health, nutrition, and well-being of children with food allergies by providing education and a caring support community for their families and caregivers.
American Partnership For Eosinophilic Disorders (APFED)
P.O. Box 29545
Atlanta, GA 30359
APFED is a non-profit organization dedicated to patients and their families coping witheosinophilic disorders. APFED strives to expand education, createawareness, and support research while promoting advocacy among its members.
Washington D.C. Area Eosinophilic Connection (WAEC)
WAEC is a locally based support group dedicated to providing support and information for families in the Virginia, D.C., or Maryland areas living with eosinophilic disorders.