About Eosinophilic Gastroenteritis (EGE)
What is Eosinophilic Gastroenteritis (EGE)?
Eosinophilic gastroenteritis is a rare disease in which eosinophils (a type of white blood cell), accumulate in the lining of the stomach and/or intestine causing inflammation, or “gastroenteritis”. This inflammation leads to injury of the stomach and intestine and patients often present with abdominal pain, nausea, vomiting, diarrhea, weight loss and / or poor growth. Some patients may become anemic (low blood counts) and present with fatigue and poor exercise endurance. Other patients may present with malnutrition and have low protein and vitamin levels. Given the rarity of this disease, the number of individuals living with EGE is unknown. Eosinophilic gastroenteritis affects both adults and children. Patients with this disease may also have environmental and/or food allergies. The cause is unknown but it has been hypothesized that food allergies may play an important role in EGE.
How is EGE Diagnosed?
After your doctor completes a thorough history and physical examination, an upper endoscopy is necessary to confirm the diagnosis. Currently, endoscopy is considered the only reliable diagnostic test for EGE. While your child is asleep, your doctor will use a camera that looks like the tubing of a stethoscope to take tiny pinch biopsies from the lining of the esophagus, stomach and small intestine. These specimens are then examined under a microscope to look for inflammation and the presence of eosinophils. An eosinophil is a type of white blood cell that is an important part of the immune system. Eosinophils can be thought of as allergic cells that are typically found in only small quantities in the stomach, intestine and colon. After considering other causes of gastroenteritis, large numbers of eosinophils invading the stomach and intestinal lining are consistent with EGE.
How is EGE Treated?
Because this condition is so rare, there are currently no treatment guidelines for EGE. In most cases, therapy is coordinated with an Allergist to best determine the optimal treatment approach. An Allergist may use skin testing (called “skin prick” and “atopy patch” testing) to help determine if foods should be eliminated from your child’s diet. Avoidance of these allergies is the backbone of therapy for EGE. In children with severe and unresponsive disease, another treatment option includes an elemental diet. With this diet, all sources of protein are eliminated and patients are supported with a broken-down (“elemental”) formula often requiring a feeding tube. Unfortunately, topical steroids, as used in Eosinophilic Esophagitis (EoE), are not useful in EGE. Occasionally, systemic steroid therapy or other anti-inflammatory therapies are necessary to control the inflammation in EGE. Acid blockers may be used to protect the injured stomach from acid damage. Vitamin and mineral supplementation may be necessary and is often directed by a Dietician. As one can imagine, dietary changes can be difficult for a variety of reasons including knowing which foods to eliminate, avoiding nutritional deficiencies, ensuring small amounts of allergic foods are not hidden in other foods and making sure your child is sticking to the diet, among others. These challenges are the very reason that patients and their families often benefit from having a Dietician and occasionally a Psychologist as part of their treatment team.
What can I expect for the future?
The course of this disease is unknown. EGE is thought of as a relapsing and remitting disease whereby the inflammation may return if therapy is discontinued. It is a condition that may affect your child’s diet, cause the need to take daily medication(s), and lead to more frequent doctor’s visits and procedures. There is certainly a wide range of how this disease will affect your child’s daily life, but most of the time, with the use of dietary changes and/or medications, children ultimately live a normal life and return to their usual activities.
Where can I get additional information on EGE?
There are a variety of support networks and resources available for families affected by Eosinophilic Gastrointestinal Disease (EGID). Patient information and support groups include The SEED Center of Atlanta, Inc (www.seedcenteratl.org), The American Partnership for Eosinophilic Disorders (www.apfed.org), the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (www.naspghan.org), the Food Allergy and Anaphylaxis Network (www.foodallergy.org), and GAeos.org (www.gaeos.org). Together, your team of healthcare professionals will help you better understand this condition and connect you with the available support and resources that will help your child and family thrive.