Frequently Asked Questions about Eosinophilic Gastrointestinal Disease(s) (EGID)

The cause of EGID is not fully understood, but it is often seen in people that have allergic conditions or a family history of atopy. An immune response to food is typically involved in causing EGID.

No. EGID is not caused by an injury.

EGID is a chronic disease that usually requires long-term follow-up and treatment. It is common for patients to experience periods when the disease flares up and causes symptoms, followed by periods of remission when there are no symptoms experienced.

EGIDs are individualized diseases, and there are variances in triggers that cause flares and symptoms that patients exhibit. Symptoms may vary depending on which subset of an EGID you have, and your age. For example, with EoE, it is more common for children to experience vomiting while adults are more likely to present with difficulty swallowing.

While there are consensus guidelines for the diagnosis and management of EoE, guidelines do not currently exist for EC or EG. However, dietary management and systemic or topical steroids may be prescribed to treat these diseases.

Because EGIDs are often triggered by certain foods, your healthcare provider may prescribe dietary management. This may include elimination diets in which all foods that tested positive on allergy tests are avoided, common allergy-causing food elimination in which likely causative foods are avoided, elemental diet in which a patient drinks only an amino acid formula (or has it delivered via a feeding tube), and food trial in which specific foods are removed from the diet and then added back one at a time to determine reaction.

Currently, there is no evidence indicating a link between EoE and esophageal cancer. With that said, patients with EoE often present with reflux/GERD. It is known that, over time, stomach acid in the esophagus can lead to cell changes that increases risk for cancer.

Proper diagnosis of EGID is made by a gastroenterologist and pathologist. Once diagnosed, it is important to discuss a treatment plan, including medications and/or dietary therapies, as well as the frequency of follow-up care/evaluation. Often, your gastroenterologist will collaborate with other specialists, including the following:

  • Allergist/Immunologist – Allergy testing is often used to help identify food/environmental allergies and guide diet management.
  • Registered Dietitian – Because a diagnosis of EGID usually requires prolonged restriction/elimination of foods from diets, it is recommended that patients/caregivers consult with a dietitian to ensure appropriate calories, vitamins, and nutrients are maintained and that the elimination diet is being performed correctly.
  • Clinical Psychologist – Following diagnosis, it can be helpful for some patients to consult with a psychologist to discuss coping strategies as they adapt to living with/managing a chronic disease.
  • Feeding Therapist – Following diagnosis, it can be helpful for some patients to consult with a feeding therapist to discuss coping strategies as they learn or re-learn ways to eat solid foods.

Although allergy tests can be useful in helping guide diet therapies, these tests may produce either false-positive or false-negative results, and when used alone, are not sufficient to identify specific food triggers that may be causing the increased eosinophil activity driving the disease. Food triggers can usually only be identified following a methodical food trial process, involving the elimination and/or reintroduction of foods, followed by endoscopy/biopsies to confirm disease remission/activity.

The frequency of endoscopic evaluation is part of the individualized treatment plan that you will want to discuss with your gastroenterologist/EGID care team. In some cases, children/adults going through food trials to help identify food triggers have endoscopies performed at varying intervals. A similar interval is common if/when a new medicine is introduced in order to assess its efficacy. Asymptomatic patients, those whose disease is believed to be managed or in remission, may be evaluated when deemed appropriate by their doctor.

Prior to diagnosis, many children with EGID experience delays in growth and development due to poor diets/nutritional deficiencies. Caregivers should work closely with their health care providers to ensure appropriate calories, vitamins, and nutrients are maintained. In some situations, specialized formula taken either orally or via feeding tube may be recommended to ensure your child receives adequate nutrition.

Currently, endoscopy with biopsies is the only reliable method to diagnose and evaluate EGID. Research is underway to develop less invasive methods.

Many individuals with EGID carry on normal daily activities. Some patients, however, experience symptoms that may interfere with school or work. Highly restricted diets can limit participation in social activities that involve food which in turn can create feelings of social isolation. Specialized foods and elemental formulas, missed time from work, associated health care costs and, in some cases, travel for care are costly and can create a financial strain.

Patients with EGID commonly have other allergic diseases such as rhinitis, asthma, and/or eczema, so the patient population as a whole generally has an increased sensitivity to both food and environmental allergens. With that said, the relationship between environment allergens and increased EGID symptoms is not clearly understood. Some studies have indicated seasonal variance in the diagnosis of EoE (i.e., increased diagnoses during spring, summer, and fall months).

The presence of an EGID in the child increases the risk in another child, but the risk still remains low. For EoE, there is about a 2.4% risk of EoE in siblings of an EoE patient.

*This material was developed in collaboration with APFED and CURED, two of CEGIR’s partner Patient Advocacy Groups.