Eosinophilic enteropathy

How is eosinophilic gastroenteritis diagnosed?

Endoscopy and biopsy is the only way to confirm the diagnosis of eosinophilic gastroenteritis. During an endoscopy, a gastroenterologist looks at the gastrointestinal tract through an endoscope and takes multiple small samples (biopsies), which a pathologist reviews. A high number of eosinophils suggests the diagnosis of eosinophilic gastroenteritis. The pathologist will also look at the location of the eosinophils, changes in the tissue layers, and degranulation (spilling of the contents of the eosinophils). Eosinophils may be normally found in small numbers in all areas of the gastrointestinal tract except the esophagus. However, the number of eosinophils seen in individuals with eosinophilic enteropathy is much higher. Once the diagnosis of eosinophilic enteropathy is confirmed, food allergy testing is typically recommended to guide treatment. Tests for food allergies include skin prick testing, patch testing, and a Radioallergosorbent test (RAST).

Last updated on 05-01-20

How might eosinophilic gastroenteritis be treated?

There is no "cure" for eosinophilic gastroenteritis, but treatment can help alleviate symptoms and prevent further damage to the gastrointestinal tract. Treatment of eosinophilic enteropathy varies based on the location of the eosinophils, severity of symptoms, and other medical problems the child or adult may have. In most cases, dietary restrictions and medications can significantly improve the problematic symptoms of this condition.

Food allergy testing is used as a guide for restriction or elimination diets. An elimination diet means strictly avoiding all foods to which the patient has tested positive on allergy testing. Skin and patch testing are used to guide elimination diets.

Sometimes a stricter diet, called an elemental diet, is needed. Skin and patch testing are used to guide elimination diets, but it only takes one false negative food for the diet to "fail". Elemental diets are diets that do not include whole or broken-down forms of protein. Instead, special elemental formulas are used, which are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

Children and adults who rely in part, or completely, on an elemental amino acid based formula may have a difficult time drinking enough of the formula. To maintain proper nutrition, some require tube feedings directly into the stomach (enteral feeds). In the most severe cases, nutrition is administered directly into the blood stream (parenteral feeds).

The American Partnership for Eosinophilic Disorders provides more information about treatment for eosinophilic gastroenteritis. This organization also provides more details on restricted or elimination diets and elemental diets.

Last updated on 05-01-20

Patient Registry

RDCRN - Consortium of Eosinophilic Gastrointestinal Disease Researchers

The Consortium of Eosinophilic Gastrointestinal Disease Researchers is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research on eosinophilic esophagitis, eosinophilic gastritis, and eosinophilic colitis. The Consortium has a contact registry for patients who wish to be contacted about clinical research opportunities and updates on the progress of the research projects.

For more information on the registry see: https://www.rarediseasesnetwork.org/registry/index.htm

Last updated on 04-27-20

Name: American Partnership For Eosinophilic Disorders PO Box 29545
Atlanta, GA, 30359, United States
Phone: 713-493-7749 Email: mail@apfed.org Url: http://www.apfed.org
Name: International Eosinophil Society 555 East Wells Street, Suite 1100
Milwaukee, WI, 53202, United States
Phone: 414-276-6445 Email: info@eosinophil-society.org/ Url: http://www.eosinophil-society.org/
Name: Cincinnati Center for Eosinophilic Disorders United States Phone: 513-636-2233 Toll Free: 800-344-2462 Email: cced@cchmc.org Url: http://www.cincinnatichildrens.org/service/c/eosinophilic-disorders/default/
Name: American Autoimmune Related Diseases Association (AARDA) 22100 Gratiot Avenue
Eastpointe, MI, 48021, United States
Phone: 586-776-3900 Toll Free: 800-598-4668 Fax : 586-776-3903 Email: aarda@aarda.org Url: https://www.aarda.org/
Ana Rath and Stéphanie NGUENGANG WAKAP. Prevalence of rare diseases: Bibliographic data », Orphanet Report Series, Rare Diseases collection, January 2020, Number 2 : Diseases listed by decreasing prevalence, incidence or number of published cases Orphanet Report Series - Prevalence of rare diseases: Bibliographic data - January 2020 - Number 2. January 2020; Number 2. 64. Reference Link Orphanet Reference Link

Connect with other users with Eosinophilic enteropathy on the RareGuru app

Do you have information about a disease, disorder, or syndrome? Want to suggest a symptom?
Please send suggestions to RareGuru!

The RareGuru disease database is regularly updated using data generously provided by GARD, the United States Genetic and Rare Disease Information Center.

People Using the App

Join the RareGuru Community

To connect, share, empower and heal today.

People Using the App