Eosinophilic gastrointestinal diseases (EGIDs) are inflammatory conditions in which large numbers of eosinophils (a type of white blood cell that is part of the body’s immune system) infiltrate and accumulate in the gut (gastrointestinal tract), causing inflammation and tissue damage.¹ This may be due to an allergic response to food, environment, or other unknown triggers. EGIDs can occur in various parts of the, resulting in the different conditions.^1,2 Symptoms will depend on the type of EGIDs.¹

According to the 2022 International consensus for EGID terminology:²

• Eosinophilic oesophagitis (EoE) involves the oesophagus
• Eosinophilic gastritis (EoG) involves the stomach
• Eosinophilic enteritis (EoN) involves the small bowel/intestine;
• Eosinophilic duodenitis (EoD) involves the duodenum
• Eosinophilic jejunum (EoJ) involves the jejunum
• Eosinophilic ileitis (EoI) involves the ileum
• Eosinophilic colitis (EoC) involves the colon/large intestine

EoE is the most commonly known EGID, but there is increasingly more awareness of and research into the non-EoE EGIDs.^1,2 In the past, the term ‘eosinophilic gastroenteritis’ has been widely used in a non-standardised manner, often to represent when any part of the gastrointestinal tract is affected, resulting in confusion in clinical and research settings.² It is now recommended that the term ‘eosinophilic gastroenteritis’ is only used for the condition in which both the stomach and small bowel/intestine are involved and ‘EGID’ should instead be used as the umbrella term for ‘diseases of the GI tract with pathologic eosinophilic infiltration in the absence of secondary causes’.²

There are no known synonyms.

Universal rare disease classifications provide a common language for recording, reporting and monitoring diseases. Please visit the Rare Disease Classifications page for more information about these internationally recognised classifications.

ORPHA:402029 Primary eosinophilic gastrointestinal disease

There is no ICD:11 classification.

The symptoms of EGIDs may vary depending on which part of the gut is affected.^1,3

Individual pages for these specific EGIDs will be added to the RARE Portal in time.

Please speak to your medical team to learn more about the signs and symptoms of a particular type of EGID.

Rare diseases are often serious and progressive, exhibiting a high degree of symptom complexity, leading to significant disability. Majority of the estimated two million Australians living with a rare disease meet the Australian Government’s definition for disability (in accordance to the Australian Public Service Commission and Australian Bureau of Statistics), and many experience severe and permanent disability impacts. If you or someone you care for is experiencing disability-related impacts from a rare condition, please speak with a health or disability professional for advice. Information about relevant disability support can be found at the RARE Portal’s Disability Support Information page.

The cause of EGIDs is not well-understood, but is thought to be caused by an allergy to food.³

Diagnosis of an EGID should be considered in the presence of gastrointestinal symptoms with no obvious cause.³ An endoscopy is usually performed by a gastroenterologist and involves the insertion of an endoscope (a tube with a light and attached camera) to examine the gastrointestinal tract.¹ Tissue samples (biopsies) are often taken to identify if there is accumulation of eosinophils (a type of white blood cell). Other possible causes of the gastrointestinal symptoms and increased presence of eosinophils will also need to be ruled out.³

Please speak to your medical team to learn more about the available diagnostic pathways for EGID.

EGIDs are chronic conditions that require ongoing management monitored by a multidisciplinary medical team.¹ This may include medication or making dietary changes, such as an elimination diet to identify if the EGID is caused by a food allergen, which should only be done with advice from medical professionals.

Please speak to your medical team to learn more about the possible treatment or management options for your condition. Treatment will depend on an individual’s specific condition and symptoms. It is also important to stay connected to your medical team so that you can be made aware of any upcoming clinical trial opportunities.

Clinical care for rare diseases often involves a multidisciplinary team of medical, care and support professionals. Please note that the information provided here is as a guide and that RVA does not necessarily monitor or endorse specific clinics or health experts.

Healthcare professionals involved in the treatment of EGIDs may include general practitioners (GP), gastroenterologists (stomach/bowel medical specialists), clinical immunology/allergy specialists and specialist dietitians.² The need for different healthcare professionals may change over a person’s lifetime and extend beyond those listed here.

General clinical care guidelines for EGIDs as a whole are yet to be developed in Australia, but the following guidelines and recommendations are available:

• Clinical care guidelines specific for Eosinophilic Oesophagitis (EoE) can be found at Eosinophilic Oesophagitis (EoE).
• For non-EoE EGIDs, there is the Joint ESPGHAN/NASPGHAN Guidelines on Childhood Eosinophilic Gastrointestinal Disorders beyond Eosinophilic Esophagitis developed by a taskforce made up of medical specialists from various countries, including from Australia
• International Consensus Recommendations for Eosinophilic Gastrointestinal Disease Nomenclature, which involved participation from Australian experts, contains important clarification about the nomenclature of EGIDs for clinical settings
• Australia’s National Allergy Strategy to improve the health and quality of life of Australian with allergic diseases

Individuals living with rare diseases may have complex medical issues and disabilities, which are not always visible. It is often useful to refer to their medical history as well as personal information such as a medical card, doctor’s letter, or if available, a rare disease passport, for relevant information.

ausEE Inc.: Research has information about research on eosinophilic diseases in Australia.

There are specific considerations around participating in rare disease research, including clinical trials. It is important to be mindful of issues such as data privacy, research ethics, consent and differences in research regulations between Australia and other countries.

If you are interested in finding clinical trials for your condition, please visit the following websites; however, there may not be any clinical trials available:

• Australian Clinical Trials
• ClinicalTrials.gov

It is best to discuss your interest in any clinical trials with your medical team to determine suitability and eligibility.

Please note that RVA does not necessarily monitor or endorse each group/organisation’s operational governance and activities.

Australian Organisation:

ausEE Inc.
Website: https://ausee.org

ausEE Inc. is Australia’s peak national support and patient advocacy organisation representing Australians living with an eosinophilic disease, including EGPA and eosinophilic gastrointestinal diseases (EGIDs). ausEE’s mission is to improve the lives of those affected by eosinophilic diseases through providing support, evidence-based information, resources, advocacy and by campaigning to raise awareness and funds for research in Australia.

Please note that RVA does not monitor or endorse each group/organisation’s operational governance and activities. When engaging with a group, please consider the information on the RARE Portal’s Finding Helpful Peer and Community Supports page.

EGID varies between individuals, and each person’s experience is unique.

Please visit ausEE Inc. (EOSaware): My EGID Stories to read the personal stories of people living with EGID.

If you would like to share your personal story with RVA, please visit the Rare Voices Australia: Share Your Story page. RVA will consider your story for publishing on our website and inclusion on the RARE Portal.

ausEE Inc. offers support programs, including for peer support.

For information on available government and social services that provide support for individuals with a rare disease, please visit the National and State Services pages.

People living with a rare disease, including families and carers, often face unique challenges such as diagnostic delays, misdiagnoses, limited treatment options, and limited access to rare disease specialists and support. These challenges may impact people’s emotional wellbeing and quality of life. Many people find it helpful to seek mental health and wellbeing support to cope with ongoing stress and uncertainty. Connecting with people who have shared experiences through a support group may also be helpful. Information about relevant mental health and wellbeing support can be found at:

• Mental Health and Wellbeing Support for Australians Living with a Rare Disease
• The National and State Services pages underneath the ‘Mental Health’ sections listed

Further information on allergies in general can be found at:

• Australasian Society of Clinical Immunology and Allergy (ASCIA)
• Allergy & Anaphylaxis Australia (A&AA)
• National Allergy Council

• International Consensus Recommendations for Eosinophilic Gastrointestinal Disease Nomenclature
• Joint ESPGHAN/NASPGHAN Guidelines on Childhood Eosinophilic Gastrointestinal Disorders beyond Eosinophilic Esophagitis
• The Journal of Allergy and Clinical Immunology: Eosinophilic gastrointestinal disorders (EGID)
• ausEE Inc.: Information and Resources for Health Professionals
• National Allergy Council: Shared care for allergy
• National Allergy Council: Allergy Aware – Resources for Health professionals
• Consortium of Eosinophilic Gastrointestinal Disease Researchers: Resources For Researchers and Clinicians

This page has been co-developed by Rare Voices Australia (RVA)’s RARE Portal team in consultation with ausEE Inc.

If you are aware of any additional information that may benefit stakeholders with an interest in this page, or if you notice any broken links or inaccurate information, please let us know via the Contribute page.