Living with Zollinger-Ellison syndrome
A condition where tumors in the pancreas or small intestine cause too much stomach acid, leading to ulcers and belly pain.
Understanding Zollinger-Ellison syndrome
The tumors, in the pancreas and duodenum (part of the small intestine), raise levels of the hormone gastrin. The extra acid can cause belly pain, ulcers, vomiting blood and diarrhea. The tumors are sometimes cancerous and can spread. GARD lists onset in adults and older adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Belly pain that comes and goes
- Ulcers in the stomach or duodenum
- Diarrhea
- Nausea
- Inflamed esophagus (esophagitis)
- Weight loss
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include cancer specialists, digestive system specialists and hormone specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Cancer specialists (oncologists); Digestive system specialists (gastroenterologists); Hormone specialists (endocrinologists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Association for Multiple Endocrine Neoplasia Disorders and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
In most cases, GARD says the cause is unknown. About 25 to 30 percent of gastrinomas are caused by an inherited condition called multiple endocrine neoplasia type 1 (MEN1).
Also known as: excessive gastrin secretion; gastrinoma; pancreatic ulcerogenic tumor syndrome; z e syndrome; ze - zollinger-ellison syndrome; zes
Patient organizations
- Association for Multiple Endocrine Neoplasia DisordersZollinger-Ellison syndrome · United States
- Pancreatic Cancer Action NetworkPancreatic tumors · United States
- American Cancer SocietyPancreatic tumors · United States
You are more than your diagnosis
Perspectives from people navigating life with Zollinger-Ellison syndrome.
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