Zollinger-Ellison syndrome

Overview

Gastrin tumors (gastrinomas) usually grow in the pancreas or small intestine.

Some people have an inherited condition called MEN1.

Symptoms

Common signs:

• Severe ulcers
• Burning or gnawing stomach pain

Less common

• Diarrhea
• Heartburn
• Weight loss

When to get medical care

Causes

Tumors.

Does it spread or run in families?

• It isn't contagious. You can't catch it from someone else.

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• Gastrin test:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Take acid reducers every day
• Take acid-blocking medicine every day as prescribed
• Avoid NSAIDs

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a gastroenterologist (stomach and gut doctor).

Living with it

Support groups and helplines

• Genetic and Rare Diseases Information Center (GARD): Free NIH information on rare diseases, including where to find experts and patient groups.
• National Organization for Rare Disorders (NORD): Patient groups, help finding care, and aid programs for rare diseases.

Children, pregnancy, and older adults

• People with MEN1: Higher risk.
• Adults 30 to 50: Most common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

Outlook

Acid reducers control symptoms well.

Medicine controls acid for most people.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• Should I be tested for MEN1?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Zollinger-Ellison syndrome