Overview
Zollinger-Ellison syndrome (ZES) is a very rare condition that affects your digestive system. It results from a type of tumor called a gastrinoma which may develop in your pancreas and/or duodenum (the top of your small intestine). Gastrinomas produce large amounts of the hormone gastrin, which is what triggers your stomach to produce gastric acid. Too much gastrin leads to too much stomach acid, which can cause ulcers in your stomach and duodenum. ZES is also known as pancreatic ulcerogenic tumor syndrome.
How does Zollinger-Ellison syndrome affect me?
Most people with Zollinger-Ellison syndrome have complications related to too much stomach acid. Common side effects include diarrhea and acid reflux. Most people (90%) will develop ulcers in their stomach and intestines. Severe peptic ulcer disease can be serious. It can cause gastrointestinal bleeding and scarring in your gastrointestinal (GI) tract. Scar tissue can cause an obstruction. In addition, about half of gastrinomas may become cancerous (malignant). Malignant tumors are likely to metastasize or spread.
Who gets Zollinger-Ellison syndrome?
Gastrinomas are estimated to affect between 1 to 2 people per million every year. Most physicians have never seen a case. You’re more likely to get them if you have a family history of multiple endocrine neoplasia (MEN) type 1. About 25% of people with Zollinger-Ellison syndrome have this rare genetic disorder, which causes tumors in various glands throughout your endocrine system. However, most people who get gastrinomas get them for unknown reasons. They’re usually diagnosed in middle age.
What are the symptoms of high gastrin levels in Zollinger-Ellison syndrome?
Not everyone with Zollinger-Ellison syndrome notices the effects of high gastrin levels. Some people with smaller and fewer tumors may have less gastrin and less stomach acid than others. Some people who have ulcers can’t feel them. These are called “silent ulcers.” A small percentage of people experience diarrhea as their first symptom. However, most people experience the classic symptoms of peptic ulcer disease. These can be mild to severe. Common symptoms before complications include:
- Burning or gnawing stomach pain.
- Acid reflux and heartburn.
- Indigestion, especially of fatty foods.
- Greasy, fatty poops or chronic diarrhea.
If you have complications of peptic ulcer disease, you may have other symptoms, such as:
- Symptoms of gastrointestinal bleeding, like blood in your vomit or in your poop.
- Symptoms of anemia from blood loss, like pale skin, weakness and fatigue.
- Esophagitis from acid reflux irritating your esophagus.
- Loss of appetite, nausea, vomiting and weight loss.
Symptoms
When to see a doctor
Complications
- High blood pressure.
- Diabetes.
- Heart failure.
- Some types of heart valve disease.
Prevention
- Control high blood pressure, high cholesterol and diabetes.
- Don't smoke or use tobacco.
- Eat a diet that's low in salt and saturated fat.
- Exercise at least 30 minutes a day on most days of the week unless your health care team says not to.
- Get good sleep. Adults should aim for 7 to 9 hours daily.
- Maintain a healthy weight.
- Reduce and manage stress.
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