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Gilbert's Syndrome: Symptoms, Causes, Tests & Treatment

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Gilbert's syndrome is an inherited (genetic) liver disorder that affects the body’s ability to process bilirubin. Bilirubin is yellow liquid waste that occurs naturally as the body breaks down old red blood cells.

People with Gilbert's syndrome don’t produce enough liver enzymes to keep bilirubin at a normal level. As a result, excess bilirubin builds up in the body. Excess bilirubin is known as hyperbilirubinemia.

Gilbert's syndrome

What is bilirubin?

Bilirubin is found in bile, a digestive liquid produced by the liver that helps the body absorb fat. Your liver is part of the digestive system. It filters toxins from blood, digests fats and stores glucose (a blood sugar) as glycogen to use for energy.

How common is Gilbert's syndrome?

An estimated 3% to 7% of Americans have Gilbert's syndrome. This type of liver disease is more common in males than in females. It affects all ages, races and ethnicities.

Who might have Gilbert's syndrome?

Gilbert's syndrome is genetic, meaning it’s passed down from parent to child through a change, or mutation, in a gene. People with Gilbert's syndrome inherit a mutated UGT1A1 gene.

What causes Gilbert's syndrome?

A healthy UGT1A1 gene makes liver enzymes that break down bilirubin and remove it from the body. People with a mutated UGT1A1 gene only make about 30% of the enzymes they need. As a result, bilirubin doesn’t move into bile the way it should. The excess bilirubin builds up in blood.

What are the symptoms of Gilbert's syndrome?

Approximately 1 in 3 people with Gilbert's syndrome don’t have symptoms. They learn that they have the disease after getting blood tests to check for a different problem.

Among those with symptoms, the most common sign is jaundice, brought on by elevated levels of bilirubin in blood. Jaundice can turn your skin and whites of the eyes yellow, but it isn’t harmful.

Occasionally, people who have jaundice or Gilbert's syndrome also experience:

  • Dark-colored urine or clay-colored stool.
  • Difficulty concentrating.
  • Dizziness.
  • Gastrointestinal problems, such as abdominal pain, diarrhea and nausea.
  • Fatigue.
  • Flu-like symptoms, including fever and chills.
  • Loss of appetite.

What worsens symptoms of Gilbert's syndrome?

These things can raise bilirubin levels in people with Gilbert's syndrome, leading to jaundice:

  • Dehydration.
  • Fasting or skipping meals.
  • Illness or infections.
  • Menstruation.
  • Overexertion (too much physical activity).
  • Stress.

How is Gilbert's syndrome diagnosed?

As a genetic condition, Gilbert's syndrome is present at birth. It often remains undiagnosed until blood tests detect high bilirubin levels. Diagnosis most commonly occurs when people are in their teens or early adulthood and getting blood tests for something else.

In addition to blood tests, you may get:

  • Liver function tests to assess how well your liver is working and measure bilirubin levels.
  • Genetic tests to check for the gene mutation that causes Gilbert's syndrome.

What are the complications of Gilbert's syndrome?

Gilbert's syndrome is a mild condition. It doesn’t cause long-term complications or serious health problems.

How is Gilbert's syndrome managed or treated?

Jaundice can cause a yellowish appearance that may be unsettling. However, jaundice and Gilbert's syndrome don’t require treatment.

How can I prevent Gilbert's syndrome?

Because Gilbert's syndrome is inherited, you can’t prevent it.

What is the prognosis (outlook) for people who have Gilbert's syndrome?

People with Gilbert's syndrome can lead long, healthy lives. They don’t experience long-term health problems from the disease.

When should I call the doctor regarding Gilbert's syndrome?

You should call your healthcare provider if you experience:

  • Chronic gastrointestinal problems.
  • Dark-colored urine or clay-colored stool.
  • Fever and chills.
  • Jaundice (yellow skin or whites of eyes).

What questions should I ask my doctor about Gilbert's syndrome?

You may want to ask your healthcare provider:

  • Why did I get Gilbert's syndrome?
  • Do I need treatment?
  • What steps can I take to prevent jaundice?
  • How long will jaundice last?
  • Should my family members get genetic tests to check for Gilbert's syndrome?
  • Should I look out for signs of complications?
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