Eating, Diet, & Nutrition for Alagille Syndrome

How does Alagille syndrome affect nutrition?

In Alagille syndrome, the reduced flow of bile to the small intestine may cause problems with digesting fats and absorbing fat-soluble vitamins such as vitamins A, D, E, and K. These problems may cause malnutrition and play a part in causing complications such as bone problems, growth problems, delayed puberty, or failure to thrive.

What should people who have Alagille syndrome eat?

Getting enough nutrients is important for people who have Alagille syndrome, especially infants and children. Getting enough nutrients can help a child with Alagille syndrome grow as much as possible. If you or your child has Alagille syndrome, talk with a doctor or dietitian about a healthy eating plan.

Doctors and dietitians may recommend

• a high-calorie diet that contains carbohydrates and fats called medium-chain triglycerides (MCTs), which are easier for people with Alagille syndrome to digest
• a special formula for infants that contains MCTs
• regular checks of weight and height, the measures of growth and development during childhood
• regular blood tests to check vitamin levels and separate supplements of fat-soluble vitamins A, D, E, and K and other nutrients as needed

In some cases, children with Alagille syndrome can’t eat enough food to get the energy needed for growth. A doctor may recommend using a feeding tube to carry nutrients directly to the child’s stomach. The feeding tube may be a nasogastric tube, which is inserted through the nose, or a gastrostomy tube, which is inserted through a small surgical cut in the abdomen.

Getting enough nutrients is important for people who have Alagille syndrome, especially infants and children.

What should people who have Alagille syndrome avoid eating?

People who have Alagille syndrome should talk with their doctor before drinking alcohol. Doctors may recommend not drinking alcohol if Alagille syndrome is causing liver problems.