Nutritionists help manage Pompe disease through healthy eating

In the late-onset form of Pompe disease, the healthcare team may involve a nutritionist who knows a lot about metabolic (how the body uses energy) disorders, such as Pompe disease.

Eating plans for Pompe disease aim to manage glycogen

The nutritionist will generally make an eating plan that meets a patient’s specific needs. In Pompe disease, it’s important to manage the buildup of glycogen in muscle cells through careful eating. There isn’t a set eating plan for Pompe disease, but eating an adequate amount of protein and exercising can help protect muscles from getting weak. This type of high-protein diet lets patients know how many proteins, fats, and carbohydrates they should eat each day.

Protein 25%-35%

About one-third of a daily Pompe disease diet should include proteins, mainly from meat, fish, egg, and dairy products. These types of proteins are sources of an amino acid that helps the body turn glucose into energy.

Fat 35%-40%

Slightly more than one-third of a daily diet should come from fat. This can include unsaturated fats, such as some types of fish or omega-3 supplements, and saturated fats, such as olive oil, seeds, or nuts.

Carbohydrates 30%-35%

Carbohydrates should make up only 30%-35% of the total daily diet. Carbohydrates include whole grains, such as cereals, legumes (beans), and whole grain pasta, as well as simple carbs from dried or skinned fresh fruit. Spacing carbohydrates throughout the day, in small, frequent portions, may help avoid glucose buildup in cells.

Understanding diet and Pompe disease

Getting used to a new way of eating might feel overwhelming, but information and resources are available to help understand next steps. Here are some sources to help learn more:

Diet and exercise can be a powerful combination

Eating lots of protein and fewer carbs, along with doing some exercise, has helped some people with Pompe disease move better. Talk to a doctor to check if this diet and exercise plan could work for you.

Find out how a physical therapist can help with exercise.