Being in control of what you eat and drink is the key to living with familial chylomicronemia syndrome (FCS). Following an FCS-friendly lifestyle can be a challenge, but it is very important to help prevent complications. Let’s look at why food and beverages play such a key role in the lives of patients with FCS.
People With FCS Can’t Digest Fats.
For people with FCS, eating or drinking foods or beverages that are high in fat leads to a dangerous increase of triglycerides (TGs), a form of fat, in the blood. Fat in food is broken down with the help of an enzyme called lipoprotein lipase (LPL). In people with FCS, this enzyme is missing or only available in very small amounts, so fats in foods aren’t broken down and TGs accumulate in the blood. Simple carbohydrates can lead to a dangerous increase of TGs in the blood, too. High levels of TGs in the blood can cause severe stomach pain. Continuous high levels may even lead to other health problems, including pancreatitis, a painful and potentially life-threatening condition.
Having FCS Is Hard, but Manageable.
Learning to enjoy healthy dietary patterns and developing routines are key. Due to their inability to break down fat, people with FCS must follow a specific food and beverage regimen. It is critical that they eat no more than 20 grams total fat per day, spread throughout the day and not all in one big meal. They should avoid drinking alcohol and limit simple carbohydrates like sugar, candy, juices, and soft drinks. Cut back on refined carbohydrates like white flour, white bread, white rice, and ready-to-eat cereals, since they can cause TG levels to rapidly increase to dangerous levels. Develop dietary patterns and routines to establish an FCS-friendly food plan that works for you!
"...it is helpful to hear other patients and caregivers share experiences that are similar to yours. – Lynne, Caregiver
Work With a Registered Dietitian to Get the Nutrients an FCS Patient Needs.
Talk to a registered dietitian and create a meal plan that provides all the essential nutrients and calories to support growth and development as well as weight management. Your dietitian may recommend certain supplements and the use of MCT Oil in food preparation. MCT (Medium Chain Triglycerides) Oil is a medical food and can be obtained through a prescription from the doctor. Learn more about MCT Oil here.
Take a Holistic Approach to Health.
Holistic care means to treat the “whole person.” Take care of your body and mind, in addition to making healthy food decisions. Focus on getting regular exercise and plenty of rest. Choose nutrition and lifestyle options that will promote your best health and limit those that will worsen your condition.
Don’t forget to take care of your mind, too. Living with a chronic condition can be a heavy burden. Be sure to take time for yourself and seek support. Relieve stress by going for a walk with a friend. Connecting with the FCS Foundation and meeting others with FCS is very helpful too!
Consult a registered dietitian for nutrition counseling. Be aware that not many dietitians will be familiar with FCS, so share FCS materials with your dietitian and encourage discussions between your healthcare team members. Your participation in making food choices to meet their recommendations is very important.