Familial chylomicronemia syndrome: diet and lifestyle

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For people with FCS, managing diet and lifestyle is critical

Low-fat diet, nutrition and a holistic approach to health

Effectively managing your diet with help from a registered dietitian is the cornerstone to living well with familial chylomicronemia syndrome (FCS). But, to lead a balanced and fulfilling life, people with FCS must care for their diet, body, and mind.

It’s not just a diet, it’s a lifestyle. Patients with FCS need to limit the fat they eat to about 20 grams a day. Since foods high in fat and simple carbohydrates either contain or increase triglycerides, you will need to reduce simple carbohydrates and limit total carbohydrates, while meeting nutritional requirements for essential fatty acids. This is because people who have FCS are unable to process fats because lipoprotein lipase is missing or broken.

Alcohol abstinence is essential to your overall health. Alcohol has been shown to raise triglyceride levels. Since people with FCS are unable to clear fats from their blood, alcohol must be avoided.

FCS patients should focus on lean proteins, complex carbohydrates, vegetables, seeds, and fruit. And stay away from fat, simple carbohydrates, refined starches and added sugars.

Creating a food diary to monitor your eating habits can help you keep track of your calorie and fat intake. A registered dietician can help by offering tips and advice.

Here are some helpful hints patients have shared:

  • Ensure a low-fat diet
    • Meet nutritional requirements for essential fatty acids
    • Reduce simple carbohydrates and limit total carbohydrates
  • Consider cooking with Medium Chain Triglyceride oil
  • Learn how to read food labels and avoid fats, even “healthy” fats
  • Keep a food diary

The National Lipid Association has many resources and delicious FCS friendly recipes.

Important: Different people tolerate food differently. It will take time and patience to fully appreciate what an FCS diagnosis means for your diet and lifestyle. This is why working with a registered dietitian is essential to your good health.

What is 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 dietary 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.

A Holistic FCS Lifestyle and Diet

Working with a dietitian

A registered dietitian is a key member of your healthcare team. An endocrinologist or lipidologist may be able to recommend a knowledgeable registered dietitian who understands the needs of FCS patients. The registered dietician will help you create a diet that fits your lifestyle, allowing you to enjoy delicious foods that are beneficial to your health whether you are at home or at a restaurant.

A dietitian will want to understand your lifestyle and habits in order to create a customized plan and address your knowledge and motivation around:

  • Eliminating alcohol and smoking
  • Transitioning to a low-fat meal plan
  • Meeting nutritional requirements for essential fatty acids
  • Reducing simple carbohydrates and limiting total carbohydrates
  • Weight management and physical activity
  • Food selection and meal preparation to fit your lifestyle and your taste

What to bring to your appointment

  • Familial chylomicronemia syndrome information and facts (for reference)
  • Food diary of all food and drinks consumed for 3 non-consecutive days (2 weekdays and 1 weekend day)
  • Most recent fasting triglyceride reading

Use the Lipid Panel Tracking Template below as a guide to track and stay informed about your lipid panel blood test results.

Lipid Panel Tracker


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Patient Resources

Visit these organizations for further advocacy and education resources.

The FCS Foundation

The Foundation of the
National Lipid Association