A woman looking through a kitchen
A woman looking through a kitchen

Tips and Resources

FCS is a very rare condition, but you’re not alone. Learn about ways others are managing this condition in their everyday lives.

1. Try to maintain a very low-fat diet by:

  • Eating less than 15-20 grams of fat daily (less than 10-15% of your daily caloric intake)*
  • Ensuring essential fats (the fats that the body cannot produce on its own), such as alpha-linolenic acid (ALA, an omega-3 fatty acid) and linolenic acid (LA, an omega-6 
fatty acid), are 2% to 4% of daily calories
    • Flaxseeds and chia seeds are good sources of ALA in small amounts, as they supply essential fatty acids*

*Appropriate daily fat intake depends upon the individual. Consult your doctor or a licensed dietitian for guidance.

Eating small amounts of the following example foods may help ensure you consume essential healthy fats:

  • Beans
  • Chia seeds
  • Flaxseed
  • Light canned tuna in water
  • Oysters
  • Scallops
  • Sea bass
  • Shrimp
  • Tilapia
  • Tofu

2. Swap your fat source for a medium-chain triglyceride (MCT) oil.

Medical-grade MCT oil doesn’t increase triglycerides in people with FCS. There are different kinds of MCT oil available that might help meet the dietary needs of someone living with FCS. You can ask your doctor or dietitian to help you find the one that’s best for you and prescribe it for you.

3. Add fat-free or low-fat, protein-rich foods to every meal and snack.

Great sources of protein that are low in fat include lean chicken, lentils, non-fat dairy like yogurt or cheese, shrimp, tuna, and turkey. See the table for the fat and protein content in a typical serving size. 

Serving SizeFatProtein
Lean chicken breast3 ounces3.8 grams26.4 grams
Lentils (boiled)1 cup0.8 grams17.9 grams
Nonfat cheese1 ounce0 grams9.1 grams
Large shrimp6 pieces0.6 grams7.5 grams
Light canned tuna in water (drained)3 ounces0.8 grams16.5 grams
Fat-free ground turkey3 ounces2.3 grams27 grams

4. Opt for complex carbohydrates, limit refined and simple carbs, and avoid added sugars.

Complex carbohydrates include:

  • Whole grains like quinoa, oats, and brown rice
  • Chickpeas, black beans, and peas
  • Starchy vegetables like potatoes, butternut squash, and beets
  • Fruits like bananas, apples, and blueberries

5. Have your levels of fat-soluble vitamins (A, D, E, K) and minerals regularly checked, and supplement if necessary.

The main food sources for fat-soluble vitamins are animal fats, vegetable oils, dairy foods, liver, and oily fish. Your body needs these vitamins, but these foods may have too much fat content for a person living with FCS. Consider talking to your doctor about checking levels of these vitamins and any potential supplements you may need.

Minerals, such as calcium and iron, are found in meat, fruits, and vegetables. You may be able to get what your body needs in an extremely low-fat diet.

Examples of nutrient-dense foods within the daily fat limit:

Vegetables

Whole grains

Legumes

Fat-free milk

Lean proteins

6. Focus on nutrient-dense foods.

These include vegetables, whole grains, legumes, fat-free dairy, and lean proteins. Avoid added sugars, desserts, sugary drinks, fruit juices, high-fat cooking oils, and foods made with fats or oils. People living with FCS have an extremely low-fat diet that only allows 15-20 grams of fat per day.

7. Spread calorie and fat intake evenly throughout the day and avoid overeating. Try to eat small portions to avoid feeling too full.

Typical dietary recommendations for people living with FCS:

  • Include these:
  • Fat-free dairy products
  • Fat-free milk
  • Lean proteins
  • Legumes
  • Vegetables
  • Sufficient water intake
  • Whole grains
  • Avoid these:
  • Added sugars
  • Alcohol
  • Cooking spray and high-fat oils
  • Desserts
  • Foods made with or containing fats or oils
  • Fruit juices
  • Sugar-sweetened drinks

8. Avoid drinking alcohol.

Drinking alcohol raises triglyceride levels.

A young couple jogging in mountains

9. The National Lipid Association recommends at least 150 minutes of moderate-to-higher intensity physical activity per week.

While this is a general guideline for those living with high triglycerides, people with FCS should consult their healthcare team to create a personalized exercise plan.

This content is for informational purposes only and is not intended to be a substitute for professional medical advice. If you have very high triglycerides, you should talk to your doctor or professional healthcare provider about the diet and exercise plan that is right for you.

Tasty, enjoyable FCS-safe tips for cooking and dining out

Because diet is one of the most important factors when managing FCS, cooking and dining out may become a major source of stress. But there are ways to enjoy cooking and dining out while maintaining your diet. Here are some tips for cooking and dining out on an FCS-friendly diet:

Plan your meals out

Whether it’s making food at home or going out to eat, planning your meals out allows you to choose low-fat options.

Evaluate menu options ahead

When you’re planning to dine out, try finding the menu online or calling ahead to make sure that there’s something available that fits your low-fat diet.

Join and learn

“There’s cooking because you have to cook and you have to eat. And there’s cooking because you love food and you are excited by being able to provide food for yourself and for others, more than that, for others that they enjoy.”

—Fin, parent of child living with FCS

Hear Fin and Devon’s FCS story

Eating with friends

Give them a list of foods that you can eat. If that’s not an option, bring your own FCS-safe foods. Eating with friends is a social experience—FCS shouldn’t limit that.

Find someone who will listen

“He [my husband] brought in the concepts of cooking from scratch, from starting with what I can eat, rather than thinking about what I can’t eat, with trying to cook food that is from the ingredients I can eat.”

—Jill, living with FCS

Hear Jill’s FCS story

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Traveling with FCS

Although your dietary requirements can make traveling more difficult, they may not make it impossible. Talk to your doctor about how you can maintain your diet while traveling with very high triglycerides, like FCS.

Woman sitting by the water.

PRACTICAL SUPPORT
AND ADVICE FROM PEOPLE LIVING WITH VERY HIGH TRIGLYCERIDES

If you have very high triglycerides, you may find it helpful to hear what others with very high triglycerides have learned along their journeys.

A group of people looking at photos

Join and learn

“When you start to engage with a community of others with the condition, the more you learn, the stronger you can be and the better you can be at advocating.”

—Fin, parent of child living with FCS
A man speaking with a friend

Find someone who will listen

“Do not give up. That is not an option. Find someone who will listen, who will have your back, who will help you, who will answer all of your questions.”

—Scott, living with FCS
A man and woman looking at a computer

Cut the red tape

“To help avoid stigma or misdiagnosis, I hand carry a provider letter saying, ‘This patient is under my care. She’s not lying. This is what she has. This is what needs to happen.’ Signed by my provider, it cuts through so much red tape.”

—Julie, living with FCS
Two women singing into a hairbrush

Find a voice

“If you feel like you don’t have a voice, find someone who will be your voice for you on your behalf.”

—Scott, living with FCS
A woman listening to friend

Mind your mental health

“We had mental health support, which I think is absolutely critical for anyone with FCS. Like anything that’s rare that makes you different, it can be an isolating thing.”

—Fin, parent of child living with FCS
Three friends hugging

You are not alone

“Everybody was delighted to have found somebody else who had the same condition to talk, and to exchange stories, and to validate their experiences, their feelings, work out what was to do with FCS and what was to do with just being them.”

—Julie, living with FCS

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Community support & mental health

Managing very high triglycerides may be an emotional challenge as well as a physical one. Emotional support from family, friends, and patient organizations may reduce stress and empower people with FCS. You don’t need to bear the burden alone.

Once I finally had a diagnosis and got close to figuring it out, I jumped both feet in into finding people that had this disease as well because I had been on an island by myself for so long. Just the thought of knowing that there is someone else in this world that has this same thing was very comforting to me.

—Scott, living with FCS

You deal with this thing where you start to have to learn a new language because I was told he had hepatosplenomegaly, which obviously meant nothing to me, but I found out it meant enlarged liver and spleen.

—Fin, father and caregiver to Devon, living with FCS

Helpful resources, organizations, and support for people with FCS

Organizations dedicated to supporting people living with FCS:

Helpful and informative downloadable fact sheets:

Emergency Room (ER)/Emergency Department (ED) Document: