“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 son living with FCSSee Fin and Devon's story
Not an actual patient.
Living with FCS
Familial Chylomicronaemia Syndrome (FCS) is a rare condition, but you’re not alone. Learn about ways others are managing this condition in their everyday lives1
Managing very high triglycerides due to FCS often involves careful meal planning to keep fat intake very low, avoiding alcohol and steering clear of certain medications that can raise triglyceride levels.2
Your healthcare team can help you decide on the most appropriate management plan for your condition
Diet is a key part of managing FCS
Here are ideas from an expert panel of registered dieticians that may help lower triglyceride levels1
It is advisable to...
Maintain a very low-fat diet by:
- Sticking to the daily fat allowance agreed with your healthcare professional. Often, less than 15–20g daily is recommended1,3
-
Discussing the importance and recommended intake of essential fatty acids such as
alpha-linolenic acid (ALA) and linolenic acid (LA) with your healthcare team1
- The body can make most fats it needs, but essential fatty acids must come from food. Without enough of these, people may develop symptoms such as dry skin, brittle hair and nails, and poor wound healing1
- Flaxseeds, chia seeds, walnuts, and walnut oil are good sources of ALA4
- Whole grains are good sources of LA5
Appropriate daily fat intake depends upon the individual. Consult your doctor or a licensed dietician for guidance.
Eating small amounts of the following foods may help ensure you consume essential healthy fats and protein:1,3
- Turkey and chicken breast with visible fat and skin removed
- Very lean cuts of some meat (e.g., ham / beef / goat)
- White fish /shellfish / white meat crab / squid
- Fresh tuna (red cut only)
- Tinned tuna in brine / spring water
- Pulses (e.g., kidney beans / lentils)
- Some quorn products (e.g., quorn mince)
- Egg whites
- Flaxseeds
- Chia seeds
- All herbs and spices
- Whole grains
Adapted from Williams et al., 2018 and Action FCS, 2020.
Swap your fat source for a medium-chain triglyceride (MCT) oil
Medical grade MCT oil doesn’t increase your triglyceride levels if you have FCS and it can be a useful way to add calories while keeping fat very low. MCT oil follows a different digestion pathway and does not need lipoprotein lipase for processing. It is important to use medical grade MCT oil, as other types may not be suitable for you if you are living with FCS. Discuss options with your doctor or dietitian. Learning to cook with MCT oil may take time, as it can burn easily in high temperatures, like when frying. You may find that it can leave an unpleasant aftertaste or cause bloating. For these reasons, MCT oil should be introduced gradually into your diet.1,4,6
Add fat-free or low-fat, protein-rich foods to every meal and snack1
Great sources of protein that are low in fat include lean chicken, lentils, non-fat Greek yoghurt, prawn, tuna, and turkey. See the table for their fat and protein contents in a typical serving size.
| Food | Serving Size | Fat | Protein |
|---|---|---|---|
| Lean Chicken | 85 grams | 3.8 grams | 27 grams |
| Lentils | 200 grams | 0.8 grams | 17.9 grams |
| Non-fat Greek yoghurt | 156 grams | 0.6 grams | 16 grams |
| Shrimp | 6 pieces | 0.6 grams | 7.5 grams |
| Tuna | 85 grams | 0.8 grams | 16.5 grams |
| Ground Turkey, fat free | 85 grams | 2.3 grams | 27 grams |
Adapted from Williams et al., 2018.
Opt for complex carbohydrates, limit refined and simple carbs, and avoid added sugars1
Complex carbohydrates include:1
- 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
Supplement your levels of fat-soluble vitamins (A, D, E, K) and minerals, 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.1,6
Minerals, such as calcium and iron, are found in meat, fruits, and vegetables. You may not always get everything your body needs when following an extremely low‑fat diet.1
Focus on nutrient-dense foods1,3
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 commonly have an extremely low-fat diet that only allows 15–20 grams of fat per day.
Examples of nutrient-dense foods within fat limit:
Vegetables
Whole grains
Legumes
Fat-free dairy
Lean proteins
Spread calorie and fat intake evenly throughout the day and avoid overeating. Try to eat small portions to avoid feeling too full1
Typical dietary recommendations for people living with FCS:1,3
Include these:
- Fat-free dairy products
- Fat-free milk
- Lean proteins
- Legumes
- Vegetables
- Water
- Whole grains
Avoid these:
- Added sugars
- Alcohol
- Cooking spray and high-fat oils
- Cream
- Desserts
- Foods made with or containing fats or oils
- Fruit juices
- Sugar-sweetened drinks
Adapted from Williams et al.,2018 and Action FCS, 2020.
Opt for non-alcoholic beverages and avoid smoking
Smoking and drinking alcohol increase triglyceride levels.1,8
Follow exercise recommendations as it plays an important part of managing FCS
Exercise has been shown to lower triglyceride levels in the general population. While there is no direct evidence about its impact on people with FCS, exercise has benefits to your overall health and wellbeing.1,9
Not actual patients.
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 healthcare professional about the diet and exercise plan that is right for you.
Practical Support and Advice From People Living with FCS
If you have FCS, you may find it helpful to hear what others have learned along their journeys
Images not actual patients
Join and learn
See Fin and Devon's story
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Find someone who will listen
“There are a few things I'm proud of with Action FCS, one of which is the experience of bringing patients together. And I have many messages from individual patients telling me how meeting a community is changing their lives.”
– Jill, living with FCSSee Jill’s story
Images not actual patients
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 FCSSee Scott's story
Images not actual patients
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 son living with FCSSee Fin and Devon's story
Community support & mental health
Managing FCS may be an emotional challenge for you as well as a physical one. Emotional support from family, friends, and patient organisations may reduce stress and help to empower you in dealing with the condition. You don’t need to bear the burden alone.1
“Setting up ACTION FCS...It's also helped me to share information and get information about the condition and...it feels good to me to know that FCS is now seen in the world.”
– Jill, 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, parent and caregiver to Devon, living with FCS
Stories you can relate to
Hear from others whose lives are impacted by FCS and very high triglycerides
Abbreviations
ALA, alpha-linolenic acid; FCS, Familial Chylomicronaemia Syndrome; LA, linolenic acid; MCT, medium-chain triglyceride.
Show References
- Williams L, et al. J. Clin. Lipidol. 2018; 12(4): 908–19.
- Paragh G, Németh Á, et al. Lipids Health Dis. 2022;21:21.
- Action FCS. Dietary Guidance for FCS. Available from: https://www.actionfcs.org/wp-content/uploads/2020/09/Dietary-Guidance-for-FCS.pdf. Last accessed May 2026.
- Rajaram S, Am J Clin Nutr. 2014;100(Suppl 1):443S–8S.
- Mercola J, D’Adamo CR, Nutrients. 2023;13;15(14):3129.
- Action FCS. The facts about FCS. Available from: https://www.actionfcs.org/about-fcs/the-facts-about-fcs/. Last accessed May 2026.
- LaBarrie J, St-Onge MP. Insights Nutr Metab. 2017; 1(1): 30–6.
- Van der Plas A, Antunes M et al. Toxicol Rep. 2023;10:367–75.
- HEART UK – The Cholesterol Charity. What are triglycerides? Available from: https://www.heartuk.org.uk/cholesterol/triglycerides. Last accessed May 2026.