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Living with FCS

First Principles

People with FCS seem to vary with the amount of fat that they can eat symptom-free.  This is reflected in the literature which talks of patients limiting their daily fat intake to between 10g-20g fat daily.  As knowledge of the condition increases so it is understood that different patients have differing levels of gene expression and so have differing levels of the enzyme lipoprotein lipase, meaning that their bodies can deal with less or more of the fat content in their diet.

It is difficult to give an overview that speaks to everyone so we have taken the approach of working with the situation for those who can tolerate the least amount of fat.  If you have more tolerance and your situation is more relaxed, you may find some suggestions overly restrictive.   Some of the suggestions will be suitable for all.

You will also have many tips about what works in your life.  Please share them with us.  People with the condition are the most likely to have been inventive about how to manage a situation and you may be able to share a tip which could help broaden the experience of someone else.  Please email us so that we can add your tip to our pages.

What kinds of fat can I eat?
People with familial chylomicronaemia do not have any or enough of the active enzyme lipoprotein lipase and so have varying levels of difficulty digesting any fat, whether vegetable or animal.  This includes fat from: dairy; egg yolks; fruits like avocado, olives and coconut; nuts; seeds; legumes such as soya and chickpeas as well as fat from animals.  So saturated fat, unsaturated fat and trans-fats.

All oils from any source should be avoided or considered with extreme caution.

MCT Oil (Medium Chain Triglyceride)
People with FCS can use a specially-treated oil called MCT oil (Medium Chain Triglyceride).  This is an oil that has been fractionated so that it follows a different pathway through digestion, bypassing the gut and being absorbed in the liver, meaning that the lipoprotein lipase enzyme is not required in the process.

MCT oil is available on prescription but not everyone with FCS will find they are eligible to be prescribed, depending on which area they live in.  MCT oil is available online, but should be bought with extreme caution as there are many products available which are not suitable for people with FCS.  It is important to find a ‘medical grade’ product.  This is the  product prescribed for those lucky enough to be prescribed.

MCT can be difficult to use as it burns easily but many people with FCS have found it a useful addition to their diet..  For some it can leave an unpleasant aftertaste and cause bloating so it is recommended to introduce it gradually to the diet.

It is important to discuss with your consultant if you plan to add MCT to your diet.  Be sure to ask to be prescribed both to ensure you are using a suitable brand and also because it can be quite expensive.

It is also worth monitoring triglyceride levels before using MCT and after a period of using MCT.

Doctors recommend that alcohol should be avoided by people with FCS.  This is because alcohol is known to raise triglycerides and excessive alcohol use is the leading cause of pancreatitis.  You can read about the effects of alcohol on triglyceride levels here.   It may be that you decide that you are happy to reduce your fat intake to enable you to drink some alcohol and still remain symptom-free.  As with anything to do with this condition, this is a very personal decision.

However, alcohol lifts inhibitions.  You might find that when you have drunk some alcohol your judgement is impaired and you may give yourself permission to eat foods that sober you wouldn’t touch. If you drink enough so that you have a hangover the next day, be aware that you may experience cravings for fatty and sugary foods which make eating well very difficult to achieve.

Alcohol contains a lot of sugar which loads the work your pancreas has to do and can increase your risk of developing diabetes. If you do drink try to avoid very sweet drinks like fortified wines or cocktails. If you drink spirits maybe chose gin or vodka which are relatively ‘dry’ and maybe go for the sugar-free mixers.

Smoking is not recommended for anybody but as it is known to raise triglyceride levels among the general population there is an extra reason for people with FCS not to smoke.  Doctors recommend that people with FCS do not smoke.