First principles of managing FCS, tips for eating away from home and information to help with general wellbeing.

First principles

To best manage their symptoms, people with FCS are recommended to eat less that 20g fat per day, restrict added sugar and drink no alcohol.

Following these recommendations is very restrictive and has an impact on every area of the person's life and on the lives on those around them. Planning, and support from those around them, who understand the severity of the condition and its impact, can make a huge difference to their ability to manage the restrictions.

Having FCS can lead to feelings of isolation.  Many people experience depression and describe dealing with the daily challenges of FCS as a struggle.

How easy or difficult it is to follow the restrictions is affected by many different factors: age of diagnosis: economic circumstances; the culture into which they're born; support, or lack of from those around them, and the individual's acceptance of the need to follow the recommendations.

Living well with FCS requires hard work hard to keep well, and support from people around you. With practice, living within the necessary restrictions can become your new normal.

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Self-management is key to reducing the symptoms of FCS

Where to start?

Key to minimising your symptoms is having a clear understanding of how to eat well with the restrictions, being honest with yourself, and learning strategies to help you navigate your life while eating sensibly, healthily and with enjoyment.

The first step is to understand and be clear with yourself (and those who may cook for you) about what you can and can't eat within the limitations. This will help you to develop an approach to eating that gives you the best chance of minimising the risk of pain, pancreatitis and all the other symptoms that come with FCS.

Understanding what you're eating and where you may be eating unacknowledged fat, can help to change your habits.  Keeping a food diary is helpful in identifying where you might cut down on fat.  Keeping a note of how you are feeling when you eat can help you to identify where you may be at risk of eating foods that are not helpful, and gives you the opportunity to develop strategies to avoid repeating the same mistakes.

Reading food labels and monitoring what you eat

Be sure to read food labels carefully when shopping and before you prepare food.  It's important to take notice of the total amount of fat in the product, and also keep in mind the portion size.  Something that seems low in fat can add up to a substantial amount depending on how much you eat in your serving.  Be careful of telling yourself you're 'only eating a little bit'!  Be vigilant.  It is also important to re-check food labels as manufacturers can change the product affecting the amount of fat.

Be careful also of added sugar as a high sugar diet can lead to increased triglyceride levels.  Compare products by looking for the amount of sugar per 100g to chose the food with the lowest added sugar.  If you have diabetes you may need to also consider the carbohydrate portion you are eating.

Watch the video from specialist dietitian Sarah Firman, who discusses nutrition and FCS (in the resources below).  You will also find our Dietary Guidance for FCS resource which offers a starting point for you to begin to think about what you are able to eat and help you to plan your meals and snacks.

Resources to help with dietary management
Dietary Guidance for FCS Download
Food and mood diary Download
Research paper on nutritional guidelines Download
Nutrition and Familial Chylomicronaemia Syndrome, Sarah Firman, Specialist Dietitian Download

Eating away from home

Eating and food is a central part of the human experience.  Eating food prepared by others is possibly the most difficult aspect of living with FCS and is the time when you may have to be the most assertive about your needs as a person with an ultra-rare and little-recognised condition.

Planning is key for when you can't be in control of the food you will be eating.  People with the condition have developed a number of strategies for eating out and we have developed a handy resource for you to download and share with whoever will be catering for you (see below).

Always carrying food with you is a useful strategy for ensuring you will never be in the situation where you have to either eat something unsuitable, or have to go without.

We have many more tips to help you to live well with FCS including eating out, going on holiday and how to enjoy the food you can eat.

Managing your cravings

Living with a severely restricted diet is difficult. A quick look at the dieting world shows this, with people going on endless diets to try and reduce their weight.  Our approach to managing the restrictions is to try and move away from the concept of dieting with it's negative emphasis on what can't be eaten, and instead move to the positive approach that asks 'what can I eat in order to stay healthy?'  

Poor food decisions are often made when people are stressed, tired, hungry or feeling low.  Eating at regular intervals to manage your hunger, getting enough sleep and practising techniques to reduce stress can really help to improve your decision making around food. Having low fat snacks available at home or work can help you to make better food choices when you are hungry, stressed or low in mood.

Keeping a journal can help to provide an outlet for difficult feelings that you may be having.

If you find you're making bad decisions, try not to be too hard on yourself.  The restrictions are difficult.  Keep in mind that your goal is to manage your own health and well-being and that eating well will benefit you now and into your future.

General wellbeing

Maintaining your health can improve every area of your life.  Exercise is recommended for everybody, but it can play an important part in managing FCS.

Exercise increases endorphins which lift your mood.  It kick-starts your metabolism and raises your energy levels and regular exercise can give you a feeling of control which helps you to make good decisions about what  you eat.  Exercise has been shown to lower triglyceride levels in the general population and while there is no direct evidence about its impact on people with FCS exercise has benefits to your overall health and wellbeing.

Being creative about how you get your exercise can really help in keeping you active.  Walking up the escalator, getting off the bus at a stop before your destination, cycling instead of driving can all help in keeping you active.

There are many approaches to calming a stressed and busy mind including many different forms of yoga, tai chi, meditation and mindfulness.  Swimming can be both meditative and a form of exercise.  Local classes are generally easy to find (and many are now online).  Most important is to find a technique that works for you.

Keeping a journal can help to provide an outlet for difficult feelings that you may be having.

Professional support

If you are struggling with the adjustments needed to adhere to the FCS restrictions it might be useful to seek professional support.  Ask your consultant or your GP if you can be referred in the first instance.  If this is not possible finding a private practitioner is not difficult, but ensure that whoever you chose to work with is accredited by a professional organisation.

CBT or Cognitive Behavioural Therapy: can be useful in helping you to change your behaviour.

Self-management programme: offer in some areas is a six-week course looking at all aspects of managing a chronic condition.

Coaching: can be a useful forward looking action-orientated approach to help you to understand the skills and strengths you possess which can help you manage your condition.

Counselling: can help you to explore deeper issues that interfere with your ability to keep yourself well.

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