PSC: Eating for health
Eating for health with PSC and when formal dietary support is needed
Your questions about diet and alcohol
Specialist Dietitian, Jill Johnson (Liver Unit) talks about PSC: Eating for Health at the 2016 PSC Support Information Day at QEH, Birmingham:
There is no such thing as a ‘PSC diet’. It is important for everyone to eat well, regardless of the degree of liver disease. This is because nutrients from food help the body work properly. The correct balance of foods can help with:
- weight control
- preventing diabetes, obesity, heart disease, stroke
- improving high blood pressure
- minimising risk of certain cancers
Your way of eating may need to change depending on your health, weight, treatment and tolerance to certain foods. Nearly three-quarters of people with PSC have inflammatory bowel disease (IBD)1. If so, be mindful of any dietary advice given to you for that.
When someone is unwell with PSC, the principles of healthy eating can change. PSC affects people in different ways, so there is no single ‘PSC diet’.
A healthy weight is not just about calculating your BMI, it’s about being able to maintain a steady weight at which you are well.
A healthy diet includes a balance and variety of foods. No single food is bad for you. The Eatwell Guide can help you to understand the different types of food that make up a healthy diet and in what proportions. The five food groups are:
- Carbohydrates
- Fruit and vegetables
- Milk and dairy
- Proteins
- Fats and sugars
Carbohydrates
Carbohydrates are foods like potatoes, sweet potatoes, bread, rice, pasta, chapattis, breakfast cereals, crackers, noodles and oats. They are essential for providing slow release energy. The British Dietetic Association recommends including one food from this group at each meal time 133.
It is particularly important to make sure you are getting regular carbohydrates if you suffer from fatigue, so that you get a smooth delivery of fuel to keep you going. When that energy runs out, it can also make you irritable and lower your mood. ‘Regular’ means at mealtimes if your BMI is within the healthy range and you are eating well 114.
Choose wholemeal, wholegrain, high fibre versions (such as porridge, whole grain cereal, sweet potatoes, potatoes in their skins, brown rice, basmati rice and brown breads) where possible because they make the digestion of the carbohydrate and keep blood sugar levels more stable 114.
If you have colitis, you may need reduced fibre in an active flare up and if you are going to the toilet more often. Fibre bulks up the stool, stimulates the gut and makes you go to the toilet more often. Jill Johnson, specialist dietitian advises that in a flare up you may want to reduce the fibre by choosing the ‘white’ foods (like white bread) to minimise the need to go to the toilet, and reintroducing the fibre after the flare up has gone and you are feeling well 114
FODMAP Diet
FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. They are types of carbohydrates found in certain foods that can cause gas, bloating, diarrhoea and constipation. A dietitian may use the FODMAP diet for Irritable Bowel Syndrome (IBS) symptoms, which are more prevalent in people with IBD. The FODMAP diet involves reducing high FODMAP foods for a time, then re-introducing them to identify which ones are problematic. Some foods are particularly windy: peas, onion, sweetcorn, cauliflower, broccoli, and pulses.
Anyone following the FODMAP diet should ONLY do so under the supervision of a qualified FODMAP trained registered dietitian. It is a fairly restrictive diet, and should not be undertaken without dietetic supervision.
Protein
Proteins are important building blocks of new tissues and repair of tissues. They are involved in many functions of the liver and immune system, increase muscle bulk and provide zinc, B vitamins, iron and magnesium.
In times of stress (like advanced liver disease), the liver prioritises available protein for other important functions of the liver 114 and the body may need more proteins. Measuring albumin levels in the blood is one way of checking if you are getting enough protein, and if your blood albumin levels are low, your liver dietitian may advise increasing your protein intake.
Proteins come from a variety of food sources such as meats, fish, eggs, milk, cheese, nuts and pulses (beans, peas and lentils). If you are healthy with a stable BMI, you should aim to have 2-4 good portions of protein a day, usually in your meals 114,133.
As you get older, muscle mass decreases, and the recommended protein intake is much higher.
Milk and dairy
Milk and dairy foods provide calcium, protein, vitamins A, D and B12. If you are healthy with a stable BMI, eating 3 portions a day is recommended 133. The British Dietetic Association (BDA) defines a portion as:
- a small pot of yoghurt or fromage frais
- 1/3 pint of milk
- a small matchbox size piece of cheese
Other sources of calcium are green leafy vegetables and oily fish bones.
Fruit and vegetables
Fruits and vegetables are an important source of fibre and vitamins and minerals, including antioxidants, which mop up harmful toxins called free radicals. Free radicals can cause inflammation and cancers 114.
You should aim to eat at least five portions of fruit and vegetables each day. Fresh, frozen, dried and canned all count towards your total 5-a-day 133. On average a portion of fruit or veg is equivalent to 80g.
Juicing is a good way of getting a concentrated quantity of vitamins and minerals, but only equates to one portion because it does not give fibre. Juicing concentrates the sugars and so can be more fattening than eating the equivalent amount of actual fruit/vegetables (because the fibre has been removed) 114.
More information on getting your 5-a-day from the NHS website.
Fats
All fat contains the same calories per gram meaning that all fats are as fattening as each other, weight for weight 114. There are different types of fats: saturated fats (includes butter, cheese, lard, fatty cuts of meat, palm oil), monounsaturated fats (includes rapeseed oil, olive oil) and polyunsaturated fats (includes sunflower, vegetable oils, safflower oils).
The BDA suggest choosing one that is low in saturated fat and made from olive, sunflower, rapeseed or vegetable oils. Saturated fat increases the ‘bad’ cholesterol in your blood (low density lipoproteins, LDL) which can lead to heart disease 133.
Monounsaturated spreads (such as those made from olive or rapeseed oils, oily fish, avocados) can help to lower blood levels of harmful LDL cholesterol, and boost levels of ‘good’ cholesterol (high density lipoproteins, HDL) 133.
Some fat in the diet is essential, but should be limited to small amounts because all types of fat are high in energy 114.
Types of fat and tips to reduce the fats we consume: video from 24m08s
There is conflicting and confusing advice about alcohol consumption. You will be given alcohol advice by your consultant and this will vary depending on the severity of your disease and your general state of health.
At our 2009 Birmingham PSC Support Meeting, Professor David Adams said that he was relaxed about people with early stage liver disease drinking modest amounts of alcohol, other than those with alcohol-related liver disease. He noted that everyone should stick well within the government guidelines and if their liver disease is advanced they should stop alcohol completely.
'Because you’ve got a liver disease you’re more at risk from aggravating that liver injury if you drink alcohol excessively. If you’ve got end stage liver disease you should have no alcohol at all. But if you’ve got compensated disease and your liver is otherwise functioning OK then moderate social drinking is fine. No binge drinking – probably limit yourself to one or two small drinks a day.'
Similarly, Dr Roger Chapman said at our 2011 Oxford PSC Support Meeting, '
It depends on how severe the liver disease is...Keep 2-3 days a week free from alcohol and don’t exceed the recommended maximum units a week (not all at the same time), but anyone with advanced liver disease should avoid alcohol completely.'
If you suddenly lose weight, you should contact your PSC doctor for check-up. In liver disease, it is very important to prevent and treat unintentional weight loss because the more weight you lose, the less well-nourished you become, and the less well the liver copes.
This is because when you are not getting enough calories and proteins, the liver has to break down your tissues to get these nutrients, and is therefore doing an extra job. If your liver is already damaged and stressed, this extra job puts even more stress on the liver so treating that weight loss can help reduce this stress.
In a healthy person, spare energy (starch) is stored in muscle and the liver as ‘glycogen’. Between meals, the body turns to that store to keep us going. However, when you have cirrhosis, this store gets used up and the liver can’t put it back, meaning all you have for energy is the food you have eaten and your body. Muscle is broken down for energy during the day and the muscle mass wastes away. Your dietitian will assess you and usually recommend more frequent, smaller meals.
PSC is a disease that makes it difficult for the bile to flow easily down into the bowel. Bile is important for allowing the body to break down fats. People with PSC can sometimes have problems digesting fat properly and get steatorrhoea - pale, floating, bulky stools which are often difficult to flush. This is not only undigested fat, but also the fat-soluble vitamins (A, D, E and K) and proteins that are tied up with the fat. It is associated with ‘unrest’ soon after eating food high in fat: feeling over full after eating, feeling like the food isn’t moving, hearing lots of gurgling sounds, smelly wind, and sometimes even vomiting. Some people get a temporary intolerance to fat during jaundice or a bacterial cholangitis episode 114.
Your dietitian will discuss the impact of fats on your digestion with you. Another name for it is biliary malabsorption. The treatment of biliary malabsorption involves restricting fat based on the principle that reducing fat to a tolerable level means that it can be absorbed, therefore reducing stress on the liver 114.
Roger Chapman at the 2011 Oxford PSC Support Meeting answered:
'The Mayo clinic finds that both male and female patients display osteoporosis and osteopenia. This is diagnosed with a DEXA bone density scan, which we should be recommending on a more regular basis. Calcium and vitamin D3 is prescribed, it must be vitamin D3, not just vitamin D. Vitamins A & K should only be prescribed if the patient is severely ill, and has been jaundiced for some considerable time.'
Dietary supplementation with calcium and vitamin D3 should be considered in all patients with cholestatic liver disease although this advice is not evidence-based 134. Fat soluble vitamin replacement is recommended in patients with jaundice 22.
Routine care and monitoring: malabsorption of fat soluble vitamins
Registered Dietitians play a crucial therapeutic role in caring for patients with liver disease. They can identify your individual needs and work with you to modify your diet and advise on any supplements you may need.
This is important to:
- Help you feel better and improve your quality of life
- Maintain your strength and energy
- Help prevent weight loss and increase weight
- Help fight infections
- Improve your fitness for treatments including liver transplant
- Support healing and recovery
If you have problems digesting fats, have poor appetite or are losing weight unintentionally, your dietitian will help you reduce your fat intake to the right level for you, and importantly, talk to you about replacing those lost calories and nutrients with higher calorie (but low fat) foods, changing the frequency and amounts of foods, and/or taking supplements. Some of it might seem like the opposite approach to traditional healthy eating advice but this is because your body is no longer digesting food in the normal way. Because of the very specific needs of PSC patients, do not try to modify your diet yourself without the support of your PSC healthcare team 114.
If you are advised to top up on higher calorie (low fat) foods, here are some tips:
- Eat more frequent meals and snacks such as
- Semi sweet/starchy snacks
- Biscuits, scones, crumpets, muffins, teacakes, toast
- Don’t fill up with fruits and vegetables
- If you can tolerate fats, you can add cream, cheese or butter into savoury foods and milk, jam, honey, syrup, lemon curd, dried fruit, nuts or chocolate to sweet foods
- Proteins - your needs will increase or even double.
If this is not possible with diet alone, nutritional supplements/ nourishing drinks may be required such as Complan, Build-Up, Nourishment. You may need a prescription of supplements drinks - discuss with your dietitian because they must be tailored to your needs and not necessarily high fat versions.
You may benefit from a dietitian if you have lost weight unintentionally, have difficulty with certain types of food, have pale, floating diarrhoea or are on enzymes 114.
Dietitian, nutritionist, nutritional therapist or diet expert?
Registered dietitians (RDs) are the only qualified health professionals that assess, diagnose and treat dietary and nutritional problems. Dietitians are the only nutrition professionals required to be regulated by law, and are governed by an ethical code to ensure that they always work to the highest standard. When you have liver disease, it is important that your dietitian also has experience in liver disease 133.
Nutritionists provide information about food and healthy eating but anyone can call themselves a nutritionist, nutritional therapist, clinical nutritionist or diet expert. They are not permitted by law to call themselves dietitians 133.
For more detailed information visit the BDA website.
To find a registered dietitian, ask your PSC doctor or GP.
