Maintaining a healthy lifestyle is important when living with PBC. A healthy diet and regular exercise helps maintain a healthy weight. Our PBC symptoms may vary between people and may be further complicated by other disorders that many with PBC have. If you have a question for our panel, send us an email at: firstname.lastname@example.org with the heading HEALTHY LIVING
Dr. Angela Cheung graduated from the University of Alberta with a Bachelor of Science and Doctor of Medicine before completing her training in Internal Medicine at Queen’s University. She finished training in Gastroenterology and Hepatology at the University of Toronto before doing a fellowship in autoimmune liver disease in Toronto while completing her Masters in Health Research Methodology at McMaster University. She is currently pursuing a research fellowship at the Mayo Clinic in Rochester, Minnesota, working with a team of experts to help improve our understanding of primary biliary cholangitis and primary sclerosing cholangitis. Her overall research focus is in autoimmune liver disease with a research interest in understanding why autoimmune liver disease occurs, how we can develop tests to detect it earlier and in more people, and finding new treatments for autoimmune liver disease.
Dr. Regan Tessis has been an avid member of the integrative health community for over 10 years and is an expert in Naturopathic medicine, nutrition, and Natural Health Products. Regan is passionate about wellness and advocates that achieving and maintaining optimal health through global lifestyle changes is crucial to living one’s best life and preventing disease. As the VP, Scientific Affairs & Consumer Health of two leading North American weight loss companies, Regan oversaw the scientific departments of both brands to ensure clients’ safe and effective weight loss. Prior to this, Regan was the Scientific Regulatory Specialist at a boutique research and regulatory consulting firm in Toronto, servicing the Natural Health Product, Food, and Cosmetic industries. Before and during this time, Regan maintained a private Naturopathic Medicine practice after receiving her Doctor of Naturopathic Medicine Diploma from the Canadian College of Naturopathic Medicine. Regan also holds a Bachelor’s degree in Psychology from the University of Western Ontario and graduated as the top undergraduate student at the University.
Kathy Oghalai is a Registered Dietitian with more than seven years’ experience in helping a wide range of clients to achieve their nutrition-related health goals. She graduated from Ryerson University and completed supervised practical dietetic training in different settings such as Toronto Public Health and East GTA Family Health Team. She is member of the College of Dietitians of Ontario and Dietitians of Canada. Kathy believes that each client she sees is different and needs an individual plan and strategy to achieve success. She assists clients to set realistic and sustainable goals and support them in developing a healthy relationship with food. She presents evidence-based knowledge in an easy to understand manner in order to empower clients to cope with their dietary changes. Kathy is supportive and trustworthy while motivating clients to make sustainable lifestyle changes and to improve their overall health and wellbeing. Kathy is particularly interested in supporting the Canadian PBC Society, since her mother was a PBC patient for ten years. She passed away in 2008 in Iran as a result of late diagnosis and incorrect therapy. She is willing to assist all patients in gaining better nutritional health.
1. I understand that people with PBC may have trouble digesting fats. I often have diarrhea and feel bloated. Should I be on a low-fat diet? If I do add some fat, which is the best type and is there a minimum amount?
There are several important points to your question.
- 1. How often does fat malabsorption occur? While historically PBC was known to cause fat malabsorption, this was decades ago, when people came to the doctor with very severe PBC, that is, with jaundice (yellowing of the eyes and skin due to high bilirubin levels) and complications of cirrhosis. Now, fat malabsorption in PBC is extremely rare.
- 2. What are the problems with fat malabsorption? Fat malabsorption can cause malabsorption of vitamins that need fat for digestion, symptoms such as diarrhea and bloating, and severe weight loss. Fat soluble vitamins include Vitamin A, D, E and K. Only Vitamin D and A can be measured easily. Very rarely, people need to take a special type of fat called “medium chain triglycerides” (MCT) to supplement their diet. This adds about 350-450 kcal to your total caloric intake and thus would not be recommended unless you had clear symptoms of malabsorption, usually accompanied with weight loss.
- 3. Diarrhea and bloating can be relatively common, even in people without PBC. There are many causes of diarrhea and bloating other than liver disease, and as pointed out, it would be extremely unlikely that your symptoms are due to fat malabsorption. The most common cause of diarrhea and bloating in PBC that should be ruled out is celiac disease (3-6 out of 100 people with PBC have celiac disease, which can be tested easily with a blood test and endoscopy, a simple camera procedure that takes a very small sample of your small intestine). The next most common cause of diarrhea and bloating is irritable bowel syndrome (IBS), which can be treated by changing your diet or with medication. There is no blood test or imaging test to diagnose IBS as there are very clear definitions to help diagnose IBS. There are more rare causes of bloating and diarrhea that your doctor can check for if they are worried about them.
Yes, those with PBC can have trouble digesting fats as bile is needed to digest fats and when the bile ducts are compromised, they are unable to release bile. Diarrhea and abdominal complaints are common in those with PBC due to fat malabsorption but this can be managed in a variety of ways. Many doctors recommend a low fat diet to help control these symptoms and also to make sure that the fat that you do consume is absorbed well. You still do need some fat in your diet to maintain your optimal health. Coconut oil is a great choice as it’s a medium chain triglyceride (MCT). MCTs are able to be easily absorbed and used in the body without the use of bile so they are a good source of energy for those with PBC. Gradually add fat to your diet and see how you feel.
You should ask your doctor to test for celiac disease, or gluten intolerance, as this is more prevalent in those with PBC and can also lead to diarrhea and abdominal complaints.
Fat absorption may be impaired in PBC, possibly caused by a decrease in bile secretion. Stool may be greasy, floating or light or clay colored. Replacing some of long chain triglyceride (LCT) (or dietary fat) with medium chain triglyceride (MCT) may be useful, because MCT does not require bile salt for absorption. MCT oil is best used when it is incorporated in food rather than administrated by the spoonful. It can be used in salad dressings, sandwich spreads, confections and can be a substitute for fat in most recipes.
2. Are there ways to control my heartburn by changing my diet?
The common foods that worsen heartburn are:
- Coffee or other caffeinated products
- Acidic (i.e. tomatoes, oranges) or spicy foods
In addition to dietary changes, overall weight loss has been shown to help with heartburn. Also, avoiding eating 2-3 hours before bedtime may help with your heartburn symptoms, especially if they occur at night. You can also try propping up your bed with some books (place them underneath the legs of the head of your bed) to about 45 degrees.
If none of these work, you may need medication for your heartburn.
If you get heartburn, you may find that it is helpful to eat small amounts of food frequently and to avoid big meals and spicy food. Also be sure to not lie down too close to a meal. Beverages to watch out for include carbonated drinks, coffee, alcohol and citrus juices. Apple cider vinegar can be helpful – try having a teaspoon if you are feeling heartburn symptoms.
Eat small frequent meals and stay upright for at least three hours after each
meal and before lying down. Also, smaller plates can be used to reduce gastric
3. I am tired all the time. Will any foods give me more energy? I’ve heard coffee is good for PBC is that true? Will I have more energy if I eat breakfast?
While it sounds simple, a balanced diet and regular meals (ie. Three meals a day with healthy snacks in between) will help balance your metabolism and sugar levels in your blood. As far as I know, there are no specific foods that have been shown to help with fatigue. This is likely because fatigue (tiredness) is caused by many different things. On the contrary, foods high in fat, high in processed sugar and low in fibre, are more likely to make your blood sugar go up quickly, then fall quickly, which can cause fatigue and low energy.
Caffeinated coffee may improve energy levels, but it has also been shown that 2-3 cups of caffeinated coffee a day helps lower liver scarring (fibrosis) in many different liver diseases. Unfortunately, neither decaffeinated coffee nor tea or other caffeine containing beverages have been shown to have the same effect.
Fatigue is a common symptom in those with PBC. In particular, many with PBC report that they often have good energy levels in the morning, they have less energy later in the day, they have an inability to perk up after resting/napping, and they also have occasional days without fatigue. The best way to make sure your energy remains steady throughout the day is to eat a diet rich in complex carbohydrates and protein. Limit your intake of sugar and refined carbohydrates such as white rice, pasta, and breads as these foods will quickly spike your blood sugar which will be followed by a fast energy crash. Complex carbohydrates include fruits, vegetables, as well as whole grains such as brown rice, quinoa, and whole grain breads. These foods release sugar slowly so that your energy is more sustained. Combining protein with complex carbohydrates is the perfect recipe for an energy boost. Good ideas are whole grain crackers with all natural, salt free almond butter, grilled chicken breast with brown rice, whole grain bread with oven roasted, unprocessed turkey breast, and a sliced apple with unsalted cashews.
Ensuring that you drink enough water throughout the day is important to keeping your energy up – aim for 8-10 glasses daily. Squeeze some lemon in your water to give your liver some extra love.
Caffeinated coffee, in the past, has been discouraged in those with PBC to decrease stress on the liver but recent research has shown that coffee can actually help prevent further liver damage in various liver diseases.
Breakfast is highly encouraged to up your energy levels throughout the day! Some energy packing breakfast ideas include:
- Scrambled eggs and vegetables cooked in coconut oil with whole grain
- Steel cut oats with unsalted sliced almonds and berries
- Greek yogurt with peach slices
- Whole grain English muffin with all natural, salt free almond butter
PBC is an immune-mediated disease and typical symptoms include an increase in liver enzymes along with physical symptoms of pruritus and fatigue. Several nutritional complications can occur (those these vary by individual) including osteopenia, hypercholesterolemia, and fat-soluble vitamin deficiency. Each individual should treat and manage his or her own nutritional requirements by consulting doctors and dietitians. The best strategy is to maintain a balanced diet with a variety of foods from all main groups (fruit and vegetables, grain products, milk and alternatives and meat and alternatives) based on age and following the Canada Food Guide. This is the best way to meet the body’s requirements for energy, macronutrients and micronutrients. No specific foods will give more energy, JUST HAVING A BALANCED MEAL PLAN. Eat three meals a day at regular times and space each meal no more than six hours apart. You may also benefit from healthy snacks between meals. Limit the amount of high-fat food such as fried foods, chips and pastries. Eat high-fiber food such as whole grain breads and cereals, dried beans and vegetables and fruit. High-fiber food may lower your cholesterol level, since cholesterol levels are may be high with PBC.
4. What are fat soluble vitamins? MCT?
As mentioned in Question 1, the fat soluble vitamins are Vitamins A, D, E and K. “MCT” stands for “medium chain triglycerides”. As mentioned in Question 1, you do not need to take extra fats such as medium chain triglycerides unless you have severe PBC with jaundice (yellowing of the eyes and skin due to high bilirubin) and symptoms of malabsorption, which usually causes severe weight loss.
Fat Soluble vitamins are Vitamins A, D, E, and K. These are crucial to your health and wellbeing and can often be deficient in those with PBC as your lack of bile impacts your digestive system’s ability to absorb fats and fat-soluble vitamins. Vitamin A is especially important for maintaining your eyesight and skin health. Vitamin D supports your immune system, your bone health, and is a factor is the prevention of many chronic disease. Vitamin E is a potent antioxidant, helping to repair cell damage, and it also benefits your heart health. Vitamin K is key to proper blood clotting.
It is important to maintain an optimal intake of these vitamins if you have PBC to help prevent deficiencies. You can get these from your diet and from supplements.
Examples of dietary sources of fat soluble vitamins:
- Vitamin A – liver, kidney, eggs, dairy products, dark or yellow vegetables, carrots, and tree nuts
- Vitamin D – fish, eggs, fortified milk, and cod liver oil
- Vitamin E – almonds, sunflower seeds, wheat germ, spinach
- Vitamin K – green leafy vegetables (such as spinach, swiss chard, and parsley), cruciferous vegetables (such as cabbage, kale, broccoli, and cauliflower), and fruits (such as avocado, kiwi, and grapes
It is recommended that those with PBC take an iron free multivitamin as well as 1000 IU of Vitamin D daily to prevent deficiencies. Talk to your doctor and ask to get tested to see if you are deficient in these fat soluble vitamins and if you need additional supplementation beyond this.
MCT stands for Medium Chain Triglycerides, and these are a type of dietary fat. Unlike other fats, MCTs are able to be easily absorbed and used in the body without the use of bile so they are a good source of energy for those with PBC. They may even help in the absorption of other types of fats. As much as 60% of dietary fat can be derived from MCTs in patients with PBC. The best sources of MCTs are coconut oil and palm kernel oil.
Moderate to severe malnutrition is common in patients with liver disease, especially in advanced stages. Several factors are involved in the development of malnutrition in PBC, such as loss of appetite, nausea, altered taste, and drug and dietary restrictions. Maldigestion and malabsorption also play a role. The presence of fat in stool is common when bile ducts are injured, so fat soluble vitamins such as A, K, D and E may be needed in the form of water soluble supplements. Talk to your physician about this.
5. I understand calcium and vitamin D are good for osteoporosis. How much do I need daily? What foods are best to get each and do I still need to take supplements for these?
It is now known that it is better to take dietary calcium rather than calcium supplements, as calcium supplements may increase the risk of heart attack and stroke over the long run. Up to 1000 mg of calcium a day (two tablets of 500 mg), may be safe, but it is best to take these through diet if possible, such as milk, which has about 300mg of calcium, or yogurt, which has about 250mg of calcium. A good resource is Dietitions of Canada. Vitamin D 1000IU daily is important to take regularly as a tablet, even during the summer months.
PBC can put you at increased risk for osteoporosis, which is a condition in which the bones become weak and prone to fracture. Calcium and Vitamin D are important to maintaining bone health. Most people with PBC are recommended to supplement with 1000 mg of calcium daily as well as 1000 IU of vitamin D daily, unless there is a deficiency, in which case your doctor may recommend that you take higher vitamin D doses.
You can get Calcium from your diet by eating dairy products as well as dark green leafy vegetables. You mostly get vitamin D from exposure to sunlight but you can also get it by eating fish, eggs, fortified milk, and cod liver oil. It is always important to take a daily vitamin D supplement, especially in Canada when our yearly sun exposure is low. Your doctor may recommend that you supplement with calcium in addition to your dietary intake, although this will be based on your personal and family health history.
Weight bearing exercise is also recommended to prevent and treat osteoporosis as it helps to strengthen your bones. Try activities such as jogging, brisk walking, hiking, and yoga.
The dosage of these supplements should be based on an assessment of nutritional intake and test results, so dosage will vary by individual. Generally, prevention and treatment of osteopenia includes weight management, a well-balanced diet, and adequate protein to maintain muscle mass. Avoiding the use of alcohol and monitoring the presence of excess fat in stool is beneficial as well.
Things to avoid
I know I should be avoiding alcohol and tobacco. Are there any foods that are considered toxins or foods that will put extra stress on my liver?
Previously, it was felt that people with liver disease should be put on a low protein diet, especially those with advanced cirrhosis. We now know that this is not true, and in fact often patients with cirrhosis will need to increase the protein in their diet, as cirrhosis causes “muscle-wasting” or an increase in the breakdown of the muscles in your body. The extra protein can be taken through food, or through supplemental protein powders or dietary supplements like Ensure or Boost, which will increase the amount of calories you take in, some of which will be converted to protein. People with PBC with no cirrhosis or very early cirrhosis may take normal amounts of protein in their diet (ie. 10-15% of your total intake or 2 servings a day for women and 3 servings a day for men).
You should also try to eat a diet that is rich in whole, unprocessed foods to limit your exposure to liver toxic additives and preservatives. Shop the outside aisles of the grocery store to fill up on fresh produce, fish, poultry, and whole grains and only choose packaged foods with recognizable ingredients. Limit your intake of added sugar as this can lead to fat buildup in the liver which can result in liver inflammation. You may also need to limit your fat intake (other than MCTs) as indicated above if you are experiencing diarrhea and abdominal pain.
Dietary sodium can cause tissue swelling and the buildup of fluid in the abdomen and so it is also a good idea to reduce your sodium intake. Purchase unsalted or low sodium products only. Use seasonings other than salt to flavour your foods.
Try to eat as much fresh, unprocessed food as possible. Avoid soft drinks, cold cuts and all processed meats.