Nutritional Hints for PSC

There is no specific PSC diet and most patients do not have to make any changes, except to continue to eat in a healthy, sensible way. But, many PSCers have related digestive issues, such as ulcerative colitis and other gut problems, and need to stick to a specific diet, as advised by professionals.

Liver and your diet: As PSC progresses, your liver may not able to process nutrients and toxins as it could when you were healthier and you may be advised to modify your diet to accommodate your condition. Generally PSC dietary advice aims to reduce stress on the liver and reduce some of the symptoms of liver disease. If you also have kidney disease, dietary changes will be necessary.

Specifically, you may be asked to reduce your intake of sodium, monitor your potassium, cholesterol, and other nutrients, including vitamins and minerals. Be sure you know exactly which foods and nutrients you need to avoid or add to your diet. Learn how many calories you need to maintain your weight and how many you need to reach your goal, whether to gain or to lose weight.

Sodium/salt reduction will help to reduce fluid build-up (ascites). You may also need to restrict your fluid intake. Carbohydrate metabolism is also altered in liver disease, which can lead to increased blood sugar. You may be told to cut down on simple sugars in your diet. A low fat diet is often recommended, as well.

Diet issues can be confusing because patients are generally not trained to sort the complexities, especially with regard to PSC and its related diseases. Well-meaning information from non-professionals, such as friends, other patients, advertisements, etc., needs to be checked with a health professional.

You will need assistance working through and understanding the importance of certain diet changes. In certain situations some prescription medications can alter appetite and food metabolism. Your specific diet, if you need one, may not be the same for another PSC patient. Each person is unique.

Professional expertise: Ask to meet with a nutritionist recommended by your specialist, a nutritionist knowledgeable about the technical aspects of liver disease. Generally these specialists are found in a large and/or teaching hospital and are registered dietitians or licensed dietitians, certified in medical nutrition. Our members advise that dietary advice from a hospital-related professional will likely be most precise for a particular disease. Not all independent dietitians or nutritionists have heard of PSC and may not provide the best advice; they may not appreciate the complexity of your situation, especially if you have other digestive diseases.

Some PSCers say they find relief from symptoms if they take certain dietary supplements. If you decide to try supplements, you ought to research them thoroughly and ask your doctor before you decide to take them. Formal research on dietary supplements and PSC is limited. Some supplement manufacturing practices may not be consistent or safe. Some supplements can be toxic to the liver and you can inadvertently harm it further. Certain herbals that are OK for healthy people may be harmful to someone with liver disease.

Healthy eating presentation: At our 2009 annual conference with Northwestern Feinberg School of Medicine, Beth Doerfler, MS, RD, presented a session on Nutrition and Healthy Living. Click here to go to her 2009 conference presentation. She offered three handouts to participants and with her permission, we present them here: grocery list, meal ideas, and snack ideas. While this is a healthy diet for most people, your physician or nutritionist may modify it to fit your medical situation. If you make a change in your diet on your own, be sure to ask your doctor about the safety of your new approach.

Healthy Eating Grocery List

Healthy Breakfast Ideas

Breakfast is the most important meal of the day. Not only does it give you energy to start a new day, but breakfast is linked to many health benefits, including weight control and improved performance.

Studies show that eating a healthy breakfast can help give you:

• A more nutritionally complete diet, higher in nutrients, vitamins and minerals,
• Improved concentration and performance in the classroom or the boardroom,
• More strength and endurance to engage in physical activity, and lower cholesterol levels.

Whole grain + Lean Protein + Fruit/Vegetable = A well-balanced, high-energy breakfast with a healthful combination of fiber, vitamins, minerals and antioxidants.

To make a healthy breakfast, choose one item from each column.

Healthy Lunch/Dinner Ideas

Whole grain + Lean Protein + Fruit/Vegetable = A well-balanced, high-energy meal is a healthful combination of lean protein with fiber, vitamins, minerals, and antioxidants.

• To make a healthy meal each day, choose one item from each column
• Enjoy adding heart healthy fats such as olive oil and avocado to your fruits and vegetables to increase flavor and nutrients
• Peeling and cooking fruits and vegetables helps to improve your tolerance for fiber

SNACK IDEAS (100-200 calories)

SWEET

• Low fat cottage cheese (4oz individual pack) with:
• • an individual fruit cup (no sugar added)
  • cinnamon and Splenda
• Pack of low sugar oatmeal
• Yogurt (Stonyfield Farms or Okios Greek Yogurt = 120-150 calories):
• • yogurt and 1 tablespoon nuts
  • yogurt and 1 tablespoon of bran cereal
  • yogurt and a handful of berries
  • yogurt and Vitamuffin (80calories)
• Applesauce (no sugar added)
• Banana
• Drinkable light low fat yogurt (Dannon Light n' Fit Smoothies)
• Low fat pudding with Cool Whip(Jello pudding cups = 60calories)
• Sugar Free Jell-O cups with Cool Whip
• Orville Redenbacher mini bags of popcorn (100 calories)
• www.cocoavia.com chocolate bars (80-100 calories)
• Pear or apple with Laughing Cow Cheese Light (1 wedge = 35 calories)
• Apple with 2 Tbsp of Better N' Peanut Butter (2TBSP = 100 calories)
• Fiber One Chewy Bars (Oats and Peanut Butter OR Oats and Chocolate = 140-150 calories)
• 100 calorie pack varieties
• Nature Valley Fruit Crisps - Cinnamon Apple (1 pouch = 50 calories)

SALTY

• Low Sodium V8 (4 or 8oz)
• Artichoke hearts out of the can
• String Cheese (Sargento Light = 50calories)
• Whole Grain English Muffin (1/2) and 1 slice low fat cheese (veggie slices = 35-40 calories)
• La Tortilla Factory whole grain tortilla or whole grain pita (1) and 2 tablespoons hummus (Oasis roasted red pepper hummus = 25 calories for 2 TBSP)
• Low Fat Cottage cheese (4 oz serving) with fresh tomatoes
• Jicama slices with lime
• Peapods
• Grape tomatoes
• Edamame
• Soynuts (handful)
• Unsalted nuts (walnuts, cashews, almonds, pepitas) a handful ¼ c = 220 calories
• Peeled cucumbers with Laughing Cow Cheese Light
• Reduced Fat Triscuits or All Bran Crackers (18 = 120 calories) with Laughing Cow Cheese Light
• Mini carrots and/or celery with low fat dressing
• Whole grain crackers (RyKrisp, Wasa, Rice Cakes) with Laughing Cow Light and/or turkey slices, tomato/cucumber/ mustard

Personal Story

Count calories and exercise to lose weight

Even without PSC, nutrition and exercise are important. Since around 80 percent of PSC patients have some form of IBD, nutrition is very important. Most PSCers do better on low fat (30 gms/day) diets. Anything that stresses your liver or kidneys should be minimized (alcohol, for example). With your narrowed bile ducts, it's very important to avoid dehydration, as the bile will get thick and not flow well, contributing to the possibility of a cholangitis "attack."

I've not been successful at dieting without counting calories (including grams of fat), combined with exercise. If I really want to lose weight, that's what I do. Vitamins are probably a good idea. I suspect even more so if you have a j-pouch, but I'd ask your doctor about that.

In order to lose a pound a week, you need to cut back about 500 calories/day. Exercise counts! If you walk 3 miles a day, you get to subtract 300 calories. For a fairly active person, the rule of thumb is to take your weight (in pounds) and multiply by 15 - that's the caloric intake required to maintain your weight. So, if I wanted to lose a pound a week, I'd go from 2625 calories (175x15) per day to 2125 calories. Those 500 calories are about two Krispy Kreme doughnuts, which I can easily forego (not to mention the accompanying 28 gms of fat!).

Exercise sensibly, as much as you are able, even if it's "just" walking (and there is nothing wrong with walking-it is a great form of exercise). There are several reasons for exercising, not the least of which is that it's good for you physically and mentally. (It helps lower your stress levels!) Exercising also makes recovery from a liver transplant-if it comes to that-much quicker.

If you're going to take a supplement, make sure your doctor at least knows you're doing it, and hopefully, agrees it will not do harm. Just because they are "all natural" or organic, does not mean they are harmless. Some common supplements used with PSC are: Milk Thistle (silymarin), SAMe (S-adenosylmethionine), ADEK vitamins (fat-soluble vitamins), Calcium with vitamin-D, probiotics, and Omega-3 (fish oil).

There are many research studies on the above. None are a magic bullet, and results are often conflicting. Check our PSC literature site for more details by clicking here.

Arne M.