Carcinoid Syndrome and Diet

Question:

What are the best types of foods that I should avoid or try to eat more of with a diagnosis of a neuroendocrine tumor and carcinoid syndrome? Are there any websites or resources to learn more?

Answer:

Certain foods or eating habits are more likely to result in flushing, diarrhea, gas, bloating, and abdominal pain related to carcinoid syndrome. You only need to avoid particular foods if they cause you to have these symptoms. Everyone is unique and you may be able to tolerate nearly all or very few of the trigger foods.

Most frequently reported trigger foods or habits include:

  • Eating larger meals
  • Eating high fat meals
  • Drinking alcohol
  • Eating very spicy foods
  • Eating raw tomatoes
  • Eating foods with a high or moderate amount of amines (see table)

Foods High in Amines

Foods Moderate in Amines

Aged cheeses—cheddar, stilton, camembert, etc.

Alcohol—all types

Smoked, salted, or pickled  fish and meats

Yeast extracts and “hydrolyzed” proteins–like marmite/vegemite, or used for flavoring processed foods, brewer’s yeast, nutritional yeast

Fermented foods—tofu, miso, sauerkraut, shrimp paste, fish sauce, soy sauce

Caffeine—coffee, cola

Dark  chocolate, milk chocolate, cocoa powder

Peanuts, brazil nuts, coconut

Avocado, banana, raspberries

Soyfoods—tempeh

Fava beans

Certain vegetarian meat substitutes—check the label for ingredients

General Nutrition Tips for Symptomatic Carcinoid Syndrome:

  • Eat 4 to 6 smaller meals, instead of 3 larger meals
  • Choose a diet higher in protein
    • Best choices include: fresh fish, chicken, turkey, lean beef; beans and lentils; eggs; low fat dairy like milk, yogurt, cottage cheese
  • Reduce your fat intake
    • Choose the healthiest fats, including: extra virgin olive oil, nuts, seeds
  • Cook vegetables for improved digestibility
  • To minimize exacerbating diarrhea, limit or avoid wheat bran and foods made with wheat bran, prunes, dried fruits, and popcorn
  • Choose foods that are low in amines (see table)

Foods Lower in Amines

Fresh lean meats, fresh poultry, fresh fish

Most vegetables—but cooked may be better tolerated than raw

Fruits in moderate amounts—but not banana, avocado, raspberries

Grain foods, starchy foods—lower fiber or soft cooked grains may be most tolerated

Un-aged cheeses and dairy—low fat cottage cheese, ricotta cheese, mozzarella cheese; low fat yogurt or kefir; low fat cream cheese; low fat milk or low fat lactose-free milk

Fresh soyfoods—soymilk, edamame

 

Keeping a food and symptom diary may be helpful. Record your daily food and drink consumption and any symptoms that you experience. You may start to notice a pattern. A sample food diary can be found here:

If you have lost a lot of weight, significantly decreased your food intake, or have been told by your doctor that your tumor is secreting excess serotonin, you may be at risk for a niacin deficiency. Niacin deficiency can result in scaly skin (dermatitis), especially on skin that is exposed to the sun, diarrhea, nervousness, and depression. To reduce your risk of niacin deficiency, increase your protein intake and consider taking a niacin (niacinamide or “no flush” niacin) supplement of 25-50mg twice per day. Niacin is also found in multivitamins and B-complex vitamins.  You should consult with your medical care team if you are concerned about a niacin deficiency. 

If you have eliminated your trigger foods and still have diarrhea, try some of these other strategies to potentially help minimize diarrhea.

Once your symptoms of carcinoid syndrome are controlled, you should follow nutrition recommendations for cancer prevention.

Consider meeting with a registered dietitian where you are being treated to review your specific situation and past medical history. The registered dietitian can devise a plan, along with your input, to address your specific nutritional needs and concerns. To search for registered dietitians in your area, check here and here.

 

References and Suggested Further Reading

www.caringforcarcinoid.org

www.carcinoid.org

http://www.carcinoid.org/content/nutritional-concerns-carcinoid-patient-developing-nutrition-guidelines-persons-carcinoid-dis

http://www.carcinoid.org/sites/default/files/Miles%20_Carcinoid_Nutrition_9_2006.pdf

 

The original question and answer were generously donated by Diana Dyer, MS, RD a cancer survivor, registered dietitian, organic garlic farmer, and the author of "A Dietitian's Cancer Story: Information & Inspiration for Recovery & Healing from a 3-time Cancer Survivor.

Question and Answer updated by Alison Ryan,
MS, RD, CSO, CNSC on behalf of the ON DPG

 

 

 

Page Updated: February 2014