A Practical Guide to Nutrition for People Living with HIV
2.3 Managing Symptoms and Side Effects
Symptoms and side effects are common with HIV. They can be due to HIV infection itself, to co-infection or opportunistic infection, or to HAART. It is important to discuss with your doctor any symptoms you are experiencing, as they may indicate an underlying problem that requires medical treatment. Likewise, make sure you discuss with your healthcare team any side effects you experience—particularly those from anti-HIV drugs—because managing side effects is an important part of staying on your therapy. There are many ways to help you. This section of the guide provides dietary strategies for managing the most common symptoms or side effects.
CATIE also publishes a Practical Guide to HIV Drug Side Effects. Find it online or call 1-800-263-1638 to speak with a treatment information educator.
Constipation occurs when the remains of digestion move too slowly though the intestinal tract. Too much water gets reabsorbed in the colon, making the stools hard to pass. People on methadone and those in recovery from some street drugs frequently report constipation problems. The main dietary strategy to counter constipation is to speed movement through the tract by increasing fibre, fluids and exercise.
There are two kinds of fibre, and each kind acts differently in the gut. Insoluble fibre is found in foods like wheat bran, the roughage in whole grains and the skins and seeds of fruits and vegetables. This kind of fibre does not dissolve in water and makes food and waste move more quickly through the intestines. Therefore, it is the best kind for treating constipation. Soluble fibre, on the other hand, will absorb water and swell. It is found in foods like oatmeal and some fruits. Soluble fibre is good for treating diarrhea and high cholesterol or blood sugar levels. It will not speed up movement through the gut, but it helps constipation by increasing the bulk of the stool.
Keeping your bowels moving
- Increase fibre intake with wheat bran, high-fibre cereals, psyllium, whole grains, legumes (beans and peas), fruits and vegetables. Dried fruits (e.g. prunes, dates, figs, raisins) and bran cereals like All Bran Fibre and 100% Bran are particularly effective.
- Be sure your fluid intake is at least 8 to 10 cups per day (see “Don’t forget the fluids”).
- Increase activity level. Walking is particularly good, especially after a meal.
- Take your time on the toilet, and try to go at the same time every day.
- If you take calcium supplements, counter their constipating effect with magnesium.
- Avoid using laxatives more than once in a while. If you use them often, the bowel can become dependent on them.
Diarrhea can occur from HIV infection of some immune cells within the intestine, an opportunistic infection or the side effect of medications. It can result in poor absorption of carbohydrates, fats, proteins and micronutrients, especially if it persists for a long time. Diarrhea occurs when substances pass through the intestines too quickly. There is not enough time to absorb all the nutrients, water and electrolytes. The end result is liquid stools and inadequate absorption. The main dietary strategies to counter diarrhea are to decrease the intake of substances that irritate the intestines and to slow down passage through the tract.
Calming the gut
- Limit your consumption of high-fat foods, sweet drinks, alcohol, caffeine, tobacco and stimulants.
- Limit your intake of insoluble fibre or roughage, such as wheat bran, berries, seeds and the skins of many fruits and vegetables.
- Add more soluble fibre to your meals. Good sources are oatmeal, rice, cream of wheat, applesauce and mashed potatoes. Make rice porridge by cooking 1 cup white rice in 6 cups water or broth for 1 hour or longer. Eat the rice and starchy broth.
- Eat foods high in potassium, such as bananas and potatoes, and salty foods such as canned soups.
- Some people benefit from 500 mg calcium twice a day.
- A daily glutamine supplement of 10 to 30 grams may be beneficial.
- Avoid magnesium supplements and high doses of vitamin C.
- Find out if any complementary or alternative medicines you take are contributing to the diarrhea.
- Replenish fluids by drinking plenty of liquids such as diluted juices or sport drinks (e.g. Gatorade). Or try this recipe for a homemade hydration drink: Mix 1 cup orange juice with 3 cups water and ½ teaspoon salt.
- Try a lactose-free diet by avoiding milk, cheese, yogurt and ice cream. After 2 to 4 weeks, slowly add back yogurt with live culture, then hard cheese, then Lactaid brand milk. Lactose intolerance can develop with prolonged diarrhea.
- Probiotics such as acidophilus and bifidobacter can help replenish the good bacteria in the gut. These are found as supplements and in yogurts with live culture.
Intestinal gas is a normal by-product of digestion and absorption. When it occurs in normal amounts, it may cause some discomfort but is usually quite manageable. The main dietary strategies to treat gas are 1) avoid foods and beverages that create more gas, and 2) eat in a way that regulates contractions of the bowel. While gas and bloating are common side effects of some anti-HIV drugs, they may also be the result of another gastrointestinal problem. If you are experiencing these symptoms, be sure to tell your doctor, as they may require investigation.
Decreasing tummy rumbles
- Eat at regular times to help the bowel become more regulated in its contractions.
- If constipation or diarrhea is a problem, see those sections for more information.
- Eat slowly and chew food well to aid in digestion and to avoid swallowing air.
- Chew less gum and drink fewer carbonated beverages, especially beer, as these add air into the stomach.
- Some very healthy foods like legumes (dried peas and beans), onions, garlic, broccoli and cabbage produce a lot of gas. Instead of dropping them from your diet, try a product like Beano when you eat these foods. Fennel seeds (as a tea, in your cooking or just chewed alone) will also reduce gas and aid indigestion.
- Try to identify the foods that increase the problem. When gas attacks, think of what you ate at the previous meal. Look for patterns. Then see if it helps to reduce or avoid the suspect food.
- Lactaid enzymes taken with dairy products may help.
- Try acidophilus supplements or commercial over-the-counter products that contain simethicone (e.g. GAS-X).
Not eating enough due to a lack of appetite is often the driving force behind weight loss and wasting in HIV disease. Lack of appetite may arise due to illness, fatigue, depression, drug side effects or addiction. It is a very common problem and can be difficult to overcome. Dealing with persistent lack of appetite can be depressing and a source of anxiety and stress. In some cases, in spite of best efforts, it is not possible to overcome the lack of appetite, and nutritional status continues to decline.
Eating when not hungry
- Eat often; small amounts add up over the course of the day.
- Consider meal replacement drinks like Boost, Resource or Ensure. These products may be covered by your drug insurance plan. Talk with your healthcare professional or insurance to find out more.
- Eat on a schedule. To remind yourself to eat, use external cues such as an alarm clock, a favourite TV show, the mealtime of a partner or other family members, break times at work or school, or the time you feed the dog or cat.
- Notice when you have your best time of day and eat the most nourishing foods at that time.
- Fresh air or light activity may stimulate appetite, so try to get outside.
- Make every bite count by emphasizing wholesome, nutrient-dense foods.
- Make eating more pleasurable (e.g. share a meal with friends or family).
- Take advantage of offers of help and meal programs.
Boosting the appetite
Appetite stimulants may be effective at improving food intake and promoting weight gain. Sometimes a short course of appetite stimulants can help restore normal appetite. Discuss this option with your doctor if you think you need more help with an appetite problem.
Megestrol acetate (Megace) is an appetite stimulant that has been used for many years to improve appetite in people with HIV. Studies of Megace in HIV disease have found that people do gain weight, although most of the weight gained is fat, not lean tissue. In spite of this, food intake increases and people feel stronger and more able to be active, which will eventually restore lean body mass. Megace is a drug that mimics the female sex hormone progestin. It should not be used for a long period, as it may affect the levels of other hormones, testosterone in particular.
Marinol, a derivative of THC (the active compound in marijuana), decreases nausea and sometimes increases appetite but has not been found to be that effective at promoting weight gain in people with HIV. The side effects are sleepiness and impaired ability to think clearly, which some people find unacceptable. Taking it at night may decrease these side effects and make it more tolerable.
Marijuana is effective at treating nausea and increasing appetite. In Canada, it is possible to obtain a permit from the federal government to possess and grow marijuana for its therapeutic value. Smoking or eating marijuana prior to meals and snacks increases food intake, but the food choices may not always be the healthiest. Planning ahead can ensure that the appetite-stimulating effects are used to the best nutritional benefit. For more information on medicinal marijuana, read “Cultivating Compassion” in the Summer 2007 issue of CATIE’s The Positive Side, available at www.positiveside.ca.
Nausea can occur from stomach disorders, opportunistic infection and most commonly as a side effect of many medications. Vomiting, though not as common, is more serious because it can result in nutrient loss and dehydration. The main strategy to counter nausea is to eat foods that are easy to tolerate and to eat often enough to get adequate nutrition.
Nausea is one condition for which it can be best to follow your culture’s habits and treatments. For example, people who eat a typical North American diet often prefer bland foods. People who eat a South Asian diet often turn to sweet, salty, sour or bitter foods to settle an upset stomach.
Keeping food down
- Eat small amounts frequently, at least every 2 to 3 hours. Low blood sugar, which occurs when you don’t get enough nutrients, can make nausea worse.
- Cold or room-temperature foods may be easier to tolerate.
- If you are vomiting, remember to drink at least 8 cups of fluid each day.
- Wear loose clothes when eating.
- Try to avoid cooking smells.
- Don’t lie down for at least 20 minutes after eating.
- Ginger may be helpful. Drink some flat ginger ale. Stir it to remove the bubbles. To make your own homemade ginger ale, simmer fresh ginger in hot water. Add sugar, maple syrup or honey to taste. Cool and add water or club soda to serve.
People with HIV may experience problems in the mouth or throat due to side effects of medications, damaged or diseased teeth and gums, or opportunistic infections like thrush, chancres or herpes. Anti-HIV drugs sometimes cause abnormal tastes or dry mouth. The most common cause of swallowing problems is esophageal candidiasis (thrush in the throat). The overall strategy to address painful chewing and swallowing is to adjust textures and tastes for more soothing foods and beverages.
Dealing with painful chewing
- If it hurts, don’t eat it.
- Don’t eat citrus fruits and tomato products, because the acidity in them may irritate mouth sores.
- Choose soft, moist, bland, non-irritating foods, such as oatmeal, pasta, avocados, soups, stews, mashed yams or potatoes, bananas, custards, puddings and fish. Moisten foods with gravy and sauces.
- Try using a straw to drink liquids.
- Try to avoid smoking and alcohol, as they irritate inflamed tissues in the mouth.
- Thrush (Candida) thrives on sugar, so limit sweets or rinse your mouth well after sweet foods and drinks.
Dealing with dry mouth and altered tastes
- Choose moist foods or moisten foods with gravy, sauces, water or broth.
- Brush teeth after meals with a soft toothbrush.
- Drink plenty of fluids, especially while eating.
- Avoid commercial mouthwashes, as they can irritate the mouth.
- Try a mouth rinse using ¼ teaspoon baking soda to 1 cup cool water. Swirl it in your mouth and then spit it out. Do not swallow.
- Use lip balm.
- For altered tastes, adjust the flavouring of foods to enhance pleasant flavours.
- Try masking unpleasant tastes with marinades, sauces, salt and spices.
- Chocolate and vanilla are good taste and smell stimulants.
- Sugar masks salty tastes and salt masks sweet tastes.
- Use plastic utensils to decrease a metallic taste and use sugar-free gum and candies to cover up a bitter taste.
Dealing with swallowing problems
- Choose softer foods with fewer chunks. Soft, mashed foods and thick liquids like milkshakes and meal replacement drinks are usually easier to tolerate. It may be necessary to puree food in a blender if swallowing is very painful.
- If there is a sensation of choking while eating or drinking, you may be at risk of aspirating food into the lungs. Be sure to discuss this right away with your healthcare team.
Severe weight loss is called wasting syndrome. While wasting has several definitions, the following criteria can be used to diagnose wasting:
- loss of 10% of body weight in 6 months or less OR
- 7.5% loss in 3 months or less OR
- 5% loss in 1 month OR
- BMI decreases to below 20 OR
- loss of 5% of body cell mass
Unwanted weight loss remains a serious risk for people with HIV because, as discussed in Nutrition, Weight and HIV, even small losses of body cell mass can be dangerous. The primary strategy for treating weight loss and wasting is to increase food intake to the level needed to promote weight gain. This is achieved with a high-calorie, high-protein diet and a daily multivitamin-mineral supplement.
Increasing calories and protein
- Eat often, at least 5 to 6 times per day.
- Eat high-calorie and high-protein foods like dairy products, nuts, peanut butter and dried fruits. For example, ½ cup of nuts has about 400 calories.
- Drink fluids with calories, such as milk, chocolate milk, soy milk, juices, homemade milkshakes, fortified malted drinks (e.g. Horlick’s, Ovaltine) and meal replacement drinks (e.g. Ensure, Boost, Nutren, Resource).
- Try a calorie supplement like Polycose Powder.
- Eat fats as you can. Fats are high in calories but may be hard to digest and can raise blood cholesterol levels.
- Fortify foods and fluids with skim milk powder. One cup of powder has 250 calories and 24 grams of protein.
Sometimes, no matter how hard a person with HIV tries, it is impossible to gain weight. For people who cannot eat enough, who continue to lose weight or who remain seriously underweight, nutrition support is an option. Nutrition support can be delivered through a feeding tube into the stomach or via an intravenous line directly into the bloodstream. Feeding tubes are used when the digestive system is working but the person is malnourished and cannot eat enough.
For short-term use, a nasogastric tube is placed through the nose and into the stomach. This is most often used during a hospital admission. For the longer term, especially for home-tube feeding, a gastrostomy tube, or PEG (percutaneous endoscopic gastrostomy), is surgically placed through the abdominal wall. Special formula is dripped into the stomach and may provide total nutrition or be a supplement to regular food intake.
Most people are reluctant to have a feeding tube because it is seen as invasive and psychologically is a symbol of serious illness. However, studies have shown that people with HIV who do accept this type of feeding gain weight and body cell mass, have improved functional ability and better quality of life. This type of nutrition support can save your life if you really need it.