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Lise Gloede, R.D., speaking at the 2003 National Conference.

Eating Well: Nutritional Needs in Scleroderma

By Lise Gloede, Registered Dietician (originally published in "Scleroderma Voice," 2001, #4)

Editor's note: This is a long article. You can skip directly to the subheads that interest you, by clicking on these links:

• Food Preparation and Intake
• Your Mouth
• Swallowing (Mouth through Esophagus)
• Moving Down the Esophagus
• The Stomach and Intestines
• Drink Water!
• Get Enough Calcium
• Maintain Your Weight and Fight Malnutrition
• Conclusion

The purpose of this article is to identify nutritional needs in scleroderma and provide practical food advice, with the two goals of minimizing nutrition-related side effects and to improve your overall nutritional health.

Since scleroderma can be manifested in different ways and each person may have differing nutritional needs, there is no one "diet for scleroderma."

This article will discuss nutritional therapy for mouth, esophageal, and swallowing problems, calcium and fiber intake, and alternate ways of nutritional intake.

There are many nutrition-related side effects in other parts of the body, such as kidney problems, that require nutritional intervention and modifications to what you eat. However, due to space limitations, not all of these will be discussed in this article. If you want to address your individual nutritional needs related to scleroderma in more detail, you should contact a Registered Dietitian and set up a consultation.

Step 1: Food Preparation and Intake

The eating process starts with holding the food to prepare it, then gripping the food to get it into your mouth, and then follows the chewing and swallowing process.

This is not always easy, especially if scleroderma has hardened the skin on your fingers and hands. If this problem hinders your food intake:

1. Get kitchen equipment and utensils with thick rubber handles to aid in gripping.
2. Try various types of cups and mugs until the size and handle configuration are the easiest to pick up.
3. Stock up on frozen meals or prepared food when possible.
4. Buy precut fruits and vegetables to help if your joints are stiff and you are having trouble cutting.

Step 2: Your Mouth

The easiest way to discuss nutrition therapy for various body areas is to go through the digestive process and follow the food on its course, discussing the problems that may occur along the way.

The mouth is the first place the food goes, and there it is mixed with saliva. However, if dry mouth occurs, as is common with Sjogren's syndrome or as a result of taking some types of antidepressants, take the following steps:

1. Drink plenty of fluids, continuously sipping throughout the entire day.
2. Take sips from a water bottle (or plastic squirt bottle, which can be helpful if lip and mouth movements are difficult).
3. If you can, chew sugar-free gum or pop a sugar-free candy into your mouth to stimulate saliva production.
4. Use artificial saliva (for example, "Salivert," "Optimoist," or "Salix Lozenges"), available at drugstores.

Step 3: Swallowing (Mouth through Esophagus)

Overproduction of collagen due to scleroderma can cause thickening and scarring of tissue. Weakened muscles can cause slow movement of food which is called "dysmotility." Difficulty in swallowing is called "dysphagia." This can also result from narrowing of the esophagus. When these problems occur:

1. Eat slowly. Allow more time for eating, due to slower movement of food passing through.
2. Chew well. Be careful not to take any food into your lungs (aspiration)
3. Eat soft or pureed foods (mashed potatoes, applesauce). Moisten dry foods like bread or crackers by dipping them into liquids.
4. Drink water or other fluids frequently, and between bites to help the food go down.
5. Blenderize foods, especially meats or vegetables. Add seasonings, broth, or margarine to thin to desired consistency.

Step 4: Moving Down the Esophagus

GERD, or Gastro-Esophageal Reflux Disease, can cause irritation in the esophagus, the pipe that connects the throat area to the stomach. The muscles at the lower end of the esophagus may weaken. This may let stomach acid—which is normally present in the stomach—backwash into the esophagus, causing irritation or heartburn. This is called "acid reflux." To reduce it, try the following:

1. Decrease or eliminate your intake of alcohol, carbonated drinks, chocolate, and caffeine, which can stimulate acid production in your stomach.
2. Avoid highly acidic foods, such as citrus fruit, tomatoes, tomato products, and onions.
3. Avoid fatty and greasy foods. Foods with high fat content stay in the stomach longer than lower-fat foods, increasing the likelihood of the food backing up into the esophagus.
4. Sit upright for 1–2 hours after eating, so gravity can help your food move downward. In other words, try not to eat just before lying down, napping, or going to bed at night.
5. Eat smaller, more frequent meals (4–6 small meals per day versus 2–3 larger meals per day).
6. Do not eat 2–3 hours before bed.
7. Raise the head of your bed 4 inches, using old phone books. (Again letting gravity help your digestive process!)

Your physician may also prescribe medications to help neutralize the acid.

Step 5: The Stomach and Intestines

Sometimes food passes too fast or too slow when moving from the stomach into the small and large intestines. Diarrhea and its opposite, constipation, can be unpleasant side effects of scleroderma, when there is damage to the muscles of the small or large intestine.

For bowel problems in general, consider taking a multivitamin, especially if you are eliminating several foods (which are your normal source of most vitamins) from your usual diet. There are liquid multivitamins for people with swallowing difficulties.

Eating foods with some good bacteria or "probiotics" may also be beneficial. Probiotics are found in yogurt or kefir, a yogurt drink. Look on the label for "active or live yogurt cultures." Also, the labeling information "Lactobacillus.Acidophilus and L. Reuteri" usually indicates live yogurt cultures.

Diarrhea

Diarrhea is often due to weakened muscles of the gastrointestinal tract, antibiotics, or malabsorption (poor absorption of food). In some cases, foods that have soluble fiber may help with diarrhea. Soluble fiber sources include bananas, applesauce, apples, oatmeal and oat bran, and prunes. Avoid whole wheat bread and wheat germ, large quantities of raw vegetables, and raw whole fruits, other than bananas. Keep in mind that these soluble-fiber guidelines should be determined on an individual basis, based on what works best for you.

Avoiding high-fat foods, fried foods, and rich desserts may also help with diarrhea. However, if you are losing too much weight, this guideline may also need to be modified individually.

If severe diarrhea or constipation persists, contact a physician.

Constipation

Constipation may also occur, due to weak and scarred muscles in the colon wall.

Suggestions/or relieving constipation:

1. Drink water: 48–64 oz./day.
2. If possible, do some physical activity. Exercise stimulates movement of the bowels.
3. Eat more fiber. Aim for 20–35 grams/day. Be sure to add fiber gradually into the diet. Fiber sources, especially insoluble fiber, include whole grain breads, whole grain cereals, fruit, vegetables, and legumes.

Step 6: Drink Water!

Did you know ... the body is 60–70 water? And it is the second most important substance needed by humans, second only to the need for oxygen?

For those with Raynaud's, allow water to come to room temperature. Ask for water without ice.

If you have swollen hands, continue drinking water. If you are on diuretics, you still need to drink plenty of water. The only exception is if your physician has prescribed a fluid restriction. Unless your doctor has told you to limit your fluids, keep drinking water.

Step 7: Get Enough Calcium

Every person needs enough calcium to build and maintain strong bones. Calcium is also important for healthy teeth, regulating your heartbeat, performing muscle contractions, and maintaining healthy blood pressure.

If you don't supply your body with enough calcium from external sources, it takes what it needs from your bones. Calcium is important not only for the general population and especially for women, but it is even more important if you have scleroderma and are taking steroids. Steroid drugs such as prednisone and solumedrol can deplete your body's calcium stores and lead to osteoporosis (loss of bone density, which can lead to a host of physical ailments). Therefore, be sure to get plenty of calcium from your food or by taking calcium supplements.

These figures were updated in 1997 by the National Academy of Sciences. They help you maintain the calcium levels that are thought to lead to the fewest diet-related osteoporosis fractures.

Notice that mature adults need less calcium than growing children, but after age 50 we need more calcium again. Note: In the U.S., all cow's milk is fortified with Vitamin D, which helps your body absorb the calcium.

This calcium data is from Bowe's and Church's Food Values of Portions Commonly Used.

Significant sources of calcium are foods that provide 20–50 percent of the Daily Value of calcium. Unfortified soymilk has very little calcium. Tofu can be fortified with calcium; make sure the label says it was made with a calcium derivative, like calcium sulfate.

Step 8: Maintain Your Weight and Fight Malnutrition

Unintentional weight loss can be a problem. This can happen for any number of reasons. Some suggestions to combat weight loss are:

1. Eat several times per day—6 or more times.
2. Try milkshakes with whole milk.
3. Add calorie boosters such as peanut butter, cheese, whipped cream, ice cream, juice, nectar.
4. Try products such as Ensure, Boost, or Resource.

Some people are unable to keep up their weight, or may be unable to swallow, or may have severe esophageal problems. When people with scleroderma are in the hospital and have lost significant weight, a feeding tube can be inserted either through the nose, the stomach, or the small intestine to nourish your body and keep your medications working properly. This is called "enteral nutrition" or tube feeding.

Enteral nutrition can help prevent further weight loss or malnutrition due to your body not getting enough essential nutrients. It is important to be well-nourished for your medications to work, to give you adequate energy, and for your body to maintain its normal daily processes. Your physician would discuss enteral nutrition with you, if it is needed.

If the gastrointestinal tract is not functioning, because there is a blockage or other problem, sometimes the physician prescribes "parenteral nutrition." This consists of feeding through your veins. Parenteral nutrition may be in order if you have lost a great deal of weight, if you are unable to eat by mouth or tube for a prolonged period of time, or if your gastrointestinal tract is severely affected. Only a very small percentage of people have to be fed this way.

Remember: the goal is always to keep you well-nourished.

Conclusion

It is important not just to learn what you should do for proper nutrition, but also how to apply these practices in daily life. We may hope that in the future there will be more scientific studies published on proper nutrition in scleroderma, and more articles and books on this important topic.

If you are concerned about your food intake and want more detail, you should make an appointment with a Registered Dietitian. To find a Registered Dietitian in your area, visit the American Dietetic Association's website at www.eatright.org.

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