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Connective-Tissue Disease Self Help

Scleroderma is a connective-tissue disease characterized by a thickening and loss of elasticity in the skin, joints, digestive tract (especially in the esophagus), lungs, thyroid, heart, and kidneys. Mild or severe, it can flare up and subside in intensity. There are two forms of the disease: localized to one or two locations or generalized throughout the body.

The most common initial complaint is loss of circulation in toes or fingers (Raynaud’s syndrome), characterized by swelling and a thickening of skin. About 300,000 Americans have scleroderma. Joint pain is an early symptom. As the disease progresses, the skin becomes taut and shiny, with the face becoming masklike.

There may be red blotches on the skin where capillaries have broken. Small calcifications occur under the skin on the fingers. People become malnourished and may need supplemental foods or total parenteral feeding (tube feeding). Scleroderma has definite digestive components in 80 to 100 percent of people and can affect any part of the digestive tract.

In scleroderma, people begin to lose peristalsis. Early in the disease, the esophageal sphincter becomes stiff and loses elasticity, which causes gastric juices to go up into the esophagus and burn the lining, which causes heartburn. Sometimes there is regurgitation back into the mouth.

Eventually, the acids damage the esophagus and may lead to Barrett’s disease, bleeding, or ulceration. It is common to have fungal or candida infections in the esophagus, often called thrush. Because there is loss of peristalsis, the small intestines are prone to bacterial overgrowth.

The bacteria break down bile acids and gut mucosa causing malabsorption of nutrients, which leads to weight loss and diarrhea. The large intestine may develop diverticular pouches. Constipation is common. Late in the disease, the stomach may become involved.

Malabsorption leads to poor movement, dysbiosis, and semiobstructions in the small intestines. Small bowel bacterial overgrowth is common because of a loss of peristaltic function in the intestines. Use of steroid medications increases the likelihood of yeast infections in the digestive tract.

Treatment with antimicrobial medications will cure the infection temporarily but doesn’t change the fact that there is a loss of movement in the area. Small bowel overgrowth must be routinely monitored and treated if an infection is present. There is no single known cause of scleroderma.

It is caused by a combination of genetics and environmental factors. Evidence suggests that prolonged exposure to silica, silicone, and chemical solvents significantly increases the risk of developing scleroderma. (Another possible association is in workers with repetitive hand and arm vibration.)

In some individuals, solvents trigger the illness. An evaluation was made of 178 people with scleroderma, in comparison to 200 controls. People with scleroderma were more likely to have higher concentrations of and levels of exposure to solvents, especially trichloroethylene.

Scleroderma may also be linked to autoimmune disease. In a small study, forty-four women and six men went through extensive testing and examination to see if there was a relationship between their work and autoimmune disease. They had been working for an average of six years in a factory that produced scouring powder with a high silica content.

Thirty-two, or 64 percent, showed symptoms of a systemic illness, six with Sjögren’s syndrome, five with scleroderma, three with systemic lupus, five with a combination syndrome, and thirteen who didn’t fit into any definite pattern of disease.

Seventy-two percent had elevated ANA (antinuclear antibodies), an indicator of autoimmune connective tissue diseases. The conclusion was that workers who are continually exposed to silica have a high probability of developing an autoimmune problem.

The research on breast implants is mixed. Silicone breast implants may also play a role in some women with scleroderma. Twenty-six women with either lupus or scleroderma had breast implants removed. Three had complete remission of at least two years.

If you have breast implants, testing for silicone and chemical antibodies would help you determine if you might benefit from their removal. Some evidence suggests that people with scleroderma have a genetic block of the delta-6-desaturase enzyme. This enzyme system converts fatty acids from linolenic acid to EPA and DHA.

Supplementation with fish oils would circumvent this. There haven’t been a lot of studies using fish oils, but the small amount of literature shows them to be of benefit. Fatty acid testing would be advisable. Antioxidants are beneficial in people with scleroderma. Raynaud’s causes a surge of free radicals that need to be quenched.

Studies have shown that blood levels of vitamin C, vitamin E, selenium, and carotenoids are all lower in people with scleroderma, despite normal levels in their diets. Supplementation with antioxidant nutrients and testing for antioxidant status to see if levels are adequate is advisable.

Specific use of N-acetyl cysteine increases glutathione levels and is also advised. Use of several antioxidant supplements may be necessary for optimal results. Resveratrol, from red grapes, may also be of use. Homocysteine may be elevated in people with scleroderma.

Use of vitamin B6, B12, folic acid, and betaine (TMG) may be useful in normalizing levels. Natural therapies can work along with medical therapies for scleroderma. Infections must be treated, and beneficial flora given. Nutrients that help with collagen maintenance and repair are essential to help prevent loss of elasticity in skin and organs.

Think of vitamin C, quercetin, zinc, glucosamine, and chondroitin. Foods and supplements that help reduce production of arachidonic acid will reduce inflammation and pain. Good-quality oils, fish, nuts, and seeds work in this way. It’s also important to increase circulation and oxygen supply to the tissues. Finally, a nutrient-dense food plan must be developed that works to offset the problems of malnutrition, which are common.

Healing Options

• Treat infections. Small bowel infections, esophageal candida, and other infections are likely to recur. You may be able to keep the infections at bay with use of colloidal silver, grapefruit seed extract, or garlic capsules. Each of these substances has wide antimicrobial properties, low toxicity, and a low incidence of negative side effects. Your doctor may prescribe antibiotics or antifungal medications.

• Try probiotics. Flora supplements containing acidophilus, bifidobacteria, Saccharomyces boulardii, and other beneficial bacteria may help control infections of the intestines. No research has been done on this specifically for scleroderma, but they have been helpful in other cases of small bowel bacterial overgrowth. Take 4 to 6 capsules daily.

• Detoxify. A liver function panel can determine whether your phase I and phase II liver detoxification pathways are working normally. Because the risk of scleroderma increases with solvent exposure, a liver detoxification program may be of significant benefit. In the few people I’ve worked with who have scleroderma, this has proven to be an effective starting point.

• Try DHEA. DHEA is an adrenal hormone that has been found to be beneficial for people with scleroderma, especially in perimenopausal women. Because DHEA is a hormone, I recommend that you have a free DHEA/cortisol saliva test to determine if you actually need supplementation and to monitor your dosage levels. Dosages will vary, depending on your personal needs.

• Try the elimination-provocation diet. Explore the relationship between your scleroderma and food and environmental sensitivities through laboratory testing and the elimination-provocation diet. For best results, work with a nutritionist or physician who is familiar with food sensitivity protocols.

• Make dietary changes. People with scleroderma are often malnourished. So eat at least five servings of fruits and vegetables daily and as many organic and natural foods as possible. You may want to supplement your diet with nutrient-rich protein powder drinks and spirulina or blue-green algae, available at health-food stores. Eliminate nearly all foods that don’t contribute to your nutritional well-being. Make changes gradually.

• Take a multivitamin with minerals. Poor diet, loss of movement in the digestive tract, loss of elasticity of the organs, infections, and medications all contribute to the malabsorption of nutrients. Selenium and vitamin C deficiencies are common in people with scleroderma.

At least seventeen nutrients are essential for formation of bone and cartilage, so it’s important to find a supplement that supports these needs.

Look for a supplement that contains 10,000 IU vitamin A, 800 to 1,000 milligrams calcium, 400 to 500 milligrams magnesium, 400 IU vitamin E, at least 250 milligrams vitamin C, 50 milligrams vitamin B6, 15 to 50 milligrams zinc, 5 to 10 milligrams manganese, 12 milligrams copper, and 200 micrograms selenium in addition to other nutrients. Follow the dosage on the bottle to get nutrients in appropriate amounts.

• Take vitamin C. Vitamin C is vital for formation of cartilage and collagen, which is a fibrous protein that forms strong connective tissue necessary for bone strength. Vitamin C also plays an important role in immune response, helping protect us from diseaseproducing microbes.

Vitamin C also inhibits formation of inflammatory prostaglandins, helping to reduce pain, inflammation, and swelling. If you have candida or bacterial overgrowth, vitamin C can boost your body’s ability to defend itself. Vitamin C is also an antioxidant, needed to counter free radical formation noted in sclerotic conditions. Take 1 to 3 grams daily in an ascorbate or ester form. For best results, do the vitamin C flush.

• Try gamma-linolenic acid (GLA). One gram of evening primrose oil was given to four women with scleroderma three times daily for one year. They experienced a reduction in pain, improved skin texture, and healing of sores; red patches on skin due to broken capillaries were much improved. The researchers suggest that 6 grams daily may be of greater benefit. Take 3 to 6 grams of evening primrose oil, borage oil, or flaxseed oil daily.

• Increase consumption of omega-3 fatty acids and fish oils. Fish oil capsules reduce morning stiffness and joint tenderness. Similar results can be obtained by eating fish high in EPA and DHA—salmon, mackerel, halibut, tuna, sardines, and herring—two to four times a week.

Fish oils increase blood-clotting time and should not be used by people with hemophilia or those who take anticoagulant medicines or aspirin regularly. It’s easier for most people to eat fish two to four times each week. You can also take fish oil capsules, 4 to 10 daily.

• Try licorice. Deglycyrrhized (DGL) licorice helps heal mucous membranes by increasing healing prostaglandins that promote mucus secretion and cell proliferation. Licorice also enhances the blood flow and health of intestinal tract cells. Be sure to use DGL licorice to avoid side effects caused by whole licorice. Chew or swallow 2 tablets three to four times daily.

• Try slippery elm bark. Slippery elm bark has demulcent properties, so it’s gentle and soothing to mucous membranes. It has been a folk remedy for both heartburn and ulcers in European and Native American cultures and was used as a food by Native Americans.

Slippery elm bark can be used in large amounts without harm. Drink as a tea or chew on the bark. To make a tea, simmer 1 teaspoon of slippery elm bark in 2 cups of water for twenty minutes and strain. Sweeten if you wish, and drink freely. You can also purchase slippery elm lozenges at health-food stores and some drugstores.

• Take glutamine. Although I was unable to find any references for use of glutamine to heal the esophagus, it makes theoretical sense. The digestive tract uses glutamine as a fuel source and for healing. It is effective for healing stomach ulcers, irritable bowel syndrome, and ulcerative bowel diseases, and it is likely to be useful in the upper GI tract as well. Begin a one-month trial with 8 grams daily in divided doses. If it’s helpful, continue.

• Try glucosamine. Glucosamine sulfate is used therapeutically to help repair cartilage, reduce swelling and inflammation, and restore joint function. Green-lipped mussels are a rich source of glycosaminoglycans. Use of glucosamine sulfate has no associated side effects. Take 500 milligrams two to four times daily.

• Take ginger. Ginger can provide temporary relief, it has some antiinflammatory properties, and it can help expel gas. Ginger can be used as an ingredient in food or taken as a supplement. To make a tea, take ½ teaspoon of powdered ginger or a few slices of fresh ginger per cup of boiled water. Steep for ten minutes and drink. If you’d like, sweeten it with honey. Cook with ginger and use it freely.

• Try meadowsweet herb. A demulcent, meadowsweet soothes inflamed mucous membranes. To make a tea, take 1 to 2 teaspoons of the dried herb in 1 cup of boiled water. Steep for ten minutes, and sweeten with honey if you like. Drink 3 cups daily.

• Try bromelain. Bromelain is an enzyme from pineapple that acts as an anti-inflammatory in much the same way that evening primrose oil, fish oils, and borage oils do. It interferes with production of arachidonic acid, which reduces inflammation.

It also prevents platelet aggregation and interferes with growth of malignant cells. Bromelain can be taken with meals as a digestive aid, but as an anti-inflammatory it must be taken between meals. Take 500 to 1,000 milligrams two to three times daily between meals.

• Try quercetin. Quercetin is the most effective bioflavonoid in its anti-inflammatory effects. It can be used to reduce pain and inflammatory responses and for control of allergies. Take 500 to 1,000 milligrams two to four times daily.

Eating Disorders

An eating disorder is a psychological illness that leads you to eat either too much or too little. Indulging in a hot fudge sundae once in a while is not an eating disorder. Neither is dieting for three weeks so that you can fit into last year’s dress this New Year’s Eve.

The difference between normal indulgence and normal dieting to lose weight versus an eating disorder is that the first two are acceptable, healthy behavior while an eating disorder is a potentially life-threatening illness that requires immediate medical attention.

Eating too much

Although many recent studies document an alarming worldwide increase in obesity, particularly among young children, not everyone who is larger or heavier than the current American ideal has an eating disorder. Human bodies come in many different sizes, and some healthy people are just naturally larger or heavier than others.

An eating disorder may be present, though, when:

• A person continually confuses the desire for food (appetite) with the need for food (hunger).

• A person who has access to a normal diet experiences psychological distress when denied food.

• A person uses food to relieve anxiety provoked by what he or she considers a scary situation — a new job, a party, ordinary criticism, or a deadline.

Traditionally, doctors have found that treating obesity successfully is difficult. However, recent research suggests that some people overeat in response to irregularities in the production of chemicals that regulate satiety (your feeling of fullness).

This research may open the path to new kinds of drugs that can control extreme appetite, thus reducing the incidence of obesity-related disorders such as arthritis, diabetes, high blood pressure, and heart disease.

Bingeing, purging, and starving

Some people relieve their anxiety not by eating but by refusing to eat or by regurgitating food after they’ve eaten it. The first kind of behavior is called anorexia nervosa; the second, bulimia. Anorexia nervosa (voluntary starvation), the eating disorder that sidelined Mary-Kate Olsen in 2004, is virtually unknown in places where food is hard to come by.

It seems to be an affliction of affluence, most likely to strike the young and well-to-do. It’s nine times more common among women than among men. Many doctors who specialize in treating people with eating disorders suggest that anorexia nervosa may be an attempt to control one’s life by rejecting a developing body.

In other words, by starving themselves, anorexic girls avoid developing breasts and hips, and anorexic boys avoid developing the broad wedge-shape adult male body. By not growing wide, both hope to avoid growing up. Left untreated, anorexia nervosa can end in death by starvation. A second form of eating disorder is bulimia.

Unlike people with anorexia, individuals with bulimia don’t refuse to eat. In fact, they may often binge (consume enormous amounts of food in one sitting: a whole chicken, several pints of ice cream, a whole loaf of bread). But bulimic people don’t want to keep the food they eat in their bodies.

They may use laxatives to increase defecation, but the more common method they use for getting rid of food is regurgitation. Bulimic people may simply retire to the bathroom after eating and stick their fingers into their throats to make themselves throw up. Or they may use emetics (drugs that induce vomiting). Either way, danger looms.

The human body is not designed for repeated stuffing followed by regurgitation. Bingeing may dilate the stomach to the point of rupture; constant vomiting may severely irritate or even tear through the lining of the esophagus (throat).

In addition, the continued use of large quantities of emetics may result in a life-threatening loss of potassium that triggers irregular heartbeat or heart failure, factors that contributed to the 1983 death of singer Karen Carpenter, an anorexic/bulimic who — at one point in her disease — weighed only 80 pounds but still saw herself as overweight.

One symptom of anorexia and/or bulimia is the inability to look in a mirror and see yourself as you really are. Even at their most skeletal, people with these eating disorders perceive themselves as grossly fat.

As you can see, eating disorders are life-threatening conditions. But they can be treated. If you (or someone you know) experience any of the signs and symptoms just described, the safest course is to seek immediate medical advice and treatment.

For more info about eating conditions, contact the National Eating Disorders Association, 603 Stewart St., Suite 803, Seattle, WA 98101; phone 800-931-2237; e-mail info@NationalEatingDisorders.org; Web site www.nationaleatingdisorders.org.

How Much Nutrition Do I Need?

A healthful diet provides sufficient amounts of all the nutrients that your body needs. The question is, how much is enough? Today, three sets of recommendations provide the answers, and each comes with its own virtues and deficiencies.

The first, and most familiar, is the RDA (short for Recommended Dietary Allowance). The second, originally known as the Estimated Safe and Adequate Daily Dietary Intakes (ESADDIs), now shortened to Adequate Intake or simply AI, describes recommended amounts of nutrients for which no RDAs exist.

The third is the DRI (Dietary Reference Intake), an umbrella term that includes RDAs plus several innovative categories of nutrient recommendations. Confused? Not to worry.

RDAs: Guidelines for Good Nutrition

The Recommended Dietary Allowances (RDAs) were created in 1941 by the Food and Nutrition Board, a subsidiary of the National Research Council, which is part of the National Academy of Sciences in Washington, D.C. RDAs originally were designed to make planning several days’ meals in advance easy for you.

The D in RDA stands for dietary, not daily, because the RDAs are an average. You may get more of a nutrient one day and less the next, but the idea is to hit an average over several days. For example, the current RDA for vitamin C is 75 mg for a woman and 90 mg for a man (age 18 and older).

One 8-ounce glass of fresh orange juice has 120 mg vitamin C, so a woman can have an 8-ounce glass of orange juice on Monday and Tuesday, skip Wednesday, and still meet the RDA for the three days. A man may have to toss in something else — maybe a stalk of broccoli — to be able to do the same thing. No big deal.

The amounts recommended by the RDAs provide a margin of safety for healthy people, but they’re not therapeutic. In other words, RDA servings won’t cure a nutrient deficiency, but they can prevent one from occurring.

The essentials

RDAs offer recommendations for protein and 18 essential vitamins and minerals, which include:

• Vitamin A
• Folate
• Vitamin D
• Vitamin B12
• Vitamin E
• Phosphorus
• Vitamin K
• Magnesium
• Vitamin C
• Iron
• Thiamin (vitamin B1)
• Zinc
• Riboflavin (vitamin B2)
• Copper
• Niacin
• Iodine
• Vitamin B6
• Selenium

The newest essential nutrient, choline, won its wings in 2002, but no RDAs have yet been established. Calcium also has an Adequate Intake (AI) rather than an RDA.

Recommendations for carbohydrates, fats, dietary fiber, and alcohol

What nutrients are missing from the RDA list of essentials? Carbohydrates, fiber, fat, and alcohol. The reason is simple: If your diet provides enough protein, vitamins, and minerals, it’s almost certain to provide enough carbohydrates and probably more than enough fat.

Although no specific RDAs exist for carbohydrates and fat, guidelines definitely exist for them and for dietary fiber and alcohol. In 1980, the U.S. Public Health Service and the U.S. Department of Agriculture joined forces to produce the first edition of Dietary Guidelines for Americans.

This report has been modified many times. The latest set of recommendations, issued in the spring of 2005, sets parameters for what you can consider reasonable amounts of calories, carbohydrates, dietary fiber, fats, protein, and alcohol. According to these guidelines, as a general rule, you need to:

• Balance your calorie intake with energy output in the form of regular exercise. Check out Chapter 3 for specifics on how many calories a person of your weight, height, and level of activity (couch potato? marathon runner?) needs to consume each day.

• Eat enough carbohydrates (primarily the complex ones from fruits, vegetables, and whole grains) to account for 45 to 65 percent of your total daily calories. That’s 900 to 1,300 calories on a 2,000-calorie diet.

• Take in an appropriate amount of dietary fiber, currently described as 14 grams dietary fiber for every 1,000 calories.

• Get no more than 20 to 35 percent of your daily calories from dietary fat. Therefore, if your daily diet includes about 2,000 calories, only 400 to 700 calories should come from fat. Less than 10 percent of your daily calories should come from saturated fatty acids, and your daily diet should have less than 300 mg cholesterol.

Eat as little trans fat as possible. The Nutrition Facts label on foods now shows a gram amount for trans fats, but there’s no upper limit because any amount is considered, well, less than okey-dokey.

• If you choose to drink alcoholic beverages, do so in moderation, meaning one drink a day for a woman and two for a man.

Different people, different needs

Because different bodies require different amounts of nutrients, RDAs currently address as many as 22 specific categories of human beings: boys and girls, men and women, from infancy through middle age. The RDAs recently were expanded to include recommendations for groups of people ages 50 to 70 and 70 and older.

Eventually, recommendations will be made for people older than 85. These expanded groupings are a really good idea. In 1990, the U.S. Census counted 31.1 million Americans who are older than 65. By 2050, the U.S. Government expects more than 60 million to be alive and kickin’.

You wouldn’t want these baby boomers to miss their RDAs, now would you? But who you are affects the recommendations. If age is important, so is gender. For example, because women of childbearing age lose iron when they menstruate, their RDA for iron is higher than the RDA for men.

On the other hand, because men who are sexually active lose zinc through their ejaculations, the zinc RDA for men is higher than the zinc RDA for women. Finally, gender affects body composition, which influences RDAs. Consider protein: The RDA for protein is set in terms of grams of protein per kilogram (2.2 pounds) of body weight.

Because the average man weighs more than the average woman, his RDA for protein is higher than hers. The RDA for an adult male, age 19 or older, is 56 grams; for a woman, it’s 46 grams.

AIs: The Nutritional Numbers Formerly Known as ESADDIs

In addition to the RDAs, the Food and Nutrition Board created Estimated Safe and Adequate Daily Dietary Intakes (ESADDI), now renamed Adequate Intake (AI), for eight nutrients considered necessary for good health, even though nobody really knows exactly how much your body needs.

Not to worry: Sooner or later some smart nutrition researcher will come up with a hard number and move the nutrient to the RDA list. Or not. In the meantime, new reports have established AIs for various age groups for the following nutrients:

• Pantothenic acid
• Molybdenum
• Biotin
• Manganese
• Choline
• Fluoride
• Calcium
• Chromium

DRI: A Newer Nutrition Guide

In 1993, the Food and Nutrition Board’s Dietary Reference Intakes committee established several panels of experts to review the RDAs and other recommendations for major nutrients (vitamins, minerals, and other food components) in light of new research and nutrition information.

The first order of business was to establish a new standard for nutrient recommendations called the Dietary Reference Intake (DRI). DRI is an umbrella term that embraces several categories of nutritional measurements for vitamins, minerals, and other nutrients.

It includes the:

• Estimated Average Requirement (EAR): the amount that meets the nutritional needs of half the people in any one group (such as teenage girls or people older than 70). Nutritionists use the EAR to figure out whether an entire population’s normal diet provides adequate amounts of nutrients.

• Recommended Dietary Allowance (RDA): The RDA, now based on information provided by the EAR, is still a daily average for individuals, the amount of any one nutrient known to protect against deficiency.

• Adequate Intake (AI): The AI is a new measurement, providing recommendations for nutrients for which no RDA is set. (Note: AI replaces ESADDI.)

• Tolerable Upper Intake Level (UL): The UL is the highest amount of a nutrient you can consume each day without risking an adverse effect.

The DRI panel’s first report, listing new recommendations for calcium, phosphorus, magnesium, and fluoride, appeared in 1997. Its most notable change was upping the recommended amount of calcium from 800 mg to 1,000 mg for adults ages 31 to 50 as well as post-menopausal women taking estrogen supplements; for post menopausal women not taking estrogen, the recommendation is 1,500 mg.

The second DRI Panel report appeared in 1998. The report included new recommendations for thiamin, riboflavin, niacin, vitamin B6, folate, vitamin B12, pantothenic acid, biotin, and choline.

The most important revision was increasing the folate recommendation to 400 mcg a day based on evidence showing that folate reduces a woman’s risk of giving birth to a baby with spinal cord defects and lowers the risk of heart disease for men and women.

As a result of the 1989 DRI Panel report, the FDA ordered food manufacturers to add folate to flour, rice, and other grain products. (Multivitamin products already contain 400 mcg of folate.)

In May 1999, data released by the Framingham Heart Study, which has followed heart health among residents of a Boston suburb for nearly half a century, showed a dramatic increase in blood levels of folate. Before the fortification of foods, 22 percent of the study participants had folate deficiencies; after the fortification, the number fell to 2 percent.

A DRI report with revised recommendations for vitamin C, vitamin E, the mineral selenium, beta-carotene, and other antioxidant vitamins was published in 2000. In 2001, new DRIs were released for vitamin A, vitamin K, arsenic, boron, chromium, copper, iodine, iron, manganese, molybdenum, nickel, silicon, vanadium, and zinc.

And in 2004, the Institute of Medicine (IOM) released new recommendations for sodium, potassium, chloride, and water, plus a special report on recommendations for two groups of older adults (ages 50 to 70 and 71 and over). Put these findings all together, and they spell out the recommendations you find in this article.

Table below shows RDAs for minerals for healthy adults. Where no RDA is given, an AI is indicated by an asterisk (*) by the column heading. The complete reports on which this table is based are available online. Go to www.iom.edu. Prefer hard copy?

Vitamin RDAs for Healthy Adults

IOM plans to consolidate the reports into one book to be published late in 2006. Hankering for more details? Notice something missing? Right — no recommended allowances for protein, fat, carbohydrates and, of course, water.