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Celiac Sprue

What is celiac sprue?

Celiac sprue is a digestive disease that damages the small intestine and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate a protein called gluten, found in wheat, rye, barley and possibly oats. Gluten is found mainly in foods, but is also found in products we use every day, such as medicines, and vitamins.

When people with celiac sprue eat foods or use products containing gluten, their immune system responds by damaging the small intestine. The tiny, fingerlike protrusions lining the small intestine are damaged or destroyed. Called villi, they normally allow nutrients from food to be absorbed into the bloodstream. Without healthy villi, a person becomes malnourished, regardless of the quantity of food eaten.

Because the body's own immune system causes the damage, celiac sprue is considered an autoimmune disorder. However, it is also classified as a disease of malabsorption because nutrients are not absorbed. Celiac sprue is also known as celiac disease, nontropical sprue, and gluten-sensitive enteropathy.

Celiac sprue is a genetic disease, meaning it runs in families. Sometimes the disease is triggered-or becomes active for the first time-after surgery, pregnancy, childbirth, viral infection, or severe emotional stress.

What are the symptoms of celiac sprue?

Celiac sprue affects people differently. Symptoms may occur in the digestive system, or in other parts of the body. For example, one person might have diarrhea and abdominal pain, while another person may be irritable or depressed. In fact, irritability is one of the most common symptoms in children.

Symptoms of celiac sprue may include one or more of the following:

  • gas
  • recurring abdominal bloating and pain
  • chronic diarrhea
  • pale, foul-smelling, or fatty stool
  • weight loss / weight gain
  • fatigue
  • unexplained anemia (a low count of red blood cells causing fatigue)
  • bone or joint pain
  • osteoporosis, osteopenia
  • behavioral changes
  • tingling numbness in the legs (from nerve damage)
  • muscle cramps
  • seizures
  • missed menstrual periods (often because of excessive weight loss)
  • infertility, recurrent miscarriage
  • delayed growth
  • failure to thrive in infants
  • pale sores inside the mouth, called aphthous ulcers
  • tooth discoloration or loss of enamel
  • the presence of an itchy skin rash called dermatitis herpetiformis

A person with celiac sprue may have no symptoms. People without symptoms are still at risk for the complications of celiac sprue, including malnutrition. The longer a person goes undiagnosed and untreated, the greater the chance of developing malnutrition and other complications. Anemia, delayed growth, and weight loss are signs of malnutrition. (See Complications.)

Why are celiac symptoms so varied?

Researchers are studying the reasons celiac sprue affects people differently. Some people develop symptoms as children, others as adults. Some people with celiac sprue may not have symptoms, while others may not know their symptoms are from celiac sprue.

How is celiac sprue diagnosed?

Recognizing celiac sprue can be difficult because some of its symptoms are similar to those of other diseases. In fact, sometimes celiac sprue is confused with irritable bowel syndrome, iron-deficiency anemia caused by menstrual blood loss, Crohn's disease, diverticulitis, intestinal infections, and chronic fatigue syndrome. As a result, celiac sprue is commonly under diagnosed or misdiagnosed.

Recently, researchers discovered that people with celiac sprue have higher than normal levels of certain autoantibodies in their blood. Antibodies are protective proteins produced by the immune system in response to substances that the body perceives to be threatening. Autoantibodies are proteins that react against the body's own molecules or tissues. To diagnose celiac sprue, physicians will usually test blood to measure levels of

  • Immunoglobulin A (IgA)
  • anti-tissue transglutaminase IgA antibody (tTGA)
  • anti-endomysial IgA antibody (AEA)

Before being tested, one should continue to eat a regular diet that includes foods with gluten, such as breads and pastas. If a person stops eating foods with gluten before being tested, the results may be negative for celiac sprue even if celiac sprue is actually present.

If the tests and symptoms suggest celiac sprue, the doctor will perform a small bowel biopsy. During the biopsy, the doctor removes a tiny piece of tissue from the small intestine to check for damage to the villi. To obtain the tissue sample, the doctor passes a long, thin tube called an endoscope through the mouth and stomach into the small intestine. Using instruments passed through the endoscope, the doctor then takes the tissue sample.

Screening

Screening for celiac sprue involves testing for the presence of antibodies in the blood.  Testing for celiac-related antibodies in children less than 5 years old may not be reliable. However, since celiac sprue is hereditary, family members, particularly first-degree relatives (such as parents, siblings, or children of people who have been diagnosed) may wish to be tested for the disease. About 5 to 15 percent of an affected person's first-degree relatives will also have the disease. About 3 to 8 percent of people with type 1 diabetes will have biopsy-confirmed celiac sprue and 5 to 10 percent of people with Down's syndrome will be diagnosed with celiac sprue.

The Web contains information about celiac disease, some of which is not accurate. The best people for advice about diagnosing and treating celiac disease are one's doctor and dietitian.

What is the treatment?

The only treatment for celiac sprue is to follow a gluten-free diet. When a person is first diagnosed with celiac sprue, the doctor usually will ask the person to work with a dietitian on a gluten-free diet plan. A dietitian is a health care professional who specializes in food and nutrition. Someone with celiac sprue can learn from a dietitian how to read ingredient lists and identify foods that contain gluten in order to make informed decisions at the grocery store and when eating out.

For most people, following this diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Improvements begin within days of starting the diet. The small intestine is usually completely healed in 3 to 6 months in children and younger adults and within 2 years for older adults. Healed means that a person now has villi that can absorb nutrients from food into the bloodstream.

In order to stay well, people with celiac sprue must avoid gluten for the rest of their lives. Eating any gluten, no matter how small an amount, can damage the small intestine. The damage will occur in anyone with the disease, including people without noticeable symptoms. Depending on a person's age at diagnosis, some problems will not improve, such as delayed growth and tooth discoloration.

Some people with celiac sprue show no improvement on the gluten-free diet. The condition is called unresponsive celiac sprue. The most common reason for poor response is that small amounts of gluten are still present in the diet. Advice from a dietitian who is skilled in educating patients about the gluten-free diet is essential to achieve best results.

Rarely, the intestinal injury will continue despite a strictly gluten-free diet. People in this situation have severely damaged intestines that cannot heal. Because their intestines are not absorbing enough nutrients, they may need to directly receive nutrients into their bloodstream through a vein (intravenously). People with this condition may need to be evaluated for complications of the disease. Researchers are now evaluating drug treatments for unresponsive celiac sprue.

The Gluten-Free Diet

A gluten-free diet means not eating foods that contain wheat (including spelt, triticale, and kamut), rye, barley, and possibly oats. The foods and products made from these grains are also not allowed. In other words, a person with celiac sprue should not eat most grain, pasta, cereal, and many processed foods. Despite these restrictions, people with celiac sprue can eat a well balanced diet with a variety of foods, including gluten-free bread and pasta. For example, people with celiac disease can use potato, rice, corn, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour. They can buy gluten-free bread, pasta, and other products from stores that carry organic foods, or order products from special food companies. Gluten-free products are increasingly available from regular stores.

Checking labels for "gluten free" is important since many corn and rice products are produced in factories that also manufacture wheat products. Hidden sources of gluten include additives such as modified food starch, preservatives, and stabilizers. Wheat and wheat products are often used as thickeners, stabilizers, and texture enhancers in foods.

"Plain" meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac sprue can eat as much of these foods as they like. Recommending that people with celiac sprue avoid oats is controversial because some people have been able to eat oats without having symptoms. Scientists are currently studying whether people with celiac sprue can tolerate oats. Until the studies are complete, people with celiac sprue should follow their physician's or dietitian's advice about eating oats. Examples of foods that are safe to eat and those that are not are provided in the table below.

The gluten-free diet is challenging. It requires a completely new approach to eating that affects a person's entire life. Newly diagnosed people and their families may find support groups to be particularly helpful as they learn to adjust to a new way of life. People with celiac sprue have to be extremely careful about what they buy for lunch at school or work, what they purchase at the grocery store, what they eat at restaurants or parties, or what they grab for a snack. Eating out can be a challenge. If a person with celiac sprue is in doubt about a menu item, ask the waiter or chef about ingredients and preparation, or if a gluten-free menu is available.

Gluten is also used in some medications. One should check with the pharmacist to learn whether medications used contain gluten. Since gluten is also sometimes used as an additive in unexpected products, it is important to read all labels. If the ingredients are not listed on the product label, the manufacturer of the product should provide the list upon request. With practice, screening for gluten becomes second nature.

The Gluten-Free Diet: Some Examples

Following are examples of foods that are allowed and those that should be avoided when eating a gluten-free diet. This list is not complete, so people with celiac sprue should discuss gluten-free food choices with a dietitian or physician who specializes in celiac sprue. People with celiac sprue should always read food ingredient lists carefully to make sure that the food does not contain gluten.

 

Food Categories

Foods Recommended

Foods To Omit

Tips

Breads, cereals, rice, and pasta: 6 to 11 servings each day

Serving size = 1 slice bread, 1 cup ready-to-eat cereal, ½ cup cooked cereal, rice, or pasta; ½ bun, bagel, or English muffin

Bread made from corn, rice, soy, arrowroot corn, or potato starch; pea, potato, or whole-bean flour; or tapioca, sago, rice bran, cornmeal, buckwheat, millet, flax, teff, sorghum, amaranth, quinoa

Hot cereals made from soy, hominy, hominy grits, brown rice, white rice, buckwheat groats, millet, cornmeal, quinoa flakes

Puffed corn, rice, or millet, other rice and corn made with allowed ingredients

Rice, rice noodles, pastas made from allowed ingredients

Some rice crackers and cakes, popped corn cakes made from allowed ingredients

Breads or baked products containing wheat, rye, triticale, barley, oats, wheat germ, bran; graham, gluten, or durum flour; wheat starch, oat bran, bulgur, farina, wheat-based semolina, spelt, kamut

Cereals made from wheat, rye, triticale, barley, and oats; or made with malt extract, malt flavorings

Pastas made from ingredients above

Most crackers

Use corn, rice, soy, arrowroot, tapioca, and potato flours or a mixture of them instead of wheat flours in recipes.

Experiment with gluten-free products. Look for gluten-free products at the supermarket, health food store, or directly from the manufacturer.

Food Categories

Foods Recommended

Foods To Omit

Tips

Vegetables: 3 to 5 servings each day (includes starchy vegetables)

Serving size = 1 cup raw leafy, ½ cup cooked or chopped, ¾ cup juice

All plain, fresh, frozen, or canned vegetables made with allowed ingredients

Any creamed or breaded vegetables (unless allowed ingredients are used); and canned baked beans

Some french fries

Buy plain, frozen, or canned vegetables seasoned with herbs, spices, or sauces made with allowed ingredients.

Food Categories

Foods Recommended

Foods To Omit

Tips

Fruits: 2 to 4 servings each day

Serving size = 1 medium size, ½ cup canned, ¾ cup juice, ¼ cup dried

All fruits and fruit juices

Some commercial fruit pie fillings, dried fruit

 

Food Categories

Foods Recommended

Foods To Omit

Tips

Milk, yogurt, and cheese: 2 to 3 servings each day

Serving size = 1 cup milk or yogurt, 1 ½ oz natural cheese, 2 oz processed cheese

All milk and milk products except those made with gluten additives

Aged cheese

Malted milk

Some milk drinks, flavored or frozen yogurt

Contact the food manufacturer for product information if the ingredients are not listed on the label.

Food Categories

Foods Recommended

Foods To Omit

Tips

Meats, poultry, fish, dry beans and peas, eggs, and nuts:
2 to 3 servings or total of 6 oz daily

Serving size = 2 to 3 oz cooked; count 1 egg, ½ cup cooked beans, 2 Tbsp peanut butter, or ¼ cup nuts as 1 oz of meat

All meat, poultry, fish, shellfish, eggs

Dry peas and beans, nuts, peanut butter, soybeans

Cold cuts, frankfurters, sausage without fillers

Any prepared with wheat, rye, oats, barley, gluten stabilizers, fillers including some frankfurters, cold cuts, sandwich spreads, sausages, canned meats

Self-basting turkey

Some egg substitutes

When dining out, select meat, poultry, or fish made without breading, gravies, or sauces.

Food Categories

Foods Recommended

Foods To Omit

Tips

Fats, snacks, sweets, condiments, and beverages

 

Butter, margarine, salad dressings, sauces, soups, desserts made with allowed ingredients

Sugar, honey, jelly, jam, hard candy, plain chocolate, coconut, molasses, marshmallows, meringues

Pure instant or ground coffee, tea, carbonated drinks, wine (made in United States), rum, alcohol distilled from cereals such as gin, vodka, whiskey

Most seasonings and flavorings

Commercial salad dressings, prepared soups, condiments, sauces, seasonings prepared with ingredients listed above

Hot cocoa mixes, nondairy cream substitutes, flavored instant coffee, herbal tea

Beer, ale, malted beverages

Licorice

Store all gluten-free products in your refrigerator or freezer because they do not contain preservatives.

Avoid sauces, gravies, canned fish, products with hydrolyzed vegetable protein or hydrolyzed plant protein (HVP/HPP) made from wheat protein, and anything with questionable ingredients.

2001, the American Dietetic Association. "Patient Education Materials: Supplement to the Manual of Clinical Dietetics." 3rd ed. Used with permission.

What are the complications of celiac sprue?

Damage to the small intestine and the resulting nutrient absorption problems put a person with celiac sprue at risk for malnutrition and anemia as well as several diseases and health problems.

  • Lymphoma and adenocarcinoma are cancers that can develop in the intestine.
  • Osteoporosis is a condition in which the bones become weak, brittle, and prone to breaking. Poor calcium absorption contributes to osteoporosis.
  • Miscarriage and congenital malformation of the baby, such as neural tube defects, are risks for pregnant women with untreated celiac disease because of nutrient absorption problems.
  • Short stature refers to being significantly under-the-average height. Short stature results when childhood celiac disease prevents nutrient absorption during the years when nutrition is critical to a child's normal growth and development. Children who are diagnosed and treated before their growth stops may have a catch-up period.

How common is celiac sprue?

Data on the prevalence of celiac sprue is spotty. In Italy, about 1 in 250 people and in Ireland about 1 in 300 people have celiac sprue. Recent studies have shown that it may be more common in Africa, South America, and Asia than previously believed.

Until recently, celiac sprue was thought to be uncommon in the United States. However, studies have shown that celiac sprue is very common. Recent findings estimate about 2 million people in the United States have celiac sprue, or about 1 in 133 people. Among people who have a first-degree relative diagnosed with celiac sprue, as many as 1 in 22 people may have the disease.

Celiac sprue could be under diagnosed in the United States for a number of reasons including:

  • Celiac symptoms can be attributed to other problems.
  • Many doctors are not knowledgeable about the disease.
  • Only a small number of U.S. laboratories are experienced and skilled in testing for celiac sprue.

More research is needed to learn the true prevalence of celiac sprue among Americans.

Points to Remember

  • People with celiac sprue cannot tolerate gluten, a protein in wheat, rye, barley, and possibly oats.
  • Celiac sprue damages the small intestine and interferes with nutrient absorption.
  • Without treatment, people with celiac sprue can develop complications like cancer, osteoporosis, anemia, and seizures.
  • A person with celiac sprue may or may not have symptoms.
  • Diagnosis involves blood tests and a biopsy of the small intestine.
  • Since celiac sprue is hereditary, family members of a person with celiac sprue may wish to be tested.
  • Celiac sprue is treated by eliminating all gluten from the diet. The gluten-free diet is a lifetime requirement.
  • A dietitian can teach a person with celiac sprue food selection, label reading, and other strategies to help manage the disease.

Diseases Linked to Celiac Sprue

People with celiac sprue may have other autoimmune diseases. The connection between celiac sprue and these diseases may be genetic. These diseases include:

  • thyroid disease
  • systemic lupus erythematosus
  • type 1 diabetes
  • liver disease
  • collagen vascular disease
  • rheumatoid arthritis
  • Sjögren's syndrome

Dermatitis Herpetiformis

Dermatitis herpetiformis (DH) is a severe itchy, blistering manifestation of celiac sprue. The rash usually occurs on the elbows, knees, and buttocks. Not all people with celiac sprue develop dermatitis herpetiformis. Unlike other forms of celiac sprue, the range of intestinal abnormalities in DH is highly variable, from minimal to severe. Only about 20 percent of people with DH have intestinal symptoms of celiac sprue.

To diagnose DH, the doctor will test the person's blood for autoantibodies related to celiac sprue and will biopsy the person's skin. If the antibody tests are positive and the skin biopsy has the typical findings of DH, patients do not need to have an intestinal biopsy. Both the skin disease and the intestinal disease respond to gluten-free diet and recur if gluten is added back into diet. In addition, the rash symptoms can be controlled with medications such as dapsone (4',4'diamino-diphenylsuphone). However, dapsone does not treat the intestinal condition and people with DH should also maintain a gluten-free diet.

For More Information

American Dietetic Association
120 South Riverside Plaza, Suite 2000
Chicago, IL 60606–6995
Phone: 1–800–366–1655 or 1–800–877–1600
Email: hotline@eatright.org
Internet: www.eatright.org

Celiac Disease Foundation
13251 Ventura Boulevard, #1
Studio City, CA 91604
Phone: 818–990–2354
Fax: 818–990–2379
Email: cdf@celiac.org
Internet: www.celiac.org

Celiac Sprue Association/USA Inc.
P.O. Box 31700
Omaha, NE 68131–0700
Phone: 1–877–272–4272 or 402–558–0600
Fax: 402–558–1347
Email: celiacs@csaceliacs.org
Internet: www.csaceliacs.org

Gluten Intolerance Group of North America
15110 10th Avenue, SW., Suite A
Seattle, WA 98166
Phone: 206–246–6652
Fax: 206–246–6531
Email: info@gluten.net
Internet: www.gluten.net

Gluten-Free Living (a bimonthly newsletter)
P.O. Box 105
Hastings-on-Hudson, NY 10706
Phone: 914–969–2018
Email: gfliving@aol.com

National Foundation for Celiac Awareness
124 South Maple Street
Ambler, PA 19002
Phone: 215–325–1306
Email: info@celiacawareness.org
Internet: www.celiacawareness.org

North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN)
P.O. Box 6
Flourtown, PA 19031
Phone: 215–233–0808
Email: naspghan@naspghan.org
Internet: www.naspghan.org www.cdhnf.org


Reprinted and edited from the National Digestive Diseases Information Clearinghouse. The U.S. Government does not endorse or favor any specific commercial product or company. Trade, proprietary, or company names appearing in this document are used only because they are considered necessary in the context of the information provided. If a product is not mentioned, the omission does not mean or imply that the product is unsatisfactory.

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