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Summary Article: Celiac Disease
from Health Reference Series: Gastrointestinal Diseases and Disorders Sourcebook
What is celiac disease?

1Celiac disease is an immune disorder in which people cannot tolerate gluten because it damages the inner lining of their small intestine and prevents it from absorbing nutrients. The small intestine is the tubeshaped organ between the stomach and large intestine. Gluten is a protein found in wheat, rye, and barley and occasionally in some products such as vitamin and nutrient supplements, lip balms, and certain medications.

The immune system is the body's natural defense system and normally protects the body from infection. However, when a person has celiac disease, gluten causes the immune system to react in a way that can cause intestinal inflammation—irritation or swelling—and long-lasting damage.

When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike projections on the inner lining of the small intestine. Villi normally absorb nutrients from food and pass the nutrients through the walls of the small intestine and into the bloodstream. Without healthy villi, people can become malnourished, no matter how much food they eat.

What causes celiac disease?

Researchers do not know the exact cause of celiac disease. Celiac disease sometimes runs in families. In 50 percent of people who have celiac disease, a family member, when screened, also has the disease.

A person's chances of developing celiac disease increase when his or her genes—traits passed from parent to child—have variants, or changes. In celiac disease, certain gene variants and other factors, such as a person's exposure to things in his or her environment, can lead to celiac disease.

For most people, eating something with gluten is harmless. For others, an exposure to gluten can cause, or trigger, celiac disease to become active. Sometimes surgery, pregnancy, childbirth, a viral infection, or severe emotional stress can also trigger celiac disease symptoms.

How common is celiac disease and who is affected?

As many as one in 141 Americans has celiac disease, although most remain undiagnosed. Celiac disease affects children and adults in all parts of the world and is more common in Caucasians and females.

Celiac disease is also more common among people with certain genetic diseases, including Down syndrome and Turner syndrome—a condition that affects girls’ development.

What are the signs and symptoms of celiac disease?

A person may experience digestive signs and symptoms, or symptoms in other parts of the body. Digestive signs and symptoms are more common in children and can include

  • abdominal bloating

  • chronic diarrhea

  • constipation

  • gas

  • pale, foul-smelling, or fatty stool

  • stomach pain

  • nausea

  • vomiting

Being unable to absorb nutrients during the years when nutrition is critical to a child's normal growth and development can lead to other health problems, such as

  • failure to thrive in infants

  • slowed growth and short stature

  • weight loss

  • irritability or change in mood

  • delayed puberty

  • dental enamel defects of permanent teeth

Adults are less likely to have digestive signs and symptoms and may instead have one or more of the following:

  • anemia

  • bone or joint pain

  • canker sores inside the mouth

  • depression or anxiety

  • dermatitis herpetiformis, an itchy, blistering skin rash

  • fatigue, or feeling tired

  • infertility or recurrent miscarriage

  • missed menstrual periods

  • seizures

  • tingling numbness in the hands and feet

  • weak and brittle bones, or osteoporosis

  • headaches

Intestinal inflammation can cause other symptoms, such as

  • feeling tired for long periods of time

  • abdominal pain and bloating

  • ulcers

  • blockages in the intestine

Celiac disease can produce an autoimmune reaction, or a self-directed immune reaction, in which a person's immune system attacks healthy cells in the body. This reaction can spread outside of the gastrointestinal tract to affect other areas of the body, including the

  • spleen

  • skin

  • nervous system

  • bones

  • joints

Recognizing celiac disease can be difficult because some of its symptoms are similar to those of other diseases and conditions. Celiac disease can be confused with

  • irritable bowel syndrome (IBS)

  • iron-deficiency anemia caused by menstrual blood loss

  • lactose intolerance

  • inflammatory bowel disease

  • diverticulitis

  • intestinal infections

  • chronic fatigue syndrome

As a result, celiac disease has long been underdiagnosed or mis-diagnosed. As health care providers become more aware of the many varied symptoms of the disease and reliable blood tests become more available, diagnosis rates are increasing, particularly for adults.

Why are celiac disease signs and symptoms so varied?

Signs and symptoms of celiac disease vary from person to person because of numerous factors, including

  • the length of time a person was breastfed as an infant; some studies have shown that the longer an infant was breastfed, the later the symptoms of celiac disease appear

  • the age a person started eating gluten

  • the amount of gluten a person eats

  • age—symptoms can vary between young children and adults

  • the degree of damage to the small intestine

Some people with celiac disease have no signs or symptoms; however, they can still develop complications of the disease over time. Long-term complications include

  • malnutrition

  • liver diseases

  • intestinal cancer

  • lymphoma

What other diseases can people with celiac disease have?

People with celiac disease may also have autoimmune diseases, including

  • type 1 diabetes

  • autoimmune thyroid disease

  • autoimmune liver disease

  • rheumatoid arthritis

  • Addison's disease, a condition in which the immune system damages the glands that produce critical hormones

  • Sjögren's syndrome, a condition in which the immune system destroys the glands that produce tears and saliva

How is celiac disease diagnosed?

A health care provider diagnoses celiac disease with

  • a medical and family history

  • a physical exam

  • blood tests

  • an intestinal biopsy

  • a skin biopsy

Medical and Family History

Taking a medical and family history may help a health care provider diagnose celiac disease. He or she will ask the patient or caregiver to provide a medical and family history, specifically if anyone in the patient's family has a history of celiac disease.

Physical Exam

A physical exam may help diagnose celiac disease. During a physical exam, a health care provider usually

  • examines the patient's body for malnutrition or a rash

  • uses a stethoscope to listen to sounds within the abdomen

  • taps on the patient's abdomen checking for bloating and pain

Blood Tests

A blood test involves drawing blood at a health care provider's office or a commercial facility and sending the sample to a lab for analysis. A blood test can show the presence of antibodies that are common in celiac disease.

If blood test results are negative and a health care provider still suspects celiac disease, he or she may order additional blood tests, which can affect test results.

Before the blood tests, patients should continue to eat a diet that includes foods with gluten, such as breads and pastas. If a patient stops eating foods with gluten before being tested, the results may be negative for celiac disease even if the disease is present.

Intestinal Biopsy

If blood tests suggest that a patient has celiac disease, a health care provider will perform a biopsy of the patient's small intestine to confirm the diagnosis. A biopsy is a procedure that involves taking a piece of tissue for examination with a microscope. A health care provider performs the biopsy in an outpatient center or a hospital. He or she will give the patient light sedation and a local anesthetic. Some patients may receive general anesthesia.

During the biopsy, a health care provider removes tiny pieces of tissue from the patient's small intestine using an endoscope—a small, flexible camera with a light. The health care provider carefully feeds the endo-scope down the patient's esophagus and into the stomach and small intestine. A small camera mounted on the endoscope transmits a video image to a monitor, allowing close examination of the intestinal lining. The health care provider then takes the samples using tiny tools that he or she passes through the endoscope. A pathologist—a doctor who specializes in examining tissues to diagnose diseases—examines the tissue in a lab. The test can show damage to the villi in the small intestine.

Skin Biopsy

When a health care provider suspects that a patient has dermatitis herpetiformis, he or she will perform a skin biopsy. A skin biopsy is a procedure that involves removing tiny pieces of skin tissue for examination with a microscope. A health care provider performs the biopsy in an outpatient center or a hospital. The patient receives a local anesthetic; however, in some cases, the patient will require general anesthesia.

A pathologist examines the skin tissue in a lab and checks the tissue for antibodies that are common in celiac disease. If the skin tissue tests positive for the antibodies, a health care provider will perform blood tests to confirm celiac disease. If the skin biopsy and blood tests both suggest celiac disease, the patient may not need an intestinal biopsy for diagnosis.

Do health care providers screen for celiac disease?

Health care providers in the United States do not routinely screen patients for celiac disease. However, since celiac disease sometimes runs in families, blood relatives of people with celiac disease should talk with their health care provider about their chances of getting the disease. Some researchers recommend the routine testing of all family members, such as parents and siblings, for celiac disease. However, routine genetic testing for celiac disease is not usually helpful when diagnosing the disease.

How is celiac disease treated?

Most people with celiac disease have a significant improvement in symptoms when they follow a gluten-free diet. Health care providers typically refer people to a dietitian who specializes in treating people with the disease. The dietitian will teach the person to avoid gluten while following a healthy and nutritious diet. The dietitian will give the person instructions for how to

  • read food and product labels and identify ingredients that contain gluten

  • make healthy choices about the types of foods to eat

  • design everyday meal plans

For most people, following a gluten-free diet will stop symptoms, heal existing intestinal damage, and prevent further damage. Symptoms may improve within days to weeks of starting the diet. The small intestine usually heals in 3 to 6 months in children. Complete healing can take several years in adults. Once the intestine heals, the villi will absorb nutrients from food into the bloodstream normally.

Some people with celiac disease show no improvement after starting a gluten-free diet. The most common reason for poor response to dietary changes is that people are still consuming small amounts of gluten, which can damage the small intestine—even in people without symptoms. Most people start responding to the gluten-free diet once they find and eliminate hidden sources of gluten from their diet. Hidden sources of gluten include additives made with wheat, such as

  • modified food starch

  • preservatives

  • stabilizers

Some people who continue to have symptoms even after changing their diet may have other conditions or disorders that are more common in people with celiac disease. These conditions may include

  • small intestinal bacterial overgrowth, which happens when too many bacteria grow in the small intestine

  • pancreatic exocrine insufficiency, in which the pancreas does not produce enough digestive juice

  • microscopic colitis, an inflammation of the colon that a health care provider can see only with a microscope

  • IBS

  • lactose intolerance, a condition in which people have symptoms after consuming milk or milk products

  • other food intolerances, which may occur because of continued damage to the intestine

In some cases, people continue to have difficulty absorbing nutrients despite following a strict gluten-free diet. People with this condition, known as refractory celiac disease, have severely damaged intestines that cannot heal. Their intestines are not absorbing enough nutrients, so they may need to receive nutrients intravenously. Researchers continue to evaluate medications to treat refractory celiac disease.

Depending on a person's age at diagnosis, some complications of celiac disease will not improve, such as short stature and dental enamel defects.

For people with dermatitis herpetiformis, skin symptoms generally respond to a gluten-free diet and may recur if a person adds gluten back into his or her diet. Medications such as dapsone can control the rash's symptoms. Dapsone does not treat intestinal symptoms or damage, so people with dermatitis herpetiformis should maintain a gluten-free diet, even if they don't have digestive symptoms. Even when a person follows a gluten-free diet, the skin lesions from dermatitis herpetiformis may take months or even years to fully heal and often recur over the years.

Eating, Diet, and Nutrition

Eating, diet, and nutrition play a significant role in treating celiac disease. People with the disease should maintain a gluten-free diet by avoiding products that contain gluten. In other words, a person with celiac disease should not eat most grains, pasta, and cereal, and many processed foods.

People with celiac disease can eat a wellbalanced diet with a variety of foods. They can use potato, rice, soy, amaranth, quinoa, buckwheat, or bean flour instead of wheat flour. They can buy gluten-free bread, pasta, and other products from stores, or order products from special food companies. Meanwhile, ‘plain’—meaning no additives or seasonings—meat, fish, rice, fruits, and vegetables do not contain gluten, so people with celiac disease can eat these foods.

In the past, health care providers and dietitians advised people with celiac disease to avoid eating oats. Evidence suggests that most people with the disease can safely eat small amounts of oats, as long as the oats are not contaminated with wheat gluten during processing. People with celiac disease should talk with their health care team when deciding whether to include oats in their diet.

Eating out and shopping can be a challenge. Newly diagnosed people and their families may find support groups helpful as they adjust to a new approach to eating. People with celiac disease should

  • read food labels—especially canned, frozen, and processed foods—for ingredients that contain gluten

  • avoid ingredients such as hydrolyzed vegetable protein, also called lecithin or soy lecithin

  • ask restaurant servers and chefs about ingredients and food preparation inquire whether a gluten-free menu is available

  • ask a dinner or party host about glutenfree options before attending a social gathering

Foods that are packaged as gluten-free tend to cost more than the same foods containing gluten. People following a gluten-free diet may find that naturally gluten-free foods are less expensive. With practice, looking for gluten can become second nature.

The Gluten-free Diet: Some Examples

The Academy of Nutrition and Dietetics has published recommendations for a glutenfree diet. The following chart illustrates these recommendations. This list is not complete, so people with celiac disease should discuss gluten-free food choices with a dietitian or health care professional who specializes in celiac disease. People with celiac disease should always read food ingredient lists carefully to make sure the food does not contain gluten.

Table 47.1. Gluten-free foods and foods that contain gluten

Adapted from: Thompson T. Celiac Disease Nutrition Guide. 3rd ed. Chicago: Academy of Nutrition and Dietetics; 2014.

Foods and Ingredients That Contain Gluten

barley rye triticale (a cross between wheat and rye) wheat, including

  • including einkorn, emmer, spelt, kamut

  • wheat starch, wheat bran, wheat germ, cracked wheat, hydrolyzed wheat protein

brewer's yeast dextrin malt (unless a gluten-free source is named, such as corn malt) modified food starch oats (not labeled gluten-free) starch

Other Wheat Products That Contain Gluten

bromated flour durum flour enriched flour farina

graham flourgraham flour phosphated flour plain flour

self-rising flour semolina white flour

Processed Foods That May Contain Wheat, Barley, or Rye*

bouillon cubes brown rice syrup candy chewing gum chips/potato chips cold cuts, hot dogs, salami, sausage

communion wafers french fries gravies imitation fish matzo and matzo meal rice mixes

sauces seasoned tortilla chips self-basting turkey soups soy sauce vegetables in sauce

*Most of these foods can be found gluten-free. When in doubt, check with the food

Food Products and Ingredients Made from Barley*

ale

beer

malt

malt beverages

malted milk

malt extract

malt syrup

malt vinegar

other fermented beverages

porter

stout

*People should only consume these foods if they are labeled gluten-free—such

as sorghum-based beer—or they list a grain source other than barley, wheat, or

rye—such as corn malt.

Foods That Do Not Contain Gluten

amaranth

arrowroot

buckwheat

cassava

corn

flax

legumes

lentils

millet

nuts

oats (labeled gluten-free)

potatoes

quinoa

rice

sago

seeds

sorghum

soy

tapioca

tef (or teff)

wild rice

yucca

1

Text in this chapter is excerpted from “Celiac Disease” National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), September 2014.

© 2016 Omnigraphics, Inc.

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