Celiac Disease
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What is celiac disease?
Celiac disease 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, and barley. Gluten is found mainly in foods but may also
be found in products we use every day, such as stamp and envelope
adhesive, medicines, and vitamins.
The small intestine is shaded
above.
When people with celiac disease 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.
Villi on the lining of the
small intestine help absorb nutrients.
Because the body’s own immune system causes the damage, celiac
disease is considered an autoimmune disorder. However, it is also
classified as a disease of malabsorption because nutrients are not
absorbed. Celiac disease is also known as celiac sprue, nontropical
sprue, and gluten-sensitive enteropathy.
Celiac disease 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.
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What are the symptoms of celiac disease?
Celiac disease 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 disease may include one or more of the following:
- gas
- recurring abdominal bloating and pain
- chronic diarrhea
- constipation
- 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
- itchy skin rash called dermatitis herpetiformis
A person with celiac disease may have no symptoms. People without
symptoms are still at risk for the complications of celiac disease,
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: The body is just not getting enough nutrients.
Malnutrition is a serious problem for children because they need
adequate nutrition to develop properly. (See Complications.)
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Why are celiac disease symptoms so varied?
Researchers are studying the reasons celiac disease affects people
differently. Some people develop symptoms as children, others as adults.
Some people with celiac disease may not have symptoms, while others may
not know their symptoms are from celiac disease. The undamaged part of
their small intestine may not be able to absorb enough nutrients to
prevent symptoms.
The length of time a person is breastfed, the age a person started
eating gluten-containing foods, and the amount of gluten-containing
foods one eats are three factors thought to play a role in when and how
celiac appears. Some studies have shown, for example, that the longer a
person was breastfed, the later the symptoms of celiac disease appear
and the more uncommon the symptoms.
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How is celiac disease diagnosed?
Recognizing celiac disease can be difficult because some of its
symptoms are similar to those of other diseases. In fact, sometimes
celiac disease 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 disease is commonly underdiagnosed or
misdiagnosed.
Recently, researchers discovered that people with celiac disease 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 disease, physicians will
usually test blood to measure levels of
- Immunoglobulin A (IgA)
- anti-tissue transglutaminase (tTGA)
- IgA anti-endomysium antibodies (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 disease even if celiac disease is actually present.
If the tests and symptoms suggest celiac disease, 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 eases 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 sample.
Screening
Screening for celiac disease involves testing for the presence of
antibodies in the blood in people without symptoms. Americans are not
routinely screened for celiac disease. Testing for celiac-related
antibodies in children less than 5 years old may not be reliable.
However, since celiac disease is hereditary, family members,
particularly first-degree relatives—meaning 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
disease, and 5 to 10 percent of people with Down syndrome will be
diagnosed with celiac disease.
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What is the treatment?
The only treatment for celiac disease is to follow a gluten-free
diet. When a person is first diagnosed with celiac disease, 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 disease 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 a person now has villi
that can absorb nutrients from food into the bloodstream.
In order to stay well, people with celiac disease 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 disease show no improvement on the
gluten-free diet. This condition is called unresponsive celiac disease.
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
the 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 receive nutrients directly into their
bloodstream through a vein, or intravenously. People with this condition
may need to be evaluated for complications of the disease. Researchers
are now evaluating drug treatments for unresponsive celiac disease.
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.
 The Gluten-free Diet
A gluten-free diet means not eating foods that contain wheat
(including spelt, triticale, and kamut), rye, and barley. The foods and
products made from these grains are also not allowed. In other words, a
person with celiac disease should not eat most grain, pasta, cereal, and
many processed foods. Despite these restrictions, people with celiac
disease 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, 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 disease can eat as much of these foods as
they like. Recommending that people with celiac disease avoid oats is
controversial because some people have been able to eat oats without
having symptoms. Scientists are currently studying whether people with
celiac disease can tolerate oats. Until the studies are complete, people
with celiac disease 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 disease 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 disease 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
In 2006, the American Dietetic Association updated its
recommendations for a gluten-free diet. The following chart is based on
the 2006 recommendations. This list is not
complete, so people with celiac disease should discuss gluten-free food
choices with a dietitian or physician who specializes in celiac disease.
People with celiac disease should always read food ingredient lists
carefully to make sure that the food does not contain gluten.
Allowed Foods
|
Amaranth
Arrowroot
Buckwheat
Cassava
Corn
Flax
Indian rice grass |
Job’s tears
Legumes
Millet
Nuts
Potatoes
Quinoa
Rice |
Sago
Seeds
Soy
Sorghum
Tapioca
Wild Rice
Yucca |
Foods To Avoid
|
Wheat
- Including einkorn, emmer, spelt, kalmut
- Wheat starch, wheat bran, wheat germ, cracked wheat,
hydrolyzed wheat protein
|
Barley
Rye
Triticale (a cross between wheat and rye) |
Other Wheat Products
|
Bromated flour
Durum flour
Enriched flour
Farina |
Graham 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
Chips/potato chips
Candy
Cold cuts, hot dogs, salami, sausage
Communion wafer |
French fries
Gravy
Imitation fish
Matzo
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 manufacturer. |
Adapted from the following resource: Thompson T. Celiac
Disease Nutrition Guide, 2nd ed. Chicago: American Dietetic
Association; 2006. Used with permission. For a complete copy of the Celiac
Disease Nutrition Guide, please visit www.eatright.org.
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What are the complications of celiac disease?
Damage to the small intestine and the resulting nutrient absorption
problems put a person with celiac disease at risk for malnutrition,
anemia, and several other 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.
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How common is celiac disease?
Data on the prevalence of celiac disease is spotty. In Italy about 1
in 250 people, and in Ireland about 1 in 300 people, have celiac
disease. Recent studies have shown that it may be more common in Africa,
South America, and Asia than previously believed.
Until recently, celiac disease was thought to be uncommon in the
United States. However, studies have shown that celiac disease is very
common. Recent findings estimate about 2 million people in the United
States have celiac disease, or about 1 in 133 people. Among people who
have a first-degree relative diagnosed with celiac disease, as many as 1
in 22 people may have the disease.
Celiac disease could be underdiagnosed in the United States for a
number of reasons including:
- Celiac symptoms can be attributed to other problems.
- Many doctors and health care providers are not knowledgeable about
the disease.
- Only a small number of U.S. laboratories are experienced and
skilled in testing for celiac disease.
More research is needed to learn the true prevalence of celiac
disease among Americans.
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Diseases Linked to Celiac Disease
People with celiac disease tend to have other autoimmune diseases.
The connection between celiac disease 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
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Dermatitis Herpetiformis
Dermatitis herpetiformis (DH) is a severe, itchy, blistering skin
manifestation of celiac disease. Not all people with celiac disease
develop dermatitis herpetiformis. The rash usually occurs on the elbows,
knees, and buttocks. Unlike other forms of celiac disease, 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 disease.
To diagnose DH, the doctor will test the person’s blood for
autoantibodies related to celiac disease 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 a
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.
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Hope Through Research
The National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK) conducts and supports research on celiac disease. NIDDK-supported
researchers are studying the genetic and environmental causes of celiac
disease. In addition, researchers are studying the substances found in
gluten that are believed to be responsible for the destruction of the
immune system function, as happens in celiac disease. They are
engineering enzymes designed to destroy these immunotoxic peptides.
Researchers are also developing educational materials for standardized
medical training to raise awareness among healthcare providers. The hope
is that increased understanding and awareness will lead to earlier
diagnosis and treatment of celiac disease.
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Points to Remember
- People with celiac disease cannot tolerate gluten, a protein in
wheat, rye, barley, and possibly oats.
- Untreated celiac disease damages the small intestine and
interferes with nutrient absorption.
- Without treatment, people with celiac disease can develop
complications like cancer, osteoporosis, anemia, and seizures.
- A person with celiac disease may or may not have symptoms.
- Diagnosis involves blood tests and a biopsy of the small
intestine.
- Since celiac disease is hereditary, family members of a person
with celiac disease may wish to be tested.
- Celiac disease 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 disease food selection,
label reading, and other strategies to help manage the disease.
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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For More Information
American Dietetic Association
120 South Riverside Plaza, Suite 2000
Chicago, IL 60606–6995
Phone: 1–800–877–1600
Email: knowledge@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
31214 124th Avenue SE
Auburn, WA 98092
Phone: 253–833–6655
Fax: 253–833–6675
Email: info@gluten.net
Internet: www.gluten.net
National Foundation for Celiac Awareness
124 South Maple Street
Ambler, PA 19002
Phone: 215–325–1306
Email: info@celiaccentral.org
Internet: www.celiaccentral.org
North American Society for Pediatric Gastroenterology,
Hepatology and Nutrition (NASPGHAN)
P.O. Box 6
Flourtown, PA 19031
Phone: 215–233–0808
Fax: 215–233–3918
Email: naspghan@naspghan.org
Internet: www.naspghan.org
www.cdhnf.org
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Acknowledgments
This fact sheet was reviewed by Ciaran Kelly, M.D., Beth Israel
Deaconess Medical Center; Mitchell Cohen, M.D., Cincinnati, Children’s
Hospital Medical Center; Walter Reed Army Medical Center; National
Foundation for Celiac Awareness; Celiac Disease Foundation; Celiac Sprue
Association/USA Inc.; and Centers for Disease Control and Prevention
staff. The gluten-free diet chart was reviewed by Alice Bast and Nancy
Dickens, National Foundation for Celiac Awareness; Cynthia Kupper, R.D.,
C.D., Gluten Intolerance Group; and Elaine Monarch, Celiac Disease
Foundation.
The Celiac Disease Awareness Campaign
To meet the need for comprehensive and current information about
celiac disease, the National Digestive Diseases Information
Clearinghouse (NDDIC), a service of the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK), launched the Celiac Disease
Awareness Campaign. The Awareness Campaign is the result of the combined
ideas and efforts of the professional and voluntary organizations that
focus on celiac disease, along with the NIDDK, the National Institutes
of Health, and the Centers for Disease Control and Prevention.
Visit www.celiac.nih.gov to
learn more about the Awareness Campaign.
The National Digestive Diseases Information Clearinghouse collects
resource information about digestive diseases for the National Institute
of Diabetes and Digestive and Kidney Diseases (NIDDK) Reference
Collection. This database provides titles, abstracts, and availability
information for health information and health education resources. The
NIDDK Reference Collection is a service of the National Institutes of
Health.
You may view the results of the automatic search on celiac
disease.
If you wish to perform your own search of the database, you may
access and search the NIDDK
Reference Collection database online.
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