Celiac Disease
 

National Digestive Diseases Information Clearinghouse 

U.S. Department 

of Health and 

Human Services 

NATIONAL 

INSTITUTES 

OF HEALTH 

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 

gluten, a protein in wheat, rye, and barley. 

Gluten is found mainly in foods but may also 

be found in everyday products such as medicines, vitamins, and lip balms. 

When people with celiac disease eat foods or 

use products containing gluten, their immune 

system responds by damaging or destroying 

villi—the tiny, fingerlike protrusions lining 

the small intestine. Villi normally allow 

nutrients from food to be absorbed through 

the walls of the small intestine into the 

bloodstream. Without healthy villi, a person 

becomes malnourished, no matter how much 

food one eats. 

Villi 

Small intestine 

Villi on the lining of the small intestine help absorb 

nutrients. 

Liver 

Stomach 

Colon 

Small intestine 

The small intestine is shaded above. 

Celiac disease is both a disease of 

malabsorption—meaning nutrients are 

not absorbed properly—and an abnormal 

immune reaction to gluten. Celiac disease 

is also known as celiac sprue, nontropical 

sprue, and gluten-sensitive enteropathy. 
Celiac disease is genetic, meaning it runs 

in families. Sometimes the disease is triggered—or becomes active for the fi rst 

time—after surgery, pregnancy, childbirth, 

viral infection, or severe emotional stress. 

What are the symptoms of 

celiac disease? 

Symptoms of celiac disease vary from person to person. Symptoms may occur in the 

digestive system or in other parts of the body. 

Digestive symptoms are more common in 

infants and young children and may include 

• 	 abdominal bloating and pain 

• 	 chronic diarrhea 

• 	 vomiting 

• 	 constipation 

• 	 pale, foul-smelling, or fatty stool 

• 	 weight loss 

Irritability is another common symptom in 

children. Malabsorption of nutrients during 

the years when nutrition is critical to a child’s 

normal growth and development can result 

in other problems such as failure to thrive 

in infants, delayed growth and short stature, 

delayed puberty, and dental enamel defects 

of the permanent teeth. 

Adults are less likely to have digestive symptoms and may instead have one or more of 

the following: 

• 	 unexplained iron-defi ciency anemia 

• 	 fatigue 

• 	 bone or joint pain 

• 	 arthritis 

• 	 bone loss or osteoporosis 

• 	 depression or anxiety 

• 	 tingling numbness in the hands and feet 

• 	seizures 

• 	 missed menstrual periods 

• 	 infertility or recurrent miscarriage 

• 	 canker sores inside the mouth 

• 	 an itchy skin rash called dermatitis 


herpetiformis 


People with celiac disease may have no symptoms but can still develop complications of 

the disease over time. Long-term complications include malnutrition—which can lead 

to anemia, osteoporosis, and miscarriage, 

among other problems—liver diseases, and 

cancers of the intestine. 

2 	 Celiac Disease 
 

Why are celiac disease 

symptoms so varied? 

Researchers are studying the reasons celiac 

disease affects people differently. The length 

of time a person was 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 disease appears. 

Some studies have shown, for example, that 

the longer a person was breastfed, the later 

the symptoms of celiac disease appear. 

Symptoms also vary depending on a person’s 

age and the degree of damage to the small 

intestine. Many adults have the disease for 

a decade or more before they are diagnosed. 

The longer a person goes undiagnosed and 

untreated, the greater the chance of developing long-term complications. 

What other health problems 

do people with celiac 

disease have? 

People with celiac disease tend to have other 

diseases in which the immune system attacks 

the body’s healthy cells and tissues. The 

connection between celiac disease and these 

diseases may be genetic. They include 

• 	 type 1 diabetes 

• 	 autoimmune thyroid disease 

• 	 autoimmune liver disease 

• 	rheumatoid arthritis 

• 	 Addison’s disease, a condition in which 

the glands that produce critical hormones are damaged 

• 	 Sjögren’s syndrome, a condition in 

which the glands that produce tears and 

saliva are destroyed 

How common is celiac 

disease? 

Celiac disease affects people in all parts 

of the world. Originally thought to be a 

rare childhood syndrome, celiac disease is 

now known to be a common genetic disorder. More than 2 million people in the 

United States have the disease, or about 1 in 

133 people.1 Among people who have a fi rstdegree relative—a parent, sibling, or child— 

diagnosed with celiac disease, as many as 1 in 

22 people may have the disease.2 

Celiac disease is also more common among 

people with other genetic disorders including Down syndrome and Turner syndrome, a 

condition that affects girls’ development. 

1Fasano A, Berti I, Gerarduzzi T, et al. Prevalence 

of celiac disease in at-risk and not-at-risk groups 

in the United States. Archives of Internal Medicine. 

2003;163(3):268–292. 

2Ibid. 

3 	 Celiac Disease 
How is celiac disease 

diagnosed? 

Recognizing celiac disease can be diffi cult 

because some of its symptoms are similar 

to those of other diseases. Celiac disease 

can be confused with irritable bowel syndrome, iron-deficiency anemia caused by 

menstrual blood loss, infl ammatory bowel 

disease, diverticulitis, intestinal infections, 

and chronic fatigue syndrome. As a result, 

celiac disease has long been underdiagnosed 

or misdiagnosed. As doctors become more 

aware of the many varied symptoms of the 

disease and reliable blood tests become more 

available, diagnosis rates are increasing. 

Blood Tests 

People with celiac disease have higher than 

normal levels of certain autoantibodies— 

proteins that react against the body’s own 

cells or tissues—in their blood. To diagnose 

celiac disease, doctors will test blood for high 

levels of anti-tissue transglutaminase antibodies (tTGA) or anti-endomysium antibodies (EMA). If test results are negative but 

celiac disease is still suspected, additional 

blood tests may be needed. 

Before being tested, one should continue to 

eat a 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 the disease is present. 

Intestinal Biopsy 

If blood tests and symptoms suggest celiac 

disease, a biopsy of the small intestine is 

performed to confirm the diagnosis. During 

the biopsy, the doctor removes tiny pieces 

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 patient’s 

mouth and stomach into the small intestine. 

The doctor then takes the samples using 

instruments passed through the endoscope. 

4 Celiac Disease 
 

Dermatitis Herpetiformis 

Dermatitis herpetiformis (DH) is an 

intensely itchy, blistering skin rash that 

affects 15 to 25 percent of people with 

celiac disease.3 The rash usually occurs 

on the elbows, knees, and buttocks. 

Most people with DH have no digestive 

symptoms of celiac disease. 

DH is diagnosed through blood tests 

and a skin biopsy. 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 

the diet. The rash symptoms can be 

controlled with antibiotics such as dapsone. Because dapsone does not treat 

the intestinal condition, people with DH 

must maintain a gluten-free diet. 

3Rodrigo L. Celiac disease. World Journal of 

Gastroenterology. 2006;12(41):6585–6593. 

Screening 

Screening for celiac disease means testing 

for the presence of autoantibodies in the 

blood in people without symptoms. Americans are not routinely screened for celiac 

disease. However, because celiac disease is 

hereditary, family members of a person with 

the disease may wish to be tested. Four to 

12 percent of an affected person’s fi rstdegree relatives will also have the disease.4 

How is celiac disease 

treated? 

The only treatment for celiac disease is a 

gluten-free diet. Doctors may ask a newly 

diagnosed 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. Improvement 

begins within days of starting the diet. The 

small intestine usually heals in 3 to 6 months 

in children but may take several years in 

adults. A healed intestine means a person 

now has villi that can absorb nutrients from 

food into the bloodstream. 

4Ibid. 

5 Celiac Disease 
To stay well, people with celiac disease must 

avoid gluten for the rest of their lives. Eating 

even a small amount of gluten 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 short stature and 

dental enamel defects. 

Some people with celiac disease show no 

improvement on the gluten-free diet. The 

most common reason for poor response to 

the diet is that small amounts of gluten are 

still being consumed. Hidden sources of gluten include additives such as modifi ed food 

starch, preservatives, and stabilizers made 

with wheat. And because many corn and rice 

products are produced in factories that also 

manufacture wheat products, they can be 

contaminated with wheat gluten. 

Rarely, the intestinal injury will continue 

despite a strictly gluten-free diet. People 

with this condition, known as refractory 

celiac disease, 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. Researchers are evaluating 

drug treatments for refractory celiac disease. 

The Gluten-free Diet 

A gluten-free diet means not eating foods 

that contain wheat, rye, and barley. The 

foods and products made from these grains 

should also be avoided. 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. 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 that carry organic foods, or 

order products from special food companies. 

Gluten-free products are increasingly available from mainstream stores. 

6 Celiac Disease 
New Food Labeling 

The Food Allergen Labeling and Consumer Protection Act (FALCPA), which 

took effect on January 1, 2006, requires 

food labels to clearly identify wheat and 

other common food allergens in the list 

of ingredients. FALCPA also requires 

the U.S. Food and Drug Administration 

to develop and finalize rules for the use 

of the term “gluten free” on product 

labels. 

“Plain” meat, fish, rice, fruits, and vegetables 

do not contain gluten, so people with celiac 

disease can freely eat these foods. In the 

past, people with celiac disease were advised 

not to eat oats. New evidence suggests that 

most people 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 work closely 

with their health care team when deciding 

whether to include oats in their diet. Examples of other foods that are safe to eat and 

those that are not are provided in the table 

on page 8. 

The gluten-free diet requires a completely 

new approach to eating. Newly diagnosed 

people and their families may fi nd support 

groups helpful as they learn to adjust to a 

new way of life. People with celiac disease 

must be cautious about what they buy for 

lunch at school or work, what they purchase 

at the grocery store, what they eat at restaurants or parties, and what they grab for a 

snack. Eating out can be a challenge. When 

in doubt about a menu item, a person with 

celiac disease should ask the waiter or chef 

about ingredients and preparation or if a 

gluten-free menu is available. 

Gluten is also used in some medications. 

People with celiac disease should ask a 

pharmacist if prescribed medications contain 

wheat. Because gluten is sometimes used as 

an additive in unexpected products—such 

as lipstick and play dough—reading product 

labels is important. If the ingredients are not 

listed on the label, the manufacturer should 

provide a list upon request. With practice, 

screening for gluten becomes second nature. 

7 Celiac Disease 
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 the food does not contain gluten. 

amaranth legumes seeds 

arrowroot millet sorghum 

buckwheat nuts soy 

cassava potatoes tapioca 

corn quinoa teff 

flax rice wild rice 

Indian rice grass sago yucca 

Job’s tears 

wheat 

• including einkorn, emmer, spelt, kamut 

• wheat starch, wheat bran, wheat germ, cracked wheat, 

hydrolyzed wheat protein 

barley 

rye 

triticale (a cross between 

wheat and rye) 

bromated flour graham flour self-rising flour 

durum flour phosphated flour semolina 

enriched flour plain flour white flour 

farina 

bouillon cubes 

brown rice syrup 

candy 

chips/potato chips 

cold cuts, hot dogs, salami, 

sausage 

communion wafers 

French fries 

gravy 

imitation fish 

matzo 

rice mixes 

sauces 

seasoned tortilla chips 

self-basting turkey 

soups 

soy sauce 

vegetables in sauce 

Allowed Foods 

Foods to Avoid 

Other Wheat Products 

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

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

Source: Thompson T. Celiac Disease Nutrition Guide, 2nd ed. Chicago: American Dietetic Association; 2006. © 

American Dietetic Association. Adapted with permission. For a complete copy of the Celiac Disease Nutrition 

Guide, please visit www.eatright.org. 

8 Celiac Disease 
 

Points to Remember 

• 	 People with celiac disease cannot 

tolerate gluten, a protein in wheat, 

rye, and barley. 

• 	 Untreated celiac disease damages 

the small intestine and interferes 

with nutrient absorption. 

• 	 Without treatment, people with 


celiac disease can develop complications such as osteoporosis, 


anemia, and cancer. 


• 	 A person with celiac disease may or 

may not have symptoms. 

• 	 Diagnosis involves blood tests and, 

in most cases, 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 about food selection, 

label reading, and other strategies 

to help manage the disease. 

Hope through Research 

The National Institute of Diabetes and 

Digestive and Kidney Diseases conducts 

and supports research on celiac disease. 

Researchers are studying new options for 

diagnosing celiac disease, including capsule 

endoscopy. In this technique, patients swallow a capsule containing a tiny video camera 

that records images of the small intestine. 

Several drug treatments for celiac disease 

are under evaluation. Researchers are also 

studying a combination of enzymes—proteins 

that aid chemical reactions in the body—that 

detoxify gluten before it enters the small 

intestine. 

Scientists are also developing educational 

materials for standardized medical training 

to raise awareness among health care providers. The hope is that increased understanding and awareness will lead to earlier 

diagnosis and treatment of celiac disease. 

Participants in clinical trials can play a more 

active role in their own health care, gain 

access to new research treatments before 

they are widely available, and help others by 

contributing to medical research. For information about current studies, visit 

www.ClinicalTrials.gov. 

9 	 Celiac Disease 
For More Information 

American Celiac Disease Alliance 

2504 Duxbury Place 

Alexandria, VA 22308 

Phone: 703–622–3331 

Email: info@americanceliac.org 

Internet: www.americanceliac.org 

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–CSA–4CSA (272–4272) 

Fax: 402–558–1347 

Email: celiacs@csaceliacs.org 

Internet: www.csaceliacs.org 

Children’s Digestive Health and Nutrition 

Foundation 

P.O. Box 6 

Flourtown, PA 19031 

Phone: 215–233–0808 

Fax: 215–233–3918 

Email: mstallings@naspghan.org 

Internet: www.cdhnf.org 

www.celiachealth.org 

Gluten Intolerance Group of North America 

31214 124th Avenue SE 

Auburn, WA 98092–3667 

Phone: 253–833–6655 

Fax: 253–833–6675 

Email: info@gluten.net 

Internet: www.gluten.net 

National Foundation for Celiac Awareness 

P.O. Box 544 

Ambler, PA 19002–0544 

Phone: 215–325–1306 

Email: info@celiaccentral.org 

Internet: www.celiaccentral.org 

North American Society for Pediatric 

Gastroenterology, Hepatology and Nutrition 

P.O. Box 6 

Flourtown, PA 19031 

Phone: 215–233–0808 

Fax: 215–233–3918 

Email: naspghan@naspghan.org 

Internet: www.naspghan.org 

10 Celiac Disease 
11 Celiac Disease

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.

You may also find additional information about this 

topic by visiting MedlinePlus at www.medlineplus.gov.

This publication may contain information about medications. When prepared, this publication included

the most current information available. For updates 

or for questions about any medications, contact 

the U.S. Food and Drug Administration toll-free at 

1–888–INFO–FDA (463–6332) or visit www.fda.gov. 

Consult your doctor for more information.
National Digestive Diseases 

Information Clearinghouse 

2 Information Way 

Bethesda, MD 20892–3570 

Phone: 1–800–891–5389 

TTY: 1–866–569–1162 

Fax: 703–738–4929 

Email: nddic@info.niddk.nih.gov 

Internet: www.digestive.niddk.nih.gov 

The National Digestive Diseases Information 

Clearinghouse (NDDIC) is a service of the 

National Institute of Diabetes and Digestive and 

Kidney Diseases (NIDDK). The NIDDK is part 

of the National Institutes of Health of the U.S. 

Department of Health and Human Services. 

Established in 1980, the Clearinghouse provides 

information about digestive diseases to people with 

digestive disorders and to their families, health care 

professionals, and the public. The NDDIC answers 

inquiries, develops and distributes publications, 

and works closely with professional and patient 

organizations and Government agencies to 

coordinate resources about digestive diseases. 

Publications produced by the Clearinghouse are 

carefully reviewed by both NIDDK scientists and 

outside experts. This fact sheet was originally 

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. 

This publication is not copyrighted. The Clearinghouse 

encourages users of this fact sheet to duplicate and 

distribute as many copies as desired. 

This fact sheet is also available at 

www.digestive.niddk.nih.gov. 

U.S. DEPARTMENT OF HEALTH 

AND HUMAN SERVICES 

National Institutes of Health 

NIH Publication No. 08–4269 

September 2008