Symptoms of 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?
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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.
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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
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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
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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.
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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.
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