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Celiac Disease
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 is also found in products we use
every day, such as stamp and envelope adhesive, medicines, and vitamins.
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.
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.
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
- 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
Why are celiac 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.
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 under
diagnosed 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) and
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.
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 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.
The 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 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 disease.
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.
Our service offers you a large number of meal plans that were specifically designed as gluten-free. You can access them with our Basic FREE plan. Following a meal plan that is appropriate for you helps to control your health.
Checking labels for "gluten free" is important since many corn and rice
productsof 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
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 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.
Food Categories
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Foods Recommended
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Foods To Omit
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Tips
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Breads, cereals, rice, and pasta: 6 to 11
servings each day |
Serving size = 1 slice
bread, 1 cup ready-to-eat cereal, ? cup cooked cereal, rice, or pasta; ?
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
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Foods Recommended
|
Foods To Omit
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Tips
|
Vegetables: 3 to 5 servings each day (includes
starchy vegetables) |
Serving size = 1 cup
raw leafy, ? cup cooked or chopped, ? 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
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Foods Recommended
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Foods To Omit
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Tips
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Fruits: 2 to 4 servings each day |
Serving size = 1
medium size, ? cup canned, ? cup juice, ? cup dried |
All fruits and fruit
juices |
Some commercial fruit
pie fillings, dried fruit |
|
Food Categories
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Foods Recommended
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Foods To Omit
|
Tips
|
Milk, yogurt, and cheese: 2 to 3 servings each
day |
Serving size = 1 cup
milk or yogurt, 1 ? 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
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Foods To Omit
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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, ? cup cooked beans, 2 Tbsp peanut butter, or ?
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
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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 disease?
Damage to the small intestine and the resulting nutrient absorption problems
put a person with celiac disease 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 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 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 disease.
More research is needed to learn the true prevalence of celiac disease among
Americans.
Points to Remember
- People with celiac disease cannot tolerate gluten, a
protein in wheat, rye, barley, and possibly oats.
- 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.
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
- Sj?gren's syndrome
Dermatitis Herpetiformis
Dermatitis herpetiformis (DH) is a severe itchy, blistering manifestation of
celiac disease. The rash usually occurs on the elbows, knees, and buttocks. Not
all people with celiac disease develop dermatitis herpetiformis. 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 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.
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.
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.
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
SUMMARY: Be careful with gluten |
Always contain gluten: |
May contain gluten: |
Barley (extract, flavor, flour, malt)
Beer
Bulgur
Cereal Extract
Cracker Meal
Durum
Eikorn
Emmer
Farina
Farro
Flour (unless labeled gluten free)
Graham
Kamut
Matzoh/matzoh meal
Rye products
Semolina
Spelt
Wheat (bran, flour, germ, starchy)
|
Bread crumbs
Dextrin
Flavored coffees and teas
Hydrolyzed vegetable or plant protein (HVP or HPP)
Imitation seafood or bacon
Processed foods
Seasonings or flavorings
Seitan
Soy Sauce/soy sauce solids
Textured vegetable protein
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Source: NIH Publication No. 06?4269 October 2005
Adapted by Editorial Staff, August 2006
Last update, July 2008
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