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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 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.
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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:
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Gas
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recurring abdominal bloating and pain
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chronic diarrhea
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pale, foul-smelling, or fatty stool
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weight loss / weight gain
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fatigue
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unexplained anemia (a low count of red blood cells causing fatigue)
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bone or joint pain
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osteoporosis, osteopenia
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behavioral changes
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tingling numbness in the legs (from nerve damage)
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muscle cramps
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seizures
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missed menstrual periods (often because of excessive weight loss)
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infertility, recurrent miscarriage
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delayed growth
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failure to thrive in infants
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pale sores inside the mouth, called aphthous ulcers
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tooth discoloration or loss of enamel
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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 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 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:
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.
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What is the
treatment for Celiac Disease?
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.
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
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.
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Breads, cereals, rice, and pasta: 6 to 11 servings each day |
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Serving size = 1 slice bread, 1 cup ready-to-eat cereal, ½ cup cooked
cereal, rice, or pasta; ½ 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. |
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Vegetables: 3 to 5 servings each day (includes starchy vegetables) |
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Serving size = 1 cup raw leafy, ½ cup cooked or chopped, ¾ 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. |
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Fruits: 2 to 4 servings each day |
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Serving size = 1 medium size, ½ cup canned, ¾ cup juice, ¼ cup dried |
All fruits and fruit juices |
Some commercial fruit pie fillings, dried fruit |
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Milk, yogurt, and cheese: 2 to 3 servings each day |
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Serving size = 1 cup milk or yogurt, 1 ½ 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. |
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Meats, poultry, fish, dry beans and peas, eggs, and nuts:
2 to 3 servings or total of 6 oz daily |
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Serving size = 2 to 3 oz cooked; count 1 egg, ½ cup cooked beans, 2 Tbsp
peanut butter, or ¼ 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. |
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Food Categories |
Foods Recommended |
Foods To Omit |
Tips |
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Fats, snacks, sweets, condiments, and beverages |
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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.
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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 and anemia as well as
several diseases and health problems.
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Lymphoma and adenocarcinoma
are cancers that can develop in the intestine.
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Osteoporosis
is a condition in which the bones become weak, brittle, and prone to
breaking. Poor calcium absorption contributes to osteoporosis.
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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.
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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 under diagnosed in the United States for a number of
reasons including:
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Celiac symptoms can be attributed to other problems.
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Many doctors are not knowledgeable about the disease.
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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:
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Points to Remember
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People with celiac disease cannot tolerate gluten, a protein in wheat, rye,
barley, and possibly oats.
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Celiac disease damages the small intestine and interferes with nutrient
absorption.
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Without treatment, people with celiac disease can develop complications like
cancer, osteoporosis, anemia, and seizures.
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A
person with celiac disease may or may not have symptoms.
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Diagnosis involves blood tests and a biopsy of the small intestine.
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Since celiac disease is hereditary, family members of a person with celiac
disease may wish to be tested.
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Celiac disease is treated by eliminating all gluten from the diet. The
gluten-free diet is a lifetime requirement.
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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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