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P a t i en t E d u c a t i o n
Celiac Disease
Introduction
Figure 2. Small intestine and normal villi
Celiac disease is a condition that affects the small intestine.
When people with celiac disease eat the protein gluten
(contained in bread, pasta, and many other foods that
contain wheat, barley or rye), an immune reaction occurs
in the small intestine, damaging the villi (tiny folds in
the wall of the small intestine) that line it. The damage
causes problems with the absorption of nutrients from
all foods. Eventually, the malabsorption can cause other
health problems, such as osteoporosis or anemia.
Celiac disease is also called celiac sprue, nontropical
sprue or gluten-sensitive enteropathy.
There is no cure for celiac disease, but you can manage
it with diet. This paper about celiac disease discusses:
•• Signs and symptoms
•• Causes
•• How it’s diagnosed
Villi
Small intestine
In celiac disease, the villi in the wall of the small
intestine are damaged, interfering with their
ability to absorb nutrients (figure 3).
•• Possible complications
•• Treatment
Figure 3. Healthy and damaged villi
Normal villus
Damaged villus
Your digestive system
To better understand celiac disease, it may help to
learn about your digestive system. Your digestive
system includes your esophagus, stomach,
and small and large intestines (figure 1).
Normal villi
Damaged villi
Figure 1. Your digestive system
Esophagus
Healthy small intestine
Celiac small intestine
Stomach
Signs and systems
Small intestine
(shaded area)
Symptoms of celiac disease vary and may include the
following. Gastrointestinal (GI) symptoms may include:
Large intestine
•• Intermittent diarrhea
•• Upset stomach
Rectum
•• Abdominal pain or cramps
•• Bloating, gas
Some people may not have any gastrointestinal
(GI) symptoms, while others may have symptoms
that are like those of other GI conditions, such
as irritable bowel syndrome, lactose intolerance,
Crohn’s disease or parasite infections.
P a t i en t E d u c a t i o n : C e l i a c D is e a s e
Other symptoms, not obviously related
to GI ones, can include:
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Depression
Irritability
Anemia
Joint pain
Muscle cramps
Skin rash
Mouth sores
Dental problems
•• Bone problems (such as
osteoporosis)
•• Tingling in the legs and
feet (neuropathy)
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General weakness
Failure to grow in children
Weight loss
Infertility
When to contact your health care provider
If you have symptoms of celiac disease or have a family
member with the disease, contact your health care
provider. Also, if you have a child who is not growing
normally and who has some of these symptoms, talk
with your health care provider about testing. Because
the symptoms may indicate other conditions as well,
get medical advice before starting a gluten-free diet.
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of your immune system; they fight what they see as
foreign substances. In celiac disease, gluten is seen
as a foreign substance by certain antibodies.
Blood tests can check the levels of these antibodies
and can be used to find who may have celiac
disease and who may need more testing.
To confirm the diagnosis, a positive blood test is usually
followed by a biopsy of the small intestine. The biopsy
is done by passing a thin tube down your esophagus
through your stomach to your small intestine, where a
small sample of tissue is taken. The sample is examined to
check for damage to the small intestine. Trying a glutenfree diet to confirm a diagnosis is not recommended
and can give a false reading to the blood test.
The following test options for celiac disease can be ordered
from Mayo Medical Laboratories by your physician:
•• #89199 Celiac Disease Serology Cascade
•• #89201 Celiac Disease Comprehensive Cascade
•• #89200 Celiac Disease Cascade for Patients on a
Gluten-Free Diet
Causes
Celiac disease can occur at any age, once gluten is added
to the diet. Although the exact cause is not known, it
seems to be inherited. You have a greater chance of
getting celiac disease if a member of your family has it.
Also, for some reason, it may appear after trauma—a
physical injury, such as an intestinal infection or surgery.
Cascade Components:
Who gets celiac disease?
•• Gliadin (Deamidated) Antibody, IgA, Serum
•• Gliadin (Deamidated) Antibody, IgG, Serum
•• Gliadin (Deamidated) Antibodies Evaluation, IgG and
Celiac disease can affect anyone, but it seems to be more
common in people of European or Caucasian descent
and people with autoimmune disorders, such as thyroid
disease, type 1 diabetes or rheumatoid arthritis. It is also
common in people from North Africa and the Middle East.
Celiac disease may be under diagnosed because many of
the symptoms are like those of other conditions. It may
be more common in the United States than previously
thought. However, now blood tests are available to
confirm the diagnosis, even when symptoms are mild.
Diagnosis
Certain antibodies (anti-gliadin, anti-endomysium,
anti-tissue transglutaminase) are higher than normal
in people with celiac disease. Antibodies are part
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Immunoglobulin A (IgA), Serum
Tissue Transglutaminase (tTg) IgA Antibodies, Serum
Tissue Tranglutaminase (tTg) Antibody, IgG, Serum
issue Transglutaminase (Ttg) Antibodies, IgA and IgG
T
Profile, Serum
IgA, Serum
•• Endomysial Antibodies (IgA), Serum
A genetic test is available to see if you have the gene
for celiac disease or dermatitis herpetiformis (a related
condition). This test is available from Mayo Medical
Laboratories as #88906 Celiac-Associated HLA-DQ
Alpha 1 and DQ Beta 1 High-Resolution DNA Typing,
Blood. While a genetic test can tell whether a person has
the gene for a particular disorder, a positive test does
not mean you have the disease or that you will get the
disease. A positive test means there is a possibility you
will get the disease. If you have a positive genetic test,
discuss further steps with your health care provider.
P a t i en t E d u c a t i o n : C e l i a c D is e a s e
Complications
If not treated, celiac disease can lead to
serious health problems, including:
Malnutrition. Celiac disease damages the small
intestine, not allowing it to absorb the nutrients you
need. This can lead to anemia and weight loss and,
in children, can delay growth and development.
Anemia. Iron is one nutrient that is not absorbed in celiac
disease. This can result in anemia (low hemoglobin),
with possible tiredness or other complications.
Loss of calcium and bone density. Calcium and
vitamin D are two of the nutrients that are not
absorbed in celiac disease. This can result in the
softening of the bone or loss of bone density.
Lactose intolerance. Because of the damage to the
small intestine, some people with celiac disease may
also have problems digesting dairy products. This
is called lactose intolerance. In some people, if the
intestine heals, the lactose intolerance will resolve.
Cancer. People with celiac disease have a greater chance
of getting some types of cancer, especially cancer of
the bowel or intestinal lymphoma. This small risk
usually lessens once people are on a gluten-free diet.
Neurological problems. Celiac disease may be
related to some neurological problems such as
seizures and peripheral neuropathy (disease of
the nerves that lead to the hands and feet).
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Also, many other foods have ingredients that contain
gluten or can be contaminated during processing.
The gluten-free diet must be lifelong. If you stop the
diet, you will eventually get symptoms again.
On a positive note, most plain meats, vegetables, and fruits,
as well as dairy products, rice and potatoes are gluten free.
Also, gluten-free substitutes are available. Ask your
dietitian where to shop for these products and about
resources and celiac disease support groups.
Learn to read food labels. A dietitian can give you
tips on what to look for on food labels. If it isn’t
clear from the label whether a product contains
gluten, call the manufacturer. Don’t eat it if you
are not sure whether it contains gluten.
Adapt your favorite recipes. If your favorite foods
contain gluten, you may be able to substitute glutenfree items and still eat your favorite foods.
You can still eat out. You may have to call a restaurant in
advance, but many places do offer gluten-free items.
Living with celiac disease can be a challenge. It
will take time and patience to learn how to follow a
gluten-free diet. However, you will feel better and
with experience, it will get easier to manage a glutenfree lifestyle. Remember, you are in control.
If you have questions about this information or
your health, talk with your health care provider.
Treatment
Frequently Asked Questions
The good news is that you can control celiac disease.
Although there is no cure, you can manage the disease
through diet. Usually, several weeks after removing
gluten from your diet, the small intestine begins to heal
and you begin to feel better. It may take several months
to heal completely, and you may need to take vitamin
and mineral supplements. Because many unexpected
foods have gluten, you are strongly encouraged to
consult a dietitian with experience in gluten-free diets.
How strict do I need to be?
The minimum safe amount of gluten is unknown.
However, even tiny amounts of gluten in the diet
may damage the intestine and cause serious, longterm problems. So, even if you don’t have symptoms,
you must follow the gluten-free diet strictly.
Living with celiac disease
You must avoid gluten. Any food that contains gluten
(wheat, barley or rye) is off limits. This includes bread,
pasta, cereals, and bakery goods- among others.
Are oats allowed?
If your intestine is healed (after one year on a glutenfree diet), and you have never had severe complications
with celiac disease, it is OK to try special, gluten-free
oats. There is about a 5 percent chance you could react. If
you do try oats, you should be followed by a health care
provider who is experienced in treating celiac disease.
If you get symptoms, even mild ones, stop eating oats.
P a t i en t E d u c a t i o n : C e l i a c D is e a s e
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My 14-year-old son recently ate some gluten and didn’t get
sick. Now he argues that he doesn’t have celiac disease, and he
is eating everything. This has been going on for five days, and
he still doesn’t have symptoms. Does he have celiac disease?
Your son’s intestine has healed since going on his glutenfree diet. After the intestine is healed, how long it takes
to develop symptoms varies with the individual. Some
people with celiac disease have symptoms with their
first meal containing gluten. For others, symptoms may
not return for weeks or months. Damage to the small
intestine can occur even if there are no symptoms.
How do we know if a product is gluten-free if it doesn’t
say it on the label?
You can call the manufacturer that makes the product
or look at the product information online. You could
also contact a local celiac disease support group to
see if they have information about the product.
Why can’t we just have the genetic test and not
have to repeat testing for celiac disease?
A positive genetic test indicates only that you have
the gene for celiac disease; it doesn’t mean you
have the disease or that you will get it. Even if you
are symptom free, it is a good idea to be retested as
advised by your health care provider. If the genetic
test is negative, you never have to be retested.
Do I need to check for gluten in shampoo or lotions?
In celiac disease, the small intestine absorbs the protein
that causes the damage. You don’t have to worry
about gluten in things you don’t eat. However, items
you put in your mouth like toothpaste, communion
wafers and possibly lipstick are things to be wary of.
My child goes to school. The school is not
helping with gluten-free lunches.
Although schools are required to help with
special diets, schools have varying abilities to
accommodate special diets. If you are not able to
work out a plan with the food service managers, it
may be easiest to send lunch with your child.
My child argues with us about the gluten
free diet. What should we do?
The gluten-free diet is a fact of your child’s life. It is
not something to argue about—just as you wouldn’t
argue about giving your child prescribed medications.
It may be easiest to enforce the gluten-free diet if
the family can adopt the gluten-free diet for shared
meals. This places fewer temptations in front of
the child. Also, look for gluten-free treats for your
child. However, at risk family members should be
tested before they reduce the gluten in their diet.
The diet is so restrictive. How can I feel as if I have choices?
The most helpful approach is to focus on what you can
eat, which includes a wide variety of healthy foods. Look
at this as an opportunity to start a healthier lifestyle.
If you have questions about this information or
your health, talk with your health care provider.