Celiac disease is an autoimmune disorder that affects about one in 133 people. People who suffer from celiac disease have gluten intolerance; their bodies cannot absorb a type of protein called gluten, so the body rejects it when ingested, making the person sick.
Living with celiac can seem difficult, but once someone with celiac adjusts to a new pattern and process, everyday events will become easier to deal with.
- What is celiac disease?
- How does someone get celiac disease?
- What are the symptoms?
- How is it diagnosed?
- How is it treated?
- What contains gluten?
- What can a person with celiac disease eat?
- At School
- At Parties & Social Events
- At Restaurants
What is celiac disease?
In a normal-functioning small intestine, there are small finger-like villi that line the inner surface. When food passes by, these villi absorb nutrients into the bloodstream, allowing the body to be nourished.
In someone with celiac disease, the presence of gluten destroys the function of these villi and causes severe damage to the small intestine each time gluten is ingested.
It is classified as an autoimmune disorder, because the immune system of the body produces the response. It is also often categorized as a malabsorption disorder, because as nutrients are not absorbed, the body becomes malnourished.
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How does someone get celiac disease?
Celiac disease can be genetic, meaning it is common within a family. About one in 22 people who have a first-degree relative (such as a parent or sibling) with celiac disease also have it.
The disease is not always immediately present when a baby begins to eat gluten. A person can become sensitive to gluten as a toddler, young child, teenager, or even as an adult.
Often symptoms begin to occur after a stressful emotional event, surgery, illness, infection, or childbirth. These can be triggers of symptoms.
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What are the symptoms?
The symptoms of celiac disease vary greatly from patient to patient. Here are some of the common symptoms:
- Diarrhea or constipation, or both
- Stomach pain
- Abdominal bloating
- Fat in stools, called steatorrhea
- Pale, unpleasant-smelling bowel movements
- Weight loss or weight gain
- Fatigue, feeling very tired
- Osteoporosis (bones lack calcium and become porous and weak)
- Joint or bone pain
- Anemia (lack of iron in blood)
- Delayed growth
- Missed menstrual cycles in females
- Short stature in children, a result of malabsorption
- Failure to thrive, especially in infants
- Infertility in adults
- Rash on skin called dermatitis herpetiformis
If you experience any of these symptoms, no matter what your age or previous experience eating gluten, visit your doctor to see if further tests are necessary.
It is also a good idea to talk to your doctor if you have a relative with celiac disease because there is an increased chance you also have it – even if you have no symptoms.
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How is it diagnosed?
You can have a blood test are certain antibodies – types of proteins – in the blood that can be tested for. These are antibodies that the body produces in response to something it perceives as a threat. The antibodies that a doctor will typically test for include: Immunoglobulin A (IgA), Anti-tissue transglutaminase (tTGA), and IgA anti-endomysium antibodies (AEA).
A doctor might also do a bowel biopsy, meaning they remove a tiny piece of the small intestine to see if it is damaged. To do this procedure, a doctor inserts an endoscope into a person's mouth and follows it to the small intestine, where the doctor removes the tissue and examines the villi.
For the doctor to see if his or her patient has celiac disease, the patient has to currently be eating a diet that contains gluten, or the tests might show negative results when indeed a patient has symptoms of celiac disease when eating a diet that contains gluten.
Not all blood tests show celiac disease. There are different levels of the disease, too. Some people cannot eat even a crumb of gluten without getting sick, while other people can eat some gluten but not too much. If people with a milder form of celiac disease cut back on the amount of gluten they eat, their symptoms might decrease.
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How is it treated?
There is no treatment for celiac disease. The only way to manage it is to follow a diet that contains no gluten for the person's entire life. This gives the small intestine and the villi the chance to heal and become healthy again.
Most people with celiac disease who eat a gluten-free diet feel much better, and their symptoms go away. Once the symptoms go away, the person must continue to not eat gluten, or the symptoms will come back. Celiac disease will not go away just because the symptoms disappear.
In few cases, a gluten-free diet does not help symptoms go away, and the sufferer can continue to be malnourished and fail to thrive. These cases are called unresponsive celiac disease. In this case, even very small amounts of gluten are still in the diet.
Typically, with the complete removal of gluten from the diet, the patient will feel better. Rarely, unresponsive celiac disease cannot be corrected by removing gluten from the diet, and nutrients delivered directly to the body intravenously may be necessary to supplement what the body is unable to absorb.
A dietician or nutritionist can help someone with celiac disease learn what foods they can and cannot eat. They can help someone plan nutritious meals and plan for situations in which finding a gluten-free option may seem difficult.
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What contains gluten?
Gluten, a kind of protein in many grains, is found is every type of wheat. Some of the common types of wheat are durum, semolina, spelt, kamut, einkorn, and faro. Other grains that have gluten are barley, rye, oats, and triticale. People with celiac disease cannot eat any foods that contain these ingredients.
Some of the most common foods that contain gluten are bread, pasta, cereal, pizza, cake, and many other such foods. Other foods that you might not suspect contain gluten are soy sauce, licorice, lots of candies, and malt – a flavoring used in some foods. Make sure to read the ingredient list to look for hidden gluten sources.
Some foods also have hidden things added to them including preservatives and stabilizers, such as processed foods with long ingredient lists, mouthwash, some medicines, and even envelopes. If you have celiac disease, make sure you are aware of these hidden sources of gluten, and be sure to read labels or call manufacturers before eating something that could potentially be harmful.
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What can a person with celiac disease eat?
There are actually many options. All plain meats, fish, fruits, vegetables, rice, potatoes, and corn are gluten-free. There are also gluten-free breads, cereals, cakes, and cookies that are made especially for people with celiac disease. You can find gluten-free products at Whole Foods and online stores. These can be good substitutes for common gluten-containing items.
It is important for people with celiac disease to achieve a well-balanced diet, while ensuring they can participate in social activities without feeling left out.
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It can be hard to stay away from gluten at school, but there are a few things to make the experience easier.
Get a letter from your physician explaining your condition. In a school cafeteria, it can be easy to plan a gluten-free meal, or list of foods that are okay for you to eat. If this is not possible, it is always safe to pack a sack lunch. When explaining information to the school, highlight what is most important.
Do not expect the school to conform perfectly; everyone makes mistakes just as you probably did when first dealing with celiac disease. Be respectful of the school's efforts to accommodate your situation, and work with them to improve its guidance.
Have your parents arrange a meeting with your teacher, school nurse, principal, and kitchen staff to discuss your needs. It is a good idea to keep a snack pack just for you in the classroom in case a treat is brought to the classroom that you cannot eat.
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At Parties & Social Events
At birthday parties or other celebrations, people with celiac disease might feel left out if they cannot have the birthday cake or snacks that others are eating. One great idea is to bring some gluten-free cupcakes or snacks for everyone to enjoy – not just the people who cannot eat gluten. Notify the host ahead of time, and they might be willing to prepare a gluten-free treat for all guests, including you.
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It is not hard for people with celiac disease to eat out at a restaurant; they just have to know what to order and how it is prepared. Teens with celiac disease should know what "safe" foods can be ordered, and they can ask the waiter or chef for some suggestions.
It is also important to find out how food is prepared, because there might be hidden sources of gluten such as salad dressing or the bread coating on fried foods. If possible, look at the menu before going to the restaurant and decide on some possible choices so you are not unpleasantly surprised at the restaurant.
Some families who have one or more member with celiac disease make their house completely gluten-free. This means anyone in the family can choose a snack from the kitchen without having to read the label to confirm it is gluten-free. This also prevents cross-contamination, as sensitive celiac disease sufferers can become sick if their gluten-free bread mixes with crumbs from regular bread in the shared toaster. Even a crumb of bread in the peanut butter jar can make a sensitive person sick.
If it seems difficult to completely transform the household for one member of the family, it is a good idea to create a special gluten-free section of the kitchen where there is a safe-zone for someone with celiac to pick a meal or snack. Keep serving utensils separate, or do not allow double-dipping into serving containers.
Adapting a gluten-free life can and will seem difficult and overwhelming at first, but after making some adjustments and educating yourself, your family and your community, living with celiac disease will become a normal part of life.
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Written By: Julia Ransohoff,
high school student writer
Reviewed By: Nancy Brown, Ph.D.
Last Reviewed: October 2013
Below are links PAMF accessed when researching this topic. PAMF does not sponsor or endorse any of these sites, nor does PAMF guarantee the accuracy of the information contained on them.
Celiac Disease, National Digestive Diseases Information Clearinghouse (NDDIC).
Celiac Disease Foundation.
National Foundation for Celiac Awareness.
Celiac Disease in Children.
For More Information:
See our Food Guide article.
See our Food Allergy Tips article.