Celiac disease is an autoimmune disorder that affects about one in 133 people. People who have celiac disease (CD) can’t digest a type of protein called gluten, so the body rejects it, making the person sick.
Living with celiac disease may sound difficult, but once you adjust to a new pattern and process, everyday events become easier to deal with.
In a normal-functioning small intestine, small fingerlike villi 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 any gluten destroys the villi and causes severe damage to the small intestine. CD is classified as an autoimmune disorder because the body’s immune system produces the response. It’s also often categorized as a malabsorption disorder because the body becomes malnourished when nutrients are not absorbed.
Celiac disease can be genetic, meaning it’s common within a family. About one in 22 people who have a first-degree relative (such as a parent or sibling) with CD also have it.
The disease isn’t always immediately present when a baby starts to eat gluten. A person can become intolerant to gluten as a toddler, young child, teenager or even as an adult. Sometimes symptoms begin after a stressful emotional event, surgery, illness, infection or childbirth.
The symptoms of celiac disease vary greatly from person to person. Some common symptoms are:
Some people with celiac disease experience none of these symptoms, while some suffer from numerous symptoms.
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’s also a good idea to talk to your doctor if you have a relative with celiac disease because there’s an increased chance you also have it — even if you don’t have symptoms.
You can get a blood test for certain types of proteins called antibodies. The body produces these antibodies in response to a perceived threat. For CD, a doctor will typically test for immunoglobulin A (IgA), anti-tissue transglutaminase (tTGA) and IgA anti-endomysium antibodies (AEA).
A doctor might also do a bowel biopsy, which removes a tiny piece of the small intestine to see if it’s damaged. To do this procedure, a doctor inserts an endoscope into a person’s mouth and follows it to the small intestine, where it removes the tissue used to examine the villi.
For the doctor to see if a person has CD, the person must currently be eating a diet that contains gluten. Otherwise the tests might show negative results.
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 (this is often called gluten sensitivity instead of CD).
There is no cure for celiac disease. The only way to manage it is to strictly eliminate gluten for life. This gives the small intestine and the villi the chance to heal and become healthy again.
Most people with CD 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 a few cases, a gluten-free diet doesn’t relieve the symptoms and the person can continue to be malnourished. These cases are called unresponsive celiac disease. Rarely, unresponsive celiac disease can’t be corrected by removing gluten from the diet, and the person may need nutrients delivered intravenously.
If you have CD, a dietitian or nutritionist can help you learn what foods you can and can’t eat.
Gluten is a kind of protein found in all kinds of wheat (such as durum, semolina, spelt, kamut, einkorn, and faro), as well as barley, rye and triticale (a cross between wheat and rye). People with celiac disease can’t eat any foods made with these ingredients.
Pure oats are gluten-free, but oats are commonly contaminated with gluten because they’re processed with the same equipment used on gluten-containing grains.
Some of the most common foods that contain gluten are:
Other more surprising foods that contain gluten include:
Foods and other items that may have hidden gluten include:
If you have celiac disease, make sure you’re aware of these hidden sources of gluten. Read labels carefully or call manufacturers before eating something that could harm you.
Fortunately, most foods don’t contain gluten. All plain meats, fish, fruits, vegetables, rice, potatoes and corn are naturally gluten-free. There are also gluten-free breads, cereals, cakes, pizza dough and many more foods made especially for people with celiac disease.
School and Work
Get a letter from your doctor explaining your condition. When explaining celiac disease to your school or workplace staff, highlight its serious health effects. At school, arrange a meeting with your teacher, school nurse and kitchen staff to discuss your needs.
It’s easy for a school or workplace cafeteria to plan, make and label gluten-free foods. Or you can always pack a sack lunch. Keep a snack pack with you in case someone brings in treats that you can’t eat.
Parties and Social Events
At birthday parties or other celebrations, you might feel left out if you can’t have the gluten-containing birthday cake or snacks that others are eating. One idea is to bring some gluten-free cupcakes or snacks for everyone to enjoy — not just the people who can’t eat gluten. If you notify the host ahead of time, they might be willing to prepare a gluten-free treat for all guests, including you.
Restaurants
It’s not hard to eat at restaurants if you have celiac disease; you just have to know what to order and how it’s prepared. If possible, look at the menu beforehand and decide on some possible choices. Many menus now mark which items are gluten-free, but feel free to ask the waiter or chef to be sure. It’s 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.
Home
Some families who have one or more members with celiac disease make their home completely gluten-free. This means anyone in the family can choose a snack without having to read the label to confirm it’s safe. It also prevents cross-contamination caused by shared utensils, cutting boards, etc. Sensitive celiac disease sufferers can become sick if their gluten-free bread mixes with crumbs from regular bread in a shared toaster. Even a crumb of bread in the peanut butter jar can make a person with CD sick.
If your household can’t go completely gluten free, create a special gluten-free safe zone in the kitchen. Keep serving utensils separate, and don’t allow double-dipping into serving containers.
Adapting to a gluten-free life can 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.
Last Reviewed: August 2019