Celiac Disease

What is celiac disease?

Celiac disease is a digestive problem that hurts your small intestine. It stops your body from taking in nutrients from food.

You may have celiac disease if you are sensitive to gluten. Gluten is a kind of protein found in wheat, rye, barley, and sometimes in small amounts in mixed oats.

When you have celiac disease and you eat foods with gluten, your body has a reaction that is not normal. The part of your body that fights disease (the immune system) starts to hurt your small intestine. It attacks the tiny bumps (villi) that line your small intestine.

The villi help your body take in nutrients from food into your bloodstream. Without the villi, your small intestine can’t get enough nutrients, no matter how much food you eat.

Celiac disease is genetic. This means it can be passed down from parent to child.

More than 2 million Americans have been diagnosed with celiac disease. Studies show that as many as 1 in every 133 Americans may have it. They may not know they have it.

Celiac disease is more common in people:

  • Whose ancestors came from Europe
  • Who are white
  • Who have type 1 diabetes
  • Who have Down syndrome
  • Who have other autoimmune diseases
  • Who are infertile
  • Who have irritable bowel syndrome with diarrhea

What causes celiac disease?

Celiac disease is a genetic disease that runs in families. You may have celiac disease and not know it because you don’t have any symptoms.

Some things that may make symptoms start to appear are:

  • Too much stress
  • Pregnancy
  • Surgery
  • Physical injury
  • Infection
  • Childbirth

What are the symptoms of celiac disease?

Celiac disease affects people in different ways. Some have symptoms as children. Others have symptoms only as adults. Some people have diarrhea and belly (abdominal) pain. Others may feel moody or depressed.

Each person’s symptoms may vary. Common signs of celiac disease include:

  • Constant (chronic) diarrhea or constipation
  • Weight loss
  • Gas
  • Pale, bad-smelling stool
  • Unexplained low blood count that makes you feel tired (anemia)
  • Tingling, numb feeling in the legs
  • Missed menstrual periods (linked to too much weight loss)
  • Infertility
  • Early osteoporosis or fractures
  • Teeth changing color or losing their enamel

Celiac disease can be painful. Some common pain symptoms are:

  • Stomach pain or swelling (bloating) that keeps coming back
  • Muscle cramps or bone pain
  • Pain in the joints
  • Painful, itchy skin rash

Children who have celiac disease may not grow at a normal rate.

You may have celiac disease but not have any symptoms. That is because the part of your small intestine that is not hurt can still take in enough nutrients. But you may still be at risk for problems of the disease.

Celiac disease symptoms may look like other health problems. Always see your healthcare provider to be sure.

How is celiac disease diagnosed?

Celiac disease can be hard to diagnose. Its symptoms may look like symptoms of other digestive problems such as:

  • Crohn's disease
  • Irritable bowel syndrome
  • Ulcerative colitis
  • Infected colon (diverticulitis)
  • Intestinal infections
  • Small intestinal bacterial overgrowth

To see if you have celiac disease, your healthcare provider will look at your past health and do a physical exam. You may also have tests such as:

  • Blood work. This is done to check the level of infection-fighting cells (antibodies) you have to gluten in your blood. People with celiac disease have higher than normal levels of these cells. Your immune system makes these cells to help fight things (such as gluten) that the body feels are a danger.
  • Biopsy. This is the most accurate way to tell if you have celiac disease. A tissue sample (biopsy) is taken from your small intestine to check for damage to the villi. To do this, a long, thin tube (endoscope) is placed in your mouth, down to your stomach and into your small intestine. A tissue sample is taken using tools passed through the tube. The sample is checked in a lab.

What is the treatment for celiac disease?

If you have celiac disease, you must stop eating gluten. Eating gluten will do more damage to your small intestine. Eliminating gluten is the only treatment for this disease. You must not eat gluten for the rest of your life.

In most cases, taking gluten out of your diet will stop your symptoms. And, any damage to your intestine will heal. It will also stop any more damage from happening.

Removing gluten from your diet can be difficult. This is because gluten can contaminate many foods. It can be found in condiments, salad dressings, and other unexpected places. For this reason, your healthcare provider may refer you to a dietitian who specializes in celiac disease.

After you stop eating foods with gluten, your symptoms will likely get better in a few days. Your small intestine should heal completely in 3 to 6 months. Your villi will be back and working again. If you are older, it may take up to 2 years for your body to heal.

Key points

  • Celiac disease is a digestive problem that hurts your small intestine. It stops your body from taking in nutrients from food.
  • You may have celiac disease if you are sensitive to gluten.
  • If you have celiac disease and eat foods with gluten, your immune system starts to hurt your small intestine.
  • Celiac disease is genetic. This means it can be passed from parent to child.
  • It is more common in people who are white, have type 1 diabetes, are obese, or have ancestors from Europe.
  • You may have celiac disease and not know it because you don’t have any symptoms.
  • It can be hard to diagnose. Its symptoms can look like symptoms of other digestive problems.
  • The only treatment is to stop eating gluten.
  • Once you stop eating gluten, your body will start to heal.

Next steps

Tips to help you get the most from a visit to your healthcare provider:
  • Before your visit, write down questions you want answered.
  • Bring someone with you to help you ask questions and remember what your provider tells you.
  • At the visit, write down the names of new medicines, treatments, or tests, and any new instructions your provider gives you.
  • If you have a follow-up appointment, write down the date, time, and purpose for that visit.
  • Know how you can contact your provider if you have questions.

Diet for celiac disease

Gluten-Free Diet for Celiac DiseaseMan in grocery store reading nutrition label on package.

Celiac disease means that you are sensitive to a protein called gluten. Gluten is found in certain grains. When you eat gluten, your immune system causes harm to your small intestines. The treatment for celiac disease is to stay away from foods and products that contain gluten. You will need to do this for the rest of your life. Resist the temptation to “cheat,” because even a small amount of gluten can cause symptoms to return. And it can harm your body. This sheet gives you the basics about a gluten-free diet. If you need help, a registered dietitian can teach you what foods and other products have gluten and how to keep away from them.

Always read labels!

Many foods may contain gluten, even if you think they don't. Get into the habit of reading ingredient labels before you eat.

Choosing foods

The most common source of gluten is wheat flour (this includes "white" flour). Wheat flour is used to make many baked goods, including breads, pastas, cereals, pastries, and pizza dough. Gluten is also found in many foods that you might not think would have it. You will need to read food labels to look for gluten in everything you eat. But your diet does not need to be boring. Many foods are naturally gluten-free. And many foods commonly made with wheat flour now come in gluten-free forms. 

Foods to stay away from

Foods you can eat

Bread, cereals, pasta, pastries, couscous, or pizza dough made with wheat flour (including white flour, farina, farro, emmer, durum, graham, and semolina)

Bread, cereals, pasta, pastries, or pizza dough made with rice flour, almond flour, beans, potatoes, and other gluten-free substitutes

Foods containing rye, barley (including malt), spelt, kamut, triticale, brewer's yeast, and bulgur

Foods containing corn, cassava, rice, amaranth, buckwheat, millet, quinoa, arrowroot, teff, soy, and tapioca

Processed meats

Fresh meats and seafood (beef, chicken, turkey, lamb, pork, fish, shellfish), beans, and tofu

Some dairy products with additives

Many plain dairy products

Many sauces, gravies, dressings, and condiments, including traditional soy sauce

Vinegar, oils, and gluten-free substitutes

Some granola bars and energy bars

Granola bars and energy bars labeled "gluten-free"

Some beers and spirits

Wine, and gluten-free beers and distilled spirits

Some soups

Gluten-free soups

Fruits and vegetables that are fried or breaded

Fresh fruits and vegetables

Many packaged foods

Packaged foods labeled "gluten-free"

Oats (check with your healthcare provider)

Gluten-free oats

Communion wafers

Gluten-free communion wafers

If you are exposed to gluten by accident

Staying gluten-free means always being aware. Even if you are very careful, mistakes can happen. The food you eat can't come into contact with gluten. Your meals must be made with utensils that have not touched foods that contain gluten. Shared knives, cutting boards, toasters, and storage containers are risks for gluten exposure. Shared condiments may have crumbs that contain gluten. At restaurants, parties, and other places where you eat food prepared by others, ask how the food was made. Gluten can also be found in some non-food items. Some medicines contain gluten. So do some vitamin supplements. Ask your pharmacist before taking a medicine or supplement. Also, some shampoos, lotions, toothpastes, makeup, lipsticks as well as lip gloss and lip balm, glues, soaps, and other products contain gluten. It can be possible to ingest some gluten when using these projects. This is called cross-contamination. For example, this can happen if you use a lotion that has gluten and then touch food you eat. Children's clay and similar products have gluten. Any adult or child with celiac disease should wash their hands after handling these.

Coping with gluten-free living

Living gluten-free can be hard. But it can be done. While there are many gluten-free foods now that you can buy, it is still a big change for many people. You may be upset that you can't eat your favorite foods, eat freely at restaurants, parties, or over the holidays. Household members may also be upset by the strict controls over food. If you face problems like these, think about joining a celiac disease support group. Support groups offer tips on how to make a gluten-free lifestyle easier on you and the people you live with. You can find ways to involve the people in your household. There are many ways to make gluten-free group meals. See “More Resources” below for help in finding a group.

Bring safe foods that you enjoy to parties and school or work events. This can help you avoid the urge to grab something you shouldn’t eat.

Following up with your healthcare provider

You should see your healthcare provider at least once a year for a checkup. A simple blood test can show if your celiac disease is under control. If you are having symptoms, your healthcare provider can help you find sources of gluten you may have missed.

More resources

To learn more about managing celiac disease, go to:

Saint Luke's GI Specialists

The gastroenterology specialists at Saint Luke's treat GI disorders including acid reflux, diverticulitis, celiac disease, and more.