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Overview

  • What is Celiac Disease?

    Celiac disease (CeD) is a long-term digestive disease with inflammation or damage to the small intestine. This damage makes it hard to take in nutrients from food. When a person with CeD eats food with gluten it causes this damage. Gluten is the name given to some of the proteins in wheat, barley, rye, and similar grains. Oats do not have gluten but may be packed in the same places as grains with gluten. Unless oats are marked as gluten-free they may not be safe for patients with CeD.

    CeD is an autoimmune disease. When food with gluten reaches the small intestine, the immune system reacts to gluten. This causes an inflammatory reaction in the wall of the intestine. The small intestine lining is covered by millions of villi (see figures 1–3). Villi are finger-like projections that increase the surface area of the intestine. They allow the small intestine to take in more nutrients. The small intestine is 16-23 feet (5-7 meters) long but with the villi the surface area is nearly 2700 square feet (250 square meters). This is about the size of a tennis court. The inflammation in CeD damages the villi and decreases food and water absorption. Not eating gluten lowers the inflammation. Taking gluten out of the diet lets the intestine heal. Not every person who eats gluten will get CeD. The time when a patient develops CeD can vary.

    Figure 1. Normal Activity Figure 2. Normal VilliFigure 3. Damaged Villi
    © 1995 Mayo Clinic© 2010 Mayo Clinic.
  • How common is Celiac Disease?

    In the U.S., about 1 out of every 100 people may have CeD. But only 1 out of 5 people with celiac disease may be diagnosed and know that they have it. Some patients may have no symptoms or only mild symptoms. There may be as many as 3-4 million people in the United States and 60 million in the world with CeD.

  • Who does Celiac Disease affect?

    CeD can happen at any age or stage in life. It affects people across the globe of all colors and backgrounds. Infants and children can have celiac disease, but many patients are diagnosed as adults. Women are more likely to be diagnosed with celiac disease than men. People with type 1 diabetes, thyroid problems, or relatives with CeD are at greater risk for it.

Symptoms

  • What are the main symptoms of Celiac Disease?

    There are many symptoms or signs of celiac disease. They are not the same for everyone. Symptoms are highly variable. Some people have mild inflammation with few symptoms. Even though they may feel well, there is still damage to the intestine. Other people have more severe inflammation, which causes symptoms bad enough to lead them to visit their doctor. Sometimes people will not have any symptoms at all but their small intestine is badly inflamed.

    The most common symptoms and signs (consequences) are: Other symptoms and signs (consequences) are:
    • Abdominal pains
    • Bloating and gas
    • Diarrhea
    • Stools that may float
    • Weight loss
    • Poor growth or weight loss in children
    • Anemia (low blood count)
  • Feeling weak
  • Fatigue
  • Low vitamin levels—especially iron, calcium and folate
  • Bone and joint pains
  • Osteoporosis (bone thinning)
  • An itchy skin rash that lasts
  • Infertility or reproductive difficulties
  • Neurological problems(neuropathy)
  • Liver enzyme abnormalities
    		•

    Someone with celiac disease can have any mix of the above symptoms. They may have just one or many symptoms. Different people with celiac disease may have very different symptoms. Celiac disease can act like irritable bowel syndrome (IBS). Since some celiac symptoms mimic IBS some people are misdiagnosed. It is now recommended that all patients with IBS symptoms (especially abdominal pain and diarrhea) are tested for celiac disease.

Screening/Diagnosis

  • How is Celiac Disease diagnosed?

    Remember, most patients with abdominal pain, bloating or diarrhea do not have celiac disease. There are two tests to look for celiac disease: blood test and biopsy. It is best to do both together to confirm the diagnosis.

    Blood tests:
    Specific antibody blood tests are used to diagnose CeD. These blood tests are also used for screening or to test people at risk for CeD but have no symptoms. The 2 most accurate tests are the endomysial antibody and tissue transglutaminase antibody tests. Other tests, such as tests for deamidated gliadin peptide antibodies, may be used, but are not as accurate. That is because they can be abnormal in healthy patients without CeD or in people with other digestive problems. Allergy tests will not find celiac disease. Tests on saliva (spit) or stool (poop) for antibodies are not as good as blood-based tests. Genetic tests are available to assist doctors when the blood tests or biopsy results are unclear. They might also be used when patients continue to have symptoms after removing gluten. However, simply having the genes for CeD does not mean that the patient will get CeD. It only means that it is possible. Not having the genes is a very good way to rule out celiac disease. If the genes are not there, the autoimmune reaction cannot happen.

    Biopsy:
    This looks at damage to the intestine lining. Establishing a firm diagnosis of CeD requires taking a small tissue sample (biopsy of the small intestine). This is done using endoscopy. Endoscopy uses a thin, flexible tube with a light and a camera on the end. It is put in through the mouth, down into the esophagus, stomach, and small intestine. Tiny samples are taken from the wall of the small intestine. These are put under a microscope to look for changes of CeD. Medications to make the you sleepy and comfortable are given before the endoscopy.
    When the doctor thinks that celiac disease is possible, but not very likely, then you do blood tests alone. If the blood tests are normal, other tests may not be needed. Sometimes the doctor strongly suspects celiac disease, and will request an endoscopy and biopsy. All tests for celiac disease, except for genetic tests, must be done while eating gluten. Patients who are concerned they may have celiac disease should not limit gluten in their diet before testing or seeing a doctor. No longer eating gluten can cause false negative test results.

Treatment

  • How is Celiac Disease treated?

    To treat celiac disease you must stop eating gluten. Gluten is what causes inflammation in the small intestine. For now, there is no treatment to change the way your body reacts to gluten. When this is taken out of the diet, the intestine will heal and return to normal. Dietitians with expertise in gluten-free diets are important. They educate patients on finding gluten and avoiding it. Medications are not normally used to treat CeD except when patients do not respond to a strict gluten-free diet. There are many CeD support groups available for patients and family members.

    Grains With Gluten
    The following grains contain Gluten and are NOT ALLOWED IN ANY FORM:
    • Barley
    • Einkorn
    • Kamut
    • Rye
    • Spelt
    • Triticale
    • Wheat, including bulgur, farro, wheatberry, durum, and others
    Frequently overlooked foods that often contain gluten:
    • Basting liquid
    • Pastas
    • Breading
    • Imitation bacon
    • Broth
    • Imitation seafood
    • Coating mixes
    • Marinades
    • Commercial cereals
    • Processed meats
    • Communion wafers
    • Sauces
    • Croutons
    • Stuffings

    A gluten-free diet requires some lifestyle changes. The key to understanding it is label reading. If a food has unclear or unsafe ingredients, avoid it. Instead find a similar product that you know is gluten-free. Foods containing the following ingredients are questionable. These should not be consumed unless it is verified they do not have gluten. These products are listed below.

    Questionable to Contain Gluten

    • Modified food starch
    • Hydrolyzed vegetable protein (HVP)
    • Hydrolyzed plant protein (HPP)
    • Malt vinegar
    • Soy sauce or soy sauce solids
    • Brown rice syrup
    • Dextrin
    • Textured vegetable protein (TVP)
    • Vegetable gum

    Gluten-Free Options
    • Bean
    • Quinoa
    • Buckwheat
    • Rice
    • Corn
    • Sorghum
    • Coconut leaves
    • Millet
    • Soy
    • Nut Flours
    • Tapioca
    • Potato
    • Tef
    *Foods labeled as gluten free must have less than 20 parts per million of gluten.*

    Medications may also contain gluten ingredients. Gluten might be found in both prescription and over-the-counter medications. It is key to be sure that any medications you take are gluten free.

  • For how long do you remain on the gluten-free diet?

    Once a diagnosis of CeD is made, you need to stay on the gluten-free diet for the rest of your life. This may be difficult at first. It is a big change. Many patients adapt quite well over time. Dietitians will assist in the dietary transition.

  • Is there any other way of treating Celiac Disease?

    No. There is no other treatment currently available. All patients with CeD must remain on a strict gluten-free diet. Medications are not normally needed. Supplemental vitamins or calcium may sometimes be suggested. Patients with CeD should check with their doctor about any supplements. Rarely steroids or other drugs are used to suppress the immune system. These are only used in the most severe of cases that do not improve on the gluten-free diet.

Complications

  • What will happen if you don't adhere to the gluten-free diet?

    Patients with CeD who do not follow the gluten-free diet usually continue to have symptoms. They may keep suffering from abdominal pain, bloating, gas and diarrhea. These patients are also at higher risk for developing complications of CeD such as cancer of the small intestine and esophagus, and narrowing in the intestine due to inflammation.

  • What are other complications of Celiac Disease?

    Generally, complications of CeD can be avoided by eating a strict gluten-free diet. Most patients have an excellent prognosis because the damage can be undone by avoiding gluten. Other complications include fatigue, poor growth, decreased adult height, osteoporosis, bone pain, joint pain, difficulty having children, narrowing of the intestine, cancer of the esophagus (food tube) and small intestine, lymphoma (another type of cancer) and neuropathy (unsteady walking and confusion which may be severe). Patients may have low levels of certain vitamins (iron, vitamin B12, folate, zinc, copper, vitamin D and calcium). It is a good idea to check levels, especially in adults. Also, a test for bone density is done, when an adult is diagnosed with CeD.

  • How should celiac disease be followed up?

    It is important that the symptoms get better. If they do not, then the patient should contact their doctor. Annual follow-up should include a blood test to follow the celiac activity. Patients with ongoing or recurrent symptoms need to be rebiopsied with another endoscopy. Some specialists will repeat the biopsy to make sure that healing has happened, even if the symptoms are gone.

  • What does it mean for my family members?

    Immediate family members (blood relatives), like brothers, sisters, parents and children should be tested for celiac disease. Even if they appear healthy and have no symptoms, testing is suggested as celiac disease is a genetic disease and may be hidden.

Author(s) and Publication Date(s)

Connor G. Loftus, MD, and Joseph A. Murray, MD, FACG, Division of Gastroenterology and Hepatology, Mayo Clinic, Rochester, MN – Published June 2004, Updated July 2010, Updated June 2016.

Patrick McCabe, MD, Gastroenterology Consultants, Reno, NV – Updated April 2021.

Claire Jansson-Knodell, MD, Celiac Disease Program, Cleveland Clinic, Cleveland, OH – Updated April 2026.

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