Celiac disease (also called celiac sprue, nontropical sprue, and gluten-sensitive enteropathy) is an autoimmune disease affecting the digestive tract. When people with celiac disease eat food with gluten—a type of protein found in wheat, rye, barley, and oats—it provokes an immune reaction that causes flattening and damage to the small protrusions (villi) in the small intestine that absorb nutrients.
The resulting smooth surface in the lining of the intestine inhibits the ability to digest and absorb nutrients in many, if not all, foods. As a result, people with untreated celiac disease can suffer from malnutrition and a host of symptoms caused by malnutrition. Thus, celiac disease is also classified as a disease of malabsorption.
The Digestive Tract
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It is not known exactly why people with celiac disease react to gluten-containing foods in such a negative manner. If you have celiac disease, chances are that approximately 10% of your immediate family does, too. The disease can occur at any age. In some cases, symptoms of the disease do not emerge until after some form of trigger. Triggers can include an infection, pregnancy, severe stress, surgery, or physical injury. To prevent symptoms, a person with celiac disease must avoid foods containing gluten.
What are the risk factors for celiac disease?What are the symptoms of celiac disease?How is celiac disease diagnosed?What are the treatments for celiac disease ? Are there screening tests for celiac disease?How can I reduce my risk of celiac disease?What questions should I ask my doctor?What is it like to live with celiac disease?Where can I get more information about celiac disease?
American Academy of Family Physicians website. Available at: http://www.aafp.org/ . Accessed March 9, 2006.
Berkow R. The Merck Manual of Medical Information. 17th ed. New York, NY: Simon and Schuster, Inc; 2000.
Collin P, Thorell L, Kaukinen K, Maki M. The safe threshold for gluten contamination in gluten-free products. Can trace amounts be accepted in the treatment of coeliac disease? Aliment Pharmacol Ther. 2004;19:1277.
Mayo Foundation for Medical Education and Researchwebsite. Available at: http://www.mayo.edu/ . Accessed March 9, 2006.
National Institute of Diabetes and Digestive and Kidney Diseaseswebsite. Available at: http://www.niddk.nih.gov/ . Accessed March 9, 2006.
Rostom, A, Dube, C, Cranney, A, et al. Celiac disease. Summary, evidence report/technology assessment No 104. Rockville, MD: Agency for Healthcare Research and Quality; 2004.
Last reviewed September 2012 by Daus Mahnke, MD
Copyright © 2010 EBSCO Publishing All rights reserved.
Your doctor will ask about your symptoms and medical history and perform a physical exam. Because the symptoms of celiac disease are often very similar to those of other conditions, it can be difficult to obtain an accurate diagnosis early on. However, early diagnosis of celiac disease is very important because the earlier you start the gluten-free diet, the less likely you are to have advanced damage to your intestinal tract. Maintaining a gluten-free diet is very important to help prevent complications caused by celiac disease.
Your doctor may suspect celiac disease:
If celiac disease is suspected, tests will be done to confirm the diagnosis. Tests include:
Blood Tests —a blood sample is taken to check for:
Endoscopy —a thin, lighted tube inserted down the throat to examine and biopsy the intestine
Biopsy —Performed via an endoscope to confirm the diagnosis of celiac disease. It requires the removal of a small sample of tissue from the small intestine during endoscopy to test for flattened and damaged villi. If the biopsy shows signs of celiac sprue, you may be put on a gluten-free diet for about 3-6 months. After that time, a second biopsy may be done to look for signs of improvement, such as positive changes in the villi of the small intestine.
As told to Nancy Hall
Scott, 35, was diagnosed with celiac disease a few years ago. After making the necessary dietary changes, Scott has been feeling a lot better. Now he is an active supporter of and advocate for others with celiac disease.
What was your first sign that something was wrong? What symptoms did you experience?
My symptoms, which occurred off and on over a period of several years, included diarrhea, stomach pain (especially in the middle-right section while I was sleeping), and abdominal bloating. At first, I thought it was just lactose intolerance.
What was the diagnosis experience like?
I spent a lot of years and money, went through many tests and got any number of misdiagnoses before finding out about celiac disease. I was told I had lactose intolerance, irritable bowel syndrome, an ulcer, kidney problems, and was even told that I could have a strange cancer or a rare form of leukemia. I had CT scans, thyroid tests, screens for bacterial infections and parasites, and gallbladder tests. When I came across a reference to celiac disease in a book on nutritional disorders, I told my doctor, and was finally diagnosed via a biopsy of my small intestine (which was not as bad as it sounds). There are also several blood tests, one of which can give you an answer within 10 minutes.
What was your initial and then longer-term reaction to the diagnosis?
My first reaction was relief. It was great just to have a definitive diagnosis. Sometimes I get frustrated, like when I heard that in Europe people are routinely screened for celiac in time to prevent the kinds of discomfort and frustration that I experienced. Had I not been diagnosed when I was, I would have begun to experience nutritional disorders as my body lost its ability to absorb important nutrients like iron, calcium, and magnesium.
How do you manage celiac disease?
With dietary changes. Celiac disease is an autoimmune disorder in which the body is unable to process gluten—a protein substance found in wheat and most other grains. All I have to do is cut gluten out of my diet altogether.
Did you have to make any lifestyle or dietary changes in response to celiac disease?
Wow—completely. [Gluten is] also in food additives, thickeners and binders, modified food starch, hydrolized vegetable protein, and many other things. Managing the illness is much more complicated than just reading labels. In the US, gluten is not required to be listed as an ingredient—in Europe a “gluten-free” symbol appears on the packaging of safe foods.
Going to a restaurant can be a real adventure. My wife and I have found a handful of sympathetic restaurants that will let me, for instance, bring my own gluten-free bun if I order a hamburger, or gluten-free soy sauce if we’re eating Asian food. But the first few years were frustrating and I often ended up feeling angry when people working in a restaurant knew so little about what was in the food they were serving.
Did you seek any type of emotional support?
My wife has been wonderful. She’s Taiwanese, and in her culture they don’t eat much dairy or wheat anyway, so changing our diet at home has been easier than it otherwise might have been. And our friends have been very adaptive about having us over for dinner. I found a lot of information online, and actually started a web site to try to help people find the information it took me so long to gather myself.
Does celiac disease have an impact on your family?
Yes, some, but as I said, my wife is Taiwanese, and in her culture they don’t eat much wheat anyway, which has made it easier to make our diet safe for me. Our son is at some risk, since the illness has a genetic component, but at 14 months we haven’t seen any sign of problems.
What advice would you give to anyone living with celiac disease?
It’s normal to get depressed when you think about all the wonderful things you can’t eat any more, but it’s just a matter of making that mental adjustment. Also, be careful about what you read on the Internet—most of the information out there is really helpful, but not all of it is as accurate as it should be.
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.
There are no guidelines for preventing celiac disease. Ask your doctor about a screening test for you and your children if celiac disease runs in your family.
American Gastroenterological Association (AGA)
Address:National Office4930 Del RayAvenueBethesda, MD 20814
Description of Services Provided:This site covers all gastrointestinal conditions, including celiac disease. Using the search option, you'll find the latest research news on this disease.
Celiac Disease Foundation (CDF)
Address:13251 Ventura Blvd., Suite 1Studio City, CA 91604-1838
Description of Services Provided:The CDF provides support, information, and assistance to people affected by celiac disease and dermatitis herpetiformis (CD/DH). The CDF also works closely with healthcare professionals and pharmaceutical and medical industries.
Celiac Sprue Association
Address:PO Box 31700Omaha, NE 68131-0700
Phone:877 CSA-4-CSA (US toll free)(402) 558-0600
Description of Services Provided:At this site, you'll find a network of chapters, resource units, and contact persons that represent a local support system for people following the gluten-free diet. You can also read through a series of educational materials covering current information and research on celiac disease.
Canadian Celiac Association
Address:5170 Dixie Road suite 204Mississauga, ON L4W 1 E3
Description of Services Provided:The Canadian Celiac Association is a national organization dedicated to providing services and support to persons with celiac disease and dermatitis herpetiformis through programs of awareness, advocacy, education and research.
Last reviewed September 2012 by Brian Randall
Please be aware that this information is provided to supplement the care provided by your physician. It is neither intended nor implied to be a substitute for professional medical advice. CALL YOUR HEALTHCARE PROVIDER IMMEDIATELY IF YOU THINK YOU MAY HAVE A MEDICAL EMERGENCY. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with any questions you may have regarding a medical condition.
A risk factor is something that increases your likelihood of getting a disease or condition.
It is possible to develop celiac disease with or without the risk factors listed below. However, the more risk factors you have, the greater your likelihood of developing celiac disease. If you have a number of risk factors, ask your healthcare provider what you can do to reduce your risk.
Your chances of having celiac disease are greater if the condition runs in your immediate family. It is estimated that close relatives of people with celiac disease have a 5%-10% chance of developing the disease.
Celiac disease tends to be more common in people who are of European descent.
If you have another autoimmune disorder, you are at greater risk of developing celiac disease. These disorders include:
The purpose of screening is early diagnosis and treatment. Screening tests are usually administered to people without current symptoms, but who may be at high risk for certain diseases or conditions.
In the United States, children are generally not screened for celiac disease. In countries where celiac disease is more common, children are routinely screened for the disease. For example, in Italy, children are screened for celiac disease by age six. The Mayo Foundation for Medical Education and Research recommends the following:
Screening for celiac disease involves testing for the antibodies to gluten. This is done by testing a blood sample for three specific antibodies: antigliadin, anti-endomysium, and antireticulin.
There is a test available that may eventually become the test used to screen large populations. It is a blood test that detects an antigen called tissue transglutaminase (tTG).
Symptoms of celiac disease can vary in type and/or severity. Symptoms can start as soon as gluten is introduced into the diet, or they may not develop until adulthood. Children often have different symptoms than adults. Symptoms may not develop (or may be mild) if a large section of the intestine is undamaged. Malnutrition may produce the first signs of the condition, which are often the most serious. Some people with celiac disease have no symptoms of it. Signs and symptoms may include:
You have a unique medical history. Therefore, it is essential to talk with your doctor about your personal risk factors and/or experience with celiac disease. By talking openly and regularly with your doctor, you can take an active role in your care.
General Tips for Gathering Information
Here are some tips that will make it easier for you to talk to your doctor:
Specific Questions to Ask Your Doctor
About Celiac Disease
About Your Risk of Developing Celiac Disease
About Treatment Options
About Lifestyle Changes
There is no cure for celiac disease. The only effective treatment is to control symptoms and prevent complications by eating a gluten-free diet. Medication is used to help control intestinal inflammation in severe cases. If you develop nutritional deficiencies or lose bone mass, other treatment may be necessary.
Treatment involves the following:
Lifestyle changes (a gluten-free diet)MedicationsOther treatments
At this time, there are no surgical treatments for celiac disease.
The Merck Manual of Medical Information, 17th ed. Simon and Schuster, Inc.; 2000.
The Merck Manual of Medical Information. 17th ed. Simon and Schuster, Inc.; 2000.
American Gastroenterological Associationwebsite. Available at: http://www.gastro.org . Accessed March 9, 2006.
American Gastroenterologic Associationwebsite. Available at: http://www.gastro.org . Accessed March 9, 2006.