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Celiac Disease

Topic Overview

What is celiac disease?

Celiac disease is a problem some people have with foods that contain gluten. Gluten is a type of protein. It's found in the grains wheat, barley, rye, and triticale (a wheat-rye cross).

When you have this disease and you eat food with gluten in it, the gluten triggers an immune response that is not normal. This damages the inside of your small intestine so that it can't do a good job of absorbing nutrients from your food.

It's important to get treatment, because celiac disease can:

In children, celiac disease can slow growth and weaken bones. If it isn't treated, your child can get very sick. Call a doctor if your child is losing a lot of weight, has diarrhea, or feels weak and tired for many days for no reason.

What causes celiac disease?

Doctors don't really know what causes the disease. Having certain genes can increase your chance of getting it. You're more likely to have these genes and get celiac disease if a close family member has the disease.

What are the symptoms?

Symptoms of celiac disease include:

  • Gas and bloating.
  • Changes in bowel movements.
  • Weight loss.
  • Feeling very tired.
  • Weakness.

These symptoms can be very mild.

Some people vomit after they eat gluten. This is more likely to happen in children than in adults.

How is celiac disease diagnosed?

Your doctor will ask questions about your symptoms and do a physical exam.

You may have blood tests to see if you have certain antibodies that could mean you have the disease.

To make sure you have celiac disease, you will probably have an endoscopy. In this test, a doctor uses a thin, lighted tube to look at the inside of your small intestine. Your doctor can also take small samples of tissue to be tested in a lab. This is called a biopsy.

Often celiac disease is mistaken for another problem such as food intolerance or irritable bowel syndrome. You may be treated for one of these problems first.

After your celiac disease diagnosis, your doctor may do more tests, such as blood tests to check for anemia. You may also have a bone density exam. These tests will help your doctor find out if you have other problems, such as osteoporosis, that can arise when you have celiac disease.

How is it treated?

To get and stay well, you need to avoid all foods that have gluten. For many people, this means changing everything about the way they eat. This can be challenging. For help, work with a dietitian who has experience with gluten-free diets. Together you can find foods you like that don't have gluten.

Avoid all foods made with wheat, rye, barley, or triticale. Don't drink any beer or ale.

You can still eat eggs, meat, fish, fruit, and vegetables. Flours and starches made from rice, corn, buckwheat, potatoes, and soybeans are also okay. Within 2 weeks after starting a gluten-free eating plan, most people find that their symptoms start to get better.

For a short time after your treatment starts, you might also need to stop drinking cow's milk and foods made with it. Most of the time, but not always, people can have these foods again after their intestine has healed.

Some foods that are labeled "wheat-free" may still have gluten. Gluten can be in things you may not expect, like medicine, vitamins, and lipstick. Be sure to read labels.

Watch out for the following phrases. They could mean that a product contains gluten:

  • "Modified food starch."
  • "Hydrolyzed vegetable protein."

Frequently Asked Questions

Learning about celiac disease:

Being diagnosed:

Getting treatment:

Ongoing concerns:

Living with celiac disease:

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  Celiac Disease: Eating a Gluten-Free Diet

Cause

Although the exact cause of celiac disease isn't known, having certain genes increases your risk. You are more likely to have these genes if you have a first-degree relative (mother, father, brother, sister, son, or daughter) who has celiac disease.

Environmental factors, such as infections, may trigger changes in the small intestine of a person with these genes. Then, eating foods that contain gluten can trigger an abnormal immune system response. Over time, this response can cause digestion and absorption problems.

Symptoms

Symptoms of celiac disease vary widely and may come and go. They may be very mild and go completely unnoticed, or they may be severe and impact daily life.

Symptoms include:

  • Gas, abdominal swelling, and bloating. These symptoms result from a failure of the small intestine to absorb nutrients from food. You may also have mild stomach pain, but it usually isn't severe.
  • Abnormal stools. Diarrhea or bulky, loose (or watery), pale, frothy, and foul-smelling stools often occur. The stools may contain a large amount of fat and may stick to the sides of the toilet bowl, making them hard to flush. Children and adults often have the same types of symptoms. But intestinal problems, such as constipation, are more likely to occur in children.
  • Weight loss. Adults and children may have unexplained weight loss despite having a normal appetite. Younger children may fail to gain weight and grow as expected. This is called failure to thrive.
  • Fatigue and weakness. Celiac disease can cause a general lack of energy and strength. Sometimes poor nutrient absorption causes fatigue and weakness.
  • Vomiting. Some people may get sick after eating gluten. Children are more likely than adults to have this reaction.

If not treated, celiac disease can lead to other problems. You may have problems with memory and concentration. Children may be more irritable. Adults may show signs of depression.

Symptoms of celiac disease also occur with some other conditions.

What Happens

Celiac disease is a lifelong (chronic) condition that occurs when gluten triggers an abnormal immune system response that damages the small intestine.

Your small intestine is lined with tiny, finger-shaped tissues called villi. The villi create a large surface that absorbs vitamins, sugars, and other nutrients as food passes through the small intestine. When a person who has celiac disease eats gluten, the villi flatten out and the intestinal lining becomes damaged. This decreases the area that can absorb nutrients.

In some cases, this inability to absorb nutrients may be bad enough to stunt growth and weaken bones. The loss of vitamins and minerals may lead to other problems, such as anemia, osteoporosis, or growth delays in children.

People who have celiac disease may have periods when their symptoms seem worse. Or symptoms may sometimes not be noticed at all. In adults, symptoms may occur at any age but most commonly occur during the 20s, 30s, and 40s.

Sometimes a person who has celiac disease doesn't have symptoms after eating foods that contain gluten. But damage to the small intestine is still occurring.

Within 2 weeks after starting a gluten-free diet, most people with celiac disease find that their symptoms improve. Symptoms should completely disappear within 3 months. But it takes up to 6 months or longer on a gluten-free diet for the villi to return to normal.

Staying on a gluten-free diet usually keeps symptoms from returning and lowers the risk for complications.

Refractory sprue

In rare cases, a gluten-free diet doesn't help. Some people get better for a while, but their symptoms come back even though they are still eating a gluten-free diet. This condition is called refractory sprue.

In these cases, corticosteroids or other medicines that change the immune system response may be used to control symptoms. People who do not improve on a gluten-free diet should be tested for other conditions, including T-cell lymphoma.

Celiac disease in children

In some children, symptoms begin shortly after cereal is introduced into the diet, usually after 6 months of age.

Symptoms of the disease are controlled by adopting a gluten-free diet. But a child needs to be watched for:

  • Delayed growth. Children with celiac disease don't absorb needed nutrients if they eat gluten. This may result in delayed growth if gluten is eaten regularly over a long period.
  • Nutritional deficiencies. Eating gluten also can lead to an imbalance of chemicals, minerals, and vitamins. These deficiencies should reverse with a gluten-free diet. But vitamins, iron, or calcium supplements are sometimes needed.
  • Tumors. As children who have celiac disease grow into adulthood, they may be at a slightly increased risk for getting cancer (lymphoma). Studies have found that following a gluten-free diet lowers the risk for lymphoma in adults.1

Children who have untreated celiac disease can become very ill . They may need to go to the hospital for treatment with fluids and medicine to restore nutrients. These treatments are usually short-term. Most children recover completely.

What Increases Your Risk

The risk for celiac disease may run in the family. If a close relative (parent, child, or sibling) has it, your chances of having it are higher.

When a person has inherited this risk, an infection or something else in the environment can trigger changes in the small intestine and cause celiac disease.

Also, celiac disease is more common in people who have:

  • Type 1 diabetes.
  • Autoimmune thyroid disease.
  • Down syndrome.
  • Sjögren's syndrome.
  • Selective antibody deficiency (immunoglobulin A [IgA] deficiency).

When To Call a Doctor

Call a doctor if you or your child has symptoms of celiac disease, such as:

  • Unexpected weight loss.
  • Diarrhea that lasts longer than 1 to 2 weeks.
  • Failure of a child to grow or gain weight as expected.
  • Unusual fatigue or mood changes, especially if these last more than a week and aren't related to any other illness, such as the flu.

If you or your child has been diagnosed with celiac disease, call a doctor if:

  • Symptoms continue, come back, or get worse.

Watchful waiting

If you think that you or your child may have celiac disease, watchful waiting is appropriate if mild symptoms of diarrhea or vomiting last only for a few days. Talk with a doctor if your child continues to have diarrhea and doesn't seem to be gaining weight as expected even though he or she has a good appetite.

Who to see

Health professionals who may evaluate symptoms of celiac disease in adults or children include:

A doctor who specializes in problems with the digestive system (gastroenterologist) should be consulted to confirm the diagnosis with a small intestine biopsy. In addition, a dietitian can help you plan and stay on a gluten-free diet.

To prepare for your appointment, see the topic Making the Most of Your Appointment.

Exams and Tests

A medical history, physical exam, and lab tests often point to celiac disease. The diagnosis is confirmed with a small intestine biopsy collected during an endoscopy, where a small tube is guided down a person's throat to the small intestine.

Tests for celiac disease should be done when you or your child is still eating a diet that includes gluten. If you have already started a gluten-free diet before these tests are done, the doctor may suggest that you or your child eat a certain amount of gluten before the tests.

Blood antibody tests

Celiac disease triggers the immune system to produce certain antibodies. Blood tests that find and measure these antibodies include:

  • IgAtTG: Immunoglobulin A (IgA) anti-tissue transglutaminase (tTG) antibody.
  • IgAEMA: Immunoglobulin A (IgA) antiendomysial antibody (EMA).

Endoscopy

A biopsy taken during an upper gastrointestinal endoscopy may be done to confirm celiac disease after antibodies have been found. Sometimes a biopsy detects celiac disease when a person is being tested for another condition.

If the biopsy shows signs of celiac disease (such as abnormal villi and inflammation in the small intestine), a gluten-free diet will be recommended.

A diagnosis of celiac disease is confirmed if the diet makes symptoms go away and if antibody tests become normal.

Other tests

Other tests that may be done include:

Tests to look for other conditions and diseases may be needed if a diagnosis of celiac disease is suspected but symptoms don't improve with a gluten-free diet.

You can prepare your child for these tests. Knowing why tests are being done and what to expect can help make the tests less scary.

Treatment Overview

The treatment for celiac disease is a gluten-free diet. Eating even the smallest amount of gluten can cause symptoms such as weight loss and diarrhea.

A gluten-free diet means:

  • Avoiding all foods with wheat, barley, rye, triticale (a wheat-rye cross), or oats. Oats may later be gradually reintroduced into the diet.
  • Avoiding beer unless it is gluten-free. Beers with and without alcohol, including lagers, ales, and stouts, contain gluten unless the label specifically says that the beer is gluten-free.
  • Eating meals that include rice, corn, millet, and buckwheat.

You may also be advised to temporarily avoid milk or milk products until your intestine heals. Then you may be able to gradually reintroduce them.

For more information about following a gluten-free diet, see Home Treatment.

If you have nutritional deficiencies, you may need other treatments, such as vitamin, iron, and calcium supplements.

Treatment for complications varies depending on the specific problems and their severity. For example, some adults may require long-term treatment for complications, such as osteoporosis.

When a gluten-free diet doesn't seem to help

If it seems that you or your child is not getting better, you may need:

  • A diet evaluation to ensure that it is gluten-free. Your doctor or dietitian can help you find out if you are eating foods with hidden gluten. Older children and teens may need to be reminded about the importance of staying with the diet.
  • Testing for other diseases or conditions, such as irritable bowel syndrome, if no gluten is detected in your diet.
  • Reevaluation of your original upper endoscopy and biopsy to ensure the accuracy of diagnosis.
  • Oral steroids (in very rare cases). Experts disagree about using steroid medicines to treat people who have celiac disease and do not get better on a gluten-free diet.

Prevention

Celiac disease can't be prevented.

If you already have celiac disease, you can prevent symptoms—and damage to your small intestine—by eating a gluten-free diet.

Click here to view an Actionset. Celiac Disease: Eating a Gluten-Free Diet

Some adults with celiac disease have a poorly functioning or nonfunctional spleen, which is a risk factor for developing a pneumococcal infection. For this reason, your doctor may recommend that you get immunized with the pneumococcal vaccine.

Home Treatment

Having celiac disease means that you will need to follow a gluten-free diet for the rest of your life. This can be hard to face, especially if you don't have symptoms.

With time and effort, you'll be able to change your eating habits and stay healthy. These tips may help:

  • Get lots of advice. Dietitians, other health experts, and celiac disease support groups can give you lots of help. Try keeping a food diary until you are more familiar with planning meals without gluten.
  • Watch out for hidden gluten. Read labels on prepared or processed food carefully. For example, "hydrolyzed vegetable protein" may come from wheat and contain gluten.
  • Prevent contamination. It's best to keep gluten-free foods in a separate cupboard. Make sure your kitchen counters, utensils, and appliances are clean and free of gluten before you use them. Use a separate toaster for gluten-free breads.
  • Talk to waiters. When eating out, let your server know that you have special dietary needs.
  • Check your (or your child's) weight weekly to make sure you're getting enough nutrients.
  • Eat plenty of fruits and vegetables to avoid constipation. If necessary, use gluten-free commercial fiber preparations, such as those that contain rice bran.
Click here to view an Actionset. Celiac Disease: Eating a Gluten-Free Diet

Children and teens

Following a special diet may be especially hard for children and teens, who often don't want to feel different from their friends. Also, teens seem to have fewer symptoms than younger children after eating gluten.

Here are some things you can do to help:

  • Contact your local hospital, dietitian, or doctor for information about support groups in your area. Most people find these groups helpful for discovering ways to help them deal with their condition.
  • Work with your child's school. Talk to teachers or school nurses about everyday strategies. Find out what other kids are taking for lunch. For example, if other kids are carrying cold lunches, find ways to pack similar gluten-free cold lunches. If your child prefers a hot lunch, work with the school cafeteria to see whether gluten-free choices are available. The more "normal" the diet can seem, the better the chances that your child will follow it.
  • Let your child have some responsibility. With younger children, make a game out of choosing foods that are gluten-free. Allow older children to choose gluten-free foods. Helping your teen follow a gluten-free diet usually includes recognizing his or her increasing need for independence.
  • Deal with slip-ups. Understand that food can be a part of socializing and fitting in. Your child may accidentally (or on purpose) eat some foods that contain gluten. If your child experiences symptoms after eating gluten, focus attention on how he or she feels physically.
  • Plan ahead. Before social events—for example, slumber parties—where foods containing gluten will likely be served, remind your child about what happens when he or she eats gluten. Try to plan ahead for these occasions by talking to friends' parents or preparing something gluten-free that the group can eat.

If symptoms return

If symptoms of celiac disease return after your child or you were symptom-free while following a gluten-free diet, it usually means that foods containing gluten were eaten. Here are some tips:

  • Try to write down what your child eats. Keep detailed notes about every meal and snack.
  • Check food labels, looking closely for ingredients that may be sources of hidden gluten. Your local library or bookstore should have resources that can help you identify potential sources of hidden gluten.
  • If your child's symptoms return, be sure to ask detailed questions about what he or she has recently eaten away from home.

Call your doctor if you are confident that your or your child's diet is gluten-free but symptoms have returned or continue.

Medications

Medicine is only needed if you or your child becomes seriously ill with celiac disease or if complications develop. Some complications, such as delayed growth, can't be treated with medicine.

Your doctor may recommend taking a vitamin supplement to make sure you get enough vitamins and minerals.

Some doctors prescribe steroid medicines to ease inflammation in the intestine and to help it absorb nutrients better. But not all doctors agree on this.

If other possible illnesses have been ruled out, steroids or other medicines that change the immune system response may be used to treat refractory sprue that doesn't respond to a gluten-free diet.

Other Treatment

Counseling

Speaking with a counselor, a psychologist, or a psychiatrist may help you cope with celiac disease by changing certain thoughts, feelings, or behaviors.

Nutritional counseling from a registered dietitian who is familiar with celiac disease can help you create a practical and healthy gluten-free diet.

Other Places To Get Help

Organizations

Celiac Disease Foundation (CDF)
13251 Ventura Boulevard
Suite 1
Studio City, CA  91604
Phone: (818) 990-2354
Fax: (818) 990-2379
Web Address: www.celiac.org
 

CDF provides support, information, and assistance to people affected by celiac disease and dermatitis herpetiformis. The Web site has information about diet and lifestyle changes, including a quick-start diet guide and lists of gluten-free resources. There is also a Kid's Korner with information especially for children and teens who have celiac disease and for their parents.


Celiac Sprue Association
P.O. Box 31700
Omaha, NE  68131-0700
Phone: 1-877-CSA-4CSA (1-877-272-4272) toll-free
(402) 558-0600
Email: celiacs@csaceliacs.org
Web Address: www.csaceliacs.org
 

This nonprofit, member-based organization has information for people who have celiac disease and for their families, such as ways they can incorporate a gluten-free diet into their daily lives.


GastroKids
P.O. Box 6
Flourtown, PA  19031
Phone: (215) 233-0808
Email: spghan@naspghan.org
Web Address: www.gastrokids.org
 

The GastroKids website helps parents, children, and teens learn more about reflux and GERD, celiac disease, inflammatory bowel disease, and other digestive disorders in children. This website is part of the NASPGHAN Foundation(North American Society for Pediatric Gastroenterology, Hepatology and Nutrition).


Gluten Intolerance Group of North America (GIG)
31214 124th Avenue SE
Auburn, WA  98092
Phone: (253) 833-6655
Fax: (253) 833-6675
Email: info@gluten.net
Web Address: www.gluten.net
 

This organization provides support, education, awareness, and advocacy to people affected by gluten intolerances.


National Digestive Diseases Information Clearinghouse
2 Information Way
Bethesda, MD  20892-3570
Phone: 1-800-891-5389
Fax: (703) 738-4929
TDD: 1-866-569-1162toll-free
Email: nddic@info.niddk.nih.gov
Web Address: www.digestive.niddk.nih.gov
 

This clearinghouse is a service of the U.S. National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the U.S. National Institutes of Health. The clearinghouse answers questions; develops, reviews, and sends out publications; and coordinates information resources about digestive diseases. Publications produced by the clearinghouse are reviewed carefully for scientific accuracy, content, and readability.


References

Citations

  1. Catassi C, et al. (2005). Association of celiac disease and intestinal lymphomas and other cancers. Gastroenterology, 129(Suppl 1): S79–S86.

Other Works Consulted

  • Agency for Healthcare Research and Quality (2004). Celiac Disease (AHRQ Evidence Report/Technology Assessment No. 104). Rockville, MD: Agency for Healthcare Research and Quality. Available online: http://www.ahrq.gov/clinic/epcsums/celiacsum.pdf.
  • American Diabetes Association (2013). Standards of medical care in diabetes—2013. Diabetes Care, 36(Suppl 1): S11–S66.
  • Case S (2005). The gluten-free diet: How to provide effective education and resources. Gastroenterology, 128(4, Suppl 1): S128–S134.
  • Dewar DH, Ciclitira PJ (2005). Clinical features and diagnosis of celiac disease. Gastroenterology, 128(4, Suppl 1): S19–S24.
  • Farrell RJ, Kelly CP (2010). Celiac disease and refractory celiac disease. In M Feldman et al., eds., Sleisenger and Fordtran's Gastrointestinal and Liver Disease, 9th ed., vol. 2, pp. 1797–1820. Philadelphia: Saunders.
  • Gluten-free drugs for celiac disease patients (2008). Medical Letter on Drugs and Therapeutics, 50(1281): 19–20.
  • Green PHR, Cellier C (2007). Celiac disease. New England Journal of Medicine, 357(17): 1731–1743.
  • Haboubi NY, et al. (2006). Coeliac disease and oats: A systematic review. Postgraduate Medical Journal, 82(972): 672–678.
  • Hill ID, et al. (2005). Guideline for the diagnosis and treatment of celiac disease in children: Recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. Journal of Pediatric Gastroenterology and Nutrition, 40(1): 1–19.

Credits

By Healthwise Staff
Primary Medical Reviewer E. Gregory Thompson, MD - Internal Medicine
Specialist Medical Reviewer Jerry S. Trier, MD - Gastroenterology
Last Revised May 29, 2012

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