CELIAC DISEASE OVERVIEW — Celiac disease is a condition that causes a variety of symptoms, mostly affecting the gastrointestinal tract, such as diarrhea, weight loss, bloating, stomach pain, and lack of appetite. Some individuals have nondigestive symptoms such as slowed growth, headaches, joint pain, and fatigue. These symptoms occur because the immune system responds abnormally to a protein found in certain foods, like wheat, rye, barley, and prepared foods. These proteins are called gluten. Celiac disease is also known as gluten-sensitive enteropathy (pronounced "enter-AH-pathy"), celiac sprue, and nontropical sprue, all terms that identify the injury to the lining of the small intestine.

The small intestine is responsible for absorbing food and nutrients. Thus, if the immune system damages the lining of the small intestine, this can lead to problems absorbing important nutrients from foods; this problem is referred to as malabsorption.

Treatment for celiac disease is a completely gluten-free diet, which usually reverses the damage to the intestinal lining and stops the associated symptoms. A gluten-free diet means avoiding any foods that contain gluten, and this should be continued for life.

Celiac disease in adults is discussed separately. (See "Patient education: Celiac disease in adults (Beyond the Basics)".)

CELIAC DISEASE CAUSES — Celiac disease occurs as a result of a child's genetics and exposure to a trigger. A child who develops celiac disease probably inherits the risk from one or both parents and then develops the disease when exposed to the dietary trigger, gluten. Once a child is confirmed to have celiac disease with specific testing, the only treatment is to completely avoid ingesting gluten.

Celiac disease is different from wheat allergy. Allergies occur when different parts of the immune system are activated by wheat, causing allergic symptoms such as hives and wheezing. (See "Patient education: Food allergy symptoms and diagnosis (Beyond the Basics)".)

CELIAC DISEASE SYMPTOMS — The symptoms of celiac disease can vary from mild to severe.

Common symptoms — Common symptoms of celiac disease in children include:

●Diarrhea

●Poor appetite

●Bloated or painful belly

●Weight loss or difficulty gaining weight

These symptoms can begin at any age after an individual is eating gluten-containing foods, from infancy to adulthood.

In some cases, the child does not have any of the more common symptoms but instead has problems with slowed growth, anemia caused by iron deficiency, constipation, oily stools that float, gas, skin rash, fatigue, or joint pain. Some children have behavioral symptoms such as anxiety or sleeping problems. Older children may also be shorter than normal for their age, have difficulty gaining weight, experience delayed puberty, or have other problems (anemia, thinning of bones).

Skin symptoms — A skin problem, known as dermatitis herpetiformis, is common in adults with celiac disease. This condition is uncommon before puberty in children with celiac disease. A person may have skin symptoms with few or no gastrointestinal symptoms.

The symptoms of dermatitis herpetiformis include intensely itchy, raised, fluid-filled blisters on the skin, usually located on the elbows, knees, buttocks, lower back, face, neck, trunk, and, occasionally, within the mouth (picture 1).

The most bothersome symptoms are itching and burning. Scratching causes the blister to rupture and dry up, but this leaves an area of darkened skin and scarring. A skin biopsy may be taken to see if the rash is dermatitis herpetiformis. The condition will improve after elimination of gluten from the diet, although it may take several weeks to months to see significant improvement.

Dental (tooth) problems — Children with celiac disease commonly develop changes in their permanent (adult) teeth. This can include changes in the enamel covering of the teeth, causing cream-colored, yellow, or brown discoloration, and grooves or pits in the teeth (picture 2).

Bone thinning — Children with celiac disease are at risk for weakened bones caused in part by poor absorption of vitamin D and calcium. Treatment of celiac disease by eating a gluten-free diet can resolve the problem in most cases. Sometimes, vitamin D and calcium supplements are also recommended. (See "Patient education: Vitamin D deficiency (Beyond the Basics)".)

WHICH CHILDREN NEED TESTING FOR CELIAC DISEASE? — Not all children need to be tested for celiac disease. If a first-degree relative has been diagnosed with celiac disease, or you are concerned that your child has symptoms that might be caused by celiac disease, ask your child's doctor if the child should be tested. It is important that your child remain on a regular gluten-containing diet prior to testing. This is because starting a gluten-free diet or avoiding gluten before testing is completed can cause the tests to be inaccurate.

If the child has symptoms — Children who have the following symptoms should be tested:

●Shortness or underweight for age, particularly if the child's growth has slowed significantly over time or if the child is significantly smaller than other family members. (See "Patient education: Poor weight gain in infants and children (Beyond the Basics)".)

●Diarrhea lasting for more than a few weeks.

●Chronic constipation, recurrent abdominal pain, or vomiting.

●Certain types of tooth problems. (See 'Dental (tooth) problems' above.)

●If puberty has not begun at the expected age. (See "Normal puberty".)

●Iron deficiency anemia that has not improved with treatment.

High-risk groups — Testing is recommended for certain children (older than three years) who are at increased risk of developing celiac disease, even if the child has no symptoms.

Children with one or more of the following are at increased risk of developing celiac disease and should be considered for testing:

●First-degree relatives (children, siblings) of a child or adult with celiac disease

●Down syndrome

●Type 1 diabetes

●Selective immunoglobulin A (IgA) deficiency

●Turner syndrome

●Williams syndrome

●Autoimmune thyroiditis

CELIAC DISEASE TESTING — Several tests are performed to diagnose celiac disease. The child should continue to eat foods that contain gluten while being tested. Starting a gluten-free diet or avoiding gluten before testing is completed can cause the tests to be inaccurate. (See "Diagnosis of celiac disease in children".)

Blood test — The first step in testing for celiac disease is a blood test. A pediatric or family doctor or nurse can order this test. The blood test reveals whether the child has an increased level of antibodies (immune proteins) to tissue transglutaminase (tTG), which is part of the small intestine. The level of these antibodies is usually high in people with celiac disease (as long as their diet contains gluten) but is almost never increased in people without celiac disease. If the test is positive for tTG antibodies, a biopsy of the small intestine usually is recommended to confirm the diagnosis of celiac disease.

Small intestine biopsy — If the blood test shows high levels of tTG antibodies, the diagnosis usually should be confirmed by examining the lining of the small intestine, then taking a sample (a biopsy) and examining it through a microscope. The biopsy may be optional for some children with very high results of the tTG antibody test (more than 10 times higher than normal) and certain other characteristics. You can discuss with your child's gastroenterologist whether the biopsy is recommended for your child.

The biopsy is usually collected during a test called an upper endoscopy. This test involves swallowing a small flexible tube called an endoscope, which has a camera at the end. A pediatric gastroenterologist performs this test while the child is sedated. The camera allows the doctor to look at the upper part of the digestive system and remove small pieces (biopsies) of the surface of the small intestine. The biopsy is not painful. (See "Patient education: Upper endoscopy (Beyond the Basics)".)

Normally, the lining of the small intestine has finger-like structures, which are called villi. Villi allow the small intestine to absorb nutrients. In people with celiac disease who eat gluten, the villi become flattened, which reduces the absorption. Once the child stops eating gluten, the villi heal and are able to absorb nutrients normally.

CELIAC DISEASE TREATMENT — The only treatment for children with celiac disease is a completely gluten-free diet (table 1). If the child is malnourished because of the disease, nutritional supplements (high-calorie drinks or vitamins) might also be needed for a period of time.

A gluten-free diet is recommended for children who have an abnormal antibody test and:

●An abnormal small intestinal biopsy and symptoms of celiac disease

●An abnormal small intestinal biopsy and are in a high-risk group (even if there are no symptoms)

●Very high tTG levels (more than 10 times higher than normal), together with typical gastrointestinal symptoms such as diarrhea and weight loss in cases where the parents have chosen not to have the child undergo an intestinal biopsy

●Dermatitis herpetiformis confirmed with a skin biopsy (see 'Skin symptoms' above)

If the results of the antibody testing and biopsy conflict or are uncertain, or if the child does not have symptoms of celiac disease, additional testing may be needed. (See "Diagnosis of celiac disease in children".)

How do we stop eating gluten? — A completely gluten-free diet is the only treatment for celiac disease. Eating even small amounts of gluten can cause intestinal damage, allowing symptoms to return. Following a gluten-free diet requires adjustments for both the parents and child. (See "Management of celiac disease in children".)

Meeting with a dietitian who is experienced in treating celiac disease can help guide parents and children to:

●Understand which foods are safe and which are not

●Read food labels to know if a food or medication is safe

●Ensure their gluten-free diet is nutritionally balanced

●Help determine if vitamin and mineral supplements (such as iron) are needed

●Make the necessary adjustments to provide a safe gluten-free diet at home, school, or summer camp

●Navigate social situations, holidays, dining out, and family travel

●Know where to find gluten-free substitutes for the child's favorite foods

In addition, a number of helpful resources are available. (See 'Where to get more information' below.)

For some people, getting a diagnosis of celiac disease is a relief. For others, finding out that they must avoid gluten for the rest of their life seems overwhelming. In either case, it is important to remember that a gluten-free diet is the key to recovery.

Fortunately, life on a gluten-free diet has become easier due to the increased availability of gluten-free foods. Excellent, tasty gluten-free substitute foods are now widely available (table 1).

Some children with celiac disease have vitamin or nutrient deficiencies. Talk to your doctor, nurse, or dietitian about a multivitamin supplement and how to include gluten-free foods that are nutrient rich, such as whole grains and naturally gluten-free foods.

What foods contain gluten? — The most common grains in the Western diet (wheat, rye, and barley) contain gluten, and gluten is added to many prepared foods.

In general (table 1):

●Avoid foods containing wheat, rye, and barley (table 2).

●Include a variety of foods that are naturally gluten-free and safe. These include fresh fruits, vegetables, milk, cheese, yogurt, eggs, unprocessed meats, poultry, fish, beans, nuts, oils, and sugar.

●Include naturally gluten-free grains and starches. Common forms are rice, corn, and potato. However, the less common gluten-free grains amaranth, buckwheat, quinoa, teff, and millet add needed nutrients and variety to a gluten-free diet.

●Read labels carefully on all foods and products. All grains, flours, and starches should be labeled "gluten-free." When selecting prepared foods, mixes, and condiments, read the label carefully, paying close attention to additives, such as stabilizers or emulsifiers, that might contain gluten. Keep in mind that "wheat-free" does not necessarily mean gluten-free. Read the packaging or call the manufacturer if you have questions about a specific product.

●While oats are naturally gluten free, oats can sometimes be contaminated with wheat during processing. Therefore, parents should be sure that the oats are manufactured using the purity protocol process and the package specifically indicates that the product is gluten free and was processed in a gluten-free facility. Children with newly diagnosed celiac disease should wait until their intestines heal before adding oats to their diet. If gluten-free oats are added to the diet, it should be done with the guidance of your dietitian. Oats are usually added in small portions and gradually increased over time to avoid any symptoms caused by the increased fiber in the diet. Careful monitoring of symptoms is important because a small percentage of the general population cannot tolerate the protein found in oats.

●Include milk, cheese, yogurt, and other lactose-containing foods if the child tolerates them. A child might have a hard time with these foods in the beginning because many people with celiac disease have temporary lactose intolerance until the intestine heals. If your child's symptoms worsen after eating or drinking foods with lactose, avoid lactose temporarily.

A note about gluten-free products — The usual gluten-free diet often relies on rice, potato, and corn to replace the standard gluten-containing breads, pastas, and cereals of a wheat-based diet. However, there is concern of the nutritional value of the standard gluten-free diet. Most commercial gluten-free products use processed flours and starches rather than whole grains. These products often use more sugar, fat, and salt to make them closer in texture, but are much higher in calories, compared with their wheat-based counterparts. A gluten-free diet that relies heavily on these commercial products may be less healthy (contain more sugar, fat, and calories) and may also cause more weight gain compared with a gluten-free diet that includes fewer commercial products.

The healthiest gluten-free diet includes a variety of different types of naturally gluten-free grains and whole grains. Adding a variety of gluten-free whole grains increases the nutrient value of the diet by adding fiber, vitamins, and minerals (specifically iron and B complex vitamins). There has been some concern about the potential risk of exposure to arsenic in a diet that predominately uses rice. There may be some validity to these concerns, but the risk has not been scientifically proven. Details are available in a statement from the US Food and Drug Administration [1].

Is a completely gluten-free diet really necessary? — Yes, a completely gluten-free diet is the only treatment for celiac disease.

Children who do not have symptoms of celiac disease may find it hard to follow a completely gluten-free diet. Indeed, some doctors have questioned the need for a gluten-free diet in people without symptoms. However, most experts recommend a completely gluten-free diet for all children with celiac disease, whether or not the child has symptoms, for the following reasons:

●Some children with celiac disease develop vitamin or nutrient deficiencies, even if they feel well. If untreated, these deficiencies can cause problems (such as anemia due to iron deficiency or bone loss due to vitamin D deficiency). People with celiac disease who do not follow a completely gluten-free diet are more likely to develop certain health problems as adults, including osteoporosis (thinning of bones), infertility, having babies with lower birth weight, and, possibly, certain types of cancer.

●Following a completely gluten-free diet usually helps improve a child's energy and sense of well-being, even if the child does not have obvious symptoms.

Monitoring during treatment — After starting a gluten-free diet, most children begin to feel better within a few weeks.

After the child follows a gluten-free diet for approximately six months, the child's doctor or nurse might repeat a blood test to test the tTG antibody levels. The antibody level should be lower as the child improves and continues to avoid gluten. For most children, the antibody levels return to normal quickly; however, for some children, it may take longer for the antibody level to normalize.

A repeat biopsy of the small intestine is not usually necessary if the child's symptoms improve and the antibody levels decrease once a gluten-free diet is started. A repeat biopsy or other tests may be recommended if symptoms do not improve or if antibody levels remain elevated.

LIFE WITH CELIAC DISEASE — Celiac disease is a lifelong condition. There is no cure for celiac disease, although avoiding gluten probably prevents all complications of celiac disease.

A gluten-free diet will require changes for the entire family. For some people, maintaining a completely gluten-free diet causes a lot of anxiety and interferes with eating out and quality of life [2]. Talking to an experienced health care provider or dietitian can help the child and family make the adjustments needed to maintain a gluten-free lifestyle without excessive anxiety. Community-based support groups often have a positive effect on quality of life and can provide guidance to the family for navigating a gluten-free lifestyle. They also offer the family important information and networking resources to help them navigate schools, camps, etc. (See 'Where to get more information' below.)

Parents of children who are newly diagnosed with celiac disease will need to speak to their child's teacher or daycare provider about the condition, what foods are safe, and what to do in case of inadvertent exposure to gluten. Parents can request that the school provide accommodations for their child (504 Accommodation Plan or an Individual Health Plan [IHP]). These plans are developed jointly between the parents and school to ensure full and equal access to all school events safely for your child. More information about accommodation plans are available from the United States Department of Education and Beyond Celiac websites.

Other common concerns include what to do when eating out, traveling, at parties, at school, and at sleep-away camp. Several of the websites listed below include written information about celiac disease and the gluten-free diet for teachers and school staff. (See 'Professional level information' below.)

Because children with celiac disease might have an increased risk of certain infections, a one-time vaccination is recommended to reduce the risk of pneumococcal infections (like pneumonia). (See "Patient education: Pneumonia prevention in adults (Beyond the Basics)".)

WHERE TO GET MORE INFORMATION — Your child's health care provider is the best source of information for questions and concerns related to your child's medical problem.

This article will be updated as needed on our website (www.uptodate.com/patients). Related topics for patients, as well as selected articles written for health care professionals, are also available. Some of the most relevant are listed below.

Patient level information — UpToDate offers two types of patient education materials.

The Basics — The Basics patient education pieces answer the four or five key questions a patient might have about a given condition. These articles are best for patients who want a general overview and who prefer short, easy-to-read materials.

Patient education: Celiac disease (The Basics)
Patient education: Gluten-free diet (The Basics)

Beyond the Basics — Beyond the Basics patient education pieces are longer, more sophisticated, and more detailed. These articles are best for patients who want in-depth information and are comfortable with some medical jargon.

Patient education: Celiac disease in adults (Beyond the Basics)
Patient education: Food allergy symptoms and diagnosis (Beyond the Basics)
Patient education: Vitamin D deficiency (Beyond the Basics)
Patient education: Poor weight gain in infants and children (Beyond the Basics)
Patient education: Upper endoscopy (Beyond the Basics)
Patient education: Pneumonia prevention in adults (Beyond the Basics)

Professional level information — Professional level articles are designed to keep doctors and other health professionals up-to-date on the latest medical findings. These articles are thorough, long, and complex, and they contain multiple references to the research on which they are based. Professional level articles are best for people who are comfortable with a lot of medical terminology and who want to read the same materials their doctors are reading.

Approach to chronic diarrhea in children >6 months in resource-rich countries
Diagnosis of celiac disease in children
Epidemiology, pathogenesis, and clinical manifestations of celiac disease in children
Management of celiac disease in children
Epidemiology, pathogenesis, and clinical manifestations of celiac disease in adults

The following organizations also provide reliable health information.

●National Library of Medicine

(www.nlm.nih.gov/medlineplus/celiacdisease.html; also available in Spanish)

●Celiac Disease Foundation

(www.celiac.org)

●National Celiac Association

(www.nationalceliac.org)

●GI Kids (from the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition)

(www.gikids.org)

Patient support — There are a number of online forums where patients can find information and support from other people with similar conditions.

●Generation GF, from the Gluten Intolerance Group

(www.gluten.org/community/kids)

●Beyond Celiac

(www.beyondceliac.org/)

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