Patient education: Celiac disease in children (Beyond the Basics)
- Ivor D Hill, MD
Ivor D Hill, MD
- Professor of Pediatrics
- Section Chief, Pediatric Gastroenterology and Nutrition
- Nationwide Children's Hospital
- Anne Roland Lee, EdD, RD, LD
Anne Roland Lee, EdD, RD, LD
- Instructor of Medicine
- Celiac Disease Center
- Columbia University
CELIAC DISEASE OVERVIEW
Celiac disease is a condition that causes a variety of symptoms like diarrhea, weight loss, bloating, stomach pain, and a lack of appetite. These symptoms occur because the immune system responds abnormally to a protein found in certain foods, like wheat, rye, barley, and prepared foods (table 1). 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.
Although celiac disease cannot be cured, strict avoidance of foods that contain gluten usually reverses the damage to the intestinal lining and stops associated symptoms, like diarrhea.
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.
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:
●A 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 does have problems with slowed growth, iron deficiency anemia, a skin rash, or changes in his or her teeth.
In older children, symptoms can include constipation or diarrhea, oily stools that float, abdominal bloating, and gas. Older children may also be shorter than normal for their age, have difficulty gaining weight, or have other problems (anemia, bone thinning).
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 see significant improvement.
Dental (tooth) problems — Children with celiac disease commonly develop changes in the 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 and calcium supplements are also recommended. (See "Patient education: Vitamin D deficiency (Beyond the Basics)".)
Other symptoms — Celiac disease can cause vague symptoms or mild symptoms, such as fatigue, borderline iron deficiency anemia, or being shorter than normal for age. Once a child is confirmed as having celiac disease with a skin or intestinal biopsy, the only treatment is to completely avoid gluten, as discussed below. (See 'Celiac disease treatment' below.)
WHICH CHILDREN NEED TESTING FOR CELIAC DISEASE?
Not all children need to be tested for celiac disease. If 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 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 time. (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 person with celiac disease
●Type 1 diabetes
●Selective IgA deficiency
CELIAC DISEASE TESTING
Several tests are done 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 do this test. The blood test tells whether the child has an increased level of antibodies (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 is recommended to confirm the diagnosis of celiac disease.
Small intestine biopsy — If the blood test shows high levels of tTG antibodies, the diagnosis must be confirmed by examining a sample of the lining of the small intestine through a microscope.
The sample (called a biopsy) is usually collected during a test called upper endoscopy. This test involves swallowing a small flexible instrument 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 inside 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 interferes with 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 complete avoidance of all foods and drinks that contain gluten (table 2). If the child is malnourished because of the disease, nutritional supplements (high-calorie drinks or vitamins) might also be needed.
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 who are in a high-risk group (even if there are no symptoms)
●Dermatitis herpetiformis confirmed with a skin biopsy (see 'Skin symptoms' above)
If the results of the antibody testing and biopsy disagree 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 strict 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 parents and children. (See "Management of celiac disease in children".)
Meeting with a dietitian who is experienced in treating celiac disease can help parents and children:
●Better understand which foods are safe and which are not
●How to read food labels to know if a food or medication is safe
●How to plan a well-balanced gluten-free diet
●Help determine if vitamin and mineral supplements are necessary
●How to make the necessary adjustments to provide a safe gluten-free diet at home and at school
●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 gluten-free substitute foods are now widely available (table 2).
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.
What foods contain gluten? — The most common grains in the Western world (wheat, rye, and barley) contain gluten, and gluten is added to many prepared foods (table 1).
●Avoid foods containing wheat, rye, and barley
●Fresh fruits, vegetables, milk, eggs, unprocessed meats and poultry, rice, corn, and potato are gluten free and safe. Naturally gluten-free grains such as buckwheat, quinoa, and millet add a good source of nutrients but may be contaminated with wheat. These grains and flours should only be used if they are labeled “gluten-free” .
●Read labels on prepared foods and condiments carefully, paying close attention to additives, such as stabilizers or emulsifiers, that might contain gluten
●A child might have a hard time with dairy products in the beginning; many people with celiac disease can have temporary lactose intolerance. If your child's symptoms worsen after eating or drinking foods with lactose, avoid lactose temporarily.
●"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 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 as there is a small percentage of the population that cannot tolerate the protein found in oats.
Is a strict gluten-free diet really necessary? — A completely gluten-free diet is the only treatment for celiac disease.
Children who do not have bothersome symptoms of celiac disease often find it hard to follow a strict gluten-free diet. Indeed, some doctors have questioned the need for a gluten-free diet in people without symptoms. However, most experts recommend a strict 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 strict gluten-free diet are more likely to have certain health problems as adults, including osteoporosis (thinning of bones) and having babies with lower birth weight.
●Strictly following a 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.
About six months after starting a gluten-free diet, the child's doctor or nurse might repeat a blood test to test the tTG antibody levels. The antibody level should be lower, or even disappear, as the child improves and continues to avoid gluten.
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
A gluten-free diet will require changes for the entire family. Talking to an experienced healthcare provider or dietitian can help parents and children make the needed adjustments to a gluten-free lifestyle. While there is an abundance of information on the internet that can provide very useful information, community-based support groups have been found to have a significant positive effect on quality of life. The community-based support groups offer the family important information and networking resources to navigate through 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 day care provider about the condition, what foods are safe, and what to do in case of inadvertent exposure to gluten.
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.)
Celiac disease is a lifelong condition. There is no cure for celiac disease, although avoiding gluten probably prevents all complications of celiac disease.
Because children with celiac disease might have an increased risk of certain infections, a vaccination is recommended to reduce the risk of pneumococcal infections (like pneumonia). The vaccine is given just once. (See "Patient education: Pneumonia prevention in adults (Beyond the Basics)".)
WHERE TO GET MORE INFORMATION
Your child's healthcare 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 web site (www.uptodate.com/patients). Related topics for patients, as well as selected articles written for healthcare 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.
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 the diagnosis of chronic diarrhea in children 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
Pathogenesis, epidemiology, 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, available in Spanish)
●The Celiac Disease Foundation
●The Celiac Sprue Association
●GIKids (from the North American Society for Pediatric Gastroenterology, Hepatology, and Nutrition)
Patient support — There are a number of online forums where patients can find information and support from other people with similar conditions.
●Generation GF (www.gluten.org/community/kids)
- Thompson T, Lee AR, Grace T. Gluten contamination of grains, seeds, and flours in the United States: a pilot study. J Am Diet Assoc 2010; 110:937.
- Hill ID, Dirks MH, Liptak GS, et al. Guideline for the diagnosis and treatment of celiac disease in children: recommendations of the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition. J Pediatr Gastroenterol Nutr 2005; 40:1.
- Fasano A, Araya M, Bhatnagar S, et al. Federation of International Societies of Pediatric Gastroenterology, Hepatology, and Nutrition consensus report on celiac disease. J Pediatr Gastroenterol Nutr 2008; 47:214.
- National Institutes of Health Consensus Development Conference Statement. Celiac Disease 2004. Available at: http://consensus.nih.gov/ (Accessed on March 11, 2011).
- Collin P, Thorell L, Kaukinen K, Mäki 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.
- Husby S, Koletzko S, Korponay-Szabó IR, et al. European Society for Pediatric Gastroenterology, Hepatology, and Nutrition guidelines for the diagnosis of coeliac disease. J Pediatr Gastroenterol Nutr 2012; 54:136.
- Downey L, Houten R, Murch S, et al. Recognition, assessment, and management of coeliac disease: summary of updated NICE guidance. BMJ 2015; 351:h4513.
All topics are updated as new information becomes available. Our peer review process typically takes one to six weeks depending on the issue.