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Patient education: Celiac disease in children (Beyond the Basics)

Patient education: Celiac disease in children (Beyond the Basics)
Authors:
Marisa Stahl, MD, MSCS
Edwin Liu, MD
Section Editor:
B UK Li, MD
Deputy Editor:
Alison G Hoppin, MD
Literature review current through: Nov 2022. | This topic last updated: Jun 03, 2022.

CELIAC DISEASE OVERVIEW — Celiac disease is a condition caused by an abnormal immune response to gluten. Gluten is a protein found in certain grains, such as wheat, rye, and barley; it is also found in many prepared foods. For people with celiac disease, eating these foods (even in very small amounts) causes injury to the lining of the small intestine. The small intestine is responsible for absorbing food and nutrients. When the immune system damages the lining of the small intestine, it can lead to problems absorbing important nutrients from foods; this is known as "malabsorption."

Many people with celiac disease have gastrointestinal symptoms such as diarrhea, weight loss, bloating, stomach pain, and lack of appetite. Some people have non-gastrointestinal symptoms such as slowed growth, headaches, joint pain, difficulty focusing, and fatigue. Other people have few or no symptoms or do not realize they had symptoms until they are on a gluten-free diet.

Treatment for celiac disease involves following a completely gluten-free diet. This usually reverses the damage to the intestinal lining and resolves the associated symptoms. A gluten-free diet means avoiding all foods that contain gluten, even in small amounts; 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 is an autoimmune disease; this means that the immune system (which normally protects the body against foreign organisms like viruses and bacteria) attacks the body's own cells and tissues as though they were foreign. It happens when a person who is genetically predisposed eats food containing gluten and the immune system starts reacting abnormally to gluten. Although the risk is partly determined by genetics, children with celiac disease may or may not have parents or close relatives with the condition. Many people have genes that increase their risk for celiac disease, but most people with the genes never develop celiac disease.

Celiac disease is different from wheat allergy. Wheat allergy occurs when different parts of the immune system are activated by wheat, causing allergic symptoms such as hives and wheezing or a serious allergic condition called "anaphylaxis." (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.

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

Diarrhea

Poor appetite

Bloated or painful belly

Weight loss or difficulty gaining weight

Oily bowel movements

Constipation

Vomiting (uncommon)

These symptoms can begin at any age after a person starts eating gluten-containing foods, from infancy to adulthood. Some children have very mild symptoms or none at all. Having these symptoms does not necessarily mean that a child has celiac disease.

Non-gastrointestinal symptoms — Other symptoms that are sometimes caused by celiac disease are listed below. These symptoms may happen in addition to or instead of the gastrointestinal symptoms listed above.

General symptoms – Fatigue (feeling tired for no reason), anxiety, or sleeping problems.

Growth and puberty – Slow growth, being much shorter than other family members, or starting puberty much later than other children their age.

Joint pain – Persistent joint pain or swelling.

Skin – A skin problem, known as dermatitis herpetiformis, can happen in people with celiac disease. It mostly happens in adults and is uncommon before puberty. In some cases, people 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 on the elbows, knees, buttocks, lower back, face, neck, trunk, and, occasionally, inside the mouth (picture 1). The most bothersome symptoms are itching and burning. 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.

Teeth – Changes in the permanent (adult) teeth 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 might have thinned or weakened bones that can be seen on an X-ray. This is probably caused 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)".)

In children with celiac disease, blood tests sometimes show signs of liver irritation, or anemia caused by iron deficiency.

SHOULD MY CHILD BE TESTED FOR CELIAC DISEASE? — If your child has a first-degree relative (parent or sibling) who has been diagnosed with celiac disease, or if you are concerned that your child has symptoms that might be caused by celiac disease, ask a doctor if the child should be tested. Even if you suspect that your child's symptoms are made worse by the foods they eat, it is important that they remain on a regular gluten-containing diet prior to testing. This is because starting a gluten-free diet or avoiding gluten before the test can cause the tests to be inaccurate. For your child, staying on a gluten-containing diet until they have undergone the proper diagnostic testing does not increase the risk of long-term complications from untreated celiac disease.

Some people notice gastrointestinal symptoms after eating foods with gluten but do not actually have celiac disease. The only way to know for sure if a person has celiac disease is through testing. (See 'Celiac disease testing' below.)

If the child has symptoms — Children should be tested if they have symptoms that suggest celiac disease, especially:

Diarrhea lasting for more than a few weeks.

Chronic constipation, recurrent abdominal pain, or vomiting.

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

If puberty has not begun at the expected age or if puberty is progressing much more slowly than expected. This generally means no signs of puberty at age 12 years in girls or 14 years in boys.

Iron deficiency anemia that has not improved with treatment.

If your child has symptoms that concern you, even if you're not sure if they are related to their diet, talk to their health care provider.

If the child has certain other conditions — Children with one or more of the following conditions have a higher-than-normal risk of developing celiac disease and should be considered for testing, even if they have no symptoms:

First-degree relatives (children, siblings) of a person with celiac disease

Down syndrome

Type 1 diabetes

Selective immunoglobulin A (IgA) deficiency

Turner syndrome

Williams syndrome

Autoimmune thyroiditis

Juvenile idiopathic arthritis

Autoimmune liver disease

If the child has no symptoms, the first test usually should be done after three years of age. If the test is negative, it should be repeated every few years to see if the child has developed celiac disease. The approach to testing might be slightly different depending on the underlying condition.

CELIAC DISEASE TESTING — Several tests are used 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.

Blood test — The first step in testing for celiac disease is for a health care provider to order a blood test. The usual blood test is "tissue transglutaminase," or "tTG" antibody test. This test can show whether the child has an increased level of antibodies (immune proteins) to certain tissues in the small intestine.

The level of tTG 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. (See 'Small intestine biopsy' below.)

Small intestine biopsy — If the blood test shows high levels of tTG antibodies, the diagnosis usually should be confirmed by taking a sample (biopsy) from the lining of the small intestine. 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 collected during a test called an upper endoscopy; this can be done as an outpatient procedure. This test involves inserting a small flexible tube called an endoscope through the mouth, 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 take samples (biopsies) of the surface of the small intestine. The biopsy is not painful. (See "Patient education: Upper endoscopy (Beyond the Basics)".)

The biopsy is examined through a microscope. Normally, the lining of the small intestine has finger-like structures, which are called "villi." Villi allow the small intestine to absorb nutrients from food. When a person with celiac disease eats gluten, the villi become injured and flattened, which reduces their ability to absorb nutrients. Once the person stops eating gluten, the villi heal and return to working normally.

Confirming the diagnosis — A diagnosis of celiac disease is confirmed in children who have an abnormal antibody test and at least one of the following:

An abnormal small intestinal biopsy regardless of symptoms

Very high tTG levels (more than 10 times higher than normal), along with another positive celiac antibody called the endomysial antibody on a separate blood draw, if a biopsy was not done

Dermatitis herpetiformis confirmed with a skin biopsy (see 'Non-gastrointestinal 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.

CELIAC DISEASE TREATMENT — A gluten-free diet is recommended for all children with a confirmed diagnosis of celiac disease or dermatitis herpetiformis (see 'Confirming the diagnosis' above). This diet usually improves any symptoms, allows the small intestine to heal, and prevents any long-term health problems that might be caused by celiac disease.

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. Iron and vitamin D supplementation may also be recommended if your child does not get enough of these nutrients through their diet.

How do we stop eating gluten? — A completely gluten-free diet is the only treatment for celiac disease (table 1). Eating even small amounts of gluten can cause intestinal damage, allowing symptoms to return. Following a gluten-free diet requires adjustments for the child and their family members.

Meeting with a dietitian who is experienced in treating celiac disease can help you and your child 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 ensure a safe gluten-free diet at home, school, or summer camp

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

Know how to find gluten-free substitutes for some 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.

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. (See 'Nutrition and the gluten-free diet' below.)

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 all foods that contain wheat, rye, or 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. To add variety and nutrients, try including some less common gluten-free grains such as amaranth, buckwheat, quinoa, teff, and millet.

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. Oats are generally permitted in a gluten-free diet, as long as the package specifically indicates that the product is gluten free and was processed in a gluten-free facility. Some health care providers advise people with newly diagnosed celiac disease to avoid oats for the first few months after starting a gluten-free diet. A few people with celiac disease cannot tolerate the protein found in oats and may need to avoid them.

Include milk, cheese, and yogurt, if they do not cause digestive symptoms. These foods are naturally gluten free and provide valuable nutrients (especially calcium and vitamin D). However, they also contain lactose and some people might have a hard time with these foods at first; this is because many people with celiac disease have temporary lactose intolerance until the intestine heals. If your child has diarrhea or belly pain after eating or drinking foods with lactose, avoid lactose temporarily.

Nutrition and the gluten-free diet — A gluten-free diet requires extra attention to ensure that it is healthy and well balanced:

Starches and grains – 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. 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].

Gluten-free food substitutes – Many gluten-free substitute foods are now widely available, including gluten-free pastas, snacks, and sweets. These products can help a child enjoy some of their favorite types of foods. However, they may also be less healthy than naturally gluten-free foods and may cause more weight gain. This is because most commercial gluten-free products use processed flours and starches rather than whole grains. To mimic the taste and texture of wheat-based foods, they are often high in sugar, fat, and salt and, therefore, high in calories. It is generally best to limit the amount of commercial gluten-free food substitutes in the child's diet and rely mostly on naturally gluten-free foods.

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. However, experts recommend a completely gluten-free diet for all children with celiac disease, whether or not the child has symptoms, for the following reasons:

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

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.

Accidental gluten exposures — Children with celiac disease may or may not develop symptoms if they accidentally eat gluten. If they do have symptoms, this usually happens within a few hours. Each child has their own typical pattern of symptoms, and the severity may depend on the amount of gluten that they eat. If your child has symptoms, have them sip fluids to stay hydrated. They can take pain-relieving medications if needed.

The symptoms typically improve on their own within one to two days. If your child vomits for more than a few hours or seems dehydrated, contact their health care provider for advice. (See "Patient education: Nausea and vomiting in infants and children (Beyond the Basics)".)

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 three to six months, their health care provider 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 (one to two years) for the antibody levels 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 likely prevents complications of celiac disease. With time and practice, you will get used to helping your child navigate a gluten-free lifestyle. Below are some tips that can help.

Support – A gluten-free diet will require changes for your entire household. For some people, maintaining a completely gluten-free diet causes a lot of anxiety and interferes with eating out and quality of life. Talking to an experienced health care provider or dietitian can help your 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 as you get used to living a gluten-free lifestyle. They can also provide important information and networking resources to help you navigate schools, camps, and other situations. (See 'Support groups and forums' below.)

School or daycare – If your child has been newly diagnosed with celiac disease, you will need to speak to their teacher or daycare provider about the condition, what foods are safe, and what to do in case of accidental exposure to gluten. If you live in the United States, you can request that the school provide accommodations for your child (504 Accommodation Plan or an Individual Health Plan [IHP]). These plans are developed jointly between the parents/guardians 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, Celiac Disease Foundation, and Beyond Celiac websites.

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

Vaccinations – Children with celiac disease should receive all routinely recommended vaccines. It's especially important to ensure that they are fully vaccinated against hepatitis B and pneumococcal pneumonia. (See "Patient education: Vaccines for infants and children age 0 to 6 years (Beyond the Basics)" and "Patient education: Vaccines for children age 7 to 18 years (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)

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.

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

Websites — The following organizations also provide reliable health information.

National Library of Medicine

(www.medlineplus.gov/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)

Support groups and forums — 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)

  1. US Food and Drug Administration. For Consumers: Seven Things Pregnant Women and Parents Need to Know About Arsenic in Rice and Rice Cereal. 2020. Available at: https://www.fda.gov/consumers/consumer-updates/consumers-seven-things-pregnant-women-and-parents-need-know-about-arsenic-rice-and-rice-cereal (Accessed on October 11, 2020).
This generalized information is a limited summary of diagnosis, treatment, and/or medication information. It is not meant to be comprehensive and should be used as a tool to help the user understand and/or assess potential diagnostic and treatment options. It does NOT include all information about conditions, treatments, medications, side effects, or risks that may apply to a specific patient. It is not intended to be medical advice or a substitute for the medical advice, diagnosis, or treatment of a health care provider based on the health care provider's examination and assessment of a patient's specific and unique circumstances. Patients must speak with a health care provider for complete information about their health, medical questions, and treatment options, including any risks or benefits regarding use of medications. This information does not endorse any treatments or medications as safe, effective, or approved for treating a specific patient. UpToDate, Inc. and its affiliates disclaim any warranty or liability relating to this information or the use thereof. The use of this information is governed by the Terms of Use, available at https://www.wolterskluwer.com/en/know/clinical-effectiveness-terms ©2023 UpToDate, Inc. and its affiliates and/or licensors. All rights reserved.
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