KidsMD Health Topics

Celiac Disease


  • No parents want to hear that their child has a chronic illness, but the good news is that celiac disease (CD) is always treatable by changes in diet. This means that your child can avoid side effects associated with medicine, and as a bonus, often the whole family eats more healthily after a member is diagnosed with celiac disease.

    Celiac disease is a lifelong intolerance to gluten—a protein found in wheat, barley, rye and also in oats that have been contaminated with gluten from other products. In people with celiac disease, gluten damages the lining of the intestines. This can prevent them from absorbing nutrients and cause a variety of other symptoms.

    • Celiac disease is far from uncommon—recent studies suggest that an estimated 1 in 133 people in the United States are affected by the condition, and many are undiagnosed.

    • There is no “cure” for celiac disease, but lifelong avoidance of gluten is effective treatment.

    • CD tends to affect more girls than boys.

    • There’s a strong hereditary component with celiac disease.

    • Living with celiac disease usually gets a lot easier with time, as you build up your knowledge.

    How Boston Children’s Hospital approaches celiac disease

    The experts in our Celiac Disease Program are some of the best in the country when it comes to diagnosing and helping families manage celiac disease with a gluten-free lifestyle. We also have a vibrant and active support group with more than 350 member families. For more information about the support group, please call 617-355-2127 or email us at celiacsupportgroup@childrens.harvard.edu.


    Celiac disease: Reviewed by Alan M. Leichtner, MD, FAAP
    © Boston Children’s Hospital, 2011

  • What happens in celiac disease?

    When food enters the stomach, it’s broken down into tiny digestible particles, which then travel through the small intestine. The small intestine is lined with villi—tiny finger-like projections that absorb nutrients from the food passing through. In celiac disease, gluten damages the intestine and causes the villi to break down, leaving a smooth lining that can no longer absorb nutrients.

    Why is it called celiac disease?

    Celiac comes from the Greek word for “abdominal.”

    What complications are associated with celiac disease?

    • Sometimes people with celiac disease have problems absorbing calcium, iron, folate and other vitamins and minerals. This can lead to iron deficiency anemia and/or low bone density.
    • People with celiac disease may also have a decreased response to the Hepatitis B vaccine.

    While major complications are rare in children, if you suspect your child may have celiac disease, it’s important to get her checked out. If left untreated, the damage to the intestines may increase the risk of developing some cancers and/or autoimmune diseases.

    What conditions are associated with celiac disease?

    Conditions associated with celiac disease include:

    • autoimmune diseases (e.g., Type 1 diabetes, hyperthyroidism, hypothyroidism)
    • genetic disorders (e.g., Down syndrome, Turner syndrome, Williams syndrome)

    Should other members of my family be tested for celiac disease?

    Yes—the parents and siblings of a child with celiac disease should be tested, regardless of whether they’re showing any symptoms, typical or atypical.

    We need to wait for infants and small children to reach the age of 2 or 3 before they can be tested, since gluten exposure needs to trigger CD. Talk with your doctor about what makes the most sense for your family.

    Can celiac disease be prevented?

    This is an area of ongoing research. There has been some evidence that introducing gluten while breast feeding (and not before 4 months of age) may be helpful, and a rotavirus vaccine may help to prevent an infection that might trigger celiac disease.

    Celiac disease symptoms

    The symptoms of celiac disease can be very different from child to child–and also dependent on age. The classic symptoms that are prevalent in children under the age of 3 include:

    • abdominal pain and/or cramps 
    • abdominal distension  (bloating)
    • diarrhea (loose stools)   
    • constipation (hard stools)
    • nausea
    • vomiting
    • decreased appetite
    • increased fatigue
    • weight loss or poor weight gain
    • short stature or poor growth
    • frequent mouth ulcers

    Now that there are blood tests that can help establish a celiac disease diagnosis, and doctors are becoming increasingly familiar with atypical signs and symptoms, celiac disease is also increasingly being diagnosed in older children—in fact, the average age of diagnosis is currently around 9 years old.

    These signs and symptoms include:

    • delayed puberty
    • behavioral problems
    • iron deficiency
    • osteopenia/osteoporosis
    • hepatitis
    • arthritis
    • infertility
    • migraines
    • seizures
    • neuropathy

    Causes of celiac disease

    Doctors haven’t yet figured out exactly how someone develops celiac disease. We do know that people with celiac disease always inherit one particular gene from a parent that makes them susceptible to the disease. But since many people have that gene but never develop CD, it’s likely that other genes play a part, too.  

    Some researchers believe that celiac disease may be triggered by the combination of:

    • having the gene(s) that make you susceptible
    • exposure to gluten
    • exposure to a toxin or an infection (such as a rotavirus)

    FAQ

    Q:  Is celiac disease life-threatening?
    A:  
    No, because it can be completely managed by diet.  

    Q:  Is celiac disease a food allergy?
    A:  While both celiac disease and food allergies refer to the body’s intolerance for certain substances, there are some important differences between celiac disease and food allergies:

    • Food allergies are the result of a different kind of immune process.
    • Children may outgrow certain food allergies beginning in infancy, while celiac disease is a life-long condition.
    • In contrast to celiac disease, exposure to certain foods in patients with food allergy may cause breathing problems or other sudden life-threatening reactions.

    Q:  What will my child be able to eat?
    A:  
    You may be surprised by the variety of foods that your child can eat—and that’s what our registered dieticians will help you to focus on. A healthy gluten-free diet includes a variety of fresh fruits, vegetables, rice, quinoa, millet, buckwheat, meats, milk and milk products. There are also breads, crackers, pasta and desserts that are made from the allowed grains.

    Q:  When will my child start to feel better?
    A:  This varies for each child. Some children feel completely better after a few days on the gluten-free diet, and for others, it takes a bit longer. There may still be days when your child doesn’t feel well, and that’s normal. But if it persists, let your doctor know.

    Q:  Should my child restrict her physical activities?
    A:  Generally speaking, no. As long as your child is feeling well enough to participate, physical activity is encouraged. In addition to the many other benefits of exercise, it can also help maintain bone density, which can be very helpful for children with celiac disease. 

    Q: Is any amount of gluten safe for my child?
    A
    : Unfortunately, gluten is very toxic to people who have celiac disease. As little as 50 mg per day of gluten can cause damage–that’s 1/100th of a piece of bread. That said, kids can’t live in a bubble, and there will be times when some gluten gets in.

    Q:  Are gluten-free foods covered by health insurance?
    A:  Not yet, but there’s a significant lobby pushing to make this happen.

    Q:  Could my child be exposed to gluten outside of food?
    A:  
    Yes. Gluten may also be found in:

    • prescription or over-the-counter medications
    • sunscreen
    • soap
    • shampoo and conditioner
    • lipstick, lip gloss and lip balms
    • Play-Doh
    • stamp and envelope glue, the backs of stickers
    • vitamin, herbal and mineral preparations

    Gluten-free versions of all of these things are available, and you can even find instructions for how to make gluten-free Play-Doh online!

    For medications, make sure that you go to a pharmacy familiar with celiac disease—your child’s doctor will indicate on the prescriptions that there must be no substitutions, and all medicines must be gluten-free.

    Make sure your child washes her hands after playing with Play-Doh. While protein can’t be absorbed through the skin, there’s a concern that it may get under her fingernails, and then into her mouth, if she puts her fingers there.

    Q: Can nutrition labels be trusted?
    A: Nutritional labels have gotten better, but reading them is still a bit of an art and a science. A recent law requires that eight of the most common allergens be listed on the food label—this includes wheat, but not barley or rye.

    Right now, “gluten-free” is generally used to indicate a supposedly harmless level of gluten, rather than a complete absence.

    The U.S. Food and Drug Administration is considering a legal definition for “gluten-free,” and there’s a good chance that in the next year or two, it will declare a food to be “gluten-free” if it has an infinitesimal amount of gluten, perhaps along the lines of 20 parts per million.

    The FDA could then test foods made anywhere—in gluten-free and non-gluten-free environments—to determine whether they’re safe for people who must avoid gluten. 

    Until then, we’re in a state of limbo, and have to use our best judgment. Keep in mind that this is disconcerting for many parents, and navigating the array of choices available gets much easier with time. Our registered dieticians will teach you how to interpret food labels, what to watch out for, and where to turn for more information.

    Q:  Is the damage to my child’s intestine reversible?
    A:  
    Yes, the damage will heal, and your child’s intestine will look perfectly normal, so long as she avoids gluten.

    Q:  Should I tell my child’s school about the diagnosis?
    A:  
    Absolutely. Your child’s teachers and school nurse can be great allies in helping to protect your child’s health by encouraging her to follow her diet at school and providing alternative snacks or treats when appropriate.

    One thing to remember is that for many teachers–and many people in general–“food intolerance” means something that causes an immediate, dramatic reaction, and requires emergency medical attention. They may need to be educated about your child’s condition.

    Questions to ask your doctor

    After your child is diagnosed with a celiac disease, you may feel overwhelmed with information. It can be easy to lose track of the questions that occur to you.

    Lots of parents find it helpful to jot down questions as they arise–that way, when you talk to your child’s doctors, you can be sure that all of your concerns are addressed.

    If your child is old enough, you might suggest that she write down some questions to ask her health care providers, too. Here are some questions to get you started:

    • Could something else be causing my child’s symptoms?
    • When should my child see results – in other words, when will we know whether the diet modifications are working?
    • Are any symptoms considered an emergency? What should we do if it happens?
    • How much experience does this institution have in treating children with celiac disease?
    • Do you have any materials I can use to help describe my child’s condition to others?

    Life with celiac disease

    There’s no denying that food plays a large role in culture. For a family affected by celiac disease, it may seem like gluten is everywhere you look, including celebrations, dates, casual gatherings and even ballgames. It can be easy to feel frustrated and left out, especially for a child.

    The good news is that food doesn’t have to be a prominent part of our lives. Deciding how to retool family traditions to make them less food-centric can be a creative and fun activity that your family can do together.

    After all, inventing your own custom-made traditions is something many families never think to do. Remember that even though your child may be limited in what she can eat, you can still save some ‘safe’ foods for celebrations and special occasions.

    Here are some other tips to keep in mind as you begin to chart your child’s new nutritional path:

    Celiac disease at school

    • Ask your child’s teachers to let you know about upcoming birthday celebrations. Then, together with your child, decide in advance how to help her feel a part of it.

    • Keep gluten-free treats for surprise snacks.

    • Send a letter home with parents asking if they’ll let you know if they will be sending food in with their kid. Most schools are very used to getting requests like this.

    • Make sure your child has a stash of gluten-free treats in the classroom to ‘match’ the food served at birthday parties and snack times.

    • Together with your child, come up with a plan for what she can say to other kids if they ask about her special foods.

    • Make sure your child is prepared with food on field trips and other school events.

    Dining out with celiac disease (from the American Dietetics Association)

    • Know what ingredients are in the foods at the restaurant where you plan to eat. When possible, look over the menu in advance (many restaurants now post their menus online).

    • Let your server know from the beginning about your child's celiac disease. Ask about preparation and ingredients before you order. If your server doesn’t know or seems unsure, ask to speak to the manager or chef.

    • Avoid buffet-style or family-style service, as there may be cross-contamination of foods from using the same utensils for different dishes.

    • Avoid fried foods, since the same oil may be used to fry several different foods.

    Celiac disease and friends

    • Schedule parties and get-togethers with friends for times other than traditional mealtimes, such as mid-afternoon or after dinner.

    • Encourage your child to pursue non-food related interests and hobbies.

    • Plan fun, creative birthday parties.

    It’s important for your family and your child to remember that your child is not being deprived of anything—instead, safe versions of certain foods will replace the ones she used to eat.

    This is only the tip of the iceberg when it comes to helping your child thrive with celiac disease. For more information on everything from recipes, shopping and cooking tips to sibling considerations to planning activities and travel, visit the Celiac Disease Program and Support Group’s online Family Health Education Series.

  • The first step in helping your child is forming an accurate and complete diagnosis. Celiac disease can sometimes be challenging to diagnose, because doctors often look for expected gastrointestinal symptoms, like diarrhea, abdominal pain and weight loss. That’s why it’s important that your child be seen by specialists who have a lot of experience with the different ways that celiac disease can appear in kids.

    Diagnosis most often begins with a blood test. While these tests are generally quite accurate, sometimes a person who has celiac disease will test negative, and someone who does not have it will test positive, so it can’t say for sure.  

    After the blood test, your child may be asked to come in for an endoscopy, during which the physician will take a few small biopsies. This is the most important test to see whether your child has celiac disease, because it will allow the doctor to examine the villi. For the endoscopy, your child will be given medicine to make her feel relaxed and sleepy, and may also receive anesthesia.

    Your child’s team may then run some other tests to look for complications that are associated with celiac disease, including a bone density scan, thyroid function tests and more comprehensive blood tests to check vitamin and mineral levels.

    Remember—don’t put your child on a gluten-free diet before a doctor diagnoses your child with celiac disease, since the doctors will be checking to see whether gluten damages the lining of her intestine. This will allow the tests to be as effective and informative as possible.

    After we complete all necessary tests, our experts meet to review and discuss what they have learned about your child's condition. Then we will meet with you and your family to discuss the results and outline the best next steps to take.

  • It's not that easy at first to change your diet—let alone that of another person—but the good news is that for the vast majority of children with celiac disease, this is all the treatment they will need.

    The only treatment for celiac disease is strict adherence to a gluten-free diet for life. This will allow your child's intestines to heal, and, in almost all cases, eliminate the symptoms she was experiencing related to celiac disease.

    At Boston Children's Hospital, we're committed to helping you and your family through this time of transition. Our registered dietician will meet with you and your family, and discuss with you everything you need to know about a gluten-free diet, including:

    • which foods are safe
    • which foods should be avoided
    • how to read a food label
    • the “real meaning” behind some ingredients
    • what to do when you're unsure whether a food is safe
    • how to make sure your child's gluten-free diet is nutritionally balanced

    Remember that it's important that your child be seen by a registered dietician with expertise in caring for children with celiac disease.

    What if the gluten-free diet doesn't work for my child?

    A tiny minority of children with CD don't see improvement on a gluten-free diet. This could be

    • because she hasn't been adhering to the gluten-free diet
    • because there is another condition that is affecting her intestine  
    • because she has been inadvertently consuming gluten in some form
    • because (in extremely rare cases)  the disease doesn't respond to diet alone

    In these cases, medications such as steroids or immunosuppressants can help.

    How often will my child be seen after diagnosis?

    Your child's doctor will probably want to see your child after three months, after six months, and after a year.


    Coping and support

    It's important to remember that while having a child with celiac disease can feel isolating, many children and their families have been down this path before. We've helped them, and we can help you, too. There's lots of support available for your family– here at Children's, in the outside community and online. These include:

    The Celiac Support Group at Boston Children's Hospital: We offer newly diagnosed families a wealth of knowledge and guidelines for raising children with celiac disease. As a new member, our outreach committee will contact you and give your family support in the form of diet education and a welcome basket filled with gluten-free foods. The Celiac Support Group also offers:

    • networking with other parents
    • a quarterly newsletter covering medical updates, news of the celiac community, gluten-free recipes, educational articles and gluten-free commercial product lists
    • membership meetings offering disease education, lifestyle management techniques, gluten-free foods and vendors
    • parties and other social events where children and their families can socialize in a safe, gluten-free environment


    Social work: Our social workers have helped many other families in your situation. Your social worker can offer counseling and assistance with issues such as coping with your child's diagnosis, stresses relating to coping, and dealing with financial difficulties.

    Faith-based support: If you are in need of spiritual support, we'll help connect you with the Children's chaplaincy. Our program includes nearly a dozen clergy representing Episcopal, Jewish, Lutheran, Muslim, Roman Catholic, Unitarian and United Church of Christ traditions who will listen to you and pray with you.

    On our For Patients and Families site, you can read all you need to know about:

    • getting to Boston Children's
    • accommodations
    • navigating the hospital experience
    • resources that are available for your family

    Helpful links

    Access lots of additional information through the Celiac Program and Support Group's Family Health Education.

  • Here at the Celiac Disease Program at Boston Children’s Hospital, our care is informed by our research. Boston Children’s is home to the world’s most extensive research enterprise at a pediatric hospital. But as specialists in innovative, family-centered care, our physicians never forget that your child is precious, and not just a patient.

    Researchers in the Celiac Disease Program are studying:

    • serologic markers, the identification of which could reduce the need for endoscopies in the diagnosis of celiac disease

    • procedures for taking more reliable biopsies

    • the correlation between people who have had Marsh 1 lesions (sometimes thought of as pre-celiac disease findings) and people who develop celiac disease

    Other researchers are examining:

    • how to genetically engineer wheat so that it doesn’t have the proteins that are toxic to people with CD

    • developing a medicine to take with food that may help break down the gluten. This probably won’t work to the point where it can substitute for following a gluten-free diet, but it could offer protection in situations in which you can’t be sure the food is gluten-free.  

    • the possibility of a celiac disease vaccine that could be used as prevention and treatment

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