Celiac Disease Program

How Children’s Hospital Boston 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 Celiac Disease support group with more than 400 member families. For more information about the support group, please email us at celiacsupportgroup@childrens.harvard.edu or call 617-355-2127.

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.

 "When I tell parents their child has celiac disease and must go on a gluten-free diet, I am absolutely confident that their child will recover. Adjusting to the diet is challenging, but certainly do-able with the proper supports."

--ALAN M. LEICHTNER, MD, FAAP, DIRECTOR OF THE CELIAC DISEASE PROGRAM AT BOSTON CHILDREN'S HOSPITAL

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 which can prevent absroption of 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 more are undiagnosed.
• There is no “cure” for celiac disease, but lifelong avoidance of gluten is an effective treatment.
• Celiac disease tends to affect more girls than boys.
• There is a strong hereditary component with celiac disease.
• Living with celiac disease gets easier with time as you build up your knowledge.

For a more in depth look at celiac disease, including information on treatment and care, see our conditions and treatments page.

FAQ

Q: What happens in celiac disease?
A: 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.

Q: Why is it called celiac disease?
A: Celiac comes from the Greek word for “abdominal.”

Q: What complications are associated with celiac disease?
A: 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.

Q: What conditions are associated with celiac disease?
A: 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)

Q: Should other members of my family be tested for celiac disease?
A: 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.

Q: Can celiac disease be prevented?
A: 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

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 1/100^th 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.