Celiac Disease

What is celiac disease?

Celiac disease, which comes from the Greek word for “abdominal,” 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.

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.

Celiac disease is far from uncommon. An estimated 1 in 133 people in the U.S. are affected by the condition — typically more girls than boys — and many are undiagnosed.

As you build up your knowledge, living with celiac disease usually gets a lot easier with time. There is no “cure,” but lifelong avoidance of gluten through a gluten-free diet is an effective treatment. The damage to the intestines will heal, and your child’s intestine will look perfectly normal, so long as gluten is avoided.

Is celiac disease a food allergy?

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.

What are the symptoms of celiac disease in children?

The symptoms of celiac disease can be very different from child to child and also dependent on age. The classic celiac disease 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 atypical signs and symptoms of celiac disease in children include:

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

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 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 them checked out. If left untreated, the damage to the intestines may increase the risk of developing some cancers and autoimmune diseases.

What causes celiac disease in children?

Doctors haven’t yet figured out exactly how someone develops celiac disease. We do know that children 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 celiac disease, 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)

Conditions associated with celiac disease include autoimmune diseases (e.g., type 1 diabetes, hyperthyroidism, hypothyroidism) and genetic disorders (such as Down syndrome, Turner syndrome, and Williams syndrome).

Can celiac disease be prevented?

This is an area of ongoing research. There has been some evidence that introducing gluten while breastfeeding (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.

How we care for celiac disease in children

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 diet and lifestyle. We also have a vibrant and active support group, Celiac Kids Connection, with more than 350 member families.