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 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.

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.

Celiac Disease | Symptoms & Causes

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 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).

Celiac Disease | Diagnosis & Treatments

How is celiac disease diagnosed?

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 in their small intestine. For the endoscopy, your child will be given medicine to make them feel relaxed and sleepy and will receive anesthesia.

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 the intestine. This will allow the tests to be as effective and informative as possible.

What’s it like to have an endoscopy?

Follow along as Nathan prepares to undergo an endoscopy at Boston Children’s Hospital.

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. Infants and small children should not be tested until they reach the age of 2 or if there are clear signs testing should be done earlier.

What are the treatment options for celiac disease?

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 related to celiac disease.

A registered dietician can meet with you and your family to 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

What will my child be able to eat?

You may be surprised by the variety of foods that your child can eat — and that’s what our registered dietitians 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.

When will my child start to feel better?

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.

Is any amount of gluten safe for my child?

While the goal is to minimize exposure as much as possible, there will be times when some gluten gets in.

Could my child be exposed to gluten outside of food?

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.

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

A small number of children with celiac disease don't see improvement on a gluten-free diet. This could be because:

The child hasn't been adhering to the gluten-free diet
There is another condition that is affecting the intestine
The child has been inadvertently consuming gluten in some form
In extremely rare cases: the disease isn’t responding to diet alone and medications, such as steroids or immunosuppressants, are needed

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.