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.

Rays of light

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