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There are many ways you can help children and their families get the care they need.
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.
We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”