If you suspect your child has celiac disease, it is best to get a confirmed diagnosis. The diagnosis of celiac disease in children often starts with blood testing and is typically followed by an intestinal biopsy. This is a safe, non-surgical procedure.
Contact your child’s pediatrician and request a celiac disease blood test. Bring your completed Celiac Symptoms Checklist along to help discuss your child’s signs and risks.
The pediatrician will order one or more of a series of blood tests to measure your child’s response to gluten.
Currently, recommended tests include:
*It is critically important to continue feeding your child a normal, gluten-containing diet before getting tested for celiac. Eliminating gluten before the blood test could alter the results and lead to an incorrect diagnosis.
Your child’s pediatrician may recommend that you see a pediatric gastroenterologist to confirm the diagnosis with an endoscopy. Read further for more information on endoscopies.
Some pediatricians may still recommend a trial gluten-free diet to see if that relieves symptoms. If symptoms subside on a gluten-free diet, it is likely that your child has non-celiac gluten sensitivity and should remain on a gluten free diet. However, this child would not be diagnosed with celiac disease.
If your child continues a normal gluten-containing diet, the pediatrician may recommend retesting for celiac disease in 1-3 years.
Blood tests are not always accurate in very young children. If your child is less than 3 years old, you may be advised to see a gastroenterologist instead of relying on blood tests results.
An intestinal biopsy is considered the “gold standard”’ for celiac disease diagnosis and can give you a definitive answer to your child’s health problems.
The biopsy is taken during an upper gastrointestinal endoscopy (EGD), which is a very safe and routine procedure. Some preparations are needed, and your child may be lightly sedated during the procedure. The actual endoscopy only takes about 15 minutes.
During the endoscopy, a pediatric gastroenterologist will use a small flexible camera scope to examine your child’s intestinal wall/lining. They will be looking for damage or flattening of the villi (small fingerlike projections that are responsible for absorbing nutrients from food). This damage is the hallmark of celiac disease. A few biopsies will be taken for microscopic review to confirm your child’s diagnosis.
Genetic testing is another way to rule out celiac disease and could be a good option for your child. The test will identify whether your child has the HLA-DQ2 or HLA-DQ8 genes, which are present in 95% of celiac disease patients. Without these genes, it is nearly impossible to develop celiac disease.
However, while genetic tests can be useful in ruling out celiac disease, they cannot diagnose patients with celiac disease.
If your child tests positive for the HLA-DQ2 or HLA-DQ8 genes, it means that your child is potentially at risk for developing the autoimmune disease. However, it is important to know that a high percentage of healthy people without celiac disease also have one or both of these genes. Speak with your child’s pediatrician to determine your next course of action.
If your child tests negative for the HLA-DQ2 or HLA-DQ8 genes, it indicates that your child is very unlikely to develop celiac disease.