This is a question that seems to come up again and again. I have personally struggled with figuring this out over the last few years as well, so I have read as much as I can about the topic of screening during childhood.
Earlier today I read a Medscape article titled “Celiac Disease: Which Children Should be Tested?” which was written by Lara C. Pullen PhD, and published online on March 23, 2015. In this article, Dr. Pullan does a great job of summarizing the current evidence and opinions about which groups of children should be screened/tested for celiac disease, and emphasizes that this is important because many children with celiac disease do not have symptoms.
For the most part, experts agree that children with risk factors for celiac disease, including those with a first degree relative (sibling and/or parent) with celiac, Down Syndrome, Turner Syndrome, William’s Syndrome, type 1 diabetes, and other autoimmune diseases, such as autoimmune thyroid disease, should be tested for celiac disease. Likewise, children with overt symptoms of celiac, including recurrent abdominal pain, diarrhea, abdominal distension, and poor growth, should also be tested.
Dr. Rita Verma, a pediatric gastroenterologist from the Children’s Hospital of Philadelphia, is quoted several times throughout the article. Although Dr. Verma would prefer that ALL children be screened for celiac disease, she emphasizes that it is important for pediatricians to screen when they have even the slightest suspicion that celiac disease may be present. She sees many children with atypical symptoms of celiac disease in her practice, and these atypical symptoms can include anemia, chronic constipation, headaches, seizures, alopecia (hair loss), tiredness, pancreatitis, irritable bowel syndrome, and unexplained elevated liver enzymes.
At the minimum, celiac antibody screening blood tests should include the following: a total immunoglobulin IgA, anti-transglutaminase (anti-TTG) and anti-endomysial IgA antibodies. A child who tests positive for both TTG and endomysial antibodies likely has celiac disease and should be referred to a pediatric gastroenterologist for further evaluation.
Dr. Verma emphasizes that a dietary history should be obtained from parents prior to celiac blood screening, as some children between ages 2 and 3 may not eat enough gluten for their tests to be positive in the presence of celiac disease. If this is the case a “gluten challenge” may need to be performed in order to get accurate celiac testing results. Please refer to this link for recommendations on the amount and duration of gluten needed for adequate testing for celiac disease.
For more on celiac disease in children and “high risk” pediatric groups, you can refer to my previous post from January 2014 that summarizes an excellent review article by Dr. Guandalini. He is one of the world’s experts on pediatric celiac disease and is at the University of Chicago.
Out of curiosity, have any of your children been diagnosed with celiac disease after having only “atypical” symptoms? Have any been totally asymptomatic? If so, I would love to hear your experience(s) in the comments section. Thank you in advance for your willingness to share.
Also, if you are looking for a good laugh (or maybe cry) I encourage you to create a Medscape account and actually take the time to read through comments written by medical professionals–it will make you realize that how badly celiac awareness is needed in the medical community.