I had the opportunity to moderate a discussion on celiac disease in children during my local celiac support group meeting last week. One of the topics that we discussed was how often the siblings (or children) of those with celiac disease need to be screened. Research has shown that between 5 to 10% of first degree relatives of those with celiac disease will eventually develop it, and there is consensus that all at-risk children need to be tested at least once.
I have opted to have all of my kids screened with celiac antibody panels starting at age 4, in the absence of symptoms, and then we’ve planned on having them re-screened every 2 to 3 years, as we know that celiac disease can develop at any time during life. That being said, as my group discussion continued, I felt sort of dumb, as I was unable to recall where I had heard the advice about repeated screening of at-risk children. And I started to worry that perhaps I am having my kids tested too often…if you are new to my blog, you will learn that I get a bit neurotic about things from time to time.
My youngest, Claire, went to see her pediatric gastroenterologist a few days after the support group meeting, and he told me that he recommends that all siblings of Celiacs have an initial celiac antibody panel done, but that he recommends repeat testing only if symptoms develop.
I became more confused, so I decided to explore PubMed as well as the internet, to see what I could find…
The first article that I came across is called “Screening for Celiac Disease in Family Members: Is Follow-Up Testing Necessary?” written by Drs. Goldberg, Kryszak, Fasano, and Green and published in 2007. They found that of 171 family members who were negative for celiac disease on initial screening, 3.5% did have elevated celiac antibodies on repeat testing. The average time interval between the normal baseline celiac screening tests and development of celiac disease was 1.7 years. Interestingly enough, in this study, most of the family members who developed celiac disease did not have any symptoms. Based on their results, the authors of this study suggested that at-risk family members be screened every 4 to 5 years. Unfortunately, I was unable to find any other studies that have examined this topic.
The University of Chicago Celiac Center recommends that testing in at-risk individuals occur on a regular or periodic basis. According to another one of my other favorite celiac websites, CeliacCorner, “Some Celiac research centers recommend screening only for family members who are symptomatic, though this is not a consensus among the medical community. It is agreed upon that children should be screened, because they may be too young to describe symptoms accurately. Important to note: Even if the antibody blood test is negative at the time of initial testing, Celiac can be triggered later at any point in life, so follow-up testing should occur for family members, certainly if experiencing classic gastrointestinal symptoms.” However, I was unable to find information on the recommended time interval between screening tests.
Do any of you have any resources and/or guidance for how often at-risk children, without symptoms, need to be screened for celiac disease? Am I having my kids tested too often, or not often enough? Any advice would be much appreciated. Thank you!
Also, if you are reading this because you are trying to figure out whether or not your child needs screened for celiac disease in the first place, you can check out my post from 2013.