Tag Archives: celiac testing children

gab

Frequency of Screening for Celiac Disease in Children with Siblings and/or Parents with Celiac Disease

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.

girl with sandwich

Should Your Child be Screened for Celiac Disease?

I have four children, who are all at high risk for developing Celiac Disease. I was diagnosed with Celiac Disease 3 years ago, but have had symptoms since early childhood. My husband does not have Celiac Disease, but he carries one of the two main Celiac genes, DQ2. Due to my children’s risk, I have had their pediatrician screen them when they turn 4 years old with a Celiac panel (blood test with Celiac antibodies). My third child, Gabby, just turned 4 so she will have her first Celiac panel at her well-child visit in a few weeks, along with all of her four year old immunizations. I think I’ll try to get my husband to take her!

Since starting this page I have had a lot of people ask me if their children should be screened for Celiac Disease. The latest, evidence-based, recommendations for screening are as follows:

Children should be screened for Celiac Diease if they have any of the following symptoms:

  • short or underweight for age, especially if growth has slowed down
  • diarrhea that lasts for more than a few weeks
  • recurring constipation, abdominal pain, and/or vomiting
  • tooth problems called dental enamel defects
  • delayed puberty
  • iron deficiency anemia that does not respond to treatment with supplements

“High risk” children who belong to the following groups should also be screened (even if they have none of the above symptoms):

  • 1st degree relative (child or sibling) of someone with Celiac Disease
  • Type 1 diabetes
  • Down syndrome
  • Turner syndrome
  • Selective IgA deficiency
  • Williams syndrome
  • Autoimmune thyroid disease

The first step in screening is to have Celiac antibodies measured in the blood. For small children, especially those under the age of 2, it is important for the antibody tests to include the deamidated gliadin peptide, or DGP, antibody. Please see my post from April for more details. While most Celiac panels include TTG IgA and IgG antibodies and endomysial IgA and IgG antibodies, not all include the DGP antibodies.

The second step in testing, if Celiac antibodies are abnormal, and/or there are enough symptoms that Celiac Disease is suspected, is to have an endoscopy and biopsy. During the endoscopy a flexible tube with a camera on the end is inserted into the mouth, down the esophagus, and into the small intestine. Small pieces of the small intestine (biopsies) are obtained, which are evaluated by pathologists. In Celiac Disease, the small fingerlike projections (villi) of the walls of the small intestine are flat, or blunted, which impairs the ability of the body to absorb essentials vitamins and nutrients.

In the absence of symptoms, we are having our kids have Celiac antibody tests every two years or so starting at the age of 4. If any of them develop overt symptoms of Celiac Disease and/or have abnormal antibodies, we will go the route of having an endoscopy and biopsy done to be able to have a firm diagnosis of Celiac Disease. Although we keep a strictly gluten free household, for my sake, as I am very sensitive to any gluten cross-contamination, we do allow our older kids to eat gluten outside of our home. This enables them to have a small “dose” of gluten in their systems on a regular basis. We feel this is important because it enables us to monitor them for symptoms when they do eat gluten and will enable their Celiac blood tests to be as accurate as possible. One of the most common causes of falsely negative Celiac antibody tests is that patients are already gluten free when their tests are performed.

For more information on Celiac Disease testing I recommend that you check out the National Foundation for Celiac Awareness and the University of Chicago Center for Celiac Disease Center websites.

Reference: Patient information: Celiac disease in children (Beyond the Basics). Authors Ivor D Hill, MD and Anne Roland Lee, MSEd, RD, LD; Section Editor William J Klish, MD; Deputy Editor Alison G Hoppin, MD. Literature review current through: May 2013. This topic last updated: Dec 3, 2012. www.uptodate.com.