Tag Archives: celiac disease screening

IMG_3222.jpg

Which Children Should Be Tested For Celiac Disease?

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.

 

 

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.