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Update on Celiac Disease Screening in Infants and Toddlers

There are multiple reasons why a young child may need to be evaluated for Celiac Disease. The most obvious reason is if he or she has symptoms, such as chronic diarrhea, poor growth, and/or anemia. Other reasons include having a first degree relative (parent or sibling) who has Celiac Disease or having another autoimmune disorder, such as Type 1 diabetes.

The main blood tests to screen for Celiac Disease are tissue transglutaminase IgA (TTG IgA) antibodies and endomysial IgA (EMA IgA) antibodies. These tests are highly sensitive, which means that if the tests are negative, Celiac Disease can be ruled out most of the time. The problem with using these tests in infants and toddlers is that the sensitivity of these tests is much lower for children under the age of 2 than it is for older children and adults. Some believe that this is because young children with Celiac Disease have not had enough time to develop TTG and EMA IgA antibodies which can be measured. Needless to say, there are probably many toddlers with Celiac Disease who are walking around undiagnosed because they did not have elevated TTG and/or EMA IgA antibodies when they were tested.

Deamidated gliadin peptides (DGPs) are a new test for antibodies against gliadin and are being used with increased frequency for screening for Celiac Disease in the U.S. and Europe. A group of Italian researchers recently studied the utility of using DGP IgG antibodies to screen for Celiac Disease in children under the age of 2. They found that 100% of children under the age of 2 with biopsy-proven Celiac Disease had abnormally high DGP IgG antibodies on blood testing. They also found that DGP antibodies were abnormally high in 4 toddlers who had malabsorption (diarrhea) but who did not have a biopsy consistent with Celiac Disease. One of the 4 children with an abnormal DGP did have mild villous blunting and eventually developed Celiac Disease. The other 3 children with diarrhea and elevated DGPs all had the genes that predispose to Celiac Disease. They plan to follow these 3 children closely for the development of Celiac Disease. The researchers also found that DGP levels correlate very well with the extent of damage on the duodenal biopsies of the children with Celiac Disease and postulate that in the future, children with markedly elevated DGP antibodies may not need to be biopsied for diagnosis with Celiac Disease.

Out of curiosity, I went to the internet sites of some of the major labs that perform Celiac Disease blood screening tests. Labs which DO include DGP IgG antibodies on their celiac panels include Prometheus, Labcorp, ARUP, and Mayo Medical Labs. Labs which DO NOT include DGP IgG antibodies on their celiac panels include Kimball Genetics and Quest Diagnostics (as of 4/17/2013).

If you suspect that your young child may have Celiac Disease, but he or she did not have positive antibodies, it may be helpful to find out which lab their blood was sent to so that you can learn whether or not DGP IgG antibodies were part of the testing.  I recommend that you discuss any concerns with your child’s physician.

References:

1. Antibodies to deamidated gliadin peptides: an accurate predictor of celiac disease in infancy. Amarri, S., et al. J Clin Immunol. Published online 4/5/2013.

2. ARUP Consult. A Physician’s Guide to Laboratory Test Selection and Test Interpretation. Celiac Disease. www.arupconsult.com/assets/print/CeliacDisease.pdf.

3. Screening for celiac disease in average-risk and high-risk populations. Aggarwal, S., Lebwohl, B, and Green, P. Therap Adv Gastroenterol. Jan 2012; 5 (1): 37-47.

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4 thoughts on “Update on Celiac Disease Screening in Infants and Toddlers

  1. Dana

    This looks like a really important article for me to read, and I will when I’m not so exhausted :)

    In the meantime, I added your blog to my list of awards! Which I meant to do in the first place, but since I’m so tired (see above) I forgot. Here is the link, feel free to spread the blog love by nominating your own list of blogs, or just bask in the honor. No pressure either way!
    -Dana
    http://celiackiddo.wordpress.com/2013/04/17/spring-is-in-the-air-finally-and-awards-too/

  2. Jess Post author

    Hi Dana,
    Thank you for including me in your list of blogs! I really appreciate it and have enjoyed getting to “know” you over the past few months. It has been invaluable for me to get your perspective on being a mom to a young child with Celiac Disease through your blog.
    As for the exhaustion, I am with you there and I have no advice to give, other than to let you know that you are not alone!
    Jess

      1. Jess Post author

        Hi Jennifer,
        Unfortunately, no. In order to be all of these antibody tests to be accurate, including the DGP IgA, a child needs to be eating gluten. The most recent recommendation that I’ve heard, from one of the doctors at the International Celiac Disease Symposium in Sept., is at least 1/2 slice of bread per day for a young child.
        The approach that my husband and I have taken is controversial, and I’ll share it, with the caveat that although it is right for us, it may not be the best approach for everyone. Our home is 100 percent GF because I am one of the “super sensitive” Celiacs. My 4 kiddos can all eat gluten containing foods outside of the house (I.e. crackers at school, donuts after Sunday mass, pizza at parties, etc). This enables them to all have a low dose of gluten in their systems, so that if/when they need antibody screening (current recommendations are every 2 to 3 years in an at risk child in the absence of symptoms) that the screens will be adequate. My oldest, who just turned 8, has started to complain of abdominal pains after eating gluten, so we are going to be a little more generous with her intake outside of the home over the next week, so that her tests can be as accurate as possible. I have had people write to me that I am poisoning my children by letting them eat gluten, but the thing is, none of them currently have celiac disease. Also, as much as I’d like to be able to keep them in a GF bubble, they are going to be exposed sooner or later…
        I am not well versed in the more non traditional stool tests and saliva tests for gluten sensitivity I cannot speak to their accuracy in the already GF child. I hope that this helps! This is, unfortunately, a very gray area right now. Please let me know if you come across any advice or information!
        Thanks also for reading!
        Jess

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