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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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9 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

  3. Melissa

    Have you done any articles on DGP IGA tests and how accurate they are? I talked to you about a year ago after my diagnosis and you were so nice to explain everything to me. I’m just really interested in learning more about this blood test and why it is used (I had one doctor tell me that it doesn’t mean anything and others that said it is definitely an important test for diagnosing celiac). I was negative on all test except this one blood test. I just hate not being taken seriously by doctors especially when I have to go to the ER or another doc apt, when they see my negative biopsy and my one positive test, they just don’t listen to me about the importance of being GF. I’m also intolerant to 30 different foods and get sick very quickly. I worry about them giving me a medication containing gluten. They are just so mean about it and I’m so frustrated!

    1. Jess Post author

      Hi Melissa,
      Yes, I remember you. I haven’t seen that much in the literature recently about the usage of the DGP for testing for adult celiac disease (it is still superior for kids) outside of a recent study in which it was found to be a good blood marker for non-responsive celiac disease (celiac disease that does not improve on the GF diet). I wonder if you were in just the earliest stage of celiac when you had your blood drawn, prior to going GF. It sounds like you clearly get really ill from gluten. I have interacted with some in similar shoes who have went ahead and diagnosed themselves as having celiac disease and others who call themselves gluten sensitive. Both run in families, and it seems, often the same families.
      Also, I have the same worry about being exposed to medications that include gluten, so I had my hospital flag me as having a gluten allergy (even though I don’t).
      I wish that I could have more answers for you.
      There is a blood test in development that will only require a 2-3 day gluten challenge to get a celiac diagnosis, so perhaps this is something that may be helpful to you in the future if you want to try again to get a clear-cut answer.
      Jess

  4. Sarah Mueller

    This info is very helpful. My husband was diagnosed last summer, and my two older children were screened. Labs are coming back indicative for celiac so the GI specialist wants to go forward on biopsies on my 3 and 1 1/2 year old. I am nervous about having them go under anesthesia and wondering if the biopsy is negative will the test need to be repeated when they are older? Is a biopsy very reliable for a 1 1/2 year old? My three year old doesn’t have symptoms (other than very skinny and frequent mild constipation), so I also am wondering why the intestine would be affected without symptoms? I thought of these questions after my appointment of course. I am a little bewildered that both girls would have it when I had understood the risk was 10-15% for first degree relatives. I keep contemplating whether it is worth getting the official diagnosis or just trying a gluten free diet and seeing how they respond. Thoughts?

    1. Jess Post author

      HI Sarah,
      Thank you for writing. I am in a tricky situation as to not being able to provide true medical advice, but I can share my thoughts with you as if you are a friend, if that’s okay.
      I would proceed forward with endoscopies before going GF so that you can get a firm diagnosis right now, if either or both of them have it. Toddlers with celiac disease can have normal blood antibody tests, but have intestinal damage on biopsy, but the reverse is not often true (unless your doctor tested for the now obsolete antigliadin antibodies, which can be falsely positive). If either of them have a positive biopsy now, then you will know that they need to be GF for life and your kids will also need all of the testing and monitoring that kids with celiac disease need (regular checks for anemia, vitamin deficiencies, etc.) Some cases of pediatric celiac disease can be totally silent, and others can have just mild symptoms, like you describe for your 3 yo. So, with your husband’s diagnosis, and their abnormal antibodies, you best have them fully evaluated if you can.
      The other thing to keep in mind is that there are several promising celiac drugs in development (not to enable celiacs to be able to go back to eating gluten again, but to help prevent damage from cross-contamination) as well as a celiac vaccine (will enable celiacs to return to a normal diet), and almost all will require one to have biopsy-confirmed celiac disease.
      I hope this helps.
      Jess

      1. Sarah Mueller

        That is super helpful and encouraging to know things are in the works if they are tested positive. Thanks so much for your reply.

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