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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.

11 thoughts on “Should Your Child be Screened for Celiac Disease?

  1. Danielle

    Thank you so much for sharing how you approach this! I have been trying to figure out what to do for my daughter (she is currently 10 months). She has gotten some gluten at day care (stolen other kids cheerios and had some mac & cheese) and my friends mom gave her a piece of bread. But since I am gluten free and run mainly a GF household (90-95% because hubby refused to give up his gluten!), she does not get it on a regular basis, therefore, my understanding is, an antibody test would not be effective or worthwhile for her.
    So, my question is, does that mean your children get gluten until symptoms appear that could be symptomatic of celiac or the blood test comes back positive?
    Thank you so much for your help!

    1. Jess Post author

      Hi Danielle,
      Thank you for writing. Yes, my kids will continue to eat gluten when they are outside of our home unless they develop Celiac Disease or develop signs of non celiac gluten sensitivity. This has not been an easy decision to make, as I would love to keep them all in a gluten free bubble for the rest of their lives, but I know this is not possible! During one of the most recent Celiac lectures I attended, the speaker, a GI doc/integrative medicine specialist stated that one needs to eat about 1/2 piece of toast 3-4x a week for the Celiac antibody tests to be reliable (in adults). For children we are definitely in a gray area, so I feel the benefits of having small exposures to gluten (and hence, the ability to have reliable Celiac antibody testing) outweigh the risks. However, it is a very individual decision, and there are many others who approach it differently.
      Please let me know if you have additional questions.
      Jess

      1. Danielle

        Thank you so much for your feedback! That was really helpful! You are right it is such an individual decision, and not an easy one to make! I didn’t even realize for adults that much was needed for a positive antibody test! That makes me feel more comfortable with allowing her to have a small piece of bread once a while until we make a final decision!
        Cheers!

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  3. Laura B

    What about children that react so terribly to any amount of gluten, can they get a diagnosis somehow? Here in Australia you really need a formal diagnosis to access support services, but we have a two year old in the family who reacts so awfully (and always has) to the point of being hospitalized for intussusception. Do you have any experience or advice in a situation like this please?

    1. Jess Post author

      Hi Laura,
      I don’t have any personal experience with this, nor have I met anyone in this situation. I have heard of adults receiving a “post facto” diagnosis of celiac based on improvement in symptoms when GF though.
      As doctors we are not supposed to do any harm to our patients (and in this case, it sounds like a gluten challenge would be harmful), so you are all in a difficult position.
      If I were you I would talk to my pediatrician about getting a diagnosis based on severe symptoms to gluten ingestion, but I’d probably get my child evaluated by specialists to make sure that other problems, like a wheat allergy or eospiniphilic esophagitis, was not the culprit for the reaction (rule out other diseases that could make a child sick from eating wheat). You’d want to know if there’s a food allergy so that parents would always carry an EpiPen, if the reactions are as severe as what you describe.
      I hope this helps a little. I’d be interested to see what others recommend.
      Jess

  4. Brit

    Our 18 month old just had the igG ttg test done — the results came back “slightly positive” whatever that means. Under 6 was negative, over 9 was positive and he was a 7.5. Our pediatrician doesn’t know much about celiac and is sending us to a specialist. We have no clue how long it will take to get an appointment there, in the meantime we are continuing a normal diet, but it is so hard not knowing. His symptoms are slowed growth, and diarrhea for 2 months that just suddenly went away about a week ago. Any thoughts about these test results?? Thanks!

    1. Jess Post author

      Hi Brit,
      With the borderline positive TTG antibody, history of diarrhea and slow growth, I agree with your current plan to have your son evaluated by a gastroenterologist. He or she is likely going to recommend an endoscopy with small bowel biopsy for diagnosis. We are in a similar situation to you with our youngest, who just turned 2, and she is going to get her biopsy in 2 weeks. It sounds like you are doing everything you can for him.
      Good luck!
      Jess

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  6. Melissa

    Hi,
    I just discovered your website and I am loving reading all the information. I was diagnosed 7 years ago after a 9 month stint of strange symptoms (non of which were gastrointestinal)! I also have a cousin who has Celiac. I have 2 questions for you…
    1. I have a 14 month old. He has been relatively healthy besides a bad bout of reflux as an infant. We saw a pediatric gastrointerologist and she and I discussed Celiac testing. She said they do not test for Celiac under age 2. He was born 4 weeks early and was small and has continued to stay small. He has gone from 2nd percentile in weight to 16th but he is still at the lower end. He hasn’t had any symptoms of CD but I still worry that he might have it and I’m hurting him by giving him gluten. When I introduced gluten at 8 months, he had no reaction and did fine. Would it be beneficial to get the blood test or is he too young?
    2. I was just diagnosed with Interstitial Cystitis and I am now having to modify my diet all over again. Could this second “autoimmune” type disease be related to mast cells? My urogynocologist said that when he examined me there was a strong histimine reaction and lots of redness and flushing. He has me on an antihistimine but I’m curious about what else I can do to help.
    Thanks!

    1. Jess Post author

      Hi Melissa,
      You have excellent questions and I will do my best to answer them.
      For #1, the current recommendation is to start screening high risk kiddos who do not have symptoms of celiac at age 3, and then every 3 years. If they have any concerning symptoms, they need to be screened right away. This came from Dr. Guandalini at the celiac preceptorship that I attended at the University of Chicago last month.

      #2 is a bit more complicated. I am really interested in the link between celiac and other AI conditions and mast cell disorders because I have mast cell activation syndrome (MCAS) in addition to celiac. I think that there are a lot of us in the same boat. I was fortunate to be able to get tested through my local allergist, but I was the one who had to initiate the testing. For the first 18 months or so after diagnosis I was on antihistamines two times/day, a low histamine and sulfite free diet, cromolyn sodium and quercetin. My symptoms have calmed down quite a bit and I am now on an antihistamine once a day and quercetin and I’ve been able to liberalize my diet quite a bit. Interestingly enough, my MCAS/histamine symptoms improved a TON after I started taking a high potency probiotic containing lactobacillus and bifidobacterium. Not sure if it’s coincidence, a placebo effect, or neither.
      Anyway, please ask questions at any time. It’s being able to interact with people like you that has inspired me to keep this page going.
      Jess

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