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.

15 thoughts on “Frequency of Screening for Celiac Disease in Children with Siblings and/or Parents with Celiac Disease

    1. Jess Post author

      Hi Rosie,
      Thanks so much for taking the time to comment. You bring up a very good point.
      Between 40 to 50% of Americans carry one of celiac genes, but only 1 to 2% of those with the celiac genes go on to develop Celiac Disease, so genetic testing is not often helpful. In my case, we know that both my husband and I each carry 2 copies of genes associated with celiac disease, so we know that all of our kids are equally at risk. You can argue that if a child does not carry one of the main celiac genes that he or she will not develop celiac disease, but non celiac gluten sensitivity could still be a problem, and 1-2 percent of people with celiac disease do not carry the main celiac genes (HLA-DQ2 and DQ8), so there is also a possibility that it could be missed if genetic testing was all that was done to screen. There was a poster at the International Celiac Disease Symposium last fall showing that 9% of Brazilian celiacs were negative for the 2 main celiac genes…I think there’s going to be more research showing this in the future.
      Jess

  1. Paula @CeliacCorner

    Jess, you ask a very good question … and I’ve been searching for the last hour to try to find a definitive answer (as to how often at risk children should be re-tested). I’m sure you’ve searched well for any recommended guidelines, so I won’t continue to Google any further :)! Here is my personal plan for testing my children: I had them tested a few years ago at their annual, and repeated the blood work annually for two years (I was obsessed at that point!). Similar to what you have been doing, I’m now having them tested every two years, whether they have symptoms or not. I did have them genetically tested and one son is in the “high risk” category. Going back to the statement by Univ. of Chicago … “Regular (?) antibody testing is KEY to early diagnosis”, so I want to catch it as early as possible, my “regular” is every two years. ps. thank you for your kind comment about CeliacCorner.

    1. Jess Post author

      Hi Paula,
      I am so glad that you saw this, I had planned on “tweeting” my link to you to get your attention but I have been bad about doing anything social network related lately (feels like there’s a bad GF vibe going on right now, not sure if I have chosen the wrong people and sites to follow).
      It makes me feel much better that you are also doing screening on your boys every 2 years as well. I am going to continue doing the same, I am just surprised that no one’s published anything on this since 2007.
      So far my oldest has been screened twice, my 2nd and 3rd have each been screened once (they are only a year apart), and my youngest is already showing signs and symptoms at age 2…her endoscopy and biopsy are next week.
      I hope you are well. Your website is a gift to all of us.
      Jess

  2. Raquel Benati

    Olá!

    Escrevo do Brasil. Sou celíaca, tenho 2 filhas. A primeira ( Beatriz) é celíaca. A segunda filha (Nina) não apresenta ainda a doença celíaca, mas tem DQ2 positivo. Eu faço teste de sangue anualmente. Na minha família eu fui a primeira a ser diagnosticada – atualmente já somos 6 celíacos com testes positivos e todos eram assintomáticos quando foram testados.

    Parabéns pelo blog!

    Raquel Benati
    http://www.riosemgluten.com

    1. Jess Post author

      Hi Raquel,
      Thank you so much for sharing your advice. I put your comment into Google translate and am going to cut and paste it for other English speakers:

      Hello!

      Write from Brazil. I am a celiac, I have 2 daughters. The first (Beatriz) is celiac. The second daughter (Nina) still does not have celiac disease but have DQ2 positive. I do blood test annually. In my family I was the first to be diagnosed – we currently have 6 celiacs tested positive and all were asymptomatic when tested.

      Congratulations on the blog!

      It is helpful to know that you test for daughter every year and that all of the other celiacs in your family have not had ANY symptoms! I am still working on convincing my family members to get tested.
      It is nice to “meet” you on here. Thanks so much for sharing your experience!
      Jess

  3. Paula @CeliacCorner

    Hoping for the best (a negative result!) for your youngest! Thank you so much for the last line in your commment …. this means the world to me, and I am sending those exact thoughts right back to you regarding your efforts with The Patient Celiac! You are helping many.

  4. Amy

    Dear Jess,

    I am so glad I found your site. It is current, smart, and explains many things that my doctor could not clarify for me.
    I think you need to what you feel is the right for your child. I lived most of my life with Celiac disease; however, I was not diagnosed until I was in my late 30’s as my symptoms were far from typical. Thankfully, I was diagnosed in time (thanks to my father who is not a doctor!) to have my beautiful daughther two years ago. I could not get pregnant while I was eating gluten and did not know why.
    I am wondering about my child as well and watching for signs.. but as I said my symptoms were not usual (even as a child).
    My doctor is against testing my child if she shows no symptoms – I will have further discussions with him on this as I disagree. I don’t want her to be sick if we can determine that she is celiac before she starts having problems.
    I discovered Biocard (you can google it), an at-home celiac test that only requires a little poke on the finger. It can be purchased at the pharmacy here in Canada.
    I know that this test may show a false negative result (especially with smaller kidsd); however, it may be a start if the results are inconclusive or positive. I will try it at home on my daughter as I feel this will be less stressful for her. Maybe it is an option for you (your children) if you don’t want to put them trhought the whole blood-drawing process that often.

    1. Jess Post author

      Hi Amy,
      How wonderful that you were able conceive after going GF! Thanks so much for sharing your experience and thoughts. I agree with you that it’s best to try to pick celiac up before a lot of damage is done. Like you, I was not diagnosed until my 30’s.
      I had heard of the Biocard but did not realize that it is available in Canada (I thought it was only available overseas). Thanks for the suggestion. If I do decide to go this route in the future, and am still blogging, I’ll be sure to write a post about it.
      Jess

  5. Dhead

    I am glad I came across this post. Well done!
    To be honest, I believe I have celiac disease. I started my gluten free blog, Gluten Free Thin under the impression that I have a gluten intolerance, not CD. I have read countless stories about people who finally decided to get tested after years or feeling like garbage. These stories are SO similar to mine that it is scary.
    I know my body the best and can tell you that something has not been right for a very long time. I have had stomach issues since I was a kid. Never really thought too much of it though and I try to stay away from the doctor as much as I can. So stupid, I know. It doesn’t stop with the stomach issues. I could go on and on but I will save the juice for my blog post!
    My dilemma now is trying to figure out how to get tested. Here’s the thing: I guess you could put me in the same category as the person who sent you the email in that I may slip up from time to time and eat something with gluten in it. I notice side effects right away. My stomach starts to rumble, the food doesn’t digest, my fingers swell up, my stomach swells up and so on. With that said, eating gluten from time to time isn’t something I consider to be necessarily dangerous to my body. However, if I have celiac disease now we are talking about a different animal. Then it IS dangerous for me to be eating gluten. Then I really have to watch for cross-contamination and inspect labels with scrutiny. I know a lot of you will say if you are in question about whether or not you are a celiac then don’t ever eat gluten again. That’s not really the point though.

    The point is, it is annoying not knowing whether or not I have this auto-immune disease. And for what I am gathering, it is almost impossible to get accurate test results if you are currently staying away from gluten. People have suggested I start eating gluten again for a few weeks so that I can a definitive answer. Well my answer to that is a big fat NO. Why would I poison my body for a few weeks when it could be ripping apart my small intestine? I just don’t see the logic in that. There has to be a better way. How about a genetic test? I don’t know all that much about it but have heard it can be done if you are not eating gluten.

    So I am trying to figure out what to do and how I can find out if I have friggin’ celiac disease or not. I would greatly appreciate some help and suggestions!

    Thanks,
    DHead

    1. Jess Post author

      Hi DHead,

      It’s nice to hear from you and great to know that you are sharing your story through your blog.
      I feel like I have seen your name on another celiac website, perhaps Gluten Dude’s.

      You have some great questions, and unfortunately, I do not have great answers for you.
      You are correct that the only way to get totally accurate celiac testing done once you are already GF is to do a gluten challenge, which, depending on the source, requires at least 2 weeks of regular gluten consumption prior to an endoscopy and small bowel biopsy. I get so ill from just traces of gluten that I know that my body would not be able to withstand it, but I did very recently go this route with having one of my own children tested.

      The genetic blood tests look for the 2 main genes that predispose to celiac disease, that are called HLA DQ2 and HLA DQ8. Up to 98% of celiac patients have one of these 2 genes, so most experts state that you must have one of these 2 genes for celiac disease to develop. That being said, approximately 40% of the US population has the HLA DQ2 gene (and only 1% of the population has celiac disease), so just b/c one has the genes, it doesn’t mean that he or she has celiac disease. So, genetic testing can let you know whether or not you are at risk, but can not tell you whether or not you have celiac.

      Many of us who are adults with celiac disease have had other medical problems/diagnsoses prior to being diagnosed with celiac, including iron deficiency anemia, Vitamin B12 and/or D deficiencies, thyroid problems, periphral neuropathies (nerve inflammation), severe gastroesophageal reflux, etc. If you’ve had some of these problems, it may be a clue that celiac is/could be your underlying issue. Many of us also have family members who are diagnosed.

      How long have you been GF? If it’s not been too long, say a month or 2, you could still have elevated celiac antibodies on blood testing. It’s not unusual for it to take a few months for antibodies to normalize after going GF.

      I hope this helps. I wish that I could be more helpful.

      Jess

  6. DHead

    Hi Jess,

    I wrote another comment but I am not sure if it posted or got deleted. It was a long one! :)

    At this point, I need a diagnosis. There is a big difference in knowing that a slice of pizza will give me a stomach ache and knowing that a slice of pizza could be killing me slowly. I wrote a blog post about my dilemma that you can check out here: http://glutenfreethin.com/could-i-have-celiac-disease/

    I would really appreciate if you would take a look and maybe give a few more suggestions :)
    Thanks so much,
    DHead

  7. Pingback: Celiac Disease Autoimmunity | The Patient Celiac

  8. Jen

    Are there any follow ups to this thread? I was just diagnosed a couple of months ago and am in the process of having my kids tested. Have not been able to figure out how often that should be done….

Comments are closed.