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Introducing Gluten to the Baby At-Risk for Celiac Disease (2014 update)

My youngest daughter, Claire, who I had in 2012, was my first baby born after my celiac diagnosis. I really struggled during her infancy to figure out if/when I should ever feed her gluten, as I wanted to do everything possible to prevent her from developing this disease. Based on all of the available research at the time, I made the decision to introduce her to small amounts of gluten when she was about 5 months old, and I breastfed her as long as I could (see my previous post for more details). I also freaked out a bit, as I was pretty sure that I had introduced gluten at the “wrong” times for my 3 oldest kids, beyond the 4-6 month “window” that had been supported by the literature, and I had not even been breastfeeding when my 2nd child was given gluten for the first time.

Fortunately, thanks to two recent studies published in the October 2nd New England Journal of Medicine, moms of infants at-risk of celiac disease will no longer need to struggle with their decision making the way that I did. Both of these beautifully designed, randomized, placebo-controlled European studies, including large numbers of subjects, demonstrate that neither the timing of gluten introduction, nor breastfeeding during gluten introduction, make any difference in the eventual development of celiac disease in at-risk babies. I wish that these results had been available in 2012 when I was struggling with my decision-making for baby Claire!

The first paper, entitled “Introduction of Gluten, HLA Status, and the Risk of Celiac Disease in Children,” discusses results from the Italian Risk of Celiac Disease and Age at Gluten Introduction (CELIPREV) trial. In this study, 707 infants who were at risk of celiac disease (having either a parent and/or sibling with celiac) were randomized to be introduced to gluten at either 6 months of age (Group A) or 12 months of age (Group B). Infants in the study who carried the celiac genes (HLA-DQ2 and/or DQ8, n=553) were then followed for the development of celiac disease via repeated celiac antibody testing at age 15 months, 24 months, and 3, 5, 8, and 10 years of age. Celiac disease autoimmunity was defined as having positive results for celiac antibodies. In total, 117 of the 553 subjects met the criteria for celiac disease autoimmunity during the study, and 91 of the 117 with celiac disease autoimmunity were diagnosed with celiac disease.

In the CELIPREV trial, earlier introduction of gluten was associated with earlier development of both celiac disease and celiac autoimmunity, but by age 5 there was no difference in the rates of celiac disease or celiac disease autoimmunity between the groups. At age 2, there were significantly more children with celiac disease from study Group A (early introduction) than study group B (late introduction), 12% v. 5%, but by age 5, the percentages of children with celiac disease in both the early and late groups were the same (16%). Likewise, although there was a significantly higher risk of celiac disease autoimmunity in the early group v. the late group at age 2 (16% v. 7%), the difference resolved by age 5 years (21% v. 20%). In addition, breastfeeding duration was not associated with the development of celiac disease. The authors conclude that postponing the introduction of gluten until 12 months of age had no effect on the eventual development of celiac disease in at-risk children.

The second paper, “Randomized Feeding Intervention in Infants at High Risk of Celiac Disease,” discusses results from ongoing the Prevent CD trial. In this study, infants at-risk for celiac disease (defined as having both a first degree relative with celiac disease and the presence of one of the 2 main celiac genes) were randomized to be given either gluten (n=475) or placebo (n=469) between 16 and 24 weeks of age. All of the infants were then followed closely for the development of celiac disease until they were 3 years old. Overall, 80 of the subjects developed celiac disease by age 3. Rates of celiac disease in the gluten v. placebo groups were similar at age 3 (5.9% in the gluten group v. 4.5% in the placebo group) and breastfeeding duration was not found to have an influence on the development of celiac. When evaluated by gender, however, there was a small increase in celiac disease at age 3 in girls who were exposed to gluten v. placebo (8.9% v. 5.5% in boys), which the authors speculate may be due to the fact that there were more girls who were double DQ2 positive, or homozygous (this is the highest risk gene combination for celiac disease). The authors conclude that giving small amounts of gluten between 4 and 6 months of age makes no difference in the eventual development of celiac in genetically predisposed infants.

In conclusion, we now know that there is nothing that we can do, feeding-wise, to prevent the development of celiac disease in our at-risk babies. While these results are sobering, as I know that many of us wish that we could do something to prevent out babies from developing celiac, I hope that future moms will be able to be a little easier on themselves than I was regarding the timing of gluten introduction. As a mom and neonatologist (pediatrician) I am a huge advocate of breastfeeding, and despite the aforementioned research showing that it does not seem to effect celiac disease development, it has numerous other health benefits for babies. I encourage moms to provide breast milk, in at least some capacity, during infancy (realizing that exclusive breastfeeding is sometimes not possible). Lastly, I feel much less guilty for exposing my 4 kids to gluten as babies, as I now know that if they do develop celiac, that it is not because of how I fed them!

Thank you for reading! As always, comments, questions, stories, etc. are appreciated!

References

Lionetti, E., Castellaneta, S., Francavilla, R., et al. Introduction of Gluten, HLA Status, and the Risk of Celiac Disease in Children. New England Journal of Medicine. 2014. 371: 1295-1303.

Vriezinga, S., Auricchio, R., Bravi, E., et al. Randomized Feeding Intervention in Infants at High Risk of Celiac Disease. New England Journal of Medicine. 2014. 371: 1304-1315.

11 thoughts on “Introducing Gluten to the Baby At-Risk for Celiac Disease (2014 update)

  1. Pingback: Introducing Gluten to the Baby At-Risk for Celiac Disease | The Patient Celiac

  2. Vik

    What a relief for you after all that wondering, that was a lot of angst for you to bear, Jess. Thanks for the summaries in bold print. My niece actually did get tested for CD per my suggestion, because of the primary relative thing. Her blood work was ok. She recently asked me if I thought she should get her 8 month old kid tested, as well, I said that I would ask you.

    1. Jess Post author

      Hi Vik,
      That is great that you were able to convince your niece to get tested. I am still trying to convince most of my family members to get tested, and it’s been a challenge for years, even for those who have overt symptoms of celiac.
      As for your niece’s child, as long as there are no symptoms of celiac disease, she can probably wait until at least age 4 or so for screening (this is what we have done with our kiddos because by age 4 the celiac antibody panels are reliable in kids). Perhaps others can weigh in on this too…
      Hope that you’re doing well and having a wonderful autumn Vik.
      Jess

  3. Kristin

    Hi Jess,
    Thank you so much for taking the time to create this site. Would you mind pointing me in the direction of a few articles regarding testing kiddos for celiac disease. I was diagnosed in April and we have two younger children. Their dr. seemed skeptical when I told her about my diagnosis and asked her if we should be concerned about the kids. She asked how I had been diagnosed (endoscopy) and then quickly dismissed my question.
    However, my husband is a molecular biologist who researches multiple myeloma. He wants to see what the researchers have to say on the topic and can thankfully understand all of the medical/research jargon!!
    Thank you kindly,
    KW

    1. Jess Post author

      Hi Kristin,
      Thanks for reading.
      I just wrote about this topic a few months ago and I put links regarding the testing of at risk kids into the post. I was, unfortunately, not able to find any additional information about this in the scientific/medical literature.
      Here is the link.
      I hope this helps!
      Jess

  4. Ian

    Did the study address what happens if gluten is introduced between 0 and 4 months? I heard previously that introducing it before the 4 month mark was associated with increased risk, but this is the one thing I didn’t see in the study.

    1. Jess Post author

      Hi Ian,
      You are correct, introducing gluten prior to 4 months has been shown to increase risk in previous studies, but neither of these current studies addressed that window at all. I will definitely post in the future if any future studies come up.
      Jess

  5. Harpreet Kaur

    Hey Jess,
    It’s always enlightening to read your posts. Thank you.

    While the progress made in undertanding the impact of breast-feeding and time of introduction of gluten in infants is encouraging, I think it hasn’t understand one basic question : Is this is restricted to Europeans, since the trials were conducted in Europe?
    Does the geographical location matter in such studies, or can this be generalized for global population? I’m not sure. Perhpas you could shed some light

    Thanks again,
    Harpreet

    1. Jess Post author

      Hi Harpreet,
      It’s great to hear from you! I hope you are well. As far as I know, the bulk of the past research in both adult and pediatric celiac disease has involved European and North American (predominantly also of European ancestry) subjects, as was the case with these NEJM studies (European). So, I would say that the results are as “generalizable” to other populations as the results of any other large celiac studies have been. Does this make sense? I understand what you are asking, but I am not sure that anyone will really ever be able to answer this, until there are large studies involving non-European celiac populations.
      Jess

  6. John Gannage

    Nice summary,
    Wondering, though, what if the introduction is delayed even further, say to 24 months or even 36?

    1. Jess Post author

      Hi John,
      Great question. I don’t think that anyone would be able to answer this for you definitively as there have been no randomized trials that I am aware of using this “window” for gluten introduction. I’ve gotten the sense that in some cases, no matter how long we wait to introduce gluten, that if celiac is going to develop, that it will eventually pop up. The HLA DQ2 homozygous kids (having two copies of the risk gene) seem to be the most predisposed to developing celiac.
      If I ever come across the answer to your question I will post it.
      Jess

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