Wednesday, May 16, 2018

Babies and Gluten: So Many Questions, Very Few Answers

I feel very lucky to share with all of you that I am a new mommy!

Hayes Miller Wells was born on
April 7th and was quite a little peanut (5 lbs. 13 oz. @ 39 weeks). It's been a typical experience so far...little sleep, pooping constantly, eating every couple of hours...but soon enough he'll stop breastfeeding and start eating real food. All parents with children who suffer from food allergies have the "great fear" that they will be safe at home and at risk out in the real world (aka a friends house).

I have both confusion and fear for my little one and his elevated risk for Celiac Disease, however reports vary so I'm not quite sure HOW likely it is. This article from Everyday Health uses data from the University of Chicago Celiac Disease Center says that his risk is 1 in 22 or 5-10%. However, this Celiac Disease Foundation page claims the risk is 1 in 10 for a close relative such as a child, parent or sibling. Since Celiac Disease is genetically linked, there is a 50% chance he'll carry the gene. While this article is from 2009, I haven't found statistics to the contrary.

As I read articles and peruse research on this topic, there are three main questions I'm looking to have answered:
  1. Does introducing gluten vs. avoiding it completely help or hurt his chances of triggering Celiac Disease?
  2. At what age should introduction take place to "test the waters" and depending on this answer, what difference can it make?
  3. What tests should I have run on Hayes and when?
The short answers to all of these questions seem to be...there is no definitive answer and it depends. Advances in understanding occur all of the time, but that doesn't help a parent who wants a step by step guide to their baby!
There are a couple of points of contention:

  • Breastfeeding - research consistently shows that breastfeeding is good for mom and baby. The debated question is whether it helps either prevent or delay the onset of Celiac Disease. 
    • This Parents Magazine article tells us that breastfeeding doesn't effect the likelihood or onset of Celiac Disease.
    • The Everyday Health article from above says, "breast milk also helps with gastrointestinal function and other areas of development. But research has shown that babies who are at risk for celiac disease may see a delay in symptoms if they’re breastfed. Recent research has found that babies who are breastfed have a lower risk of developing celiac disease later in life."
  • Introducing Gluten - again there is debate on when to introduce gluten to babies in general and those with high risk of Celiac Disease. This KevinMD.com article outlines two studies with different findings. 
    • The European PreventCD study found no difference in high-risk infants introduced to gluten between 4-6 months and those who were not. 
    • This Swedish study claims that the amount of gluten consumed by 2 years of age did impact the prevalence of Celiac Disease in high-risk children.
    • The general rule of thumb with allergens is to wait until 12 months to introduce.
    • Other parents note that they would prefer to wait and introduce once the child can be tested for Celiac Disease via blood test and/or endoscopy.
Of course, a final consideration is testing. There are blood tests and endoscopy results, both of which require gluten-consumption over a period of time to have accurate results, plus genetic testing. The Celiac Disease Foundation says that blood tests for antibodies shouldn't be done before age 3 and that the genetic test can be done at any time. Additional information on Celiac Disease testing for infants and toddlers can be found here.

So now what? My plan is to continue to talk with new parents, plan on doing a genetic test as soon as my pediatrician recommends, breastfeed until it doesn't work for our family anymore, maintain a gluten-free household and to keep reading - I have 4 more months to learn more before deciding on when to introduce gluten to Hayes. I encourage all Celiac parents to share their "plan" to help us all and provide any information you can about your child and their experience.

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