Timothy, the most recent addition to our gluten-free nuclear family, is now 3.5 months old. It seems like just yesterday that we wrote on this blog about his arrival. Already he’s changed and grown in dramatic ways and enriched our lives and our family immeasurably. But as he approaches his fourth month of life, Timothy also brings us face to face with a difficult decision as a gluten-free family and household: do we have a moral imperative to introduce him to gluten?
One of the most exciting and interesting areas of celiac disease research over the past decade has been the progress made identifying the risk factors for developing active disease. We don’t yet know all the minutiae of every causal factor, but researchers have uncovered and confirmed some profound correlations. One in particular has us thinking hard: the timing of first introduction of gluten significantly influences an at-risk infant’s likelihood of developing celiac disease later in life.
In particular, introducing gluten either too early or too late causes celiac disease rates to skyrocket. If gluten is introduced at age 3 months or younger or at age 7 months or later, a child’s chance of developing celiac disease spikes big time. However, there is a magic window, between 4 and 6 months, during which first introduction to dietary gluten is associated with a much diminished chance of developing celiac disease.
We’re talking major differences in risk—three-, four-, and even five-fold increases in risk for celiac disease. This has been shown in study after study, such as these from 2005, 2007, 2009, and 2013 (an excellent overarching survey from 2010 of many of these studies and some others can be found here). All of the research is intriguing, but the latter two studies from 2009 and 2013 are especially fascinating. They look at a celiac disease epidemic that hit children in Sweden born between the years 1984 and 1996. Prior to the epidemic, celiac disease rates were stable. Starting in 1984, however, a change in the Swedish approach to infant nutrition saw gluten introduced later (well after the 6th month) and celiac disease rates tripled to quadrupled. When Swedish pediatric recommendations returned to introducing dietary gluten during the magic 4–6 month window after 1996, celiac disease rates returned to their long-term pre-1984 lower levels.
As for Timothy, it’s the delayed introduction to gluten that causes us concern. I have celiac disease. Both of our girls test positive for the celiac genes but (so far) negative for active celiac disease. And though we haven’t tested Timothy’s genetics, we can say with pretty good certainty that he’s in the at-risk group for celiac disease. Which leaves us with a difficult quandary: as a gluten-free household and family, do we go to very deliberate lengths to introduce him to gluten for the first time—if at all, and then potentially ongoing if yes—during the magic window in order to greatly decrease his risk for developing celiac disease as an older child or adult?
It’s tempting to say “Forget about the gluten. Don’t worry about it.” After all, we don’t need it and neither does he. Gluten wouldn’t do anything for him nutritionally. But it could significantly impact his celiac disease risk. Is it our right to make that decision on his behalf? Is it our responsibility to feed him gluten, counter as that may initially seem to everything we think and know about gluten?
Think about it: though he’s at risk for developing celiac disease, that’s not a guarantee that he will develop it later in life. And just because we’re a gluten-free home—some of us by medical necessity and some by choice in solidarity—doesn’t mean that Timothy would make that same decision when he grows up. If the celiac disease genes he most likely carries never “turn on,” so to speak, he could very well choose to become a card-carrying member of the wheat-eating segment of the world’s population.
But if we fail to introduce him to gluten within the next two months when he will pass through that magic window of time, and he then later develops celiac disease because of elevated risk due to a dietary decision we made for him during his infancy, do we not carry that burden and responsibility and possibly guilt? Do we—and do any parents with celiac disease raising children in a gluten-free household—have a moral imperative to introduce our infants to gluten at the appropriate time in order to minimize their risk for too developing celiac disease?
I don’t pretend to have the answer, or even an answer. But we’re very soon going to face the choice, and we won’t have much time to act on a decision.
–Pete
I find this dilemma a fascinating one. As the passer of the coeliac gene from my father to my daughter (myself being highly gluten sensitive but not having tested positive, but my daughter being full-blown coeliac), I wonder whether I could have done anything differently. I had no idea that I would pass the gene on and I was a confirmed wheat eater before being a parent. But would I have done anything differently? Probably not! Looking back, it was better to know for sure and make a clear adjustment on the facts. Equally, I would not have wanted to deprive her of gluten for fear she may have got coeliac (even if she didn’t actually need the gluten). As it happens, I weaned my daughter with gluten during the magic low-risk window and it made no difference…… I figure that ultimately she was high risk anyway. I am glad she is growing up in the surety of her diagnosis. There is no ambiguity and she completely understands her future! Good luck with your decision.
Thanks for your comment, Kate. One thing Pete and I talked about earlier this morning—and it’s a challenge I wrestle with as a breastfeeding mother—is that in the U.S. the current protocol for breastfed babies is to not introduce any solid foods until after 6 months. So how does that weigh against the magic window during 4–6 months, which would be before we’d introduce Timothy to any solid foods, whether they have gluten or not?
Kelli
Kate, your experience also highlights an important point:
Though we as parents, either deliberately or coincidentally, may take our children down a lower-risk path, it’s NOT a no-risk path. Some children will still develop celiac disease, in part because many other causal factors come into play. On the flip side, although a higher-risk path may included a tripled or higher risk of developing celiac disease, we’re still talking about overall low rates of prevalence—a shift, for example, from 1% to 3%. Even so, as parents who want to do right by our children and set them up for a healthy, fulfilling life, these can be tough questions to answer.
Pete
Kelli… to your point about breastfeeding and introducing food earlier than six months. What would it do his system now if you do introduce it? If he’s been breastfeeding and you don’t have that protein in your milk, could he have reactions to a new protein? I have a friend who is vegetarian and somehow, at a restaurant, she ended up with what she thought might have been beef protein in her veggie stir fry… It wrecked her for days because her body was unable to deal with the unfamiliar protein. This is a very interesting conflict. Good luck… Nik
This is a really interesting discussion. I just asked my niece, who also has celiac disease what the pediatrician has told her about what to watch for or keep in mind with her 4 month old and she said nothing. I was a little surprised, but since my daughter wasn’t diagnosed until age 11 and had no symptoms until then I had no frame of reference. I bet most pediatricians don’t know anything about these windows.
I just went through this exact dilemma with my now 10 month old. I read all the data and decided to give him gluten closer to the 6 month mark, since I also breast feed and didn’t plan to start solids so soon. Here’s another issue…you can’t get just straight barely in a baby food anymore. They stopped making it. You have to use a mixed grain cereal which has wheat barely rice and oats. But the box says it’s for older babies age 9 months and up. My pediatrician was aware of my celiac and of the magical window and recommended I use the mixed grain anyway. So what I did is I started the baby on organic oat cereal which says “contains wheat” on the label. I’m sure it’s not much wheat, just from cross contamination, but I figured it still counted. I started that around 5 1/2 months and then started the mixed grain around 6 1/2 months. I figured it was in the window so it was good enough. He did fine with it and I gave it to him for about 2 months. Then I stopped because I was worrying too much about contaminating myself (use caution…he once sneezed a mouthful right onto my face…I had to run to the sink to scrub off!). I have no idea if what I did was right but I have to assume it was good enough and hope for the best!
I was in the same boat as you when I had my 4th child, Claire, in 2012. She was my first baby after being diagnosed with celiac disease and going GF. I read all of the journal articles, spoke with doctors, analyzed the available data and really struggled with the decision to introduce her to small amounts of gluten when she was about 5 months old. I was still exclusively breastfeeding at the time. Our entire house was GF so I made my husband feed her gluten contaminated baby oatmeal once per day for about a month. What I did not realize at the time was that, since I was GF, my breast milk did not contain the protective antibodies that a gluten-ingesting mom’s breastmilk would contain against gluten (there is at least one study that’s shown that breastmilk contains protective antigliadin antibodies). Claire was not exposed to gluten again until well after her 1st birthday. Now she is 2 years old and is having some very concerning symptoms of celiac disease (she will be tested next month). My three oldest kids, who all received my gluten-containing breast milk prior to diagnosis, do not have celiac disease, at least not yet. Looking back, I would not change anything that I did with the timing of my gluten introduction for Claire, and I realize that we are an n of 1, but I agree it is a very difficult decision.
I had the same doubts with my second son, his older brother having been diagnosed a celiac, and both parents having celiac genes. We had decided to hold out the gluten until he was much older, then at 6 months he started vomiting, having diarrhea and a spot of eczema on his face.
I knew these symptoms all too well- I asked his nanny what was she giving him, and she said she introduced him to bread (against my very clear instructions).
We decided then that he would be gluten free until he was mature enough to go on a gluten trial if he wanted to confirm his “diagnosis”, but to us the tests were no longer necessary. His brother’s doctor agreed with us. He’s been gluten free ever since, and he’s the healthiest child I know.
Anyway, this is just a thought on how we chose to deal with this issue.
This study shows better results with delaying gluten exposure: http://www.ncbi.nlm.nih.gov/pubmed/22432018
We did the “magic window” with our secpmd son and he still diagnosed as celiac at 1 yr.
I, too, personally find this subject intriguing. With my daughter I followed the steps that would seem more protective of celiac disease. She was breast fed with the introduction of cereal before six months (the accepted practice when she was an infant). This was not on purpose because I’d never heard of celiac disease prior to her diagnosis when she was two years old. When my son was born about two years later, our pediatric gastroenterologist recommended delaying the introduction of gluten until he was well past 6 months. (The accepted thinking on the subject at that time) He was also breast fed. He does not have celiac disease. So in my family things worked opposite the way science tells us they are likely to. While I always find this interesting, I do realize that one situation that differs from scientific findings does not mean those finding are not correct. But I follow developments so that sometime in the future my children might know what’s best when they have families.
Jess M,
Thanks for sharing your own experience. You may be an N of 1 (or perhaps an N of 4, with each of your children), but what unique insight you offer—pre- and post-diagnosis, pre- and post-GF. Tough decisions indeed!
Best,
Pete
Anonymous (who shared the link to the study),
Thanks for sharing that study. I find a few things interesting about it. First, it represents a very small study size—by the time researchers focused in on final participants, they had 8 each in the early and late gluten introduction groups. But second, the early introduction group received first gluten at 6-12 months while the late introduction group received first gluten at 12+ months, which means that BOTH groups received first gluten AFTER the 4-6 month so-called magic window. More food for thought…
Pete
And thanks to all the parents who’ve shared their families’ experiences!
Best,
Pete
I have a question regarding babies and celiac disease that is a litle off topic, but I’m hoping somebody in this discussion might have some insight to. I have celiac disease and have a 10 week old baby boy. Just the other day I was glutened. I didn’t get it badly, but I reacted more than I would have if it was just a slight contamination. I am breast feeding my new little one and after I got glutened, I noticed that the next day my baby boy was very cranky. He seems to have a belly ache and is having very bad (and smelly – he usually isn’t smelly) poops. Do you know if that is a sign that he may have celiac disease? I’m so worried that he is going to have it. I’m feeling better today where I can eat normally, but he still seems a little fussy today, just not as bad as he was yesterday.
This is really interesting. We have never confirmed celiacs (me and my 3 children), so we’re going with the non-celiac gluten sensitivity for now. But with #3, he was a newborn when I figured out #2 didn’t tolerate gluten (she had recently stopped breastfeeding and was having tremendous gut issues). Baby #3 had terrible enzcema, the doctor told me to stop eating gluten as that was probably the cause. It was. We’ve all been gluten-free since (turns out after my forced 1-year gluten fast I was sensitive too).
Baby #4 is on tap, due in the fall, and I will have to see what happens then!