I have celiac disease. He has celiac disease. We’ve made a baby. It’s still growing inside but I’m already thinking about it. What about the baby and celiac disease?!
So they say that you can be at risk for celiac disease when there is a first or second degree relative involved. The rates are up to 5-10% (I believe my doctor said as much as 15%) if you have a relative with the autoimmune condition. Celiac disease is common with two gene types: HLA-DQ2 and HLA-DQ8. The numbers assume about 95% of celiacs have HLA-DQ2 and the last 5% have DQ8. Having the genes doesn’t guarantee celiac disease but it certainly makes it a more plausible scenario. As it stands right now, I’m the only one in my family with this friendly auto-immune condition. And so is he. I am not, however, the only one in my family with auto-immune conditions.
Fortunately or unfortunately for this little critter growing inside my uterus, they do not have just one first degree relative. Baby hit the jackpot with two! My gastrointestinal, lover of inflammatory bowel diseases, doctor did not even have an idea of the incidence of celiac in children with not ONE but TWO first degree relatives. Baby is comprised of both of our genes. If he’s a carrier of DQ8 and I’m a carrier of DQ2… is that a guaranteed scenario? We don’t know and I can’t find any research on it… I mean, how many celiac couples do you know?
And how will we know? Will we trial baby on gluten at the risk of contaminating our own sensitive stomachs? Will baby just never eat gluten? Is that realistic? What happens if baby never eats gluten and gets exposed?…
These are the scenarios that run through my head:
I stay at home with baby until I decide I want to work some more or until baby is old enough for school. I send the baby to school, kiss their cute little gluten free cheeks and wave until later. I come back; pick up baby and go to kiss their little gluten free cheeks and discover gold fish, graham cracker, animal cracker, some sort of inflammatory celiac-hating gluten protein ALL OVER THEIR CHEEKS. I cannot kiss my baby and baby explodes right in front of me from the overload with gluten protein that is frequently perpetuated at schools and daycare.
Or other scenario… they give baby Play-Doh. Even home-made Play Doh is made out of wheat flour. Baby spends all day playing with said Play-Doh. Hugs and loves on me and daddy… and poof. WE explode from gluten overload.
And while the scene will never look like a poorly designed CGI 80s movie explosion, the underlying concerns are real. Our house is gluten free. Our counter tops avoid gluten. Baby snacks almost always start with cereal and crackers. Gluten. People don’t understand. 20ppm to cause a reaction is invisible to the eye. Or the one time I was at a restaurant and I asked about gluten free and the waitress started talking about milk…
The last two years have been hard enough to manage and re-learn our own health as celiacs and while we’re excited about our potentially celiac baby… the concern is real.
What do you guys do for your kids? What do you, parents with the child being the celiac, do? I feel like this is one of those things that comes with learning over time…