We were first introduced to the celiac world in September of 2014 when our daughter was diagnosed with celiac disease. She was two years old and had suffered from food allergies from the start, most of which turned out to be due to an immature digestive system or due to her damaged intestines which prevented her from properly digesting many foods. However, to this day she still has a dairy allergy.
At the time, I remember being shocked and not knowing much about the disease or what kind of permanent lifestyle changes it was going to require by the whole family. I immediately started doing research online, ordering books, meeting with a pediatric nutritionist and talking to family to try to wrap my head around what it meant to have this diagnosis. The more I read, the more overwhelmed I became because I learned about things like cross contamination and how difficult it was going to be to keep our daughter healthy and safe both at home and out and about. I remember thinking “they’re over exaggerating, this can’t be true, she can’t possibly get sick from a shared cooking surface or spatula” only to find out from her gastroenterologist that I was in denial and that cross contamination is very serious.
Today, we are a very well educated family on celiac disease, but it was not easy to get here. We spent the first month attempting to remove all of the gluten from our home, but kept making mistakes as we learned about many of the unlikely things that contained gluten (i.e. spices, play doh, baby shampoos). After that, we were able to control the home environment as she was not in school yet. It’s ironic – as a breastfeeding mother I had learned to cook dairy, egg, soy, and nut free meals for babies and adults due to her originally diagnosed allergies, but cooking gluten free was totally foreign. We tried dozens of brands, experimenting to find the ones that we found to be the tastiest, and also learned to cook with gluten free flours from scratch. We quickly learned how expensive it is to buy most gluten free and dairy free products, so cooking as much as we could ourselves became a necessity. Did you know on average it costs a family with food allergies two to three times as much just to buy groceries each month??? We didn’t, but we understand it all too well now.
Once we started to get the hang of raising a child with celiac disease, we started venturing out and went through many trials and tribulations navigating family visits, eating out, play dates, and traveling. Starting preschool was the most difficult change last year. She was sick for the first eight weeks of school, but working with her school, we finally found ways to reduce cross contamination in the classroom substantially. So she enjoyed the rest of the school year and made lasting friendships.
2018 update: Our family has grown! My daughter is now 6 years old, and our son is 3. My son initially had an allergy to egg and dairy, but he has outgrown both thankfully. He is positive for both celiac genes, but so far has only been diagnosed with gluten intolerance as he gets sick any time he eats it. My daughter is continuing to blossom, but as she gets older there are some new social issues resulting from celiac disease that are playing a larger role – wanting to fit in with others, grappling with feeling different and being ok with it, and anxiety over getting glutened from restaurants. We take it one day at a time and work a lot on building self confidence and not letting celiac disease define her life.
I could go on and on, as our story much like any family’s is not short. But I’ll leave you with this. Raising a child with celiac disease and/or other food allergies is no easy task. BUT, and there is a but, once you learn to cope with it and understand how to keep your child safe he or she can live a truly happy, FUN and fulfilling life.
My goal in creating this website is to share our knowledge so that other parents of children with celiac disease, gluten intolerance, dairy allergies, or other food allergies can benefit from it. I will be sharing information handouts for newly diagnosed families, tips for school and outings, recipes, and parenting information to help educate your child and manage the stigma. I don’t pretend to have all of the answers as I’m constantly learning, but I do hope that it helps other families, friends, and loved ones.
Thank you for visiting Celiac Mama!