Celiac Parenting

Dear Gluten-Free Friends,

I’ve said this before and I’ll say it a million times more, I want to make it so clear to that as I write about celiac advocacy, lifestyle tips, and challenges presented with celiac disease, I am also by no means presenting celiac disease to be something dark and gloomy. We can pretty much always point to someone who has it worse, whatever the case may be. I am humbled and at times embarrassed to talk about celiac hurdles with full awareness that I am speaking on an obstacle, a lifelong obstacle at that, but nothing in comparison to what others face medically. All of that being said, this is our obstacle, together as celiac parents and patients, to have a required heightened awareness towards food safety; otherwise, those facing celiac disease will not remain healthy and could potentially face more medical challenges than what’s already presented. By advocating for celiac disease, we are educating those around us to know how to safely eat with us. We are spreading awareness to those who might someday face an unknown medical issue and will now know to consider celiac as a possible cause. An estimated 1% of the population has celiac disease, and approximately 80% are currently undiagnosed. By talking about this, we could be helping someone. By talking about celiac, we are also connecting the dots to be thinking about other dietary needs and restrictions. Food is a cultural heartbeat; I am certain that being part French and Italian means that garlic and olive oil are an essential piece of my DNA and my blood partially tomato sauce. Food brings people together, it’s nurturing, it’s nostalgic. The aroma of a family recipe can unlock core memories, the scent of something delicious can create new memories. Cake = birthdays, pie = Thanksgiving, cookies = Christmas, and the list goes on. A Celiac Disease diagnosis is a rug pulled out from under the feet upon the traditional ground we stand on. As a parent, there is a mourning to this realization. Our society lays a snap judgement over the food labeled GF as something that is less than.

I wonder how we can remove this stigma; how can we get more businesses to want to include safe options. We talk about it, we ask questions, we teach. Please speak up about what you need, what your child needs. Realize you are not being “too much.” You are kind of a superhero parent, going to bat for your child so that a new, safe, normal can be created. The social challenges are the worst part. Feeling left out at birthday parties, bringing your own food to events, that is hard! Kids can feel really awkward being the different one. Optimistically, the gluten-free options are growing, and sharing our favorite gluten-free food with family and friends can heighten the realization that maybe some of their favorite foods are actually gluten-free after all. So many still associate gluten with only wheat, thinking that if the food lacks bread, it must be gluten-free. Many people are so very painfully unaware of cross contamination. One would think that a global pandemic would have taught us a bit more about the spreading of something from one thing to the next, but here we are still explaining what contamination means. Needing to post content on social media explaining that gluten is to the celiac like raw meat is to any human, unsafe and not something you want rubbed over a clean surface or your food. In time, our society will catch up. There are other countries with more celiac support and more gluten-free options. Celiac research is relatively new in the United States compared to other countries. We will get there, but it will take work and time.

At times, I feel guilty being in a restaurant and ordering something that is NOT gluten-free for myself. I do not have celiac disease, but it’s as if I am casting a food vote in said restaurant, or grocery store and not pushing for more of those gluten-free options. This feeling of guilt that I should remove from myself, that also could be connected to the tomato sauce blood (being part Italian,) that I previously mentioned. All in all, the food vote so to speak, it’s something to think about. As a parent or loved one of a celiac patient, we can actually help spread options by occasionally casting a vote ourselves. This guilt is something I have been working on, I am not my daughter, but I so badly want her to have the unlimited social experience. Like I said, food is the heartbeat of our culture, and I want her to be feeling right at home wherever she goes. A lot of energy goes into the planning and emotional navigation, the advocacy and education.

Raising celiac kids calls for unconventional practices in our daily routine, and when we find ourselves in a state of high alert towards one child in a household of multiple children, I often wonder how our other kids are feeling and if they notice the differences.

The Celiac Disease Foundation recently published information about a study that zeroed in on the non-celiac sibling. According to this study, “58% of kids aged 10-14 felt they got less attention than their sibling with celiac disease. 69% felt annoyed by lifestyle changes (home, restaurant, traditions.)” Further stating that “siblings of kids with celiac disease can experience emotional impacts.” I asked our non-celiac kids about how they felt about these numbers, and if they can relate. They said, yes, they can relate to the findings of the study. They said that there are times they notice that I am more focused on their celiac sibling, specifically when we go out to a restaurant. They don’t feel annoyed by lifestyle changes, probably because of the age they were when their sibling was diagnosed. Our oldest non-celiac child was only 4, and the other only 1, and the youngest was not born yet. Our celiac child was only 3. This early diagnosis might have been helpful with navigating emotions, it’s really all they know. Still, they do see when my attention is pulled towards our celiac child in circumstances where I need to ensure her food is safe.

I can give you a recent example. This month, we were in Kansas City for an event with the Kansas City Royals. My husband, Tim, used to play professional baseball and was with the Royals when they won the World Series in 2015. This month, the Royals had a 10-year anniversary, celebratory event that was over the course of a weekend. One part of this event was a team dinner. Here is an example of where we did not pick the restaurant, we did not pick the menu. We did not have a full menu to work off of. We communicated the dietary needs, and we were told that whatever we needed would be accommodated. I called the restaurant and was mistakenly told that they have gluten-free pasta to offer. That seemed easy! We arrive for dinner, and no pasta. The options were slim, especially for a child who not only needs gluten-free options but who also prefers vegetarian options as well. The owner of the restaurant could not have been kinder. He was eager to help, despite how busy he was hosting a high-profile team dinner. What a great opportunity for this business owner! He truly cared about making sure our daughter had options, but this required some back and forth, and me going around the table to talk to her. She was in a bad mood, she felt uncomfortable, she wasn’t excited about her options, and this negative emotion was being directed at me. Here I was trying to help her, putting all of my energy into figuring out how to make sure every one of our kids was having a positive experience, and she was mad at me. Meanwhile, our other kids felt like I wasn’t spending as much time with them because my focus was mostly on our daughter. When dessert came around, our non-celiac kids had cake options, while our celiac daughter was given fruit and whipped cream. I’m sitting there feeling worried and sad. I had trouble shaking off this feeling, ordering food felt like a longer experience than the actual dinner and before we knew it, dessert was yet another thing to figure out. The next day, I realized that I had never even asked our other kids how their food was or if they had fun. Following up with all of them, I asked our celiac daughter if she’d had a good night at the restaurant. As it turns out, she loved it! Her favorite part, the fruit and whipped cream. She never even missed the cake. I spent so much energy trying to make the evening be seamless, and in return had a negative experience myself. Our kids all had a great time, but our non-celiac kids did notice where my energy was.

Our experience that I just shared, it’s an example of a situation we truly cannot plan for. Even if we feel like we have a routine, we think a hundred steps ahead and are so confident that we can navigate food clearly, the unexpected happens. I’m working on not letting the unexpected rock the boat too much for me. I never want her to feel left out, but also, I don’t want my other kids to feel left out of my attention in the moments where I am actively trying to avoid our celiac daughter from feeling left out. Feels almost like a tongue twister to read that. It’s a lot! I am sharing this with you because maybe this topic will help you to navigate the unexpected moments better too. I don’t have the answers, but I do think that by letting the moment be what it was and letting go, no one would feel slighted. Despite food being a cultural heartbeat, as parents we are the heartbeat of our families. Moments that might initially be perceived as negative, could be redirected by us. I could have focused more on the overall experience of us being at dinner, than the actual food. We could have left dinner when it was over and picked up another option for our celiac daughter if she was hungry. We did end up finding a dedicated gluten-free bakery the next day and getting cupcakes. We were planning ahead for the baseball game that night where specialty decorated cookies would be available for the kids, not gluten-free. We wanted her to have options, so in this case we planned ahead, and she didn’t eat any at the game. Still, the option was there. The experience was more than the food. Maybe this is the balance we need to find for our families. Finding the way to plan ahead when we can and go with the flow when we can’t. Realizing that although food is the cultural heartbeat, we can also create our new traditions and memories too. At the end of the day, what matters most is that we put the energy into having equal opportunities for our kids. Celiac education is critical for the non-celiac siblings too, to gain empathy and understanding. Non-celiac siblings have a 1 in 10 chance of developing celiac disease. If someday another child is found to have celiac, we want them to not see it as such an obstacle, but an organic shift in their way of life where our family already has traditions and modified family recipes that include a seamless gluten-free variation. We embrace the nostalgic recipes while welcoming the modification in the gluten-free version; and maybe even improving on the old when welcoming the new.

Love, Tiffany