Empowering Celiac Kids

Dear Gluten-Free Friends,

One day, I asked my daughter who has celiac:

What is Celiac?

“Celiac is an allergy.”

No.

She responded with, “Well, I’ve heard a lot of people say this.”

I explain what celiac is to all of our kids pretty often, and yet, here we are. Other people can easily create confusion and questions for our kids when suddenly they are speaking on a topic, they do not understand but seem confident about it. Specifically, in a school setting. In one instance, my daughter was playing with her own playdough we brought into the school. Her own, safe, gluten-free playdough. A teacher in the room began explaining to other kids that my daughter has a different kind of playdough because of an allergy. This teacher then began a conversation about allergies and asking who else in the classroom has an allergy. While I appreciate the energy created here promoting understanding and connection, it also left my own child a little confused about her own story.

How is having celiac different from a food allergy?

When you have celiac, you do not have an allergic reaction to gluten, your immune system sends out a false signal that a threat has entered your body and goes into attack mode. The small intestines get damaged in this attack process. Every celiac is different, where some do not have immediate physical symptoms and some feel like they have been hit with severe flu-like symptoms. Regardless of your immediate reaction, ALL people with celiac have intestinal damage as a result of gluten exposure. Food allergies are triggered by a specific food, either by eating it or breathing it in, as a result, the symptoms can be mild to life threatening. From an itchy mouth to anaphylactic shock. I am not an expert on food allergies and hope I just explained this with ease. The point being, there is a difference between food allergies and celiac disease, labeling them correctly will only help to educate the masses and set us apart from gluten-free due to intolerance and gluten-free where the environment is celiac safe and gluten allergy safe. While gluten allergies can be severe, and I am by no means claiming celiac to be worse, I am promoting the use of the word celiac so that it becomes more common knowledge within society. People without food allergies understand, (at least I hope they do, as they should) the severity of food allergies for others, (think about the food industry, and schools.) In other instances, people within the same industries do not always recognize the seriousness behind celiac disease. There is opportunity for education here. At least, speaking from personal experience, I feel like our society needs to become more familiar with what celiac disease is. According to the Celiac Disease Organization, Beyond Celiac, it is estimated that 1 in 133 Americans has Celiac Disease. This number could be higher when comparing the stats in other countries.

School

Our kids have not always been homeschooled. When my daughter went to school, my husband and I packed her lunch every day. We included hand wipes in her lunch box for her to use before eating her food. We also encouraged her to wipe her spot at the table. Maybe this is excessive for some, but for us, it felt like best practice to reduce opportunity for cross contact in a school setting before she handled her own food. One day, a cafeteria volunteer came by and grabbed a hold of my daughter’s lunch box to move it back from the edge of the table, repositioning her lunch in front of her. Instead of verbally prompting my daughter to do this herself, a grown-up with no knowledge of my daughter and her food safety needs, handled her lunch. Although her food was not directly handled, and the lunchbox was touched, this left my daughter feeling uncomfortable. Where we live, there is no training on food allergies or celiac disease for lunchroom volunteers. Parents with no training on food safety procedures or sanitation are inserting themselves in situations where they think they are offering help but instead could be compromising the safety of a child’s food. What if, this volunteer had just handled peanut butter, and then wiped off their hands but then touched the lunch box of a child with a life-threatening peanut allergy? There could potentially be a serious problem on their hands.

Socially

Arguably, the hardest part about Celiac Disease is the social factor. Kids do not like to feel left out, or different. A huge parental undertaking is being several steps ahead of these potential situations where our celiac child feels left out. Even still, even when I feel like I’m totally on top of it, there are moments that sneak up on me where I am not prepared. Unexpected cookies at church, or a real estate open house, a neighbor dropping off a sweet treat at our doorstep, where suddenly a kind gesture turns into a gut wrenching feeling of your own child being left out.

Here are a few things we have found to be helpful so that we stay prepared socially:

1.) Keep hand wipes on hand. While washing hands is always best practice, keeping hand wipes available are also helpful in an effort to keep your child safe and ready for an impromptu snack on the go.

2.) Buy frozen cupcakes and keep them in your freezer. This will save you from a last-minute trip to a gluten-free bakery for an upcoming birthday party your child has been invited to.

3.) For any social gathering, be it, church, a neighborhood gathering, a school celebration, pack your child’s favorite treat. If they love chocolate chip cookies, throw a few in your bag to bring along. Almost always, there will be options for kids to grab a treat, so plan ahead.

4.) Pack a lunch box. Even if you just pack a variety of snacks, a sandwich even, you will need to be a bit more proactive with feeding your child. If there is a chance other kids will have food around them, just make sure you have options. This one really can sneak up on you. We’ve been at a youth sporting event and will have just fed her, but if she sees another kid with a snack, she feels left out. The ability to stop at any grab and go spot for food is significantly decreased.

5.) Pack your own food for birthday parties. We keep extra frozen pizzas in the freezer for this reason. Involving our daughter in the process of picking out her food containers, her lunch box, and then prepping what she will bring, helps her to feel prouder of her own special food.

6.) Buy or make your own playdough. Bring this alternative option to school and instruct the school to not allow anyone besides your child to play with it. You will not want regular, gluten containing playdough to get mixed into your child’s safe option.

7.) Speak up! Even close family and friends who are very in the know with your routines and safe food practices will forget to wash hands or will assume something is gluten-free simply because it lacks an obvious wheat ingredient. As awkward as it can feel, your child will learn to have no shame in advocating for themselves by observing how you proudly spread awareness for them.

Empowerment with education and confidence.

The goal here is that we empower our kids to speak up, advocate for themselves, on whatever topic necessary. In my daughter’s case, advocating for herself will be a common occurrence, (I hope.) It’s so important that she understands what celiac is and that she feels confident enough to speak up. I also feel that it’s important that she does not define herself by the food that she eats. To overcome this obstacle, educating all of our kids about nutrition and meal planning is so important to us. We have found so much success in getting our kids involved in our meal planning and also cooking. One picky eating tip we have found helpful is to include the picky eater in the cooking, then, they feel proud of the outcome and are usually more compelled to at least try it. This same empowerment is something we have noticed for our daughter when relating to Celiac Disease. She is so excited about food, meal planning, and trying out new recipes. She doesn’t see gluten-free food as a burden, just a difference. Some of us in our house are vegetarian, some are not. I follow a predominantly vegan diet, but not 100%. My favorite cookbooks and family meal favorites loved by all are from a few different plant-based cookbooks. We celebrate moderation, we don’t restrict sugar, but we also don’t buy a ton of it. If someone wants a steak, we make it, while others have tofu. We are all different, and gluten-free options are another piece of that picture.

Love, Tiffany