12 Lessons Learned from 12 Months of Celiac
+ a bonus sweet recipe
On June 15, 2023, our kiddo’s Celiac diagnosis was confirmed. At the time, it was mostly relief after a very stressful spring being turned away by the pediatrician, wondering what in the world was wrong with our baby. Seeing how quickly she improved was a huge boost, and yet the reality of a life without gluten began to set in.
Each day was a new lesson in GF eating and living, trying to educate our child in addition to ourselves. It’s not always easy, and some days or situations (looking at you, birthday parties) are harder than others. But each time we hit a wall, we learn something new. Here are 12 things we have learned over the past 12 months.
Be gentle with yourself - You likely just came off a very lengthy and stressful period preceding the diagnosis. Give yourself time to decompress and process the reality of your child having celiac disease. Yes, you will need to make changes in your life, but they don’t all need to happen in one day. Show yourself some grace.
Get support - Many GI departments and hospitals will offer support groups and additional education on celiac disease. (Have you heard about the GFKC support groups!?) A lot of these programs can be done remotely, which is extremely helpful for families. I liken it to when you welcomed a baby for the first time. You needed your village! We all need support. It’s no different with celiac - it’s time to find your support circle and make sure you are not alone on this journey. Besides the GFKC group, Beyond Celiac, National Celiac Association and Celiac Disease Foundation are all helpful resources for this as well.
Mistakes will happen - Whether a friend or family member accidentally offers an unsafe treat, a restaurant makes a mistake, or a full on glutening occurs….it will be ok. These moments are challenging, but can be taken as learning experiences, and can help you be better prepared the next time. Again, show yourself grace and know that you are doing everything you can to keep your child safe around gluten-containing food.
Experiment in the kitchen - I am somewhat lucky in that I enjoy cooking and have had family members voluntarily opt to avoid gluten in the past. I was familiar with some of the principles we had to embrace. I realize this is not the case for everyone. I would recommend mastering 3-5 recipes you can rotate for your family that make you feel capable and proud (a GF spaghetti dish, taco night, a risotto recipe, a chicken sheet pan dinner with veggies, chili, to name a few). Utilize gadgets to make this even easier (instant pot, slow cooker, air fryer, etc).
Come with back up, the some more back up - This is especially true for travel! I never leave the house without a snack pack. And I keep some snacks in the car console and glove compartment. I make sure I have trusty favorites, as well as something new and exciting. If I know kids will be enjoying treats my kiddo can’t have, I come prepared with extra special foods. (By extra special, I mean lollipops or something I don’t typically give as a snack. When I bake cupcakes, I freeze extras. All of these can help make a kiddo feel special when they are missing out).
Fail to plan, plan to fail - Preparation is KEY! Whether it’s a party, school outing, day at the pool/beach, or travel, doing the leg work ahead of time can pay dividends. Calling restaurants, hotels, speaking to parents, prepping snack packs or coolers will all help you feel equipped, no matter what the activity is. I make sure to hit the grocery store in advance, and pack the night before if I can.
Find a local network and celiac friends - This could be a classmate, a neighbor, a support group, or a network at your child’s hospital/GI doctor’s office. Something I see so much of is how isolated individuals with celiac can feel, and I want to make my child feel as supported and seen as possible. Just recently, we learned a soccer buddy has celiac too! Although I wish neither child had celiac disease, it’s nice to know she has a peer she can connect or get meals with.
Get informed - Podcasts, books, and articles, oh my! Recently, I’ve really been leaning into the educational side of celiac disease and leaning more about symptoms, where research and testing stands, and autoimmune diseases in general. Granted, some of this reading is not light or fun. However, some has been helpful for me personally. Celiac Mom by Ann Campanella and Gluten Freedom by Dr. Alessio Fasano are both great reads.
Identify takeout/restaurant favorites and safe options - We have a #1 restaurant that has a dedicated GF fryer and takes celiac disease very seriously. We love it, although it would be nice to have even more options. I think getting familiar with restaurants and take out options becomes even more important as kids age, and they want to do what their friends are doing. Knowing the safe options ahead of time is a huge help. (A lot of my research has revolved around speaking to restaurant managers and inquiring about the GF preparation and cross contamination risks. Going beyond GF menu options is important).
Master the essentials - In addition to favorite meals, I make sure I have an arsenal of favorites, whether we are on the road or at home. I always have a varied snack pack, I know her favorite birthday cake/cupcake recipe, GF popsicles, holiday favorites, and what lunches she will enjoy the most (grilled cheese, tacos).
Have a glutening game plan - Our poor baby dealt with this on her birthday party day, and it was not pretty. It was the first time we experienced her symptoms since her initial diagnosis, and it was jarring. Hydration was a key component to her recovery, and I was thankful we had juice boxes (intended for the party) that helped her perk back up. Pedialyte or apple juice could also be good items to keep in your pantry, should the need arise.
Educate and advocate - As a family, we’ve started raising money for Beyond Celiac to help fund celiac disease research and the hopes of a cure. I do my best to promote the ADINA Act (the labeling of gluten and allergens in medication - look it up!) on my platform, and call my representatives to emphasize the importance of such legislation. Whether it’s once a week or once a year, set aside some time to help further the cause of treating, diagnosing and researching celiac disease.
Now the yummy part - a sweet drop biscuit recipe so many of you requested this week! I riffed on a basic Martha Stewart recipe to bring you Gluten Free Chocolate Cinnamon Drop Biscuits, ideal for special treats, weekend mornings (or any time, really!)
Ingredients
1 3/4 cup GF Flour
2 1/2 teaspoons baking powder
3/4 teaspoon kosher salt
2 Tablespoons cinnamon
6 Tablespoons chilled unsalted butter
3/4 cup GF chocolate chips (mini if possible)
1 1/4 cup milk
Preheat oven to 450 degrees.
Line a baking sheet with parchment paper. In a mixing bowl, combine 1 3/4 cup GF flour, 2 1/2 teaspoons baking powder, 3/4 teaspoon kosher salt, and 2 tablespoons of cinnamon. Briefly whisk.
Cut 6 tablespoons chilled unsalted butter into a small dice and work into the flour mixture with your hands, until it resembles a course meal. Add 3/4 cup mini chocolate chips and mix. Lastly, pour 1 1/4 cup whole milk (or milk alternative) into the mixture - a little at a time - and stir with a fork. You may need to work with your hands briefly at the end to ensure it’s fully combined. Do not over mix!
Drop ~3 tablespoons mounds of dough onto the parchment paper (recipe will yield about 8 biscuits), and pop in the oven for 13-15 minutes. Cool fully, and enjoy!