Celiac Awareness Month is an event held throughout the United States each May and is supported by the National Foundation for Celiac Awareness. It is something that those in the gluten-free community know about, celebrate and promote. The entire month of May is filled with activities, educational events, food expos, and news stories.
It wasn’t until this week that I found out there was such a thing. My friend and former Director of MazelTogether, Josh Gold, shared the journey of his son Brayden being officially diagnosed with Celiac Disease two years ago on his Facebook page. I caught up with Josh to give us an update on his son and their family journey, since his first blog “I Thought I Was Doing Something Jewish” post was back in 2017.
“From not being able to sleep to being anxious about everything, our carefree son was just not himself and we couldn’t figure it out”…
Josh shares his son’s story…
A little over two years ago, we had been trying to figure out why our son wasn’t sleeping through the night, growing or had behavioral issues. We had tried a sleep apnea test, had his tonsils and adenoids removed and we were still not seeing the results we hoped for. A friend said that we should do a blood test and have him tested to see if he had Celiac disease.
We truly had no idea what this meant and our son had never shown any of the signs of being Celiac. He didn’t have any of the traditional signs of stomach aches, bathroom issues or vomiting. But there are other signs as well which include: lack of enamel on teeth, trouble sleeping, behavioral issues and stunted growth. We had his blood tested (twice… the first time they thought it was a false positive) and the results showed signs that he could be Celiac. A month later, we scheduled an endoscopy which confirmed that he indeed had Celiac Disease.
Now two years later and he has been on a gluten-free diet and over a nine month period of time grew three inches and gained six pounds. He has learned how to advocate for his eating needs at parties and learned what foods now make him feel sick. He now tells us when he is full and understands that there are times he needs to spend more time taking care of himself. He attended a wonderful Celiac camp at Roundup River Ranch and knows that he is not alone in this disease.
Each day is a challenge in finding foods that he can eat and we are constantly having to change where we eat out because just because something is gluten free one time doesn’t mean that there isn’t an issue another time. But overall, we have seen an improvement in his behavior and growth since discovering that he has Celiac Disease. We yearn for more products and places that understand the need for gluten free options and hope sharing his story allows other people to get tested and to advocate for better options.
What can parents do to be more mindful at birthday parties and playdates?
Parents of children with Celiac Disease need to be the ones that share this information with parents of a birthday party. Asking questions about food that will be served takes the pressure off the host family and allows us to send food that is similar to what is being served to allow our son to feel like it is part of the party. It empowers him to decide what food he will eat and that he is safe. If the host parent offers to buy gluten free food, that is a bonus but the food still needs to be checked.
Do you find that most of the time you have to be your own advocate?
Yes, we do. Even when there is food that is gluten free at a party or a playdate, the food can be cross contaminated (if someone eats something that has gluten in it and then grabs a gluten-free item) and every person with Celiac Disease has different sensitivities. As our son has had no (or little) gluten in two years, he has become more sensitive.
Did you initially meet with a registered dietician to help guide you along?
We attended a free informative class at Children’s Hospital. This class is for all families that have children diagnosed with Celiac Disease. The doctors there have been amazing.
Are there any helpful facts or tips that you can share with families to promote education and awareness? Are there tools that you use when grocery shopping that help you select food items that are safe?
Join the Denver chapter of the National Celiac Association. They send out monthly emails and there are activities for children and adults to learn more each year. There is also a food festival called Nourished Festival each year where there are new gluten-free products available. We also have found some amazing apps that we use on a daily and weekly basis. Our favorites include Gluten-Free Scanner and Find Me Gluten Free. Finally, there is an amazing gluten-free blogger named Jenny Finke who shares her own gluten-free journey and tests different restaurants around Denver on her website: www.goodforyouglutenfree.com.
Are there any local restaurants that have extensive gluten-free options?
Our favorite local restaurants that have kid friendly gluten-free options is Yellow Belly Chicken, Urban Egg and French Press. There are some national restaurants that also have gluten free options but the menu items change often and we have had some negative experiences. The best ones that we have found are Red Robin and Chick-fil-a.
Celiac Disease, a genetic autoimmune disorder, affects at least 3 million Americans. Here are some common symptoms of Celiac Disease in children and adolescents: poor growth, weight loss, short stature, delayed puberty, diarrhea, constipation, poor appetite, food aversion, behavior changes, dental enamel defects, iron deficiency anemia or other vitamin or mineral deficiencies, chronic fatigue, gas, skin disorders that produce small itchy blisters on the elbow, feet or knees, vomiting, irritability, abdominal pain or cramping, bloated abdomen, fatigue, osteoporosis or multiple fractures and headaches.
Celiac Disease can appear at any time in a person’s life from early childhood to late adulthood. The Boulder Medical Center has compiled a Celiac, Gluten-free Boulder Cheat Sheet. This site includes Local and National Chain Restaurants with Gluten-Free Options.
Josh mentioned that Brayden attended Roundup River Ranch and absolutely loved it! The Ranch offers old-fashioned, pure fun camp experiences for children with serious illnesses and their families. Their beautiful Colorado ranch and through year-round activities, offers campers and their families the chance to enjoy the most extraordinarily ordinary joys of childhood.
If you or your children are living with Celiac Disease and need guidance navigating the journey, Josh and his wife, Pamela, would be most happy to be a local resource for you.
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