In September 2017, Sam was an active toddler who met all of this developmental milestones so we were a little surprised when, at his four-year old check-up he had fallen below his growth curve. We had recently switched pediatricians and trusted her when she said that it was likely just a timing issue and he was likely soon going to have another growth spurt. After the appointment a little nag in our gut prompted a call to Sam’s Aunt Mandy who is a pediatrician in Texas. She told us it could just be due to the new doctor’s office using a different growth curve and not having all of the data points. She asked if I happened to have all of his measurements since he was born (yes!) so she could plot them all on one growth curve an take a look at it. Once she did that, it was clear that Sam had slipped and so she advised us that it might be worth checking in with an endocrinologist but it wasn’t urgent. We were able to get an appointment at OU Children’s for 3 months later (January 2018). 

When we schedule Sam’s appointment with the endocrinologist the intention was to have an initial consult but by the time we went to the appointment Sam’s dad, Josh, had accepted a new job in Lincoln, Nebraska and we would be moving in February. Due to our upcoming move, the endocrinologist decided to do a full blood work up on Sam so we would have lab results to take to a new doctor in Nebraska. A few days after his appointment, the doctor called us and told us he was nearly certain that Sam had Celiac Disease. His other labs came back completely normal but his celiac markers were >100 which he explained was where they stop counting. He briefly explained what Celiac Disease was and acknowledged that we would likely google Celiac Disease but that it was critical that we did not change Sam’s diet until we were able to get a upper GI scope done. 

Of course our heads were spinning but thankfully Sam’s Auntie Jen and Uncle Mat are physicians in Omaha so they helped us find a pediatric gastroenterologist at Children’s in Omaha. We called right away, explained our situation, and were able to schedule an appointment for early March. The endocrinologist at OU sent Sam’s records. It was around this time that Sam started experiencing some tummy aches. There were a lot of changes for our family in the first few months of 2018 as we moved from Oklahoma to Nebraska, Josh started a new job, Emily looked for a job, the kids started a new school, we said goodbye to dear friends and started to make new friends and learn about winter in Nebraska. We had no idea the big changes that were ahead for our family as our new reality was unfolding. 

Sam and Emily went to Children’s for his initial consult with this gastroenterologist and, as the endocrinologist had told us, based on Sam’s labs he needed to have an upper GI scope done to confirm and officially diagnose Celiac Disease. The scheduler came into the room and gave us our procedure date a few weeks out and we drove back to Lincoln. Before the end of the day, though, the doctor’s office called us back and said the doctor wanted Sam in as soon as possible so we would be doing Sam’s scope in about 10 days. We decided Emily would take Sam to Omaha and Josh would stay in Lincoln for work and so Sam’s little brother, Ben, would go to school like usual. As a distraction for not being able to eat anything, Sam and Emily spent some time at the Omaha Children’s Museum which was super fun. Other than some challenges with getting Sam’s IV in, the procedure went well. As he was waking up from anesthesia the doctor showed Emily the images of Sam’s intestine with completely blunted vili and said directly, “never let this kid have gluten again.” While we knew the diagnosis was most likely coming, it still felt unreal…Scary. Sad. Overwhelming. 

We had an office visit follow-up with the gastroenterologist the following week and also met with a dietitian who gave us a crash course in label reading. At this appointment the doctor told us that Celiac Disease had a strong genetic component and there was a 1 in 10 chance that one of us also had Celiac Disease. It was hard to imagine that could be possible since neither of us had symptoms but we assumed it would be Emily because she has another autoimmune disease and is the one in the family with food and environmental allergies. Within a couple of weeks we learned that it was, in fact, Josh who had Celiac Disease. His labs were “off the charts” and an upper GI scope confirmed the diagnosis. As we learned, even though he was asymptomatic, gluten had been causing great damage in his intestine. 

One of the unexpected gifts of the move and Emily’s time between jobs was time for her to dive into understanding Celiac Disease. As anyone with the disease knows, there is a learning curve understanding cross contamination, scrutinizing labels for the countless ways gluten can be hidden, buying new pots and pans and utensils, and so much more. And there was relief knowing we could help Sam and Josh be healthy but there was also grief. As parents, in the early weeks of Sam’s diagnosis we couldn’t imagine how Sam could possibly have a “normal” childhood with friends’ birthdays, favorite foods, or simple things like PB&Js. And, because we had assumed Emily would be the person with Celiac Disease she spent some time processing what her new life would be like, but Josh was completely caught off guard by his diagnosis and not mentally prepared for his new reality. We chose to become a 100% gluten free home so that Sam would never have to worry that he was safe at home. Ben’s pediatrician wanted him to still eat gluten so that it would be easier to identify Celiac Disease if/when he ever developed it so he ate regular breakfast and lunch at his school and then GF at home. 

The child development center Sam attended was phenomenal about helping Sam have the same experience as all of his classmates. The food service manager, Ms. Crystal, was knowledgeable about Celiac Disease and took steps to ensure Sam was not exposed to gluten. We brought Sam’s main entrée from home but he was able to eat the same sides with his classmates. They ate family style so Sam got to scoop his serving a fruits and vegetables first. They had a dedicated microwave in the classroom to warm his lunch. When Ms. Crystal helped make cupcakes in the classroom for birthdays, everyone had GF. When they made slime, everyone used GF flour. This care and attention to Sam’s experience and well-being made us nervous about him starting kindergarten, especially after hearing about the struggles so many kids with Celiac Disease face. The summer before kindergarten we met with the head of nutrition services at Lincoln Public Schools (LPS) and were blown away by the processes and menus they already had in place for kids with special diets. It almost seemed too good to be true. We were connected with the cafeteria manager at Sam’s elementary school who echoed what the district person had said about how they handle food for Celiac Disease. Over the past five years Sam has primarily eaten school lunches. Most days he has something similar to his classmates and has he has never gotten sick at school. LPS does not allow outside food into the classrooms for holidays or birthdays so we have not had to worry about that either. 

Sam is on a health plan at school that stipulates things like access to the bathroom and/or the nurse if he starts to feel sick, hand washing for Sam and his classmates before and after lunch, and notice if outside food will be served (I.e. popsicle at Field Day). Sam has started each year with a letter to his teachers about Celiac Disease and includes reference materials for them to learn more. The past two years he has even done a presentation to his classmates at the beginning of the year so they understand the disease and why Sam’s food is a little different. As a rising fifth grader Sam is able to advocate for himself and is getting pretty good at reading labels. Sam’s little brother, Ben, still eats food with gluten but he’s one of the biggest champions of our GF life and is quick to remind gluten eaters to wash their hands. And, as it turns out, Josh wasn’t as “silent” as he thought because being on a strict gluten free diet has improved how Josh feels including less headaches and heart burn. 

One of the hardest parts of our Celiac Disease journey is reflecting back on the changes in Sam’s personality and the now apparent decline in his health when we look at pictures starting about a year or so before his diagnosis. He was always a happy, outgoing, and active kid so we didn’t realize this had all been slipping. Within about a month of being gluten free, we had our Sam back. He came back to life both in his personality but also in his skin color, hair and nail growth, and so much more. Now, six years later, at Sam’s most recent 10 year old check-up he was at the highest percentile on his growth chart that he had ever been. Of course we are as eager for a cure to Celiac Disease as anyone, but we are thankful we have the knowledge and resources to live a 100% gluten free live to keep Sam and Josh healthy! We are excited to be a part of the Not a Fad fun run so we can help raise money for Beyond Celiac’s mission supporting research and education and use “our share” of the proceeds to buy gluten free food for the Lincoln Food Bank to help folks in Lincoln who need to live a GF life too.