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We each have the power within us to nurture a difficult situation into something more positive. Choices. I never get used to hearing of a child (or adult) who struggled with health complications due to undiagnosed celiac. It is something I must read, however, every time I share someone’s personal story. Sydney didn’t sleep through the night her first five years. But then, as you will see below, a diagnosis brought health that shone brightly on this family. I love silver linings! From a sleepless child to gluten-free sparkles.
What's Wrong With My Child?!
Sydney’s first five years were rough. With sleep issues that started before age one and lasted until she was diagnosed at age five, Ann said “those years were a blur.” A sleepless child would have any parent living in a daze. Sydney didn’t nap and never slept through the night. Any parent can tell you how brutal that can be for just one week. Imagine night after night for five years?!
Now add on the worry and wonder, “What is wrong with my child?” By the time she reached her first birthday Sydney started experiencing stomach aches, severe bloating, and chronic constipation. She cried a lot. She wasn’t getting proper sleep. She had dark circles under her eyes. And even though she had a ravenous appetite, she wasn’t growing like a typical toddler. Failure to thrive.
Ann never got used to hearing the doctor tell her that she worried too much or that her daughter was fine. Moms KNOW when their child is NOT fine! She requested celiac testing and had to push hard for it. Then, in March of 2007, at the age of five, Sydney was finally tested. The report, however was not clear. With only one elevated number in the panel, the doctor’s belief that Sydney didn’t have celiac seemed validated.
Ann was fortunate to have a very aware friend who referred her to another physician. This doctor followed through with an endoscopy. He was able go to mom and dad directly from the procedure and confirm celiac disease even before the samples were sent to the lab. He told them that Sydney had severe scarring in her small intestine. “It was both horrifying to hear and a huge relief to finally have an answer,” mom shared.
Transition to Gluten Free
Once completely gluten free, Sydney became very sensitive to any exposure. “The tiniest crumb will set off a cycle of vomiting that lasts for at least two hours,” mom shared. The vomiting is accompanied by terrible stomach pain and severe exhaustion for a few days.
Even though gluten was at the root of Sydney’s health struggles, transitioning to gluten free wasn’t a simple task for Ann. I think this is the case for most of us, whether the kitchen is our favorite room in the house or our least favorite. And for Ann, this wasn’t her most favorite room.
As someone who didn’t cook, she struggled. “It was not only hard to find food and make meals for my daughter, but it was emotionally hard to have to leave behind recipes and dishes that were part of my heritage,” Ann shared.
While it was one of the biggest challenges or her life, Ann also shared that it was one of the biggest blessings. “Our whole family has learned to eat better. Her celiac disease has brought improved health to all of us.”
They were fortunate to be referred to a dietitian. And they were fortunate that their dietitian truly understood gluten-free needs. The dietitian’s own daughter has celiac disease.
Even with that support, however, it was still an overwhelming task for the family. It was hard for Ann to grasp hold of all the information. Let’s face it, its a lot at the start! Ann suggests spacing appointments out with the dietitian in order to give time to absorb all the suggestions.
Gluten Free Day #1 ~ SLEEP, Finally!
Following her very first gluten-free day, Sydney finally slept through the entire night — for the first time! Wow! After years of never sleeping the night through, what a confirmation that gluten free is what their daughter needed! Amazing!
Over the weeks and months that followed, mom and dad were privileged to watch their daughter blossom as though they were watching a time-lapsed video. The first weeks: increased energy and decreased tummy bloating. They were able to say good riddance to the stomach aches and constipation. And after minimal growth through the previous years, they watched her sprout up, growing a couple inches that summer.
Being unwell is limiting. I shared my wonderment about my own childhood and how different it might have been had I been diagnosed in a more timely manner in part 9 of my series, The Emotional Side of Gluten Free: Who Am I.
A diagnosis meant Sydney could move forward and enjoy life with the energy of a healthy child and young adult. Prior to being diagnosed, she enjoyed more quiet activities: puzzles and drawing. As the years progressed, however, the energy that health gave her meant an increase in more physical types of activities: horseback riding, basketball, and water sports.
Mom’s gratitude for a diagnosis and the opportunity for her daughter to experience the healthy life she deserves far outweighs the challenges of the required diet. “Sydney has grown into a confident young woman, with the strength and endurance to play high school sports and have a normal life,” mom shared.
Gluten-Free Benefits Beyond Sydney
Mom and dad were eventually tested for celiac as well, but not until gluten became a very minimal part of their diets. Both tested negative. With the benefits they both experienced being gluten free, however, neither wanted to return to consuming gluten as needed for the endoscopy.
Ann had made the decision to go gluten free alongside her daughter. She felt that maintaining a gluten-free home was the best way to keep Sydney safe. Dad, on the other hand, took a little longer to give up gluten completely. Once he discovered that it adversely affected his golf game, however, gluten became part of his history as well. This gave me a little chuckle. It is said with humor. But let’s face it, without an official diagnosis, we require validation of gluten’s impact.
While neither mom or dad will know if they officially have celiac, accidents with contamination has proven to both that they are at least gluten sensitive. Mom, dad and daughter are now all vigilant with their gluten-free diet.
Knowing what they know now, Ann also wonders if either or both grandmothers had celiac. Both had colon cancer. Ann’s mother also had Alzheimer’s for the fourteen years before she passed.
A Mother's Inspiration
Ann expressed great pride in the way her daughter has faced her dietary needs. “Watching my daughter navigate her teen years and the search for colleges has been inspiring,” she shared. “Her experience of having to give up gluten and make choices for the good of her health have strengthened her into someone who knows exactly what she wants.”
Choices. While Ann’s daughter has been her inspiration, it isn’t always easy for Sydney. Let’s face it, this diet has its challenges. And for a teen, this diet can present huge social struggles when it comes to the food aspect of those high school years. It was sad for me to hear that she got glutened at an event that so many teens look forward to: Prom. Mom said it was a painful and disappointing experience. Sydney, however, chooses to keep the many positive moments of that event present in her memories.
*Ann included this experience in her memoir, Celiac Mom, that she wrote about their family’s journey.
Sydney’s celiac diagnosis led mom and dad to healthier lives. Definitely one silver lining. Another is the support that their family’s story offers other families who may be just starting out on this journey–or at any point of their journey.
As a writer, Ann was inspired to put their family’s story on paper. The result is this memoir: Celiac Mom. I look forward to reading her book.
As is normal, Ann wishes more doctor’s were better educated about celiac disease. She wishes that her daughter was tested earlier, not having to live through her first years with those health struggles.
Stories, however, increase this awareness in order to increase testing and diagnosis in a more timely manner for others. This is one thing that we each can do–share stories to increase awareness.
For those who are diagnosed, support through others’ journeys can be so empowering. Ann hopes her book provides this support. “I wrote my memoir, Celiac Mom, to share our journey through celiac and provide a handrail in the transition to a gluten-free lifestyle,” Ann shared.