Ann tells the story of her daughter’s celiac disease diagnosis and how it affected their family.
Describe your child’s life prior to diagnosis:
Before my daughter’s diagnosis, she had stomach pains, severe constipation, bloating, trouble sleeping through the night, and dark circles under eyes. She did grow, but very slowly. She had very little energy and spent most of her time (as a toddler) doing quiet activities like playing with puzzles or looking at books.
How did you come to know (or suspect) that your child had celiac disease?
My mother’s intuition told me that my daughter was not healthy. I spent hours on the internet every night searching for her symptoms, and eventually the words “celiac” and “gluten” showed up.
How long did it take for your child to get diagnosed since the first symptom and what (if any) challenges did you face along the way?
It took five years before my daughter was diagnosed. We faced many challenges. My concerns were often downplayed and dismissed: I was told that I should feed her more vegetables; that I was a “nervous mother”; that my daughter’s growth was “normal,” even though it hardly registered on the growth chart.
Do you believe anything could have sped up your child’s diagnosis? If so, please explain:
Absolutely. More education on the part of doctors would have sped up my daughter’s diagnosis.
Describe your experience living with celiac disease:
Living with my daughter’s celiac disease required a huge shift in our lifestyle. My husband and I soon discovered we were both sensitive to gluten as well. Our family had been wedded to wheat, and there was an enormous learning curve, not to mention a lot of grief I had to process. I didn’t realize how closely food was tied with memories and family traditions and how almost every social event involved a meal or snacks. Suddenly, as a mom, I had to provide a gluten-free version of this food on a daily basis so that my daughter would not be on the outside looking in. As a non-cook, this took a lot of education and trial and error for me. Holidays, church potlucks, school events, summer camps and vacations required me to plan and pack food for all of us. It was a lot of work!
However, in the long run (and even the short run), it was so worth it. To see our daughter thrive—she began to sleep through the night, she sprouted up in height, her stomach pains and fatigue disappeared—was incredible! And it wasn’t just her. Both my husband and I felt so much better on our gluten-free diet. Mild depression and mysterious aches and pains simply vanished. Despite the occasional glutening, our family’s health improved dramatically.
Is there anything else you’d like to add to your story?
As a former magazine and newspaper journalist, I have shared our family’s story in my memoir, Celiac Mom. I’m pleased that it has been a finalist in both the Indies Today Awards and the Wishing Shelf Book Awards. It is also a recommended read for Indies Today.
But what makes me happiest is when I receive emails from parents who are so grateful for the support my book provided them. I’m honored to be able to give other families who receive a celiac disease diagnosis a handrail through the healing process.
