Looking back on our family trip to Florida almost three years ago, I realize it was then I knew something was seriously wrong with Sarah. I had no idea it would lead to a diagnosis of Celiac Disease, but am so thankful it was something we could learn to live with.
Going back to that first night of vacation, I did what every mother would do, stayed awake with my sick daughter and racked my brain at to what we should do next. We were halfway across the country from Sarah’s pediatrician (who of course happened to be on vacation, too) and I knew taking her to a local hospital would only result in a long wait in the ER, multiple tests, and an inconclusive diagnosis.
At a loss as to what to do, I called our dear family friend Dr. Bonnie Typlin or as we call her “Dr. Bonnie” asking for her advice. After hearing Sarah’s symptoms she agreed that going to a local hospital would get us nowhere. It sounded to her like Sarah was experiencing acid reflux. Dr. Bonnie recommended an over-the counter antacid and to research online what foods caused acid reflux. Her final recommendation was key – for Sarah to keep a food journal. It was in this food journal that we realized the direct correlation between food and Sarah’s symptoms.
The first thing Sarah entered in her journal was a piece of Todd’s chocolate birthday cake. One piece of cake and Sarah spent the entire night in agony. We had no idea which ingredient caused the intense episode, but it caused Sarah to avoid eating for the most part. Looking back at this time, Sarah was completely malnourished. She lacked energy, needed new clothes because of her significant weight loss (for a teenager), and had absolutely no color. I know, once again I think – Wow Carlyn, Mother of the Year Award!
When we returned home from our trip, Sarah saw her regular pediatrician. Not wanting to waste any time, I told her of our progress and asked what the next steps should be. Tests for Celiac, Cancer, and Chron’s Disease explained the doctor. “Which should I pray for?” I asked.
“Celiac Disease” the doctor told me.
Having no idea what Celiac Disease was, I immediately went home and researched all I could. Within 24 hours the doctor called and informed us that Sarah did indeed have Celiac Disease. She recommended we go see Dr. Suzanne Nelson, a pediatric gastroenterologist. From there Sarah would undergo multiple tests and biopsies needed to confirm the Celiac diagnosis. She was to continue eating gluten for the time being or her body would begin to heal itself.
Dr. Nelson called and again confirmed that Sarah was a Celiac, with no other diseases. Mystery solved! In plain terms Sarah’s body was not absorbing the nutrients from what she ate – she was truly starving herself, thus the weight loss. The immediate steps were to remove gluten completely from Sarah’s diet. What lay ahead of us was a journey I could have never planned for.
To read more about the beginning of our journey, check out the first part to Eating With the Enemy: Mother of the Year Award
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