My daughter Sarah is thirteen years old. This school year began with her switching into Jr. High. Seventh grade: changing classes every 40 minutes, nine new teachers, new building, new friends, lots of unknowns. Sarah is a very quite child, the middle child for me and Jim. Her older sister Lindsey is a sophomore. Lindsey is a very energetic young lady – very verbal and doesn’t want to go unnoticed. Todd, the youngest, is also very energetic and has a lot to say. As in most families, everyone is fighting for their space, voice, and parents’ time and attention. I’m telling you all this because Sarah’s voice often goes unheard, basically due to her quiet nature.
Sarah began having tummy aches in late September. They were not consistent or anything I would call serious. I just thought they were because of being a teenage girl and all the new responsibility that came with it. Sarah is not a big eater either, nor is she big in size (quite the opposite actually – very petite). In early November Sarah got the flu and was sick for about a week. We went to the doctor, because I thought maybe it was strep throat. We make it a habit to have each one of the kids weighed every time we visit Dr. Cathy, because they all take ADHD medicine, which causes a lack of appetite and consequently smaller lighter children. Sarah had lost weight both about six pounds. Both the doctor and I thought it was due to the flu. We discussed working on her eating more.
Thanksgiving rolled around, and Sarah’s stomach aches were a little more consistent. She was also looking gray, had deeper bags under her eyes than usual, and felt achy. I have to say I go into such a deep work mode from Turkey Day until the end of December (when the family leaves for Florida), that I am in “survival mode.” My attention to words, both said and not said, is not at its best. I guess I’d say I’m present, but not listening.
We arrived in Florida on December 23rd. The very next day Sarah was crying in pain, holding her stomach saying she felt like she thought she was going to die. My heart sank. What had I missed that I could have or should have heard her saying? Dr. Cathy was also on vacation, and I knew that a different doctor in her practice would not know how to help us from a distance. So I reached out to my long time friend and pediatrician, Dr. Bonnie. She had been our doctor until she relocated to Arizona. She also knows Sarah, and Sarah trusts her. She suggested we start Sarah on an over-the-counter acid reflux medication and look online to determine a list of food she shouldn’t eat. Sarah was relieved that we were trying something. So for the next nine days we worked hard on really eating things that would help Sarah. (A side note: Sarah is not a very big bread eater). Of course, being the foodie that I am, I read up on acid reflux.
So now fast forward to being home from vacation. I scheduled a doctor visit with with Dr. Cathy. She did an exam and agreed with Dr. Bonnie that Sarah should start on acid reflux medication. Still no weight gain. One week later the girls had their physical with Dr. Cathy. I asked Cathy, “What else should we be looking for? Sarah is still complaining, and she seems to have no energy, depressed, and very achy.” She suggested we go get some blood work done – Sarah’s favorite (just joking). At the moment I asked her what they would be testing for I only heard part of it. Celiac (I did not know what that was), Crones, Cancer, and I can’t remember the other things.
Once you have tests done it seems like it takes forever to get the results. I got a call from Dr. Cathy, and she explained that Sarah had tested positive for Celiac. It’s 100% treatable and would require a total change in how we eat. Of course I love a food challenge, but our next step was a children’s gastroenterology. Dr. Cathy gave us Dr. Susan Nelson’s name and number, and off I went to get to the next step. We were blessed to have met Dr. Nelson. She is very tall in stature, knowledgeable beyond belief, kind, and very thorough. She told us our next step was to have an upper endoscopy at Children’s Memorial Hospital. We scheduled this procedure for Fridays. It took about 7-11 minutes to scope and biopsy the small intestines, throat, and stomach. It showed us the damage already done by the Celiac, but also helped set expectations for how long it would take for Sarah to start feeling better.
So now it’s been almost 2 months since Sarah’s diagnosis. It’s hard to believe that just those couple months ago, we didn’t even know what Celiac was. Now, it’s plays a lead role in our lives and we are revolving our habits around it. But we’re already learning it’s possible, and it could be a blessing in disguise.