Once C was diagnosed with celiac, it was time to get my other two children tested. M, my 15 year old son, did not have celiac. A was up next.
She was almost 14 when she took a blood test. A was very concerned about having celiac, although she showed no obvious signs. The only sign she did have was stomach issues that started when she was 2, but we thought we had it under control. Looking back, I think A got used to stomach aches and never complained since they were so frequent. But she was never unusually sick and was growing appropriately. Aliyah had the same celiac blood test and food tests as C.
During the several days that passed awaiting her results, A kept asking what I thought, and I could tell she was concerned about her results. The doctor finally called and her celiac test came back positive. A was very upset. Unlike C who felt immediately better after going gluten free, A did not feel much of a difference. She continued to question her results, but we knew the answer and she was set up to see the same gastroenterologist.
A’s 14th birthday came between her diagnosis and the appointment and she begged for one last gluten filled birthday. She had not been completely gluten free at this point since we were waiting for the appointment. Gluten-free was truly a loss for A, as I realized fully during this time. She loved cereal and mac n cheese and pancakes and was at the age where she could go out to eat with friends. She did not want to have celiac or be gluten free, and this was something she really needed to process and come to terms with. My heart broke for her. A’s small silver lining came in the form of the choice to have, or not have, an endoscopy. The Gastro wanted her to, but said since C and I were diagnosed, and there was no question from A’s bloodwork, she did not have to do it. A hates needles and hospitals and blood, and anything related, and she was freaking out about the endoscopy. I would have liked her to have it, but we decided to not do it. She was having a hard time anyway, and like the doctor said, there really was not any reason to believe the biopsy would show anything different. A’s gluten free lifestyle started right after she turned 14 heading into 8th grade.
At this point, we decided the entire house would be gluten free. We got rid of any gluten-containing items and agreed that any food consumed inside our home would be gluten free. If our son wanted to eat pizza with friends, they would do it in the driveway on a folding table.
Celiac disease is a scary diagnosis and many people initially feel overwhelmed, confused, uninformed, and alone. There are so many people, including some medical practitioners, who do not understand celiac,…