Family Testing: Personal Stories from the Community
One Diagnosis Story Told from the View of a Mother and Son
Patrick Lee’s Personal Story
I don’t remember a lot of the process – My mom was the one who took charge and made things happen. What I do remember is how different I felt after we started the diet. I felt I could concentrate more, I wasn’t as tired and being in school was not as hard.
I also felt a lot better from a stomach point of view. I always had a lot of gas, my stomach would hurt so I thought I was full and had eaten too fast or something. I thought all of this was normal for me. Later I found out that was not the case. I remember my mom commenting on how much more I ate after going gluten-free.
In college, they did not have a gluten-free menu at first. My mom made appointments to talk to the food service director before I started school. She brought up a bunch of products – she even made them cookies and brownies – so they knew gluten-free could taste good. Then she would periodically send products up. But over time I was able to navigate the school cafeteria on my own. I made the decision to get to know the foodservice ladies, I worked with the director and the cooks to make sure there was something that was safe for me to eat. By the time I graduated they actually had an entire section set aside for gluten-free students.
From Mom’s side: Anne Lee, EdD, RDN, LD, Professionals Manager of Dr. Schar USA
Patrick seem to have trouble concentrating in school, he was frequently tired, he was thin, and in eighth grade he just stopped growing. So I asked the pediatrician to test him for celiac disease. She was hesitant at first, but then after another six months with no growth she did the tests and Patrick was positive for both the celiac disease genes and antibodies.
The change was dramatic – not only did Patrick grow six inches in a year – but he also became a different person. He was able to be more attentive in school, he was not as fatigued and the stomach issues all resolved.
Sending him off to college was tough. I was so concerned that he would not be able to manage a gluten-free diet and college life. But Patrick really grew into the role and took ownership of his gluten-free lifestyle and did amazingly well. He managed not only the cafeteria but dining out and even sea term. I credit the school for putting in a gluten-free section in the cafeteria to him.