Last week, Conor was cleared of his previous Celiac Disease diagnosis. Through genetic testing they were able to confirm he does not and could not have the disease. I don’t know if he fully grasped the news when Dawn broke it to him. But he really seems to be embracing all of his new found diet options. Conor is an incredibly picky eater. Couple that with the gluten free diet, and the only way to describe his relationship with food until now is: deprived. Birthday parties, he would not be able to partake in cake, or ordering pizza. Every where we went would be a separate meal brought in a small cooler pack just for him. Which was never as glamorous as what everyone else was getting. The kid took it in stride and rarely if ever complained. I won’t get into the hassle of dealing with it as his parent, because that seems like small potatoes of what he had to endure every day and every meal. Through what could have been some great eating years.
Nevertheless, here we are, and he is now walking around the house requesting “gluten” food. It’s adorable. Dawn served him up a bowl of mac-and-cheese for his first meal, and he scarfed down every last bite.
It was an odd journey getting to this point. From taking a barely 1 year old in for some very invasive medical procedures and being diagnosed with a chronic illness without a cure. To finding out a few days ago, all that was wrong and could have been saved up front with a blood test. I’m no gastroenterologist, so I can’t make assumptions or accusations. What I can say, and I hope everyone learns from our experience, is that you should question everything. Through all the testing and thousands of out-of-pocket dollars we poured into Conor’s medical we never got a concrete answer. He was diagnosed based on inconclusive biopsies. Since he responded well to the adjusted diet, they just labeled him as having Celiac. Dawn and I always remained skeptical, but these are medical doctors, so who were we to question. It is your right as a consumer to do just that. You don’t have to be rude or demanding, but know that you can question the medical care you and your family receive down to the most trivial detail. They are not perfect, and the last 5 years have been a crash course in their imperfections.
This is not meant to come off as sour grapes. We are ETERNALLY grateful that Conor can go back on a regular diet and that doctor’s were able to confirm this. The road to get here was just a lot bumpier than my naive self would have imagined some time ago.