Isn’t it funny how day by day nothing changes but when you look back everything is different?
~ C. S. Lewis
It’s been 18 months since I was diagnosed with celiac disease. Upon discovery, my functional medicine doctor at the Cleveland Clinic, my primary care doctor here in Pittsburgh, and my gastroenterologist, all asked if I had any siblings. When I responded that I have six older brothers and sisters, their eyes got big and said that I needed to encourage them all to be tested. “The chances are quite good that one or more of them also has celiac.” I sent out a group email explaining it all, but since none of them were experiencing any real overt symptoms, it wasn’t a high priority. My oldest sister was the first to be tested and she checked out fine. The more I educated myself about the disease, the more convinced I became that my oldest brother was a prime candidate for it. We have shared so many of the same issues over time: seasonal allergies, chronic sinus troubles, hypoglycemia …I wish I could better articulate how I knew, but it’s one of those things…I just knew.
Through no fault of his own, there were a few starts & stops of his getting tested. In the meantime, my second oldest brother was tested after a health scare last fall. Bingo. We were 2 out of 7. Last week, after finally seeing the right doctor, it was confirmed that my oldest brother also has it. This brings us to 3 out of 7. The fascinating thing for me is how it is slowly putting pieces of a puzzle together. You see, my dad was born with Pyloric Stenosis which is an uncommon condition in infants that blocks food from entering the small intestine. At three days old, he had an operation to correct the issue. As a result, much to the fascination of all the neighborhood kids, he was left with an enormous scar on his belly that was in the shape of a Christmas tree. His LifeSaver addiction and his Christmas tree scar were his claim to fame. However, as time went on, he had a lot of belly issues. At one point he even had several inches (feet?) of his intestines removed. I should also add that he had a horrible diet. So he became a slave to how his stomach felt before he could really plan & live his life. He’s long gone at this point…but with all of the information that we have now, I can’t help but wonder if he too had celiac disease.
My oldest brother lives only 15 minutes away from me (unlike the other diagnosed brother who is 10 hours away) and his wife travels a lot. So once a week we have been getting together for dinner so that he can slowly make his way through this learning curve. He would much rather spend his free time tending his garden than slaving in the kitchen. And honestly, with a yard like this, who can blame him:
He and his wife are doing so great with this diagnosis. They are reading and asking questions and being so positive. Yesterday I had a text from him saying that he had just learned all about cross-contamination and how very real it can be. I was so tickled by his enthusiasm.
A celiac diagnosis is a punch in the gut (pun intended I suppose..) but a gluten-free lifestyle is not impossible. Especially when you’ve got family to share the journey with.