In New York City, after finding out I had celiac disease, I immediately joined the “meet-up” group.  I thought it was a great way to meet other gluten-free folks and eat some good gluten-free food.  But I was shy,  I didn’t feel comfortable going to an event by myself.  In the two years I was a member, I attended one happy hour where I brought my husband and we sat at the bar and didn’t introduce ourselves to anyone.  Later on, I got bolder and attended a dance show but this time I brought my husband, roommate, and her boyfriend.  We gorged on the free pizza and had forced conversations with two women that had come alone.  And that was it.  I still get updates from the group and I realize now what a wasted opportunity that was.

I guess I came out of my shell while being abroad; I think you have to when you are in a strange place and don’t know anyone.  In Vienna, I joined the American Women’s Association, American’s in Vienna, and the Vienna Ex-Pat group.  And it was great: I made friends and had a instant social life.  So when we moved to Rochester, the first thing I did was look for something to get involved in.  I not only joined the Greater Rochester Celiac Support Group, but I volunteered to be the Health Fair Coordinator.

Last night, I attended my first group meeting.  Since I was technically a “newcomer” to the group, I attended an orientation.  The orientation seemed like it was geared t0wards the newly diagnosed since there were packets on the table about what to eat and what to avoid, cross contamination and dining out.  This is all great information, but I figured I already knew it all.  I was wrong.  As Mike, the orienter, read down the list of sources of gluten, foods to avoid/foods that are safe, dining out, and resources, I found myself noting down things I didn’t know before.  Toothpaste can contain gluten, and now I know to tell my dentist when I get a cleaning.  Most importantly though, at the bottom of the list it said, “DON’T CHEAT.”  I am so used to being frustrated while dining out and trying to explain my disease I sometimes let things go.  This was the ultimate reminder.  Having another celiac tell you not to cheat and remind you gluten IS poison was really powerful.  Thanks Mike.

I came out of the meeting with new information, a new community, and a new outlook on being gluten-free in a gluten-filled world.   I joined the support group because I wanted to advocate for the gluten-free community, but I didn’t realize that in turn, the group would be advocating for me.