Recently I had the pleasure of speaking at the Hudson Valley Celiac Support Group in Poughkeepsie, NY. As you may know, Celiac disease is an auto-immune disease: "...an inflammatory condition of the small intestine, induced by gluten. It has diverse clinical manifestations that resemble a multi-systemic disorder rather than a primary intestinal disease." Gluten is a sticky protein found in wheat, rye and barley.
The Hudson Valley Celiac Support Group was started by a dear friend, Linda Freeman. She is truly an inspiration about how to advocate for your needs. I had a chance to ask her how it all got started, the importance of community and how you can do it yourself.
Sloane: When were you diagnosed?
Linda: In 2004. It's a hereditary disease. My brother had been going to several doctors for ongoing stomach problems. Finally one of them said, "You're Italian and Irish -- there's a disease called Celiac that's very common in those ethnic groups, let's test you for it." Sure enough, he had it. So we all got tested and all of my brothers and sisters tested positive on the blood test, including me.
Sloane: How did you feel when you found out?
Linda: Relieved. I'd long suspected there was something wrong with my digestive system: I was constipated my entire life. Doctors had just told me to take Metamucil, which didn't help.
Also I was angry because my body had been literally breaking apart and none of my doctors had connected the dots. I'd been diagnosed with hypothyroidism when I was 20 and recently with osteopenia. I'd had infertility problems and went into menopause at 40. And I had a stress fracture in 2004 and two of my teeth chipped for no reason. All of those diseases and celiac are very linked. If only someone had diagnosed it earlier.
Sloane: What were those early days like?
Linda: My doctor just handed me a book and told me to read it, which wasn't helpful. I had to learn how to read and decipher product labels, which was a challenge because I was always skinny so I'd never read a label in my life.
In 2004, the FDA food allergen label laws were not in effect and so you didn't really know where wheat lurked. The first time I went into a health food store I wandered up and down the aisles with no idea what to look for. I ended up spending $50 on different kind of flours completely ignoring the fact that I had never baked in my life and I really had no idea what to do with them. I bought a ton of cookbooks, but they were so complicated. You had to mix all sorts of flour together to get the right consistency.
Sloane: When did you decide to get active?
Linda: I quickly realized I needed information and resources in my community and that there must be other Celiacs in the Hudson Valley. It was helpful to have my brother but he was an hour away and the closest support group was an hour and a half. I needed to know the best food to buy and the restaurants where I could eat in my own neighborhood.
Sloane: How did you start your group?
Linda: Luckily, Soul Dog -- a neighborhood eatery specializing in gluten-free food -- opened up just about the same time. I saw their ad, and sought them out. So did others like me. I spoke to the owners about starting up a group and they started collecting phone numbers of customers who were interested. I called them all and we started meeting monthly for lunch there.
I also contacted the Celiac Disease Foundation so the group could become connected with them. I felt it was important to be connected to a national organization.
Sloane: How did you get space?
Linda: We started at a big reserved table at Soul Dog, which fit 10-12 people. Eventually we moved to Vassar Brothers Hospital because a member had a contact there. This gave us a real conference room, which we've already outgrown. We moved into a larger conference room last month. We now have guest speakers -- like you -- and product samples and much more to offer our members.
Sloane: How did you grow?
Linda: Members are advocates and they post flyers in doctor's offices and health food stores, they also do public outreach and events. I've also done interviews like this one and in our local press. I did a TV interview last year and we're being featured in the Celiac Disease Foundation newsletter spring issue.
Sloane: What would you say to anyone newly diagnosed?
Linda: Join a support group. You can sample products and learn from other member's trials and experiences. A group will clarify any confusion and make you feel like you are not alone and you'll enhance your social network of celiacs.
Sloane: How can someone start their own group?
Linda: First see if there already is one, you don't have to reinvent the wheel. If there is no celiac support group in your area, contact the Celiac Disease Foundation for guidance on how to start one.
Published On: May 29, 2008