Have you been thinking about starting a Celiac Disease support group?  Maybe the nearest one to you is two hours away?  Well, take a deep breath and jump in.  (With a little planning, of course.)  I did and you can too.

I was biopsy diagnosed in April of 1996. When the results came in, my gastroenterologist briskly informed me, “You have Celiac Disease.  All you have to do is change your diet,” and referred me to a dietician.  He made it sound easy.  As we all know, converting to a gluten free lifestyle is far from easy.

 The first thing I did was went home and googled Celiac Disease.  I also signed on to the international Celiac listserv.  Within a few days, I had uncovered a wealth of information on the condition, as well as the gluten free diet.  Thank goodness for the Internet, because it was a primary source of information and support as I adjusted to my new gluten-free life style.

The following week, I walked into my dietician appointment, hoping for some additional insight.  She asked lots of questions and I shared what I’d learned.  After an hour, she thanked me for teaching her more about Celiac Disease than she’d ever known before.  Her bill came in the mail a week later.

Feeling lost and alone, I phoned a local support group. The group only met semi-annually and, unfortunately, I’d missed the last meeting by two weeks.  Talk about bad timing!  As it turned out, it was a social group that primarily met twice a year for a gluten free potluck.  At that point, I made a promise to myself to some day start a monthly Celiac Disease support group that would always be there to help the newly diagnosed.  Then, like everyone else, I adjusted to being a Celiac with the support of my family and friends, plus a lot of research and frustration.