One thing I know for sure, Celiac Disease hind-sight is 20-20. I was a skinny sickly kid with a big belly. So was my daughter, and from old photos, so was my mother. We were all plagued with recurrent infections, and chronic "abdominal issues". For as long as I can remember, chronic constipation and diarrhea were a constant in my life. Childhood doctors said I was "high strung" with a nervous stomach.Somehow I did very well in school and made the Dean's List as a freshman in college. I studied acting and enjoyed a career acting in countless TV Commercials. As an adult I stopped asking the doctors about my symptoms, I figured it was just me. Looking back now, I remember how often I got "sick" during the filming of food commercials. Shooting a commercial for McDonalds was brutal, but I ate 3 bags of Fritos while shooting the "Munch-a- Bunch" campaign without an issue. (*note: Fritos are gluten-free) Amy's story is much more dramatic. Our family will all remember how sick Amy was before her diagnosis. By the time she ended up in the ER, she had lost over 20# and couldn’t eat anything but potatoes and rice. None of us, or any of the parade of Dr’s that had entered her life at that point, had ever heard of Celiac Disease. Many thought she was into drugs or was anorexic. After her diagnosis we connected the dots backwards, and realized that we’d both suffered for years from the now well-known symptoms of Celiac.
It was Valentine's Day 2005, that our lives forever be changed. That is the day we got the results of Amy’s endoscopy. Who would ever think that being diagnosed with an incurable disease would be such a day of celebration? How different those years might have been if we’d only known that the “cure” was a Gluten-Free diet. There’s no doubt that Amy’s diagnosis has touched all of our lives in one way or another. And after 7 years on a strict Gluten-Free diet, (unless contaminated) we are both healthy and symptom free.
During the past few years, I’ve become quite the passionate activist to raise awareness about “the #1 Disease You’ve Never Heard Of”. For 2 years I phoned, emailed and snail-mailed anyone who might be associated with raising awareness. Finally I contacted State Senator Robert Huff and immediately got a response from his Chief of Staff. On February 1st, 2011 legislation was introduced to designate May, 2011 as Celiac Disease Awareness Month in CA. A date that is all the more poignant because February 1stis also the anniversary of my mother's death. We also know (from Google) that her cause of death from ITP is well documented as a secondary disease to Celiac. My mother was only 62 – too young to die of a disease that might have been prevented if she’d known to be tested for Celiac. The clock is ticking for all of us and now more than ever, my mission remains to raise awareness and pave the way to early diagnosis.
