It was way back in 2000 when my daughter was diagnosed with celiac disease at the age of 15 months. She was very sick for about three months ahead of time. She vomited every nine days (yes, I tracked it on a calendar), had horrible diarrhea, distended belly and was very crabby. She was my first child and I already felt like a failure and wondered how I would get through the next 17 years.
After three months, first and second opinions, she finally was diagnosed with celiac disease. She was better within a week of going on the gluten-free diet.
It was shortly after that time that I heard my great aunt on my dad's side of the family had been diagnosed with celiac disease and doing her best to live gluten-free over the last 30 years. I also had learned within the next few months that it was genetic. My husband and I both did the celiac blood panel and results came back negative.
We didn't ask anyone else in our family to be tested, however I remember having my second child tested at the age of two - still to this day her tests are negative.
In 2008, I was surprised to hear my brother had been diagnosed with celiac disease. In retrospect, I shouldn't have been surprised at all. His incredible fatigue would have him nodding off while we would be in the middle of a conversation. He was also being treated other health issues of which doctors didn't know the cause. The diagnosis of celiac changed everything and all of his symptoms are gone.
My father is also gluten-free, but (in my opinion) uninformed doctors testing him for celiac during stints being gluten-free left him in an area of no diagnosis. However, a strict gluten-free diet over the last 18 months appears to have improved his health issues. Since celiac runs on his side of the family, a celiac diagnosis for him would not be a surprise.
With my grandparents gone, my other daughter and I are the only ones with my dad's genes who could still get celiac. I know I have the gene and I am not concerned with genetic testing at this time for my daughter. We get the blood panel done every few years and of course if any symptoms appear.
The gluten-free diet not only made three of my family members healthier, it also fueled my fire for celiac awareness, education and advocacy to a point where I don't know where I would be without it. Celiac is the cause for so many health issues about which the general public and still many in the medical population don't know. I am hoping in some way I can help make a difference, along with all of the other celiac resources like the National Foundation for Celiac Awareness (NFCA) and other gluten-free and celiac bloggers out there.
- Amy Leger
The Savvy Celiac