Tag Archives: health

and now, a word from my mother about celiac disease

When we were kids, it seemed like my sister was always sick. By the time we were in high school, my brother and I were convinced that she was the best con artist of all time, regularly convincing our parents that she just couldn't go to school, and could she please have some pudding.

Well, as it turned out, my sister has had Celiac Disease her entire life. It further turns out that our mom has it as well, so my brother and I were both tested a couple of years ago. The results were negative, so my gluten-rich diet of beer and bread was not affected, but my mom and sister — especially my sister, who is so sensitive she can't even use the same knife as I do if my knife has touched anything with wheat in it — have had to significantly change their lifestyle to adapt and survive.

My mom did a ton of research, the way you do when you're a parent and you find out that your child has a chronic disease, and ended up becoming something of an expert on Celiac Disease. She eventually took the knowledge she gained from that research, turned it into advocacy for people who have Celiac Disease, and recently started a campaign to increase awareness of what is called "The #1 Disease You’ve Never Heard Of."

I'm going to turn my blog over to my mom for a little bit, so she can tell you more. Take it away, mom.

Thanks, Wil. You're the best son in the world. Don't tell Jeremy and Amy I said so, but you're my favorite. [Note: The preceeding sentence may have been added by Wil for comedic effect. Everything that follows is entirely true, and written by my mom.]

As you know, since your little sister Amy and I were diagnosed with Celiac Disease 6 years ago, I have become a passionate activist to raise awareness about CD. Today I am taking my crusade to another level with Not Even A Crumb™ (www.notevenacrumb.com) FAQ: Celiac is the #1 genetic autoimmune disease in the world and remains the most misdiagnosed. It is estimated that 3 million Americans are affected and 97% don’t even know it…yet. There is no cure, no pills, no drug therapies. The “cure” is a Gluten-Free diet. The only disease in the world completely controlled by diet is also: “The #1 Disease You’ve Never Heard Of”.

I’m sure we all remember how sick Amy was for years before her diagnosis. By the time she ended up in the ER, she had lost over 20 lbs and couldn’t eat anything but potatoes and rice.  Until that day, none of us had ever heard of Celiac Disease, nor was it mentioned by any of the parade of Doctors who had entered her life at that point. 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. How different those years might have been if we’d only known that the “cure” was a Gluten-Free diet. And after 6 years on a strict Gluten-Free diet, we are both healthy and symptom free.

Two years ago I began volunteering with the Celiac Disease Foundation. I also created Not Even A Crumb™: “Easy to Digest Solutions for Living a Gluten-Free Lifestyle”. Now we have partnered with CDF to produce the 1st nationwide PSA to raise awareness. (we already have a commitment from CBS to air it!)The path to diagnosis didn’t have to be such a convoluted maze for Amy and me. The information was available, if we’d only known where to find it, or if our doctors had known to look for it. A national PSA will help unravel that maze, raise awareness, increase diagnosis and save lives. More information about Celiac and our fundraising campaign is just a click away: www.notevenacrumb.com

So there you go. I told my mom that she had an opportunity to reach a lot of people here, so if you feel inclined to share this post and the information included in it with your friends and family, that would be awesome.

Oh, one more thing: I've seen at least one local news report that misrepresented gluten-free diets as some kind of fad diet, like South Beach or Atkins or something people are trying to lose weight. It infuriated me that this station was so lazy and misleading, and many angry letters were written. Eventually, one of the stations ran a correction on their website (not on air, heaven forbid) that included a letter from my mom. If you hear some local newsmodel presenting GF diets as some kind of silly fad, instead of a medical necessity that saves lives, please point them to my mom's website, or the Celiac Disease Foundation.