How the mighty have fallen.
Flashback: I was diagnosed with celiac disease in (…trying to remember the exact date/month…) September of 2007. I was sick as a dog. I was confused. I was angry. And I was lost.
No…I wasn’t lost in the flood.
No…I wasn’t lost in space.
And no…I was not lost in the supermarket.
Well actually that’s not true. But let’s move on.
I was lost and besides the amazing Mrs. Dude, I had no one to turn to; to commiserate with; to connect with; to learn from. So I did what most newly diagnosed celiac did. Sat in the corner with a bottle of tequila and cried myself to sleep. Oh wait a minute…that was last night. I went online, found celiac.com, hit the forum, told my story and started connecting with my fellow celiacs.
And while I didn’t love the “big brother watching you” aspect of the site, where every comment was moderated and even deleted if there was a whiff of self-promotion or whatever else they deemed not acceptable, it still gave me comfort. I didn’t speak up very often on the site, but I would check in to get some of my questions or concerns answered.
Then I started my blog, found my own peeps, and realized that a lot of the info on the celiac.com forums was questionable at best and dangerous at worst. Not just on the forum, but from celiac.com itself. They’re firmly behind Cheerios and think the community is wrong to question them. They have sponsored blog posts from questionable products. Their website is like being in Times Square with all of the flashing ads. So needless to say, I have stopped visiting the site, but they still show up on my Twitter feed, since I follow the keyword “celiac”.
And what came up the other day? This gem: “Justin Bieber Ditches Corona Beer for Omission in Response to Gluten Intolerance”
The article reads like it came from a fanboy. It talks about his new marriage, a minor car accident, and how is looking for a new home more suitable to a married man.
What doesn’t it talk about? The fact that Omission beer is not safe for those with celiac disease. The fact that it is gluten-removed and not, as it’s called in the article, gluten-free. Imagine being newly diagnosed, coming across this article and celebrating the fact you can safely drink Omission beer. How can the folks at celiac.com live with that? My guess is 100% guilt-free.
You know what celiac.com’s tagline is? Celiac disease and gluten-free lifestyle news and support since 1995.
Perhaps they should change their domain to glutenfreelifestyle.com. Cause that’s a hell of a lot different than living with celiac disease.
By being one of the first to get online, celiac.com has power. And a big audience. But with power comes responsibility. Something I believe they have lost sight of. Perhaps it’s not too late to get it back.
The community deserves it.
Oh…and by the way celiac.com…1997 called. They love the design of your website.