I’m aware that the following post may come across as petty to some of you. No…not Lori Petty. And no…not Richard Petty either. But written out of jealousy or to get a pat on the back. I assure you this is absolutely true. Just kidding.
I’m very protective of the celiac community. I’ve written 785 blog posts on this website. Have posted countless times on social media. Have answered hundreds of emails from folks with celiac disease in need of a guiding hand. And every single one of these communications has been honest and from the heart, with the sole purpose of trying to help those in need.
But today at 7:13 am, as I sip my tequila, I mean coffee, I stand frustrated. Frustrated by influencers. Frustrated by sellouts. Frustrated by misinformation. Frustrated by the fact that those who seem to make the most NOISE have not only the biggest audience, but the biggest impact on people.
I have been a celiac advocate for (counting on my fingers) over 12 years now and I’ve never cared about followers/likes/etc. I don’t create posts to go viral. I create them to help people. But I’ve come to realize something: the numbers do matter. Because those who have the biggest numbers have a tendency to tell people what they want to hear (regardless that it may hurt them), reach the bigger audiences and have a lot more influence compared to someone like me. Authenticity doesn’t mean shit anymore. I’m actually not sure it ever did. And this can be dangerous.
Looking for some examples? I’m one step ahead of ya.
Celiac.com. Total Members: 116,397
I’ve written about these folks several times before so I’m not going to rehash anything. While their intentions may have been pure when they first started, they started putting profit over people a long time ago. It’s a shame cause this is the first place I came to when I was first diagnosed.
Celiac Disease Foundation. Facebook Followers: Over 109,000
They promoted the new (supposedly) gluten-free Cheerios before we even knew their production methods. Why? Cause they got a shitload of money from General Mills to put their logo on every box of Cheerios, essentially endorsing them. I wrote about them here.
GlutenFreeFollowMe and NoBread. Cumulative Instagram Followers: Over 400,000
I just can’t with these two.
There are a lot more, but I’ll stop there. And don’t get me started on the apps out there that promote non-GF restaurants as “celiac safe”. It’s insanity.
So how, as someone with celiac disease, do you cut through the BS? How do you know who to trust? I’d like to think most of us have a BS monitor built in, but if you follow world news and current events, you know this just isn’t the case. People WANT to believe certain things (like you can eat safely at Wendy’s) and there are folks out there who will tell them just what they want to hear. Why? Power and money. In a normal world, this is bad enough. But when it comes to celiac disease and your health, it’s downright dangerous.
I wish I had some magic answer for you. I wish I could tell you most of the celiac ‘influencers’ out there with the biggest audience have your best interests in mind. I also wish there was no war, poverty and racism, but wishing something doesn’t make it true.
So I’ll ask you, my fellow celiacs. How do you cut through the BS and know who to trust? And remember, this is a no judgment zone!