I’m aware that what follows might seem a bit petty to some of you. No…not Lori Petty. And definitely not Richard Petty either. It’s not written out of jealousy or to fish for compliments. I assure you, this is the real deal. Just kidding.
I’m fiercely protective of the celiac community. I’ve penned 785 blog posts on this site, made countless social media appearances, and fielded hundreds of emails from fellow celiacs in need of guidance. Each communication has been genuine and straight from the heart, with the sole aim of lending a helping hand.
But today, at 7:13 am, as I sip my tequila—I mean, coffee—I find myself frustrated. Frustrated by influencers. Frustrated by sellouts. Frustrated by the rampant misinformation. Frustrated by the fact that those who make the most noise not only have the largest following but also wield the most influence.
I’ve been advocating for celiacs for (counting on my fingers) over 12 years now, and I’ve never cared about followers or likes. I don’t craft posts to go viral; I craft them to assist people. However, I’ve come to a realization: the numbers do matter. Because those with the biggest numbers tend to tell people what they want to hear (regardless of whether it’s harmful), reach larger audiences, and hold more sway compared to someone like me. Authenticity seems to have gone out the window. Frankly, I’m not even sure it ever existed. And that’s troubling.
Need examples? I’ve got ’em lined up.
Celiac.com. Total Members: 116,397
I’ve talked about these folks before, so I won’t rehash it. While their intentions might have been noble initially, they’ve prioritized profit over people long ago. It’s a shame because this was the first place I turned to when I was first diagnosed.
Celiac Disease Foundation. Facebook Followers: Over 109,000
They hopped on the (supposedly) gluten-free Cheerios bandwagon before we even knew how they were made. Why? Because they got a boatload of cash from General Mills to slap their logo on every box of Cheerios, effectively endorsing them. I’ve covered this here.
GlutenFreeFollowMe and NoBread. Combined Instagram Followers: Over 400,000 I just can’t with these two.
There are plenty more, but I’ll leave it at that. And don’t even get me started on the apps out there promoting non-GF restaurants as “celiac safe.” It’s ludicrous.
So how, as someone with celiac disease, do you sift through the BS? How do you know who to trust? I’d like to think most of us have a built-in BS detector, but if you follow world news and current events, you know that’s not always the case. People WANT to believe certain things (like being able to eat safely at Wendy’s), and there are folks out there who will tell them exactly what they want to hear. Why? Power and money. In a regular world, that’s bad enough. But when it comes to celiac disease and your health, it’s downright perilous.
I wish I had a magic solution for you. I wish I could assure you that most of the celiac “influencers” out there with the biggest following have your best interests at heart. I also wish there were no wars, poverty, or racism, but wishing doesn’t make it so.