I’m writing this post with a swirl of emotions (swirl? really Dude??). I’m gonna try to make it quick. Not sure how it’s gonna play out. I know I’ll get some hate (I mean…more hate) but here goes.
Oh…first let me say this is not about having advertising on your site or doing some affiliate marketing for products that are GOOD for the community. If you are HELPING the community and making some dinero on the side, more power to you.
Anyway…here goes.
I’m disheartened. I’m disappointed. I’m disillusioned.
Why? Because too many of the big voices in our community are selling out to the harm of the celiac community.
I was not going to say anything. I was going to just keep seething on the inside and doing my thing. But the more time went on, and the more examples of selling out I saw, and the more people that contacted me privately upset about it too, the more I decided I gotta let it out before I burst.
How are people selling out to detriment of our community? So glad you asked. Here are some recent examples. And mind you, these are not bad people. This is not a personal attack. At all. I just think they’re making really poor (and sometimes dangerous) decisions to line their pockets.
Case in point: The Celiac Disease Foundation, the self-described “nation’s public voice for celiac disease”, has their logo on every box of gluten-free Cheerios, even though people continue to get sick on them and General Mills’ testing methods are atrocious. GM is their biggest sponsor. The CDF was promoting them before the product even came out. Who does this help? Not the community.
Case in point: Celiac.com. The site that I first went on when I was diagnosed and connected with my fellow celiacs; the site that is the starting point for many celiacs; the site that still has a large audience.…that site. How? 95% of their articles are AI generated crap that are written for clicks first and the audience second.
Case in point: A popular celiac, with almost 90,000 social media followers, recently posted a picture of herself promoting Omission beer. Omission is not gluten-free and has been discussed on this site many, many times. Omission is not safe for the celiac community. When I commented that Omission was not safe, she deleted my comment. When I asked her privately and politely on Twitter to help me understand why she would promote a product that is not safe, she ignored me. When I asked her to just be honest and let her community know that all of her IG posts are sponsored, she accused me of stalking her. Nice.
Case in point: Promotion of the Atly app by influencers. Yes…they are a competitor of mine…but that’s not the point. They say they have vetted over 300,000 restaurants. Impossible. They use filters like ‘celiac aware’ and ‘celiac friendly’. Either a restaurant is 100% GF or not. If not, there is some risk involved. The goal of my app is to minimize that risk for you. The goal of their app is revenue, regardless of the safety of the community. And shame on these influencers, several of whom I have always respected.
I’ve got a lot more cases in points (case in points? cases of points??), but you get the gist. Plus…I
So yeah…I’m beyond frustrated. There is already enough misinformation out there. There is already enough jokes at the expense of our community. There is already so little attention given to the DISEASE because we tend to only focus on the damn food.
(“Did you know that having celiac disease increases your risk of cancer? Yeah…but did you hear they have gluten-free Cheese-Its now??)
So what do I say to my fellow advocates? If you are doing something JUST for the money, you may not be helping the celiac community. If more than half of your posts are sponsored posts, you may not be helping the celiac community. If you are in bed with companies whose practices are suspect, you may not be helping the community.
Every advocate’s position should be “community first”.
But for too many, it’s not. And that saddens me. Celiac is a serious autoimmune disease. It’s not a career choice.
Many thanks, as always, for listening.
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