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!
If they’re promoting/endorsing something, I stop reading. If moneys involved, I don’t trust them
I agree, unless they are authentic about it. I know…few and far between.
I have a huge problem with sponsorships. If you’re taking money from a company or corporation then you’re an influencer, being paid to promote products. The only person whose wellbeing you care about is yours. You are not acting in my best interests.
Half of CDF’s sponsors are from non-GF companies.
Hi. I like and use your app. I’m glad it exists.
I’m reacting to your statement, “the apps out there that promote non-GF restaurants as “celiac safe”. I’m not sure of the apps you’re referring to but I am confused because Gluten Dude includes restaurants that are not 100% gluten free so this statement seems hypocritical. While I don’t like eating at restaurants that are not 100% gluten-free I sometimes eat out when I’m traveling so I find it helpful to know where other people have eaten successfully.
Also, I frequently get a plain baked potato at Wendy’s and bring my own hot sauce to put on it. I go into the restaurant and talk to the person getting me the potato to avoid cross contamination. I’ve never had trouble with this and am surprised to see you slamming Wendy’s as an option.
I understand how frustrating it must be to see others profiting off misinformation while knowing that many followers don’t recognize that it is misinformation. I don’t use the sites you’ve mentioned. Once I see misinformation I quit referencing a site because I can no longer trust it.
I don’t understand why gf Oreos make me sick.
I expect I’ll get slammed for speaking my mind but I’m not sure that your post conveyed what you were trying to say.
I will never slam someone for speaking their mind. I’m all for it.
On my app, I never refer to any restaurant that is not 100% as safe. We provide the info the restaurant tells us and let you make the decision that is best for you. We don’t even call it gluten-friendly. Mostly cause I hate that term.
I am not slamming Wendy’s. I am slamming influencers for calling Wendy’s celiac safe.
I appreciate the feedback.
I’m right there with you. Slap a GF logo on it and people think it is safe. Dig deeper into their website and you will see that the product is made on machinery that also uses wheat “but they clean it between products.” Nope! That’s asking for trouble but “one cup tested less than 20ppm so it’s ok”. Not for me. I am over being micro dosed with gluten. So what do I do? I take 100% responsibility for what I eat. It’s almost a full time job! Dude, you were my first ❤️ gluten free expert. You and I have a very similar way we deal with our celiacs. 👍 We are logical, fact-based, and we call it like we see it. At this point, I’m over policing Facebook, Instagram, apps. If I see something that’s harmful, or just plain wrong, I’ll call it. I just don’t get involved in long Facebook posts arguing. So thanks, Gluten Dude. You have changed my world for the better and for that I’m eternally grateful. There are also uncounted others who will say the same. You Rock! Your app is The Best! Do what you do, let people do what they do because in the end we are responsible for own health. You just make it so much easier for us.
Carl Sagan’s Baloney Detection Kit:
https://www.themarginalian.org/2014/01/03/baloney-detection-kit-carl-sagan/
P.S. it also helps to be cynical, and above all be a researcher (if not, be curious and read, read, read) who accepts science and medicine and not flashy crap.
I have kids with celiac disease and usually double-check any info I get so I have at least two sources that say something is safe, if I can find more sources even better. I also do have one of those restaurant finding apps because we take a lot of road trips. However, I never take the rating at face value. I always make sure to only try places with many positive reviews AND where no one has claimed to get sick AND I ask my own questions before ever getting a table. If anything is sketchy, we’re out. The app is just a good starting point to help us narrow things down. So far, my kids’ bloodwork and biopsies have been coming back clean. Hopefully, it stays that way.
Celiac guy here living in Switzerland – diagnosed 2.5 years ago. Being a newly diagnosed middle aged man (50+) in a (celiac) world populated mostly by girls and young women it can be a rather lonely existence. It does help however to live in a country with some regulation, where food labels do matter and are more reliable. A highly developed BS monitor is always very useful (in life in general) but sometimes it’s necessary to trust other people. I buy mostly fresh produce (vegetables, fruits, meat and dairy) and products that seem reliable to me, mostly certified.
Question every restaurant that is not 100% gluten free, and even with the tiniest whiff of a doubt always always err on the side of caution. Make a nuisance of yourself until you are convinced it’s safe, or leave. I will never ever set foot in places like McDonald’s, KFC, Wendy’s or any other fast food place, regardless of what anyone says. Bottom line, I eat almost always at home, safest and healthiest thing to do.
I still do a blood test every 6 months, and my antibody levels are a good indicator – so far no major mistake made.
People, at least adults, need to accept that life as they knew it with spontaneous eating is over, there is no sugarcoating it.
P.S – if you can find them in the US – Schaer products are ALL entirely gluten free and quite good. I have no connection to the company – I just buy their products..
Always nice to connect with a fellow celiac EW.