Two quick notes regarding the title of this post:
1) It took me way to long to come up with it…and I still think it stinks.
2) The word “influencers” makes my skin crawl.
Can we proceed now? Great.
Today we are talking about the danger of some gluten-free influencers out there (I’ll focus on just one post for today), how they promote unsafe food, and how the celiac community can sometimes do more harm than good.
Ok…first of all, what exactly is an influencer? Here’s the best definition I found: An influencer is an individual who has the power to affect purchase decisions of others because of his/her authority, knowledge, position or relationship with his/her audience.
And here is my definition of influencer: “An influencer is an individual who can’t survive without the brands paying them, so they put money first and their audience second. Many influencers will sell their soul to make a buck.”
I hear what you some of you are saying right now (cause I’ve heard it on Twitter when I rail against some influencers. Also because I have very large ears): “But Dude, you influence people. So aren’t you an influencer?”
I am not. Not once have I promoted a brand for money. I get offers. A lot. I’ve never said yes.
And note that there are some gf influencers out there who ONLY promote celiac-safe food. While they still are all about the brands, they don’t do so at the expense of the celiac community. So if you are one of those and you are reading this, this is not about you. Good? Good.
So let’s tell this story in 3 parts. We’ll call part one “The Post”, part two “The Truth” and part three “The Reality”.
The Post
There is a woman on Instagram with 174,000 followers (some/most fake I assume). I won’t give her name here, but if you offer her bread, she will say no. Yes that’s a hint. This woman has celiac disease and decided to make a career out of it. Last month, she did a paid post for Panera Bread. Yes…this Panera Bread. Panera is not remotely safe for those with celiac disease. Panera even says so themselves….calling their products “gluten conscious”. The worst part of her post? She used the #celiacdisease hashtag.
I left a comment on her post but got no reply. But I’ve been paying some attention to her ever since, seeing if she does more potential harm to the celiac community. Well…the other day, she posted about a pizza joint in Chicago called Lou Malnati’s. And yep…hashtagged it with #celiacdisease again. So I did some digging.
The Truth
Lou Malnati’s is not celiac safe. This is not a knock against the restaurant. They never say they are safe. They have some procedures in place, but about 75% of their menu items contain wheat, including of course the flour. And this is not a knock against anyone with celiac disease who eats there. They actually do have procedures in place to help minimize the risk of CC.
But “eating there” and calling it “celiac safe” are completely different things. The former is personal. The latter is irresponsible and potentially dangerous. And too many times, these influencers are guilty of this. They’re sellouts…plain and simple. You promote Omission Beer for $$? You’re a sellout? You promote Panera for $$? Sellout. You get the point.
The Reality
I jumped on Find Me Gluten Free to see what people had to say about Lou Malnati’s. It was the perfect microcosm of the celiac community. A lot of people saying it was not safe. And a lot of people saying “even though it may not be safe, I didn’t get sick so I give it 5 stars.” These same people list themselves as celiac and label the restaurant “celiac friendly”.
For the 37th time, not getting sick does not equate to being celiac safe. STOP DOING THIS. Again, I’m not saying don’t eat there. We actually include them on the GD App. But we never call any restaurant that is not 100% gluten-free “celiac safe” or even worse “celiac friendly”.
So…if you are a “gluten-free influencer”, please think twice about the brands you promote. Promote with a conscious…if there is such a thing. And if you are a fellow celiac, be careful who you follow. Not everyone out there has your best interest in mind.
Greed pays. Authenticity doesn’t. And that’s the world we live in.
Very well said Gluten Dude. It is shocking to me about how many celiacs will blindly follow the wolf in sheep’s clothing. And how many companies out there push their “sort of” gluten free foods and do their best to convince celiacs of it’s safety. What’s worse is this mixed messaging for everyone without celiac disease. The impact on me personally is that I get ridiculed by co-workers for not going out to eat at a place I know is not safe, because their other “gluten free friend” eats their all the time and doesn’t worry about it. If you have Celiac Disease, you should always worry about it!
Too many of these influencers tend to through caution to the wind…like it’s some kind of badge of honor to risk things.
Love this and thank you! So insane even friends w truly good intentions not BS friends will say I called ahead they have gfs options pls come…of course my answer is ALWAYS no ty (same w my in-laws of 27 years) they however are in their 90’s so I dont get upset when my amazing MIL says ohhhh the pizzeria sells gf pizza now let’s go for lunch ( poor thing, always wanting to feed me!) lol We are an extremely traditional Italian family fr NY, always made our own pasta, jarred 7/900 hundred bottles of sauce every August and made our our wine every September and we still have 26 of us for dinner every Sunday it use to be 27 w me, I’m not just gf I’m allergic to fish, I’m 98/99 % dairy free and completely nightshade free ( that is not by choice) then there are all my food allergies besides the fish
You take me out to eat lol 😂 Omgosh 🤦🏻♀️🤦🏻♀️🤦🏻♀️
I truly applaud you for all of your extremely hard work and I am very grateful for you Gluten Dude
I think we are the same person! I’m also from an Italian family. Grew up on Long Island. Bagels every Sunday morning. Pasta with the whole family every Sunday night.
I too have celiac, a severe seafood allergy and cannot consume lactose.
My family thinks of me as “difficult and impossible” because I don’t enjoy going out to eat and won’t eat what other people cook.
Too many cross-contamination incidents for me to take chances anymore 😞
Does she actually have celiac? It seems like she has been diagnosed with celiac only when it’s convenient for the interview. I’ve seen “intolerant”, “sensitive”, etc. Same goes for her influencer twin who wants to be gluten-free and followed. 😉 She was told by a sports medicine doctor to avoid gluten (her own words found on her website). To me, both are sell outs who might not even be telling the truth about their conditions in order to earn money.
“her influencer twin”
Hee hee.
I Hate when other diagnosed Celiacs day they can just pick off the bread or croutons. It makes a BAD name for the rest of us that know the dangerous of cross contamination. It minimizes the severity of our disease and makes it look like it’s “no big deal”.
[nodding my head in agreement]
I’m noticing that some of this is generational. Before 2014, there were standards but they weren’t finalized. People either had no life or they risked a lot of places. They used the barometer of “did I get sick?” instead of acknowledging that even if you feel well, you could have celiac and things like anemia don’t actually hurt in the “flu like” sense. (also, silent celiac is real) Until recently there were NO 100% GF restaurants at all. You might find a health restaurant like a raw food one in California that would be safe, but mostly you were out of luck.
With more exposure, there are more excellent options and we demand more from restaurants, prepared food companies, food bars, etc.
There are people in my area whose blogs I follow but I can’t follow their advice. I know they’re Celiac but I wouldn’t dare eat in a restaurant like that.
I’ve had arguments with a local pizza place which culminated in the guy saying “there are no standards for gluten in restaurants” and his point was basically “tough luck.” This same guy is speaking at one of the celiac support groups in the area next week. The people who run that one are mostly in their retirement years. A few young people have shown up, but a few left real quick. The previous meeting was about an MLM juice / vitamin vendor. This support group takes place at a well known hospital. It’s authoritative.
The other support group in this area gives properly safe advice, but the leader is a dedicated vegetarian RD who sounds more at home talking about weight loss than nutrition. Can’t win. But if someone asks my advice on where to go for a support group, I’ll send them to the vegetarian RD first, that’s for sure.
SMH or banging head on wall, depending on whether I’m alone or not.