Is this Celiac Awareness or Fear-Mongering?

celiac afraid to eat

I’m warning you ahead of time…this post may be a bit sloppy and all over the place (kinda like my sex life when I was younger) as I’m still trying to grapple with my thoughts behind it. Ok…here we go.

As most of you probably know, May is Celiac Awareness Month and lots of bloggers are doing their best to get the word out about our wonderful little autoimmune disease. Not only my fellow bloggers, but the large celiac organizations are also trying to create awareness. All good, right?

Then yesterday I saw the following tweet:

My interest being peaked, I reached out to Brianna and asked what’s going on (like Marvin Gaye, but not nearly as cool). Here’s what’s going on.

Recently, the following organizations joined forces for a new celiac awareness campaign:

  • Celiac Disease Foundation (who block me on Twitter?!)
  • Beyond Celiac
  • Gluten Intolerance Group
  • Canadian Celiac Association
  • National Celiac Association

What’s the campaign you say? Good question. I’ll let Beyond Celiac explain it.

“The visually enticing food-prep videos feature seemingly delicious items like pasta salad, cupcakes and pizza. However, there is one jarring twist – they include ingredients such as razor blades, scorpions, and thumbtacks, viscerally communicating just how painful it is for people with celiac disease to eat food that contains gluten.”

And here is one of the videos:

The other two videos are the same idea. Putting ungodly dangerous items in food to show…to show…to show…I’m not sure really. All I know is that something didn’t sit right. So I reached out privately to Beyond Celiac and here’s how the brief conversation went:

ME: Hi folks. Just saw the videos where there are razor blades in the cupcakes etc. Can you provide some insight behind the logic for these videos? It comes across to me as fear mongering and not the message we want to send the community. Would love to hear your side of it though. Thanks.
THEM: Hi Scott, thanks for reaching out. As you know, the videos are part of a partnership campaign between five celiac disease organizations (Beyond Celiac, CCA, CDF, GIG, and NCA) and the creative marketing firm Hill Holiday. These videos are intended to raise awareness among those who don’t already know about celiac disease or who may have confused a serious genetic autoimmune disease with a fad diet. You said it well in a tweet yesterday — One crumb and our body attacks itself. Most people don’t know the challenges of living with celiac disease and struggle to understand how dangerous gluten is to people with celiac disease. The campaign is designed to build empathy for those of us who have to be wary of every bite of food. It is provocative in order to focus attention on this reality and raise awareness with the general public. As an aside, just this week I was served a kale salad that had been “enhanced” with farro for the spring menu, and my reaction to seeing my usual order come with gluten on it reminded me of the pasta salad with tacks. Good thing I could *see* the the gluten… this time.

A few thoughts (cause don’t I always??):

  • Hill Holiday? Hill Holiday?? Why does that name sound familiar? Oh yeah…they were the creative geniuses behind the insidious Party City Super Bowl Ad where they called gluten-free people “gross”. Refresh your memory here. I suppose they are looking to make amends. Of course the CDF (who seriously block me on Twitter?!) couldn’t say enough nice things about them, saying they “are deeply appreciative of Hill Holliday’s outstanding efforts to help people understand what celiac disease sufferers face every day.”

  • I get what they were trying to accomplish; providing shock value to drill home the point that food can be dangerous to those with celiac disease.
  • This is nothing against any of the organizations involved, except of course Hill Holiday and the CDF (no really…they BLOCK me on Twitter).
  • It was not well received by many on Twitter. Other advocates have called it “ridiculous”, “alarming”, “horrifying to children”, “a wasted opportunity”, “hateful” “the worst thought out campaign I’ve ever seen”, and “fear based”. And these are from advocates I respect. One advocate even said: “My kids watched the videos and my youngest spouted ‘What’s wrong with them? How stupid!'”
  • To be fair, it was well-received by others that I saw on Facebook, calling it “spot on”, “so true” and an “accurate illustration of a celiac’s suffering”.
  • Part of the campaign includes opening up a pop-up bakery in Boston’s busiest train station. Cupcake flavors like Razor Blade Bliss, Chocolate Thumbtack Surprise, Vanilla Rusty Nail Crunch, will be on display to “first surprise and then educate passersby.”

So what’s my take? (By the way…if you’re still with me, god bless you. I told you I’d be all over the place on this one.) I think it sends the wrong message. Do we need to be diligent? Yep. Do we need to take precautions? Absolutely. Should we live in fear? NOOOOOOOOO.

There is an unbelievable amount of fear-mongering online. “You can’t have this” and “you should stay away from that”. Some of it is accurate. Some of it is complete BS. Stick with the facts. Do not live your life afraid to do things simply because of GLUTEN. No matter what people say, it’s NOT everywhere and you CAN lead a normal life (with a few adjustments). I personally embrace food. I’m certainly not afraid of it.

Again…I get the intention. I just don’t think scaring the crap out of people is the answer. Would you want to get diagnosed with celiac after seeing these videos?

That’s my two cents. I’d love to hear from you, including the associations who put the campaign together. Except the CDF. Why? Because they BLOCK me?!

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26 thoughts on “Is this Celiac Awareness or Fear-Mongering?”

  1. You are 100% right in what you see this as – I am stunned that these groups would find this approrpriate and cause more harm to those who have this disease. Make it real – what they did makes matters worse and again harms all those who are just trying to advocate for eating safely and educating others so there is more opportunity for understanding so all that surrounds around being able for school, restaurants, friends and family to understand and not see “CRAZY” when it comes to celiac disease. That cup cake video is beyond words. While you may think I’m crazy – just how great it would be to do a class action suit for them portraying it that way – therefore setting back all we really stand for – for 40 years instead of 10. How does that help? Thank you for sharing. You don’t see peanut videos like that – because that disability is taken seriously.

  2. Yes! the campaign misses the point and it is probably the work of an inexperienced and overvalued marketing group. I can see razor blades but not see the wheat in soy sauce.

    The campaign does more harm than good and does not convey the real message well.

  3. This is so bass-ackwards I’m not sure where to start! Having Celiac Disease and being a 30-year marketing and advertising strategist and writer, the kid had it right…”How stupid.”

    First, if you’re trying to make people who suspect they could have CD aware of the dangers of gluten you have now scared the crap out of them that they will live in fear of food and will never be able to eat good stuff like pasta and baked goods. Nice work, guys.

    On the flip side if you are trying to create awareness of CD as a real and serious disease, this campaign is an epic fail! Us folks with CD already know that other people don’t give a fat rat’s arse about how we view food. It’s not their problem. One of the first things you learn in Marketing 101 is to answer the question “Why should I care?” Are viewers supposed to look at this and have empathy for the poor neurotic Celiac patients who see razor blades in their frickin cupcakes?

    I am so disappointed in these organizations, especially Beyond Celiac, for approving this ridiculous campaign.

    End of rant, for now.

  4. I’m disappointed pretty much daily on the general attitude about this disease – by the media, other people in general, physicians and so on – the groups that partnered with the ad company to make this just leaves me shaking my head – they have zero credibility anymore.

    This type of campaign only makes things worse. We do see food differently, but this type of hype makes us seem weird. When I find someone I don’t have to explain myself to, understands the disease and takes me seriously I’m overjoyed. This isn’t going to help – all people will remember is the odd commercial with razor blades in the muffins.

    The slice of bread and the crumb representing 20 ppm is always the best analogy I have found. Let’s keep it real and relatable.

  5. I would like to post an opinion of the opposite side, since it seems you only attract your loyal followers. It seems like this campaign is not intended for people with celiac. Of course, someone on the outside will never know what it’s like to have celiac, and these people and organizations are trying to educate the ignorant public. It’s trying to say the celiac disease is not a fad diet, and is in fact a serious medical condition. As some who suffers from Crohn’s disease, aware the 2 diseases are very different, but an auto-immune disease non the less, I would be elated if there was an awareness campaign about Crohn’s.

    Maybe just take a second and stop and think about the good these organizations are trying to do.

  6. I agree completely! My goodness, I was diagnosed with Celiac Disease 13 years ago and I live a completely fear-free life. I have traveled all over the country and out of the country and 95% I do just fine. Once in a while, I have an issue with cross-contamination, but it has never happened outside the country, just here, in popular chain restaurants with gluten-free menus. I want people to know that they can live a normal, wonderful life and there are plenty of foods to eat that do not contain gluten! One reason I do not support designated Celiac Disease organizations is because of ridiculous campaigns like theirs.

  7. Alrighty, my turn.
    WHAT THE F*CK????? Bad commercial for awareness and you are right “you have Celiac!, yes it took a lifetime to figure it out!!, but hey don’t eat the food because it may be contaminated with RAZOR BLADES, TACKS, etc ….”.
    Hmmmm, no.
    Instead let’s raise awareness like in the Celiac Project Doc which was eye opening for so many.
    Good commercials made by good advertisers (is there such a thing???)???
    Celiac sucks big time, BUT knowing is huge.
    As I said 8 years ago, “tell me what I can eat “.
    And blocking you?? Really???!
    So let’s make this May (21 days left), informing or showcasing how folks live, how does the family who doesn’t have Celiac deal, blah blah blah
    When I go to the ball game tonight I get to eat something safe at Camden Yards because Boogs takes it seriously, cool huh?
    I’ll post this kind of positive on Instagram tonight.

  8. I might be an outlier, but I actually liked it. Granted, I watched it at work, with the sound off, so all I saw were the visuals. But it drove home the point that eating gluten free is more than a fad diet for people with celiac. 99% of Americans (maybe more) just don’t get it. Maybe seeing a cupcake with razorblades will help them understand the kind of pain that people with celiac get from ingesting the smallest bit of gluten. That’s a visual that will stay with people for a long, long time. Guaranteed. Ads are about raising awareness. You could ho hum your way through something, not make an impact, and never move the needle. At least with this, people might remember.

  9. I had a conversation with my GI doc last week about the uphill battle to raise money for Celiac research because of the common belief that all we need to do is change our diet to heal. CD doesn’t seem life threatening enough for people to want to financially support it as much as an organization like JDRF that can raise $6 million in one event (I witnessed it in person.) So I’m down with the awareness concept of this campaign but not with the tactics. Honestly, if my boys and I were going through the diagnosis phase and saw THAT I’d be terrified right now. (BTW, son #1’s reaction to gluten exposure is not pain, he vomits for 5 days. They need to show someone vomiting up the razor blade cupcakes to really be accurate. Better yet, flying out the other end.)

    Maybe while we’re all confronting CDF about their poor choices, we can throw in a quick jab about getting their idiotic logo off the Cheerios boxes. Or ask them to re-film their cupcake video and replace them with razor-laden-Cheerios instead. I could scream all day about the stupid Cheerios thing. I’m heading to Twitter RIGHT NOW. Sorry, dude 😉

    Well, Marilyn Geller did speak in front of congress. She is trying.

  10. I understand where this could seem like fear-mongering, but I also see what they’re trying to say. I do feel fear when I eat food that I haven’t made! I recently told a friend that having dinner wasn’t a good plan because my hypervigilence makes eating out terrifying. I only have one or two places that I can eat and not end up in a PTSD attack because my hypervigilence skyrocketed. (It doesn’t help that I live at least a 30 minute drive from anywhere I’d attempt to eat out, so getting home to safety when glutened is a real pain!) I think the most jarring part of this ad is the cheerful music. I’m thinking we need an ad more like those ads for the meds for people with IBS and Crohn’s. Something it shows us going about our daily lives in peace because we didn’t have that donut at the work party or something similar. That would be far more positive!

  11. I didn’t have a problem, I actually thought- good, now people will understand why I can’t eat “just a little bit” of gluten. Because it actually feels like razor blades and blow torches.

    1. Cathy Lawless Bischoff

      Diane, exactly! That was my first reaction. Maybe my Mom will finally understand after
      20 years. But, reading all the comments here, I have a feeling it will backfire. I don’t
      want to be known as “those annoying razor blade disease” people. The jokes won’t stop. I don’t actually mind the jokes too much because I know they are aimed at the
      “fad dieters” not us. Will this ad campaign work? Will restaurant chefs “get it” now?
      I don’t know. (Will my Mom “get it”?~ not a chance. She’s 90 yrs old so she gets a pass.) Could the ads have been better made? Oh yeah. However, maybe a little controversy won’t hurt.
      Brooke, yes a handful of Cheerios into the mix would have been a nice touch.

  12. I’m with Jennifer on this. My biggest problem is eating out. Celiac, to me, IS life changing. If I get cross-contaminated, I get a rash that lasts for months, heart palpitations (I do have a heart condition that gets exacerbated with cross-contamination), dizziness, brain fog, nausea and vomiting, and vision problems. That being said, I have a couple of restaurants where I eat out very occasionally, but truth be told, I still feel a bit hesitant that someone in the kitchen will cross-contaminate the food. It has happened more than once. For those people who have traveled and have had no problems, I applaud them. Bottom line, I don’t really have a major problem with the video.

  13. I agree, there was something ‘wrong” when I watched it, but I couldn’t put my finger on it. My husband just watched it and we agree, it fails to make the connection between the flour/gluten and the razor blades. Whether it’s fear mongering or not, is not the issue. It’s a failure to communicate the fact that gluten is in there. The word gluten is not there at all. Who will google Celiac Disease to figure out why that cupcake was dangerous?

    With so many organizations, they really needed to talk to some (non Celiac) family members and show them the ad and see what they say. People with the disease automatically know that the flour is gluten and it’s a big problem for Celiacs. But it’s not saying enough to people who haven’t made that string of connections.

    It could’ve started, “I’m not trying to annoy you with my gluten free diet. And I’m not being paranoid when I refuse to eat the cupcakes you made me. Let me show you why… ” (video of someone making “gluten free” cupcakes, paused at intervals to show how the nearly invisible dusting of flour from the counter, or the crumbs from near the toaster are being tracked). And ended: ” Now you know why I have to refuse your wonderful cupcakes, but thank you for thinking of me. It’s kind of you, I just can’t eat it.” Or some such. One way to see how it’s being tracked, and yet invisible is to use powder that glows in the dark. Such videos are made to show how bacteria cross contaminates from one food to another.

    It would’ve modeled polite behavior and gotten a complicated point across, a point that really needs to be made.

  14. There’s a lot to unpack here.

    First, I understand the concept of the videos, the cheery music, etc. Those little cooking videos are really popular on social media and the music is part of what grabs people’s attention. Pouring a cup of tacks or razor blades in a recipe is designed to make people notice. However, using the agency that did those awful Party City commercials is a head scratcher and seems to be designed to help them feel better by maybe giving the organizations a big discount on the work? Plus the videos definitely seem to be targeting the non CD community in order to educate and attract some empathy. The visuals could’ve been different though, to get the point across better.

    Second, as the mom of a teen with CD, I am fearful every single day. I’m fearful that my son is getting accidentally glutened at a friend’s house, or is starving because there’s nothing for him to eat at an event, or that some kid will think it’s funny to intentionally hand him a nonGF snack. I fear that the server or cook at a restaurant is too careless to take precautions against cross contamination. Or that they are annoyed by one more request for gf food so they ignore it. I fear family gatherings. I fear about sending him off to college. I fear about his ability to travel freely. I feared every day during a recent trip to Europe, which went great, only to have him glutened at a restaurant up the street he’d eaten at dozens of times when we returned. I fear that he’ll get glutened right before finals or an important interview. I fear that he’ll internalize the media messages from stupid Party City or moronic Jimmy Kimmel and so many others. I fear about problems that are percolating in his body right now that we won’t know about for years, and what they may do to his quality of life. I fear about his kids having to deal with all of this too. I’m a mom and I can’t help it.

    So if it takes strange or even poorly-conceived campaigns like this one to get one more person thinking about the reality of CD, I’m not going to complain. I’m not saying this is perfect, or even necessarily that good. But it’s a different message in a barrage of negative ones portraying the gf community as silly, frivolous or faddish. It’s a small, stumbling step forward, and we need many many more to make a difference in the lives of our loved ones with CD.

  15. So, I was just diagnosed with CD about a month ago. Nobody I know has CD and no one else in my family has been diagnosed with it. Being from a rural town, nobody understands it. “A little bit won’t hurt!” a friend tells me. “Oh, just take the bun off” they say at a work event. “Please, I worked so hard on this food (at a potluck in which I intended to only eat the food I brought), you have to try it!” “God, you’re picky!” (after turning down an invitation to lunch at a restaurant that couldn’t accommodate). I feel alone and I was so sick. My villi were described from my biopsy as “patchy with near complete absence.” I wasn’t digesting food, had acid reflux so bad that I was regurgitating my stomach contents daily, and people were applauding me for whatever diet I was on. It was scary and I am so thankful I now know what is wrong. But, nobody gets it. Sometimes I tell people that eating gluten would be the equivalent to eating broken glass. That analogy actually helps them realize that it is serious and why I’m now being ‘picky’ or ‘hyper cautious’.

    I like this video, to a point. It could have been improved with a reference to gluten as the razor blades. Yet, I don’t see the point as trying to educate people with Celiac Disease about the severity of the disease. We already know. It’s to educate other people (spread awareness) who think the disease is made-up, a fad, and generally not serious. It IS serious and it was killing me.

  16. My jaw would have dropped when I saw the muffins with razor blades (had a tooth pulled today so it dropped in my mind). I think this kind of advertising is hurtful to the CD community as it looks melodramatic and foolish! I’d much rather see real patients describing their symptoms and how CD has effected their lives. I’m not the one with CD (have my own autoimmune issues, so I take them all seriously), but my husband is. We all eat gluten free to protect him and to stave off autoimmune flares for the me. He reacts to less than 10 ppm. He recently developed a DVT and has started having reactions again since starting anticoagulant treatment. I feel like there are SO many positive ways they could have addressed this to get real support and understanding. So disappointing.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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