Celiac Disease, Gluten & the Media


Yesterday was indeed a strange day in glutenville (glutentown? glutenburgh??).

It’s days like yesterday that I think us celiacs need to hire a top public relations firm to help us rise above the noise of the media-created gluten hysteria.

As I’ve said in the past, I HATE the fact that gluten has gone mainstream.

Hate it, hate it, hate it, hate it, hate it.

The ONLY benefit it has provided is more food choices as many companies drool over the potential profits and have jumped on the gluten-free bandwagon. Hell…even foods that were always gluten free now have GLUTEN FREE plastered all over the product.

Other than that, it is all negative. Some may say it has created awareness for our plight, but I think it’s had the opposite affect. I think it’s minimized it. For much of the public, celiac disease has become “that gluten thing”.

Which brings us to yesterday. One of my fellow celiacs sent me a link to a video that was called “Shit Gluten Free People Say”. Here it is for your viewing pleasure (update…looks like the video was wisely taken down):

Now look…I get it. “Shit [fill in the blank] Say” videos seem to be all the rage these days. (Of course, like anything else, we seem to take an original idea and beat it to a pulp until we’re absolutely sick of it, but that’s beside the point.)

And I am all for comedy…even at my expense.

But I’ve got two major problems with this video.

1) It’s just not that funny. If you’re going to go thru the effort of putting together something like this, at least make it entertaining. This is lame.

2) I just figured it was some homemade video, but it was actually made by a real company called Cappellos. Who is Cappellos you say? A comedy troupe? A marketing company? Nope. They are a company that…wait for it…makes gluten free pasta. Huh?? So they thought the best way to promote their business was to antagonize the very people who would purchase their products? Are you f’ing kidding me??

I get it…they were trying to be funny. Trying to go “viral” I suppose. And to their credit, they owned up to their mistake and even reached out to me directly and offered me some free samples of their food.

I’ll pass…thanks.

But this is the problem we celiacs face.

Most people now think gluten is a goddamn joke. You’ve got celebrities endorsing the gluten-free diet. Athletes saying it’s taken them to a different level. Doctors saying getting off gluten can be the cure to most of your ills.

And some of this may be true.

But do you see the dilemma it puts us celiacs in? Gluten can kill us. How do we get taken seriously? How do we separate ourselves from the pack of people who go gluten-free by choice and are only half-ass about it?

I don’t know the answer. I’ll just keep on writing and doing my part to get the word out.

But I do have a dream.

I dream that one day I will wake up and check my email for my Google Alerts on “gluten” and “celiac” and there will only be articles written by people who understand the seriousness of our condition.

I dream that “gluten free” won’t be seen as a trend but a real health issue.

I dream that the media moves on to the next diet-fad created by someone looking to make a quick buck.

And I dream that the world treats people with celiac disease as they would people with any other autoimmune disease.

Hey…a Dude can dream, can’t he?

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31 thoughts on “Celiac Disease, Gluten & the Media”

  1. Nice. No, seriously, nice job.
    Our twitter conversation about this topic last night at least re-affirmed that I’m not the only one to be frustrated by the “mainstreamy-ness” and the “faddishness” of our (required) gluten-free diet. I’m sure these folks thought they were doing it all in good fun, but the problem is (as you so eloquently put it), it wasn’t funny and in fact, was in poor taste.
    I’m so glad I found that “Celiacs” video LAST week, before I saw this new Sh*t video, or I may never have given it a chance. It proves that we CAN laugh at ourselves and at what we’re going through, and we can do it in a funny, tasteful, and even educational way. I even did something I don’t do often, and that is to share that “Celiacs” video link multiple times on Twitter and FB just because it brings a smile. That’s right – it’s funny, it’s about celiac disease & gluten intolerance, and it makes people smile.
    I’m not going to crucify the makers of that “other” video; just hope that they take the time to listen to what WE – the community to which they are selling – are saying about respect, about this not being the latest fad diet, and about how it feels to walk in our shoes.

    1. Hey guys, Cappello’s has been and will always be a gluten free food company. We strive to make the best GF products not for a trend but to provide awesome food to people forced to make dietary decisions. A lot of people in the Celiac community and GF community have not been thrilled with the video, but know if was never intended as an attack. We are all in this together and living with Celiac and being gluten free is tough and yes would never wish it upon anyone.

      That being said we hope you know the video was produced with the best intentions and never meant to upset the people we started our company for.

      My Best,

      Benjamin Frohlichstein
      owner @cappellos

      1. Appreciate the input Benjamin. But personally I just don’t understand the thought process behind the video.

        Nowhere in the video did you say who you were, unless I guess you read the credits at the end. At no point did you explain that the video was meant to bring awareness (though I don’t see how it would). At no point did you say it was geared toward people who have jumped on the bandwagon.

        All it did was make people who need to be gluten free look like idiots.

        We all make mistakes (and I don’t mean that in a condescending way).

        You live and you learn.

        Gluten Dude

  2. Well said Jules! Anybody who reads my blog hopefully sees that I have a decent sense of humor. But the video just didn’t serve a purpose. And the fact that it was done by a gluten company still just baffles me. It just doesn’t help our cause.

  3. Great article , I am pissed off at the gluten free fad BS . I was diagnosed with CD 9 years ago . It’s a shame the people who go 50 % gluten free for fun don’t develop CD !

    Your dream is great I wish CD would be taken more seriously . I read an article last week gluten free is not just for celiac’s but also for weight loss what a stupid article .

    One day I hope to have the power to look at fad gluten free dieter and say celiac disease and instantly they got celiac disease . That would teach them for making our only treatment look like a joke !

    1. Understand the frustration as I’m totally there too. At the same time, wouldn’t wish celiac disease on anybody. All I’m asking for is for the media to tone it down. Way down.

  4. I had someone pour beer on my food , I had just explained 5 mins before how I couldn’t have gluten due to CD yet they pour beer on my food when I went to get a drink . Luckily I spotted them .

    Also I have had a restaurant chef moan about celiac’s saying that celiac’s are the bane of his life .

    I would quite happily give these people CD , maybe it sounds evil but so is pouring beer on someone’s food who has celiac disease .

    Lets hope the media tones it down soon 🙂

  5. Brilliant post! The first video is incredibly lame and tacky…I hope you contacted that company and told them where to stick it. I enjoyed the 2nd video, though. We need more of those kinds of videos.

  6. I just went to their FB site (Cappellos) and gave them my 2 cents:

    sorry, but as a Celiac, I was deeply offended by your tasteless video. I felt it was a mockery of people who suffer from Celiac disease and gluten intolerance. It was lame, tacky and absolutely NOT funny in the least bit. Now I have a great sense of humor, but draw the line when it comes to this video. It does nothing to help people with these conditions, rather it just trivializes this whole issue and puts us as the laughing stock of the public. Totally disgusted!

    I have noticed that all of the comments above mine are in FAVOR of the video. I really hope more of us will go on to their FB wall and voice our opinions. I will probably get laughed out of there….

      1. EPIC FAIL! We take celiac disease completely seriously. The video “Shit Gluten Free People Say,” was intended to be light hearted, clearly we did a poor job. Please except our deepest apologies if this video offended you. Feel free to email us on how or what, you’d like to see in a better video.

        (ps the video has been deleted) (live and learn*)

  7. benjamin , glad you took the video down . Just don’t make anymore video’s talking about CD / GF , instead make a video about your gluten free pasta 🙂

  8. Glad to hear that the video was taken down. It was very distasteful. I know it was trying to find humor in Celiac Disease, but it just crossed the line. I think maybe my complaints on their FB page worked!

  9. Seems that there have been some nasty words exchanged on Cappello’s FB website by fans who are angry that I voiced my opinion about the video being distasteful. One referred to me as an “annoying little asshole.” Another said this: “Shame on you Capellos for caving to The whims of a few insecure, humorless control freaks.”

    I find it sad that for all of us who struggle with this issue to suddenly be lashing out at each other and getting hostile. But I guess there are some people who cannot accept that some people might have a different opinion than theirs. And they feel threatened by it.

    Anyway, I contacted these particular individuals and told them not to resort to assassination of character. Hopefully they will grow up, but otherwise, they just show their true colors.

    Why can’t we all just get along?

  10. Saw the video, didn't find it funny. (But then again neither was the Sh*t Vegans Say or any of the other Me Too variations.) I hate all the hype about gluten-free cause then people say, But you can eat quinoa, rice, or fill in the blank with grain or grain-like substance of choice, right. Actually, no. And I don't want to hear about any more new and delicious gluten-free products either cause they're just another label-reading exercise in futility and more weird chemical names to remember.
    Thanks for letting me indulge in a mini-rant. 🙂

    1. Haha Laura! I love it! I was with a large group of friends at an Italian restaurant recently and I wanted to scream when everyone told me “oh but you can have the steamed fish! It looks delicious!” Sometimes I just want carbs carbs carbs. I want lasagne, I want tortellini!! Not steamed fish. The waitress told me I’d be very welcome to bring my own cooked gluten free pasta with me next time and they’d happily pour their sauce on it and charge me the full price. Hilarious. Ok, so that was my little rant. 🙂

  11. As a new celiac (diagnosed in August), something that I am learning very quickly is that the mainstreaming of gluten-free foods seems to confuse people as to just how sensitive celiacs are to gluten. While someone who eats gluten-free for “health” reasons or intolerance can tolerate some contamination, I cannot tolerate ANY contamination. To some, this makes me annoying or picky or a hassle. Frustrating to say the least. Thanks for all that you do to call out this problem.

    1. You’re quite welcome Alysa. I’ll keep doing my best to help our cause. And if you have any questions as a newbie, don’t hesitate to ping me.

    2. This is the first comment that has really made sense to me as to why mainstreaming is or could be an issue. I think in lots of ways it’s great, but I defintely see how it could be harmful as far as the seriousness of the issue….

      I was at a restaurant last year and was really impressed when the manager brought out my salad {not my server} from a separate kitchen entrance altogether to avoid any cross contamination. I am not diagnosed celiac and am one of those who *tried* it to see what, if any, differences i noticed. I can’t fake them – it’s definitely the healthier way for me to eat, for my body. I can weasle in some gluten here and there without issue, but eating a diet high in gluten does not allow my body to be at its best – which has been confirmed after eating gluten again for a long period of time and now finally going back off it. I love the food awareness being GF gives me and making smarter choices all around {ie more produce instead of crackers, chips, etc.}.


  12. Hi Rachel , I just looked at the FB page and the comments are horrible 🙁 I bet most of the people who said the nasty comments know nothing about Celiac Disease.

    You see a few people on there talking about an allergy and us GF people , know way do they have Celiac Disease if they are talking about being just gluten free sounds more like a fad dieter .

    This is why the Fad gluten free diet is so bad for CD . The real annoying people are not the people with Celiac Disease but the people who have to go 50 % on a gluten free diet to try and be seen as cool lol.

    I have been on other sites and there are some very horrible people around , including some who are pretending to have CD and are down playing the seriouness of the disease . But eventually there lack of knowledge about CD catches them out .

    Imo the only people who understand what Celiac Disease is like is us the Celiac’s as we are the ones who have experienced the symptoms .

  13. thanks for standing up for me, Gluten Free. It is inexcusable behavior. That’s why I appreciate this site for telling the TRUTH and not sugarcoating things.

  14. I for one am kinda glad that CD has gone “mainstream.” I wouldn’t have been diagnosed 2 months ago without a co-worker telling me that I might have CD when we were discussing all the odd things I’v been experiencing over the last 2 years: digestion problems, weird skin rashes, severely dry and flakey skin, sinus congestion, severe joint pain, unexplained muscle pain, and easy bruising. Celiac disease was the least likely cause in my mind. And now that I have to eat, be, and live gluten free, I find I’m kinda thankful that I don’t have to explain CD to everyone I meet and anyone that cooks food for me. They seem to know what it is, why I need to avoid gluten, and how to adapt their cooking to my needs. Also, going mainstream means I can get more products gluten-free that makes life a lot easier! For instance: simple contact with gluten gives me skin rashes–and I didn’t realize what was causing the rashes before my diagnoses, and several years ago I gave up most cosmetics because they were giving me rashes. Recently, I have found out that many commercial cosmetic products contain gluten, many of them being what I used to use on a regular basis! Now that “gluten-free” is mainstream, more and more companies are either eliminating gluten and/or labeling their products gluten-free. I find this to be a very positive consequence!

    1. Appreciate your input Roxanne. There have been some positives of the gluten free craze. And I am certainly glad it’s helped you. But living with CD for the past five years, I can tell you there is a HUGE difference in the perception of our disease today. And it’s hurt our cause.

    2. I love that aspect of mainstreaming as well….in fact it’s because of it also that my cousin was able to consider it and after YEARS of trying to get pregnant, with a few nasty miscarriages in the mix, she was pg within 2 weeks of going GF. Not to mention all the other changes she noticed {energy, etc.}.

      And the amount of GF products out there is amazing and awesome – and I personally love the labelling of products. It makes new Celiacs more confident and for those of us wanting to limit, it allows us to opportunity to make choices accordingly {ie choosing where and when to add gluten}.

      I ultimately think knowledge is power…and the more that are aware, the better. I see there will always been negatives but all around I think the mainstreaming is ultimately a positive….otherwise you might be writing posts about how discouraging it is that Celiacs have no voice…are not heard….not taken seriously {ie no alternative products}.

      Sometimes I think there will always be something to complain about….I can’t imagine anyone choosing to eat GF without having noticeable results…I certainly wouldn’t.

  15. i’m in australia i found this post by chance – very interesting. why are there so many a**holes when it comes to gluten. you wouldn’t mock someone who has cancer. but really that is what we can look forward to if we don’t stop eating gluten. why would you try and make someone get cancer 🙁

    and i was recently googling around looking for some updated info on CD and came across Dr Oz’s show about Gluten. for a doctor on tv supposedly caring about the health of his fellow man i was deeply disappointed towards his attitude towards coeliacs and products available. if there wasn’t a variety of products and some convenience foods i would do nothing but cook all day. why the should i have to make my own pasta bread etc. why do gf products always cost more. talk about discrimination.

    if you really want to go gluten free then get yourself a proper medical diagnosis. if you just want to feel better then getter a healier lifestyle and leave the gf to the real coeliacs.

    it seems so true that only a fellow coeliac will understand where you are coming from. having been strictly gluten free for 10 years (only having 4 gluten poisionings) i am still wondering when i am going to feel better. allthough most of the extreme symptoms are gone i mostly just feel flat.

    hope they find a vaccine or something

    good luck to all you coeliacs out there.

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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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