A Lesson in Celiac Advocacy

gluten free haircuts

Breathing. The key to life.

Get an email from a client that makes you upset? Don’t respond right away. Breathe.
Someone trolling you online? Don’t engage. Breathe.
Someone makes fun of your autoimmune disease? Don’t fly off the handle (yet). Breathe.

I learned this lesson in the past 30 minutes.

Mrs. Dude just sent me the above picture. It is from a salon right right down the street from the Dude Ranch. She was driving by and was so stunned by the sign that she pulled over and took a picture. I’ve blurred out the salon name (which I’ll explain why below), but you can see the chalkboard out in front. It says “Gluten Free Haircuts”.

Now I’ve had a bad day and am in the middle of a lot of stressful sh*t in my life. So my first reaction was pretty much rage. On a good day, I’ve had it with the jokes. On a bad day, forget about it. I have no patience for this ignorance anymore. But still, there was a part of me that really tried to give the benefit of the doubt to the owner. Maybe she meant that all of her products were gluten-free. Doubtful…but small possibility.

Now comes the decision. Do I go down there in person and potentially lose it, or do I take a few minutes…BREATHE…and give them a call? I chose the latter. Here is how the conversation went.

Salon: Hi…so and so Salon…can I help you?

Me: Hi…is the owner or manager there?

Salon: No she is not. Can I help you?

Me:I just noticed that you have a sign outside that says Gluten-Free Haircuts and I was wondering what that meant.

Salon: Ha, ha, ha…that’s just a joke…ha, ha, ha. (Literally, she was laughing like I just recited an Abbot and Costello routine.)

Me: I have celiac disease and gluten-free is what keeps me alive. I’m a big celiac advocate and it is not a joke to me or the hundreds of thousands of people who suffer from celiac disease. Jokes like this make it so much harder for us to be taken seriously. My wife had breast cancer. Would you have a sign that said “Cancer free haircuts” or “chemotherapy free haircuts”?

Salon: [hemming and hawing] Ummm…let me call the manager and have her give you a call.

Now I figured I’d maybe get a call the next day, if that, in which case I would have gone down to the salon myself with a wet sponge.

Within two minutes, my phone rang. I won a trip for two to Tahiti!! Just kidding. It was the manager. And she apologized…profusely. And I mean really profusely! Almost to the point where I had to ask her to stop apologizing. And the offending sign had already been taken down. She saw the error of her ways and she responded accordingly.

Look…I cannot wait until the jokes completely stop. Until then, we must keep doing what we do and be the best advocates we can be. Sometimes that may mean getting up in arms. And sometimes not.

So the next time you have a chance to advocate…breathe. You may be surprised at the results.

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33 thoughts on “A Lesson in Celiac Advocacy”

  1. Honestly — who cares? It’s exhausting enough working to feel OK each day. To go around policing people who likely don’t know any better is not something I need added to my plate. What does that get us?

    1. It makes a difference. I just left a doctor who believed that such “jokes” make sense because “all you people who claim that bread can make you sick are just attention seeking”.

      All it takes for evil to flourish is for the good person to do nothing.
      someone wiser than me said that.

    2. Is Sam being serious or facetious? Does Sam truly have celiac disease, and if so, for how long has he or she had the diagnosis? Shall I assume s/he had major brain fog at the time of his/her comment? I’m currently glutened – not from cheating on the diet, but from some miniscule amount of gluten I apparently ingested unknowingly. This is one reason we must advocate and not take the jokes lightly. Were people more educated regarding the gravity of our disease, it’s possible that I’d feel more “okay” today.

  2. One more person educated. I think that was worth it. Baby steps. Maybe she’ll educate someone else. Maybe she won’t laugh at the next person’s joke and THAT person will stop making the jokes. It’s a domino effect. If we don’t do it, who will? I think it’s worth it and I’ve definitely had good experiences and bad with educating and yes, it’s frustrating. But I think it’s still important.

    Nice job. And great thanks to her for her response.

  3. What I would also question them about is whether the products they sell are gluten free. I had a dry patch on my head for awhile and one day after leaving the salon my son just happened to read the ingredients of the hair gel I use and it had wheat! I had never thought to look having never reacted to a hair or skin care product before. They might use it as a joke, but what if someone who truly needs gluten free went in there and their products weren’t gluten free? They posted it as a joke but it could also be misleading.

  4. The other day I was shopping at a local market and I went in the cooler where it said they had gluten-free items. On one section they had vital wheat gluten in Ziploc bags made by a local producer next to gluten-free flours also in the same bags. Obviously, we celiacs know that if there were to be a puncture of the wheat gluten bag and any of it dusted the gluten-free flour bags that could hurt a lot of people. Not everyone is educated enough to know that so I decided to explain to them what I saw and why it could be a problem. I was very polite about it. The cashiers that were waiting on me and another customer looked at me like I was nuts and told me they have been selling it for quite a while like that and there had never been a problem. They just kind of blew me off after that. I was kind of ticked off but held off on messaging the owner of the market until I got home and could think about what I really wanted to say. I explained to them what the problem was and how if one of those bags have been punctured it could have infected a lot of people and hurt a lot of people. I also said that unless they have family with celiac or they suffer from it themselves, I understand that not everybody has an understanding of what it is and what it can do. Again I was very polite in my message. Within about 30 minutes of sending them the message on Facebook I received a message back saying that they would immediately address the issue and make the proper adjustments. They said that the cashiers were right that they had never had a problem but that they understood my concerns and would take care of it. Very polite very professional response. I have not been in there yet but I will definitely be going in to check out what they did.

    1. My response to “it’s never been a problem” is “that you know about.” Sometimes when we get glutened, we either can’t isolate how, or we don’t go back to the source and explain they made us sick. So the chances that the store knows it’s truly never been a problem are small, at best.

  5. I believe it is a learning process as it has been for me. I went into a bakery here in the town for which I live. Advertising gluten free cupcakes. I was happy finally a place close that I don’t have to drive twenty mins just to get my sweet tooth fix. But was so disappointed when I asked where the cupcakes were. To my surprise to see them in a case on a middle rack with non-gluten free cupcakes on top and below. I did send a private message to the owner( I very kind message.). But was not surprised I got no response. I just would like people to realize it not a fad for a lot of us.

  6. I own a small, local yarn shop. Wool, alpaca, cotton, etc. for knitting, crochet, weaving. Maybe I should advertise as a gluten-free yarn shop because, well, I have Celiac Disease. Nope, still not funny.

  7. If you don’t mind, Dude, I’m going to steal “I have celiac disease and gluten-free is what keeps me alive.” It’s direct, accurate, and pragmatic–and in these situations I need a standard non-emotional response. Thank you!

    Good on you for holding it together and approaching them calmly, which will encourage them to pay it forward. And serious thanks to the owner for repenting so wholeheartedly. If only that were the standard, right?

    1. ME TOO! It is perfect, succinctly stated and indicates the seriousness of the issue. COnsidering that I have other issues, and clearly don’t tend to be very succinct, I really need that perfectlly stated phrase. Also, the cancer comments. I have tried to come up with something that illustrates the abusive nature of such NON jokes for a long time. BUt not everyone understands. Cancer they all get.


  8. Sam, taking the time to address issues such as that not funny, tired joke sign takes the Celiac community one place: FAR. At least 2 people in that salon were just educated and sensitized to the seriousness of this autoimmune disease in a very concrete way. Tomorrow, no one will drive or walk by it and laugh or cringe, depending on their awareness. I won’t have to drive by with my daughter with Celiac and hope that she doesn’t see it. Advocating is hard, tiring, dirty work that has to be done. Nine times out of ten, the reaction may not be as solicitous, understanding or apologetic as the salon owner’s. Does it mean I would ever stop taking every opportunity to advocate? No. Thank you Mrs. and Mr. Dude.

  9. I’m glad she saw the error of her ways, however, my local salon actually advertises that as a service for those of us that break out in hives after a “regular” haircut.

    We’ve actually had to educate some celiacs that her sign is not a joke! 🙂

  10. Thanks for advocating. That sign would have upset me but even more so been confusing to my kids with Celiac. They hear and see everything that says gluten free because it is so much a part of our lives. We definitely need to advocate so people learn this is our way of life and it’s our medicine. The less they joke, the more they take it seriously the safer we will be

  11. It was a valid question “What does that mean?” because there are salons (not many) who go out of their way to use gluten free products… which would have been awesome.

  12. It was obviously a joke to me – the “free range clients” being the clue. All the same, in bad taste and so ignorant. Kudos to the salon manager for apologizing.

  13. Thanks for standing up for Celiacs. And an extra thanks for doing it calmly with style. Giving the salon a chance to reexamine their marketing before being upset is perfect. Plus if the salon owner happens to look through this blog…thanks for listening and responding quickly to Dude’s concerns. It is appreciated by all.

  14. My local hairdresser does a nice job cutting my hair, but the salon uses product with, if I remember correctly, wheat germ oil. They love the stuff and are always trying to sell it to me, but as soon as I’m done I go home and wash it out of my hair. Yep, I know it’s just oil and maybe does not contain the protein gluten, but I worry anyway.

    1. That stuff makes me itch until I bleed. My hairdresser had to learn to live without it (it can be done lol).

      In all seriousness its good to wash it out. There’s too much potential for accidentally ingesting it (hair blows into my mouth all the time, others chew on their hair as a nervous habit, etc.)

  15. I was diagnosed celiac 5 years ago. Since I experienced quite a few of the symptoms, I take my gluten free diet pretty seriously, I never cheat (on purpose). And since there is a part of the gluten-free community that eats this way as a fad or a way to lose weight, we’re going to continue to get slack. I get that. I don’t like it, but I accept it. I do try to educate anyone who will listen or shows interest in what celiac actually means, that it’s really no picnic.

    So I respect the Gluten Dude for all that he does, he’s an important voice in our community. And I love the articles. I love that he made a calm phone call about this sign and got positive results. That said though, I think this sign is hilarious. But it fits with my personal style. I make fun of my celiac all the time. People ask me what will happen if I eat gluten. If I’m comfortable with them, I tell them it will make me very sick for a few weeks, kill me slowly over time (w/increased risks of cancers & such), and oh yeah, I’ll pretty much just s*** all over the place.

    Celiac is serious, but I chose to educate with laughter. No one forgets that I’m “glutsy”, and no one passes judgment when I choose not to eat something because I’m not sure if it’s gluten free or not. So I don’t know, maybe I’m part of the problem. I don’t see it that way, but if you disagree, I would be open to hearing a different side.

    1. Thanks for the kind words Kathie. I laugh about my celiac too at times. That’s not what this is about though. It’s about kids getting bullied for eating gluten free, it’s about restaurants not taking us seriously, it’s about the pathetic diagnosis rate of our disease. All because of the attitude that it’s one big joke. That is the perception I am trying to change. It’s not about ME. It’s about the community.

      1. It’s also helping the business – they’re making fun of people. They might think they’re making a lighthearted joke about people who follow food trends, but what they’re actually doing is alienating people who (gasp) care about what they eat. It’s like in middle school when all the cool kids make fun of kids who care too much about something. It’s still cool to make fun of people for caring too much about things. Fighting against that is always a good thing because it’s exhausting to deal with those attitudes.

        There are plenty of cute, funny things to put on a business sign that don’t involve cutting someone down. (See, cutting? Hair salon. Go with a pun, hair salon. People love those.)

  16. Thank you for doing this on all of our behalf.
    You know that commercial for the woman who eats a brownie with peanut butter at a party?
    I wish there was something like that which could show what we all go through when we are glutened.
    It’s a powerful ad.

  17. Thanks GD! Education is a slow process. Most businesses understand that happy customers tell a few friends about the experience, but mad customers tell quite a few more. They also know that many mad customers avoid the confrontation at the store with management. So thank you for telling all of us and thank you for making that store aware of how that joke may have offended many more customers they don’t know about.

  18. Thank you so much. I get so so tired of the dumb jokes. I try to respond succinctly, calmly, and with grace. HA! Thank you.

  19. Excellent work. Thank you yet again for your advocacy. I always learn a lot from the comments as well. I too want to use that line gf is what keeps me alive. I will send this to my niece who has a hair salon and start educating her. Even if I know they have nothing I make a big point of asking every salesclerk in the beauty products area of a drugstore “Do you have GF lipstick (in particular, make up, beauty products in general)? And yes I know I can buy a $25 gf lipstick online (and that’s before the currency converting and no doubt shipping to Canada). But as a frugal artist that is out of my price range and I would prefer to see the real colour. And it’s not a big deal but sometimes I feel like I can’t be me anymore and I like wearing lipstick. As a young radical feminist in the 1970s there were a lot of jokes about how “women’s libber’s” had no sense of humour. That’s because your rights not being respected, etc., are just not funny and neither is this crap (pun intended). I like to throw in that some people projectile vomit upon ingesting gluten. Shades of the Exorcist -that usually shocks the gluten eaters and worries them.

  20. Thank you for creating awareness! I seek out salons that have gluten free products to get my hair cut otherwise I break out horribly. I would be very upset if I came across this “joke”. It’s hard enough finding a gf salon and to be taken seriously!

  21. It’s sad that it was a joke. But also one step further could’ve been taken to educate her about celiac & where gluten hides which can be in her products. I would probably try a new salon especially if they had all GF products. My skin looks like a lobster for a couple of hours & itches when they use a gluten product on me by accident.

  22. I’m so glad you asked WHY they posted the sign.

    My hairdresser is a good friend, and intentionally found a gluten free product line to carry because I had migraines after every haircut. He doesn’t advertise it, but he knew that the wheat in his old products was really problematic for me.

    So I had *hoped* the salon just was being awesome, but since you were being awesome, they now know better.

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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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