What Exactly is Celiac Awareness?

what is celiac awareness

For those of you who may not be aware, May is officially Celiac Awareness Month.

Naturally, the U.S. Senate declared a National Celiac Day in September.

Yeah…I know. Don’t ask.

So I’ve been wracking my brain trying to come up with a unique way to celebrate our month. Last year, I posted 31 blogs in 31 days. By May 31st, I joined a long list of people who were officially sick of me. So I won’t be repeating that venture (although to be honest, I did enjoy the challenge.)

Then I got to thinking…what exactly does it mean to “raise celiac awareness”?

Is it simply writing a blog about our disease?

Is it sharing your gluten-free recipes so celiacs can expand their limited palate a bit?

Is it selling t-shirts and other celiac-related items to help spread the word?

Is it opening your own gluten-free bakery where celiacs can feel completely safe?

Is it developing your own brand of gluten-free flour or gluten-free labels to help those in the community?

Is it organizing monthly meetups for your fellow celiacs so we can all learn from and lean on each other?

Is it training people who are struggling how to live completely gluten free?

The answer to all of the above questions is a resounding yes.

And there are a group of amazing celiacs out there who are doing exactly these things…every day.

You know who you are. Take a bow.

And for those of you who think you are raising celiac awareness by peddling or promoting crappy gluten free products simply to line your pockets, that ain’t awareness. You also know who you are. Hang your head in shame.

I’d like to think the little community that we have created here at GlutenDude.com has done a credible job at raising celiac awareness. After all, that is what we’re all about.

My goal, first and foremost, is to help my fellow celiacs. And I do that through brutal honesty.

I hate having this disease. And I know a lot of you hate it too. And I don’t raise awareness by blowing sunshine up your butts and telling you that life with celiac disease is a beautiful thing.

But I also won’t let you wallow in your sorrow either. You’ve got the disease. Buck up and move forward.

I raise celiac awareness by throwing jabs at the media who constantly seem to get our disease totally wrong; by calling out companies and personalities who are strictly in it for the profit; by tackling the tough issues like why Channing Tatum went gluten free (yes…that’s sarcasm).

My point is, while it’s nice to have a month to put a special focus on celiac disease, true awareness is a 12 month gig.

So while I do have some things planned for this month that go above and beyond this website, I will continue to do what I’ve always done; this month, next month and as long as I’m able and willing.

We have made great strides in raising celiac awareness but we have a long way to go to convince the medical community and the public that our disease is one that needs to be taken as seriously as other autoimmune diseases.

I hope you continue with me on our journey.

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35 thoughts on “What Exactly is Celiac Awareness?”

  1. Appreciate all you’ve done in the GF community, GlutenDude! I come to your site almost everyday and admire your point of view and advocacy on Celiac Disease. I agree, May shouldn’t just be the only month to spread awareness. It should be an every month and every day thing. You’re doing an awesome job at spreading it and I know have helped so many people. I think there truly is no better feeling than that. Wishing you a great month!

  2. GD-

    i love you. Jersey loves you. i will just go ahead and say that all your followers heart you. i am going to do my best to do something to raise awareness this month to promote celiac awareness. must go brainstorm now.

    this is for you dude…

    “Andy Dufresne, who crawled through a river of shit and came out clean on the other side. Andy Dufresne, headed for the Pacific. Those of us who knew him best talk about him often. I swear the stuff he pulled. Sometimes it makes me sad, though, Andy being gone. I have to remind myself that some birds aren’t meant to be caged. Their feathers are just too bright and when they fly away, the part of you that knows it was a sin to lock them up does rejoice, but still, the place you live in is that much more drab and empty that they’re gone. I guess I just miss my friend.”

    Shawshank Redemption

    XO
    Jersey Girl

  3. I want to thank you for this website. I have gluten intolerance, I was tested for celiac but it came back negative and after a variety of tests it was concluded I have a severe intolerance. The one reason I love reading your posts is that you are very honest about gluten free diets and you are one of the few blogs that doesn’t make me feel bad for NOT being celiac. A lot of the time I end up feeling like my intolerance isn’t looked at as good enough because I dont actually have a disease and to many people it seems that I have just jumped on some fad diet, when in fact I am taking control of my health and finally being able to live a life where I am not in pain, itchy and in a clouded fog. I want to thank you for being so honest and supporting a gluten free community that uses their knowledge and power for the good of the community. You are fighting the good fight sir and I appreciate you more than my words can really say.

  4. Oh hell yeah Gluten Dude! You have really helped me come through my funk. I hate having this disease, but finding out was the relief I needed to get my health back.

  5. Hey Gluten Dude,

    You have a great way of making your blog a conversation that is real. The most important thing you said today was “…convince the medical community and the public that our disease is one that needs to be taken as seriously as other autoimmune diseases.” I don’t know of any other autoimmune disease that the medical community doesn’t take seriously. Why Celiac Disease? Why is the continuing education system for physicians so lacking in good communication? Why aren’t physicians catching up on this info? So, we start with one leg missing in our three legged stool.

    What other autoimmune disease needs so many bloggers and support groups? Another leg that is wobbly because insurance companies don’t take us seriously enough to pay for dietitians and many dietitians are so ignorant about this diet that they just print off material from the internet. This is our “drug” and you’re just going to print something off? Talk about not being taken seriously! Thank goodness for bloggers and support groups!

    And then we come to the third leg….the media and the restaurants. Would the media tell diabetics what a great weight loss diet they have? Why would they do so little research for an article or report that their information compromises a persons well-being or even puts someone’s life at stake? Would restaurants tell a diabetic, we have a diabetic menu and a little sugar is OK because we can’t really control everything in the kitchen? Get serious guys! Buck up and do the right thing!

    Thankfully we do have people working hard for celiacs and Celiac Disease to be taken more seriously. Kudos and thanks to all of you doing your part. Maybe some day we’ll all be able to go to a restaurant, sit down to a delicious and safe meal with friends or co-workers or family, and no one will look at us as an oddity or a pain in the ass! We won’t have to call ahead or eat ahead or miss out. Seriously!

    1. “I donโ€™t know of any other autoimmune disease that the medical community doesnโ€™t take seriously. Why Celiac Disease?”

      Blame the media. Blame the b-list celebs. Blame the marketing companies. All of them are responsible for the trend that gluten free has become.

      Loved your entire comment…thank you.

      1. “All of them are responsible for the trend that gluten free has become” – so well said. Now that it’s ‘trendy’ the gravity of it seems to be vanishing. And the spread of misinformation keeps on growing. Maybe this year our campaign should focus on making sure the serious nature of this – and the needs of those for whom it is a medical condition, not the latest diet craze – gets heard.

  6. Thank you for all you do, Gluten Dude. As a side note, National Celiac Awareness Day is September 13th because it is the birthday of Dr. Samuel Gee. “Why September 13? Well, according to the National Foundation for Celiac Awareness (NFCA), today is the birthday of Dr. Samuel Gee, the pediatrician who published the first detailed description of celiac disease in medical literature … in 1888. Dr. Gee also was the first to recognize that celiac disease must be related to diet, although it took many more decades before gluten was fingered as the main culprit.” (from About.com) Sad to think that 125 years later there are doctors out there that still have no idea what it is!

    1. I also kind of like that the day doesn’t fall within the month, because it helps spread the celiac love across the year. It’s about 12-month, lifelong awareness, not just a month, as GD says!

  7. Via Jeanine’s The Baking Beauties website (a must-read, must-bake for Celiac’s, she is my glutenfree goddess!) I discovered your website and I’m seriously considering to become a habitue (and only this one time I’ll use so much space in a comment). I really like the down-to-earth approach you have. We have a daughter whose life hung by a thread when she was 1 years old due to a misdiagnosis: the doctors assumed she had a rare, lethal metabolic disease, but it turned out to be ‘just’ Celiac’s. I believe we were the only parents in the world to rejoice this diagnosis.
    At home we all went gf, just because we believe it is easier. But the social aspect is the harshest part of this diet. She struggles with ‘being different’ and always having to anticipate for a possible eating-moment. It really is quite a task for a 9 year old to cultivate thick skin. And I think you are covering this daily dilemma quite aptly. Thank you for that!
    We are trying to raise awareness by asking everytime, in every single restaurant, pub, coffeebar and so on, whether we have our daughter with us or not, for their glutenfree menu. Obviously (at least over here in The Netherlands) the can seldomly present one, which gives us the opportunity to explain a bit about CD. Thanks GF Dude for your effort! I will read your 31 entries in the next few days in honour of the May-Month (Dutch National CD-Day is 22nd of April!)

  8. We still have a long road towards greater understanding of this disease and the full gluten intolerance spectrum, but we’ll get there!
    As long as I have breath, I’ll try to continue to do my part.

    As I have told you many times, you are doing good work, kiddo! ๐Ÿ˜‰
    Keep doing what you do. Thanks for the laughter and the friendship.

    I have grown very fond of the “GD regulars” and I also enjoy many of the GF bloggers. You guys are all so generous to share so much of yourselves with the GF community. Thank you! ๐Ÿ™‚

    1. At some point in the future we need a Gluten Dude convention!! I would love to meet all you amazing people.

  9. Looking forward to a scathing critique if Dr. Agatston starts trying to co-opt the month for “gluten awareness.” ๐Ÿ™‚

    Thanks for being a champion of celiac awareness! This blog has gotten me through some bleak mornings and is an inspiration to me.

  10. You do an amazing job at what you do. So often I find myself passing along links to your posts and the information you share. I’m a celiac with lactose/casein, soy, …. the list goes on and on. I’ve admired your voice and the honest views you give. There is so much junk info out there as GF has become a fad, I hate how it is distorting something that is a real medical condition (for both intolerance and celiac – both are real!) and making it harder for us to be safe. As you’ve so often said, when something is “GF” – what does it take to make sure that GF means NOTHING G in there!!

    Anyway, I just wanted to thank you and cheer us all on as we figure out how to best advocate for ourselves and the health we deserve.

  11. Last week, I refused to complete forms to have my child diagnosed with ADHD just to get a 504, when the doctor knows he had CD but only wants to address a medical condition with the school that the school will take seriously. So, imagine we had taken that route. They would complete the Vanderbuild survey based on when he is clean or when he has been exposed to gluten? That itself could destroy the ADHD dx.

    Otherwise, say we went down this unethical path and got the 504. Would they enforce hand washing, station washing, not giving him snacks and foods we have checked as safe? NO! They would be exposing him via PlayDoh, glue, shared tables with kids eating PB&Js, and then wanting me to medicate my child who is having a massive reaction to gluten exposure.

    So, we are back looking for a doctor that will help us educate and protect our kindergardener….. And we have just how many years of school to go again?

  12. I just came to this article from your tweet this morning, thinking it was a new one posted today. I read the whole thing and was halfway through these comments (how could there already be so *many* of them?, I thought) before I realised it was two years old.

    Which is kind of a depressing thought because does this mean we haven’t gotten anywhere in the last two years? Well, I don’t really think that’s true but I’m not going to bother getting into a quantification of it, this early in the (west coast) morning.

    On a positive note, I see the NY Mets are holding a Celiac Awareness Night on May 16th:

    “One in 100 Americans have Celiac, but 95% don’t know they have the disease. Join the Mets on May 16 as we raise awareness while benefitting the Celiac Disease Center at Columbia University. R.O.C.K. Long Island, who offer free support to parents, families and friends of kids on the gluten-free diet for any reason, will be on hand to provide important information on this often undetected illness.”

    http://newyork.mets.mlb.com/nym/ticketing/group_offers.jsp?group=celiac

  13. Celiac sprue isn’t my only medical issue but it’s one I can better deal with because of you. I appreciate your efforts no matter the size or effort; they all matter. Thank you for all you do.

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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 didnโ€™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, Iโ€™ve done my job.

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