What does Celiac Awareness Mean to Me?

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Celiac Awareness to me is a chance for the community to come together with one streamlined theme and educate that message around the globe. This is a time to support each other, have open conversation and invite debate. I feel spoiled living inside my celiac bubble of wonderful people I talk to everyday. I forget sometimes that there are over 300 million people in this country who have no reason to care about gluten or celiac disease.

Advocates fill our community researching, writing and educating tirelessly everyday for little to no pay. Why do we do it? We do it because it needs to be done and we have chosen to be a part of the solution instead of the problem.

We all want to eat safely, without fear and to stay healthy. Only about 15-20% have to date been confirmed through diagnosis and 60% of those are women.  Men need to get tested earlier and not ignore the possible symptoms; especially if other family members have been diagnosed.

How can we accomplish this as a COMMUNITY?  By putting our feelings aside for the greater good and passing one message, one tag line that everyone (or a whole heck of a lot of people) share.  Like, Ellen’s picture from the Oscar’s crashed twitter because it was retweeted so often in such a short period of time. It was also mentioned on the news, talk shows, the picture was seen everywhere. Making history with community support. That sounds like a pretty great idea to me.

Change starts one person at a time creating a domino effect of education passed through the masses. This movement is happening now, how can we celebrate Celiac Awareness for ourselves and reach as many people as possible? What would your #Hashtag be?

Tags: advocate, blogger, celiac awareness, Gluten Free Recipes, GlutenFreeGal, hashtag, twitter

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Comments

  1. Reply

    My passion now is #awareness for doctors. I live in a college with three MAJOR hospitals and a major university (MSU) that is moving part of their medical program here. And we still have doctors (gastroenterologists) that tell their patients to look up their celiac diagnosis on the internet because “they know nothing about it”and hospitals that still send patients food with gluten in it. That’s it. “I’m mad as hell and I’m not going to take it anymore.” There is a FARE walk taking place on September 13th (which also happens to be my birthday), and I’m going to ask people to donate $13 a piece towards raising funds to educate doctors. To be honest, I’ not sure how I’m going to accomplish this, but I’m tired of my fellow celiacs suffering.

  2. The main/biggest issue right now is people not knowing what celiac disease is, or they are confused about it, call it an allergy, etc. To spread awareness about celiac disease people should first know what it is and what it is not so maybe….. #whatsceliac or #whatisceliac The core problem right now is “what is celiac disease?” I am sure we all get the same response of the time, “whats that?’

  3. The main/biggest issue right now is people not knowing what celiac disease is, or they are confused about it, call it an allergy, etc. To spread awareness about celiac disease people should first know what it is and what it is not so maybe….. #whatsceliac or #whatisceliac The core problem right now is “what is celiac disease?” I am sure we all get the same response of the time, “whats that?’

  4. Reply

    I really like this post! Bringing awareness is key…and it also makes our gluten-free lifestyle a little easier.

  5. Reply

    I really like this post! Bringing awareness is key…and it also makes our gluten-free lifestyle a little easier.

    • Jackie Simmons
    • May 20, 2014
    Reply

    What a heartfelt post. I think sometimes our community forgets it is a community as everyone pulls in different directions. This is a great idea to bring one voice.

    1. Reply

      agreed!

  6. What a great and thoughtful post! It is pretty amazing when I think back to last year before I was diagnosed when I had absolutely no idea what “gluten” or “celiac” meant. I’m not sure about the perfect hashtag, but maybe something like #glutenfreeisourmed, #glutenfreeheals, #spreadglutenfree, #knowgluten (I like this one because I’m partial to puns – “know” about gluten and “no” gluten). Thanks for tagging me on twitter so I could read! Let me know of anything more that I can do!

    1. Casey, I appreciate the insight and great # choices. If you could keep passing on the idea. Gluten Freeda has started #SupportCeliacAwareness

    2. Reply

      Love and vote for #knowgluten!

  7. What a great and thoughtful post! It is pretty amazing when I think back to last year before I was diagnosed when I had absolutely no idea what “gluten” or “celiac” meant. I’m not sure about the perfect hashtag, but maybe something like #glutenfreeisourmed, #glutenfreeheals, #spreadglutenfree, #knowgluten (I like this one because I’m partial to puns – “know” about gluten and “no” gluten). Thanks for tagging me on twitter so I could read! Let me know of anything more that I can do!

    1. Casey, I appreciate the insight and great # choices. If you could keep passing on the idea. Gluten Freeda has started #SupportCeliacAwareness

    2. Reply

      Love and vote for #knowgluten!

    • Melinda
    • May 19, 2014
    Reply

    I think is a great idea, the need to come together as a community with one cohesive thought. Unfortunately I don’t have any ideas right now but will give it some thought. Great post!

    • Melinda
    • May 19, 2014
    Reply

    I think is a great idea, the need to come together as a community with one cohesive thought. Unfortunately I don’t have any ideas right now but will give it some thought. Great post!

  8. Reply

    I love this post, K! And I’m rolling around in my head the idea of one tag… What I like most here is definitely the focus on community though, and how a positive approach to spreading the message while supporting each other really does make an impact.

    I like Taylor’s #PositiveCeliac tag, but on deeper thought, it’s not really the one to reach a non-celiac audience. “Gluten-free not fad” has been a good tagline of sorts. But it would be brilliant to incorporate the fact that gluten-free is a PRESCRIPTION more than a diet. That, I believe, might really reach a broader community with the facts of celiac.

    • Ally
    • May 19, 2014
    Reply

    Love your blog. Thank you for saying thank you for a normally thankless job. It’s just nice to hear it once in awhile, that what we do is helping someone out there.

    • Ally
    • May 19, 2014
    Reply

    Love your blog. Thank you for saying thank you for a normally thankless job. It’s just nice to hear it once in awhile, that what we do is helping someone out there.

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I was diagnosed w/ Celiac disease in 2010, after 7 agonizing years of misdiagnosis. Once I started living gluten free I felt 100% better than I did, but something was still amiss. Giving up gluten was only the beginning of my long journey to gut health and healing.

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