Celiac Disease Awareness Month Recap 2013: Your Stories

Celiac Disease Awareness Month

You’ve seen what some of the high-profile bloggers have done this month to spread awareness. I love our community and when we all step up to the plate to spread awareness. The community made big moves with Disney and we’ve pushed until our (osteoporosis-riddled) backs break to get recognized as more than just a fad this month. But, I also wanted to share stories that you may not GET to hear – I want to hear stories from you. I asked you to submit what you’ve done for Celiac Disease Awareness Month – big or small, and I received some amazing responses.

Here are some amazing snippits.

Some stories reminded us that there were already people looking out for us…

“I just returned from dropping my 9-year-old gf son at his first birthday party since turning gluten free. He came prepared with his gf bun and gf cake so that he can partake in the party. When I asked the dad where I should leave his food he told me that there was no need to do that. His son told him that my son only ate gf and they got him buns, candy, treats etc. so that he needn’t worry. I am shedding tears of joy that their son was aware enough and that the parents cared enough to go out of their way to make my son comfortable. It was priceless to see my son’s face when I told him what his friend and his parents had done for him.” – Yafa

Some people posted about celiac disease awareness on their own websites…

Jenny from Creative Cooking GF wrote about it – you can read it here. “I had to incorporate it into my school schedule so for my term projects for Anatomy & Physiology and Technical Writing, I presented about…you guessed it…Celiac Disease! Both projects included a written paper and a PowerPoint presentation. In one PowerPoint I included an amazing infographic on celiac disease symptoms that Gluten Dude posted – everyone in the class thought it was great (well done Gluten Dude!)…I also handed out samples of Udi’s Gluten Free Granola and Red Apple Lipstick to my classmates.”

“Sometimes I’m not very consistent with making sure I blog all the time but I blogged a lot this month with stories, recipes, and personal experiences (some of which I’ve never shared before) through my gf story. It doesn’t seem like much, because most of them have no comments but my Facebook friends read it from my wall when I share the link. I have a friend who hasn’t felt well in a long time and my blog inspired her to get tested! She hasn’t gotten results yet but regardless, something I said persuaded someone to take action and that is a beautiful thing!” – Kari (you can read her blog post that she’s mentioning here).

Some even started a blog!

“This past April I met Chrissy from glam without gluten and she inspired me to start a blog …to spread more awareness to celiac disease! I wanna change the way people look at celiac disease.” Eli, Gluten Free with Eli

“I’ve had a Facebook page for over a year, but I finally created a blog to share my experiences with being diagnosed with celiac and living GF.” – Alexis, Gluten Free In Orlando – you can read her blog here

Some tried to make positive gluten-free changes for their local community…

“The UA Gluten Free Club…had a meeting with dining services where we finally got a free taste test of the salads, sandwiches, wraps, and fruit plates in the gluten free line. We were able to give dining services valuable feedback on the items we like and don’t like and how to improve them. We were also able to communicate with them the importance of cross contamination and the need for a completely dedicated prep area for ALL of our gluten free foods.” – Emily

“I am giving my “Gluten Schmuten – What’s all the Fuss About?” PowerPoint talk to my daughter’s daycare to educate the teachers, admin and cook about celiac disease, cross contamination, hidden gluten, etc. Many of them have babysat for me and have watched my 6 year-old through her diagnosis at age 2 and she was the first one at her daycare to go gluten free. Many of them are aware of certain aspects, but of course not all – or the actual health implications.” – Ami

“I lived my life. In living my life, I tried to educate a restaurant on why you cannot have a Gluten Free menu, you also need to watch out for cross-contamination. I think I hit my head on a brick wall several times during these conversations.” – Mel, @GeekilyGF

“Right now, I’m working with a new GF shop/takeout place that just opened in my area, trying to drum up lots of business and maybe set up some support group/social group style events.” – Alissa, Breaking Up With Captain Crunch

“Expo loving! Attended the GR GF Food Fair as my superhero alter-ego, was impressed by the number of restaurants in the area that had knowledge of cross contamination and provided amazingly tasty samples. Supporting the businesses that support and understand this disease is a step toward losing the stigma brought about by the idiots in the media.” – Mel, @GeekilyGF

“…I baked brownies for 40 kids that take part in the Safe School Ambassadors group at my 11 year old daughters school. I figured a super tasty gluten free treat would do more to convince them that people who eat gluten free are not victims eating gross things but lucky kids who get to eat yummy things, than if I lectured them all day long about it.” – Toni

While others had more convincing to do on their own homefront…

“I didnt do anything big for awareness but I hit a personal breaking point with reading forums and decided to post a long status on facebook to all my lovely friends about me and my celiac…I thought maybe it was time I put more of my personal struggle out there for them to see and comprehend.” – Lisa

“The one BIG thing I have done this month is 1. I wore green for celiac, on a day @Celiacprobs choose on Instagram 2. I have posted EVERYWHERE about Celiac awareness (Including my page) 3. I have had my profile pic set to celiac awareness and asthma awareness ALL month long, and I ‘advertised’ everywhere about this being Celiac awareness month (before this month came)!” – Cathryn

One just celebrated her first celiac awareness month!

“What did I do to spread awareness during Celiac Awareness Month? I got diagnosed with it! I’m certainly aware, now.” – Susie

The next few even require Google Translator (which should pop up when you visit on Chrome).

This blog is out of Beruit and you can read it here - where our friend Lina posted about Celiac Disease Awareness Month.

Another overseas blog comes from Annick and this blog (in Fench). “So, for Celiac Awareness Month, I started a french blog about celiac disease. Most of the infos are in english. When I got diagnosed, I learned mostly from english website. Then, one of my friend got adviced to try gfree because she has recurrent joint pain. She doesn’t read English. So I decided to help the French celiacs and start a blog to share what I learned in French. My blog talks about my story, but also about the first things to do after the diagnosis, it also adresses the family and friends as I talk about how to cook for a gfree friend in a safe way and all kinds of stuff like my favorite food and discoveries.”

Some (literally) wore their hearts on their sleeves this month…

“I started off Celiac Disease Awareness month on a selfish note… that’s allowed, right? I bought these killer emerald drop earrings to wear to a gala with a black and white dress (so that people would notice the earrings and ask me about them). They are a little reminder to me each time I wear them that they are the Celiac colour and that I have won my battle already because I HAVE A DIAGNOSIS, unlike so many people who are struggling with pain and discomfort and just can’t figure it out! The end of April marked my 1 year anniversary of being a Celiac, so the earrings were a present to myself too.” – Candice

“I have been spreading awareness at my jobs, all four (or five) of them, and on Instagram pretty much every day. And, of course I have been wearing green every day: green wristband, green headband, green Tshirt, etc.” – Angela @CeliacHashiGirl

Some held fundraisers to raise awareness!

Melissa and daughter Samantha held a lemonade stand that featured gluten-free goodies and raised almost $500! This feat got them featured in their local newspaper, spreading awareness to more than just a neighborhood! You can read more about it here.

“I met you in Pasadena and bought a shirt from you which I wore to Take Steps Santa Barbara- a walk to raise money to find a cure for digestive diseases. I run a support group for Celiacs here in Santa Barbara called Gluten Free Santa Barbara. We had 4 members walk to raise money & awareness about Celiac Disease.” – Courtney

Some focused on helping others along in a rough journey!

“I wanted to tell you about what I did to help someone know about Celiac disease, well There was a gluten free festival and I talked there, I talked about my symptoms and my experiences. People came up to me after and asked me questions and asked my opinion about what you should do when they go through certain things during the disease. And this one women hugged me because she felt amazing after speaking with me. She said she is now going to stick to being 100% GF.” – Karalyn

“Kristina…has been in denial about her illness until May. Somehow with a lot of hard work and prayer I in partnership with Jimmy have opened her eyes and she has begun to take control of her disease. She’s eating right, reading, and talking about it. Many people blog, rant , rave, share, and promote. You do, I do. It’s our lives. But my little story is closer to home. This was our first Celiac Awareness Month and I think I may have saved my own daughter. How cool is that?!” – Kimberly, Atherton Baking Company

“Also, in honor of Celiac Awareness Month, I have worked hard on a challenge called 30 places in 30 days, in which I made it a personal mission to find 30 hidden sources of gluten around the kitchen. (you can see it here)” – Kelly from GlutenFreeLabels.com

“My 11 year old nephew is undergoing many tests for his health and while Celiac has not been formally diagnosed, he has been put on a gluten-free diet. Most of my family and almost all my friends had no idea what Celiac was about, so when I found out May was awareness month, I decided to spread it as much as I could. Everyday I posted info on celiac, what it is, what it does to the body, I posted gluten-free recipes, stores that had many GF options, iPhone apps that help find GF items or places. Throughout my posts, I got many questions and comments from friends who thought it was just a trend-diet and that gave me more opportunity to explain and clarify something that was widely misperceived.” – Krystel

And some used the allure of amazing GF treats to spread the message!

“I’m sharing a fact and a recipe (including photo) on my private Facebook page daily. I wanted to share recipes too so people could get a better idea of what we can’t have anymore and have to substitute, what CAN still be had (naturally GF) , but that it can all be awesome and not crappy like GF food is portrayed” – Jennifer

“I also entered a rad recipe contest {on a whim} that was being held by The National Foundation for Celiac Awareness and much to my surprise, my entry won first place in the entree division. My Asparagus Risotto with Spring Pea Pesto will be featured in an upcoming e-book that they’ll be releasing for a free download in June.” – Sherrie, @WithFoodandLove

But everyone and their efforts – big or small – made a huge difference. Thank you ALL for an amazing job this May. Get planning for your efforts next year, but remember – you can live every month like Celiac Disease Awareness Month!

And now…

The Celiac and the Beast Celiac Disease Awareness Month Celebration Giveaway winners are…

drumroll

1. Aleksandra TheWeasel Varkolak
2. Susan Martin
3. Sejal Patel

We’ll need to connect within 7 days, and if not, I’ll draw another winner! :) THANK YOU ALL FOR YOUR ENTRIES, and more importantly – for spreading awareness!

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Comments: 8

  1. GFKimAZ May 31, 2013 at 10:34 pm Reply

    Great post! Thanks for all of the inspiration from CATB and all of these awesome advocates. Congrats to all of your winners :)

  2. Kari May 31, 2013 at 11:00 pm Reply

    I love that you shared some of the stories you received! It’s so nice to see the effects of our gf community working together and spreading awareness!! <3

  3. nantucketdaffodil June 1, 2013 at 5:39 am Reply

    Enjoy following on Instagram!

    Our 9 year old was diagnosed 2 years ago. She has been amazing, but as you know, it’s not easy! Oh how she misses pizza….but the Better Baking Co. has an amazing dough….now I need to make calzones!

    Her friends are so understanding. Like the story above, people are learning and trying to be helpful. (Except for the cross-contamination at 99 restaurant and a child too shy to speak up).

    May was a busy month with standardized testing in the classroom, so I thought I’d ask her teacher if she could make cupcakes and educate the class a bit more. Her school has been incredible!

  4. mary fran | frannycakes June 1, 2013 at 7:34 am Reply

    This was my favorite Celiac Awareness post. All the stories, all the ways regular people can inspire change.

    I love you lady and I am so proud of the work you do and consider myself lucky to have you as a friend.

  5. Annick June 1, 2013 at 8:04 am Reply

    Thank you so muck for the link to my blog! And that is one great post, I really enjoyed reading all those beautiful stories!!! Well done everybody!

  6. Kim Rice June 1, 2013 at 1:54 pm Reply

    Thanks for all you do for the celiac community, Erica. You’re the best!!

  7. Susan Martin June 2, 2013 at 10:19 pm Reply

    I sent you my info. through fb!!! Thanks! This makes my week in a way you cannot imagine! MUCH needed!

  8. Lilli June 10, 2013 at 10:25 am Reply

    Loved reading all the stories. I’ve been GF for 17 years, back then no one, including most doctors, knew anything about chronic illness and that evil little gluten protein, love all the awareness!

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