My Birthday Wish for the Celiac Community

Today is my 36th birthday. It feels weird to say this number out loud because I most certainly don't feel 36 nor do I think I look 36 (most days). I was diagnosed with Celiac Disease in 1981 and for the past thirty-three birthdays, I celebrated in a gluten-free way. I was a very sick toddler and my parents didn't give up on trying to find out why their child was so ill. It was a young resident (younger than my parents at the time) who finally diagnosed me with Celiac Disease. I do not remember life with gluten. Celiac has been almost my entire life. Today, I am healthier than I have been in years. 

As I celebrate my birthday today, I have a big wish for the Celiac Community. I wish we all could get along. As someone who has been gluten-free blogging for more than seven years and leading a Celiac support group for more than eight years, I have seen a dramatic change in this Celiac Community over the past two years or so. We used to be such a supportive and caring community, helping each other and encouraging others who were newly diagnosed. Key words: used to be. 

Unfortunately, the past year has been rough in this community. REALLY ROUGH. So rough that I have actually considered taking a break to avoid all of the drama that has increased over the past 6-12 months. I've been sent hate mail, plagiarized three times, harassed via Twitter by an (in)famous "advocate", had others take credit for my work and research, bashed on my own Facebook page by a local business owner, and even falsely accused of my motives in my volunteering as the leader of the NYC Celiac Meetup group. 

There is so much competition, feelings of (gluten-free) entitlement, plagiarism, bashing, blaming, complaining, whining, harassing, cattiness, trolling, and negativity within the Celiac Community and I don't understand it anymore. There is no longer a feeling of community and "safe space" that we once had with our fellow Celiacs but feelings of extreme defensiveness and offensive responses. It makes me very sad. 

I write this blog and Gluten-Free Globetrotter because I genuinely care about the community. I have three decades of experience of living with Celiac Disease so I believe I have a lot of knowledge and personal experience to share with others. I have a sister and cousin both living with Celiac so this goes beyond me and is truly a family affair. I run the NYC Celiac Meetup group because I lacked this type of gluten-free community when I was growing up. Most people do not realize that I have a full-time job completely unrelated to the gluten-free community because I make ZERO money on my blogging and support group leadership. This blog, my social media presence, and my Meetup group are all done out of my personal passion to advocate for those of us living with Celiac Disease. If I can help just one person navigate the new gluten-free landscape, my mission is complete.

I admit that I am not perfect and the negativity and cattiness get the best of me at times. I am going to work hard to stop my own negativity and counter it with positivity and support of the Celiac Community. I want to get back the kind, helpful, supportive celiac world that I was part of from the beginning. I cannot do this alone and hope you join me on my birthday wish to help fix this Celiac community. If we cannot support one another, how can we expect others to support us? 

Thank you.

Gluten-Free Videos

The Twitterverse has been buzzing with some major backlash against a company called Cappello's. In trying to jump on two trendy bandwagons at once, they produced a video called "Sh*t Gluten Free People Say". For those of you that don't know, this trend started with this video and led to a huge flood of funny and not-so-funny videos. Cappello's video falls into that latter category. Just. Not. Funny.

For those of you that know me, I am on the fence by the recent attention gluten-free is getting. It is great that I can now walk into a supermarket and find some kind of bread/pasta/cracker that I can eat; this wasn't the case when I was first diagnosed in 1981! On the other hand, when celebrities like Elisabeth H. start spewing WRONG information in their plight for the Celiac I think we lose some major credibility. People see gluten-free eating as a fleeting trend and something to poke fun at with unfunny videos. We aren't a trend, we are living with a disease.

This is for real, people. I can't eat gluten, EVER. I don't ask if "this bread is gluten-free" like in the video because I know it isn't. This Cappello's video is just stupid and uninformed on so many levels. GlutenDude, another GF blogger, did a great write up about the gluten-free boom in the media but I like the comments even more. It shows that we aren't a trend and we speak up for our cause.

What I do like the most in this PR mistake by Cappello's is how the Celiac community once again banded together to make their voices heard. Comments on FB, Twitter, and blogs are flooding in. If you know a Celiac, you know we are NOT a quiet bunch. Cappello's stepped in a big pile of Celiac sh*t if you ask me.  They want us to like them on FB and follow them on Twitter. Now, they want to send me some of their gluten-free pasta. Not sure if that is a wise choice Cappello's, I already have a bad taste in my mouth and it comes directly from you. Do you really want me to publicly review your product?

On a much lighter note, check out this fun and much more well-informed video by Royal Empire Productions. ILL Knowtice, the guy in the black, has Celiac. He gets it and makes this catchy video to prove it.



UPDATE:

Check out the email I got from ILL Knowtice in the above video. Cool guy!

Hello Erin,  

Thank you again! 

Nothing makes us happier than knowing people are enjoying and sharing our video, it is awesome :)  I watched that other video and I understand completely what you mean, it is quite offensive and not very creative or constructive.  It's almost as if the uninformed believe being Celiac is some sort of lifestyle decision and not a disease that people have to learn to live with and deal with on a daily basis.  I'm glad people are taking our song the correct way, we definately wanted to make people laugh and smile but for positive reasons as well as build awareness for Celiacs in general.  I've been dealing with it for less than a year and it has been pretty tough at times, I couldn't imagine my entire life, much love and respect to you! I have noticed our views have increased drastically the past few days so thank you for sharing with your friends and peers, it is very appreciated.  We just set up a twitter account last night due to the overwhelming response we have been getting.  It started out as a fun little video to spread awareness and it is growing into something we couldn't even have imagined. 

Hope all is well with you and please let us know if there is anything we can do to help out on any level. Have a great day 

ILL Knowtice

Royal Empire