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Wednesday, April 9, 2014
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.

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Anonymous Anonymous said...

Happy Birthday, Erin!! I hope you have a great day and a great GF meal somewhere in there.
I enjoy your blog posts and appreciate your efforts to be positive. It does make the GF life feel more do-able and is appreciated by many of us!

Hi Erin,

I hope you get your wish! Enjoy the beautiful things and people (esp. inner beauty) in your life, keep doing what you find most purposeful and fulfilling, and most of all, don't let anyone disturb your sense of inner peace. You have done a tremendous amount of work to bring people together.
Many warm wishes,

Blogger Lyn said...

First of all--Happy Birthday! Secondly, I am so sorry that you have had to endure so much negativity, dishonesty and rudeness. It seems that our society as a whole is getting worse and worse in these areas. Please know there are many out here who deeply appreciate the work you are doing on our behalf. So a great big thank you to you!!!

Anonymous Anonymous said...

Happy Birthday! I hope things turn around and I enjoy reading your blog from Delaware (I grew up in NY though!) Stay positive and have a healthy great year!

Anonymous Anonymous said...

First of all, HAPPY BIRTHDAY! I hope you got to enjoy a big piece of (gluten-free) cake! And secondly, I want to say thank you on behalf of everyone in the Celiac community whom you have had a positive impact on. It's disheartening to hear that you have had such a difficult time recently. But you should know that your efforts do not go unappreciated. I love reading your blog and am so thankful for the hard work you put into coordinating events in NYC for the Celiac community!

Blogger Cheryl Harris said...

Beautiful post, Erin!
You're such a warm and welcoming presence in the g-free community and it's so easy to get discouraged by the negativity.
I definitely recommend your travel posts to clients and I know they're appreciated.
And happy birthday! I'm about to turn 36, too, and it feels strange.

Blogger Taylor said...

Hope you had a great birthday! I completely agree with everything you said. Over the last 2 years since I started blogging I've almost felt like it's been a competition with some other bloggers...I don't understand it and I don't get it at all. I sit here as a 16 year old and wonder how people 2x or even 3x my age can be so negative or hostile to others when we all deal with the same difficulty...being gluten-free. We should be a celiac community! Not a divided group fighting for the most views or most recognition. My goal for Celiac Awareness month is going to be to find a way to make this a community again. Just a way to help others with no one competing or wanting anything in return. Anyways, thank you for this post because this needs to be recognized more! I'll definitely start promoting this message more throughout the future:)

Blogger Unknown said...

Ditto Taylor. We're here to support each other -- like one of the presenters at the Orlando Conference said, One individual 's success is ALL of ours. And we only grow by boosting each other! Grateful for your presence and transparency! And happiest birthday!


Blogger Unknown said...

Hi Erin, Happy belated birthday! We are almost the same age! Thank you for your positivity and for holding your head high. I was just moderating comments for my page and I was so disheartened by how many nasty and angry people there are out there . You are not alone in your feelings! I am not sure why there is so much anger, competition, etc. but you are truly making a difference and you have been an inspiration to me as an advocate.

Anonymous Karen Broussard said...

Erin, I couldn't agree with you more. Well put, and let's hope there are more people like us out there to move beyond the negativity and work toward common goals of educating, advocating, and making the world a better place for the entire gluten free community (both Celiac and gluten sensitive individuals).

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