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?