Birthday Reflections: Being an Authentic Celiac

AUTHENTIC (adjective) 

au·then·tic 

\ə-ˈthen-tik, ȯ-\

• real or genuine 
• not copied or false
• true and accurate

source

Today is my birthday and it is time for a little reflection on my celiac life, my gluten-free blogs, and my position as an advocate within the community. As I sit here, the word "AUTHENTIC" keeps popping back into my brain.

I have always tried to be 100% authentic. I blog how I think and how I talk which is usually stream of consciousness, honest, raw, and real. I greet readers and Facebook friends with a wide genuine smile and usually a hug, which is how I want to be greeted by people I like and admire. I leave honest comments on other blogs that aren't always in favor of what the author is writing, but it is my honest opinion that I want to share.

Recently, I had some interesting questions thrown my way by others in the gluten-free industry. One person asked me why I bother with two separate blogs. (Different topics, different missions.) Why I quit my job to do freelance work? (If not now, when?) and why do I do what I do or don't do XYZ with my websites.... in a less than friendly tone. (Um, this is me, take it or leave it!)

But these questions made me think, are there that many bloggers not being truthful to themselves and their audiences? Are they selling out their personal style and opinions just to make money? Why would I not do what I love, follow my passion, share my experiences while remaining authentic and true to myself? I honestly cannot imagine being any other way.

I may not be the gluten-free blogger with the biggest following. I never expect everyone to love me, my blog, and my opinions. But I can tell you from the bottom of my heart, I am real. I am genuine. I am authentic. I have been living with celiac disease for almost 34 years. I am not trying to be trendy by eating gluten-free for three decades and writing this blog for the past eight years. I am trying to share my life long experiences in hopes that I can help just one person in this world navigate their new celiac diagnosis. I will continue to be real as I start this next year of my life. This is my birthday promise to you.

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.