Jennifer Fugo, CNS

Who’s the Gluten-Free Leader?

Young Woman Leader

I’ve spent the past month contemplating where my journeys in gluten-free advocacy have take me (and us as a community) over the past year.

This time of reflection has helped me to see that we have made tremendous strides in getting the gluten-free lifestyle recognized in ways that have had a positive ripple effect.

It’s also made me rethink how we talk about and share the gluten-free lifestyle with those who are not yet educated on the matter or even those who don’t believe it’s necessary.  I’ve considered how helpful our actions are and how clear we’ve been able to communicate a message that makes the public understand that living gluten-free is a real lifestyle change that has the power to positively affect many people out there beyond just those diagnosed with celiac disease.

And I’ve contemplated where we should go in the coming year because our work is not nearly done in gaining public awareness and support.  I’ve thought long and hard over what actions and topics have been most fruitful in keeping the dialog going.  At the end of the day, where we choose to go from here is entirely up to us and whom we choose to follow.

I recognize that I have become an advocate for a lifestyle that is what I live, breathe and sleep.  I’ve been able to give a voice, and at times a face, to a community that’s not always taken seriously by even those who live under the same roof as many who are gluten-free.  This led me to consider what leadership really means in order to forge a community that is strong and feels heard.  That witnesses progress and is respected.

Gluten-Free Leadership & Advocacy: What Matters

According to the Merriam-Webster Dictionary, leadership means…

lead·er·ship

: a position as a leader of a group, organization, etc.

: the time when a person holds the position of leader

: the power or ability to lead other people

And the meaning of advocacy is…

ad·vo·ca·cy

: the act or process of supporting a cause or proposal

: the act or process of advocating something

As I look around at various articles and blogs written on major news sites, high-profile gluten-free advocates webpages and lone blogger sites, I rarely see leadership or advocacy that progresses the conversation.  There’s still so much confusion, bickering, back-biting, disagreeing, and in some respects, a total lack of education on what it really means to be gluten-free.

Sure, some “hot topics” or grossly unhealthy recipes advertised as healthy “because they are gluten-free” get you more web traffic, but they do little to advance our cause.

I would be lying to say that I’m not concerned with the public image of the gluten-free community.  We probably get more back-handed comments and snickers than we do praise for helping support those to make needed change and feel better.  Gluten-free needs a really good PR person or “fixer” (think an Olivia Pope for those Scandal fans out there) to re-direct the conversation away from the one emotion that I don’t think is being used to help us: anger.

Sure, using anger to galvanize an audience as they bond over shared frustrations and woes is certainly important (just as much as feeling and dealing with your anger about your diagnosis and lifestyle changes), but continually living in anger keeps the conversation stuck.  

Anger is a powerful force when wielded productively.  But when it’s not… when it’s used to nit-pick and bludgeon points to death that weren’t brought to the table in a positive way in the first place, the public stops listening.  They don’t see gluten-free folks as needing help.  Instead, they see us as whiny and annoying.  I’ve read too many times this past month how the gluten-free diet is one of the most INSERT WORD (ie. annoying, stupid, lame, overrated, dumb) fads of 2013.

So as I’ve said, we’ve a ways to go.

Gluten-Free Success of 2013

Before we fixate solely on what’s not gone well, there were some successes this past year.  To name a big one–

The FDA finally ruled on gluten-free labeling.  Was it perfect?  No.  Was it a step in the right direction?  Yes.

And positively channelled investigative energy got the mushroom industry to finally acknowledge that mushrooms could potentially be contaminated with gluten due to their growing process.  Because of this article I wrote earlier this year, it forced the hand of an entire segment of the agriculture world to test and label their products (which are, by the way, gluten-free).

And whether you love him or hate him, Doctor Oz did a 12-minute segment (with yours truly… telling part of my journey to diagnosis with Dr. Amy Myers) on the issue of gluten sensitivity.  If you don’t know, 12 minutes focused on this topic on a major nationally-aired TV show is huge in the world of TV.

Talking about this topic wasn’t a stunt by the show nor their producers… they wanted to shed light on a condition that still has a lot of grey areas and that doctors aren’t yet fully embracing.  This scenario leaves folks like us to continue to struggle with health problems until more research surfaces (or a pill is developed by a drug company) that will validate non-celiac gluten sensitivity.

So wherever you stand, this segment on Doctor Oz is a big deal and I’m grateful that I was blessed with the opportunity to be a part of it.

And lastly, a huge thank you to all those who’ve joined the Gluten Free School Facebook community!  We pass 19,000 fans in 2013… and I can’t wait to see how big this community and it’s voice grows in the next year.

Gluten-Free Leadership in 2014

It’s my intention to shed more light and gain us more respect in the public eye.  To advocate for those who are newly diagnosed and even those who suspect they have a problem with gluten despite little support from anyone else.  We all deserve a helping hand to get healthy and feel good.

Being sensitive to gluten, no matter where you fall on the spectrum, has massive health ramifications which is why education is key.

Let’s take the conversation out the gutter and away from spreading fear and lobbing angry blog posts at anyone who’ll listen on the web and make our words count.

This way of living has changed my life… your life… and others’ lives whom I and you know.  There are so many people out there who simply want to feel good, play with their kids and eat well.  It’s not too much to ask.  If anything, I think it’s the bare minimum.

Tell me…

Leave a comment below and tell me how I can be a better advocate for you and the gluten-free community.  I’m open to all sorts of ideas and suggestions!  Are there events in your area that I could come and speak at?  Local support groups that need a jolt of inspiration and enthusiasm?  Are there certain aspects of this diet and lifestyle that you’d love to see covered?  Are there recipes you’d love to see or someone you want to hear interviewed on my podcast?

I’m listening!

Wishing you a wonderful 2014…

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