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Celiac Awareness Event: Planting Seeds

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A Wonderful Celiac Awareness Event!

After months of planning a celiac awareness event, it all came together. What a fabulous evening presenting the documentary, The Celiac Project

We had approximately 50 people in the audience. It wasn’t just that 50 people who learned more about celiac disease, however. I saw it as 50 seeds that were planted and scattered across the community. Who knows how and where the information they took with them will take root and grow. 

They won’t all grow–but if this celiac awareness event makes a difference in just ONE person’s life, it was worth every effort.

Celiac in Medical School

I have heard many times that celiac disease is only briefly touched upon in medical school. From my understanding, unless specializing in the field of gastroenterology, celiac isn’t even given a chapter or a half-day lesson. It’s a blip. 

When it comes to celiac, how can a doctor see it in a patient if s/he hasn’t experienced it through their training? When it comes to this disease, (as those of us who live with it know) this isn’t a ‘one-size-fits all’ issue. Without understanding all the symptoms and related diseases, physicians are over-looking celiac over and over (and over) again. 

The result is that far too many people are sick for far too long. Click on the Celiac Stories page for dozens of stories (kids’ and adults’). 

Who Provides This Much Needed Celiac Education?

For those of us who live with celiac, and especially for those of us who have lived for extended years with un-diagnosed celiac, it is hard to make sense of the fact that education is still lacking in general medical training. It’s not as though this is a rare issue!  If 1:100 people has celiac, (and even more have non-celiac gluten sensitivity), isn’t education about this disease deserving of more than a few slides in a powerpoint?

But then again, a lot of medical training also comes from those people who sit and wait in doctors’ offices with brief cases and samples. Celiac isn’t a disease that these representatives can offer a drug for. hmmmmm   

So now who’s job is it?

Of course, it is still the job of the medical experts to provide expert medical training, but in the meantime. . . 

Let's Just Jump in There

I’m not a medical expert. Never claimed to be. Don’t want to be.  And I’d never suggest that anyone should pretend to be. But we can provide awareness. We can provide the visuals. We can encourage folks to learn more, and we can encourage people to request more information and testing from their medical professionals.

Celiac awareness has been a passion and a drive of mine from the moment I was diagnosed. I felt so vastly improved within just a couple weeks of removing gluten that I had an almost instant need to yell it from the rooftops.  *(This isn’t everyone’s experience. The time it takes to heal and notice improvements varies. It can take weeks, months, or even longer.) 

While I lived most of my first 40 years with symptoms, I chose to put focus on the blessing of a diagnosis rather than the years of health issues that preceded it. 

Those 40 years, however, have propelled my passion and my drive to increase awareness in order to prevent that delay in diagnosis from happening to others. 

A Never Ending Need to Write ~ A New Direction

I can easily compartmentalize my past 19 years (since diagnosis) into 3 categories: family, career, and celiac awareness. One day I hope to be able to combine the last two, giving me more time to do what needs continued effort. In the meantime, I just keep following through with the voices in my head and the direction I feel compelled to take.

OK, I don’t mean to alarm you. I don’t have actual voices in my head, haha. But I do get sparks and tugs and moments that strike with such intensity that I need to write about and share. One of these times happened early last May. May 9th, to be precise. (Celiac and celiac awareness aside, the events of that day remind me of something I feel was far more than “coincidence.”) 

An event that morning that could easily be listed as one of the top 5 lowest days of my life was preceded by this INTENSE need to write about a podcast episode I listened to on my drive into work. And I thank God for that direction. 

Moving on. . .

The podcast I was listening to that morning was The Celiac Project Podcast (episode #170). It was an episode when Michael interviewed his daughter, Jessica, about a recent overnight field trip. I joyfully hopped out of my car, eager to get home and start writing that article. 

A Gift

It ended up being a very bad day (and a lesson in the *un*kindness of others–in a way I’d never experienced before). But the direction and the spark I was given JUST prior to a life-shattering event, had me sit up and just have to follow through, (and look up and give thanks). I felt I was being redirected (again) to the path of celiac education. 

Besides my family, nothing energizes me more than celiac awareness. While I had found myself in a crushing situation, I was also newly energized in another way. 

Allowing That Direction to Find It's Course

While I was typing up that new blog post (that I was simply driven to write) I was also seeing things through social media that grabbed my attention. (A line from a particular song keeps playing through my head: “Time grabs you by the wrist, directs you where to go”). . . and it brings that question to mind: Is it that things happen for a reason, or is it the reason we make out of things that happen? Regardless, it was truly about moving forward.

I saw a post from Andrea Tucker of Baltimore Gluten Free about a special screening of Michael Frolichstein’s documentary The Celiac Project.  I was fascinated by the fact that she offered a local screening in her community. 

I was pulled in and wanted to learn more. I NEEDED to learn more. I had seen the film and LOVED it. I had viewed it 2 or 3 times by that point, actually. And each time I saw it I thought, “THIS needs to be seen by everyone!” It never occurred to me, however, to provide a local showing, (until I saw Andrea’s post, that is.)

While I was writing the article about Michael’s daughter, Jessica, and their interview, I was also feeling this tug towards doing a community screening of the documentary. Life had brought me to a stand-still in one direction, but immediately put me on this other amazing path. (My GPS, as I now call it.)

A Genuine and Giving Celiac Awareness Community

I messaged Andrea and asked if we could chat. I wanted to know all the wonderful details of her screening. We ended up having a lovely hour-long conversation. And my drive to do the same (to have a special screening) became even more intense.

Oh how I LOVE this community. I love being a part of it, no matter how small my part is.


But how could I make this screening happen? Where could I offer such an event?

My fantasy of educating others about celiac now had a new vehicle, one I wanted to drive. But where could I park it?

I used to be a part of a large community support group, but this had dissolved long ago. I didn’t have the forces to pull together for this celiac awareness event, and I didn’t have funds. I just had this voice that said “do it!”

It reminded me of a conversation I had had with my dad 17 years earlier when facing another crossroads in my life. I was crying on the phone to him saying, “I need to go back to school, but I just don’t know how.” He basically told me to stop crying about it and just do it. So I did. It wasn’t an easy journey, but once I got going, it was a wonderful journey. I was so glad I “just did it.”  (I shared that part of my life in post #6 of the ‘The Emotional Side of Gluten Free‘ series.)

One day at a time. One foot in front of the other.

But how would I make this celiac event happen?

One day at a time. One foot in front of the other.

And YOU Can Do it too!

I know there are many of you reading this who would like to increase celiac awareness and education in your own communities. Maybe, as I did, you are feeling inspired to having a celiac awareness event with a screening of The Celiac Project as well. Please know this: you CAN do it! Heck, I’d love to come out and join you if I could!

You may be one person, but YOU can make a difference.

One day at a time. One foot in front of the other

A Process That Fell into Place

I just started making calls and connecting with others, and was finally led to a faculty member of a local community college. I had met Barb almost 19 years earlier, when starting the process of getting a local celiac support group going. (She has celiac as well.) I cannot remember all the details any more, but I do remember her being a part of the group for a short period of time. And now she was an amazing source of contact and assistance through this event. 

A Venue and A Date

Things couldn’t have worked out better. We met. We chatted. She made the contacts for approval for use of the community college’s theater. And she knew who to contact to help us with the technology. Bam. SO nice! Every step of the way. Such a blessing!

So now I had a location and I had a date, two very important components. All the dots were being connected.

In the meantime, I had been in touch with Michael Frolichstein, the creator of the film, along with his wife, Ellen. They hoped to actually come down from the Chicago area to the St. Louis area in order to attend the event. I couldn’t have been more excited.

Gluten Free Samples

They say you need food in order to attract people to an event. We couldn’t have food in the theater, so a meal couldn’t be planned. And yet we still had a great turn-out, as you will see. 

We did have samples, however. I contacted the owner of a local dedicated gluten-free bakery. She was thrilled to share some delicious gluten-free cookies for folks to take home. 

Now to Build an Audience

Eventbrite was a great tool for collecting RSVPs. It was a free event but I wanted to know how many to expect. I was notified every time someone ordered tickets. It was great! 

I had visions and fantasies of a “standing room only” crowd, but I also had fears of having only a handful of shows. Seeing those orders for tickets as they came in let me know there truly was interest.

For every person who read about the event, who clicked on links about the film, who clicked on links to personal stories, who saw the word “celiac,” seeds were planted.

The Day Finally Arrived

We had about 50 attendees (even though there were 81 reservations). But that’s OK. It was a Friday night and the weather was beautiful. 50 is a GREAT turn-out. 

We had several questions and quite a bit of audience participation after the film.

After the event, some of us met at a local restaurant for some Mexican food and margaritas. I was so glad to be able to have an opportunity to sit and chat with Michael.

The time absolutely flew. I think our little group could have talked for hours! (but the restaurant closed, and the servers seemed anxious for us to leave). 

I Wish I Would Have. . .

Honestly, the evening went SUPER well. I hate to throw in any “wish I would have”s. But — of course — there is always room for improvement. 

There are two things I will do differently (next time)—-yes, next time. This WAS worth duplicating! 

  1. I want a little slideshow presentation to offer attendees as they wait, and 
  2. More pictures! I realized I didn’t have near enough (of the event, and especially from after the event). 

What an A-Mazing evening!

I can’t wait to do this again!

Share A Story - Plant A Seed

Check out the Celiac Stories page for dozens of stories.
Be sure to request celiac tests before removing gluten from your diet.

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