Not Even A Crumb

Interlude on the Gluten-Free Road to Enlightenment.

Note: The beginning of this post is my personal take on the FDA teleconference. If you've heard enough about it, I understand. Just make sure to scholl down to catch up with the visuals of our Gluten-Free Road Trip.

Last week marked the half-way point on our Gluten-Free Road Trip! The journey continues to provide us with new experiences, gluten-free inspiration and surprises at every turn. Recently I got a true taste of all of it...

 

All at once.

It all started simply enough. After some heavy-duty lobbying from some of the movers and shakers within the Celiac community, the FDA decided, via teleconference, to reopen the discussion regarding proposed thresholds of gluten in products labeled "gluten-free". (i.e. the new gluten-free labeling law). Celiacs from all over the country were invited to join in. We were provided a code and a call-in number. (thanks to Vanessa at Delight Magazine for getting me on the list!)

The time approached and I called in and listened to the FDA's version of music on hold -  a 2 sentence recording played over and over. First there was a disclaimer telling me that the conference would be recorded - and if I didn't approve I was to hang up immediately! Second...I was instructed to "please hold on to wait for the conference to start". Then the disclaimer played again. And then...well you get it. Over and over and over and over.

Being on hold was OK. I used the time wisely working on my next post about our experiences at Montana Gluten-Free Processors. Finally, the recording changed, and it was lights up! After all of the introductions and a little back-patting the discussion finally began. An easily digestible version of the teleconference can be found here:   http://www.notevenacrumb.com/celiac-in-the-news-1.html#tp

Also, a replay will be available until September 2, 2011. To listen to the entire conference, callers can dial 866-415-8391.

The teleconference was packed with information and ideas. It seemed that every area of our Nationwide Celiac community represented. Favorite Celiac Rock Stars including Dr.Fasano were among the speakers. The FDA accomplished their goal to restart the gluten-free labeling conversation, and better yet, they really want to hear from the gluten-free consumer. YOU & ME! 

I hope you'll get involved. Until November 3rd we can log in and post our comments and suggestions. All the info is on their press release: http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm265838.htm#.TjhkheNGGjM.email

Back at the conference things were winding up. The callers had just been asked to weigh in with their ideas, when - !BOOM!  !CRASH! A huge bolt of lighting hit our internet tower and my computer screen went black.  (Note: My Son Jeremy snapped this amazing photo. Today his post is all about Montana weather - including many more amazing lighting photos)

Great photos, but the internet was DEAD! Really dead....the power bolt fried much of the equipment at Little Appletech - our internet provider. Ultimately, we were down for three days (an eternity in cyberspace).

We knew a storm was coming that afternoon, the clouds had been boiling for a while. And we look forward to thunderstorms entertaining us almost everyday in the Summer, but this one was truly epic!

While the storm power-washed our home (bonus: windows too), I pondered life without the internet. Then, I had this "every cloud has a silver lining" sort of epiphany.

(start fantasy dream sequence music) This is a blessing, I thought. While the internet is down, I would finally have time to sort through all of the still photos from the gluten-free road trip. I could catch up on the growing stack of mail, and, oh yes, I could do laundry too - (whoo hoo)

Starting to sort the photos, categorizing the memories, great food, and new friends, this wave of gratitude washed over me. The work on this project to help educate the newly diagnosed and raise awareness along the way has been incredibly rewarding. In addition to helping restaurants fine-tune their gluten-free kitchens, several chance meetings have resulted in at least 3 families getting tested. We all know that the road to diagnosis is often a very rocky one. This trip constantly reminds me that it's this kind of "boots on the ground" contact that changes lives. Then, amidst the continuing barrage of lighting and thunder, another flash of insight:There are gluten-free bloggers all over this country...all over the world. Imagine if they all got together and created their own version of :

"Going Gluten-Free in _______" (fill in the blank - with your own little corner of your GF world).  

What do you think? Maybe you'd like to raise awareness in your neck of the woods. Think about it. In the meantime, the sky has cleared and I can't resist sharing a little visual inspiration, in the form of a photo journal of my internet downtime. Enjoy : (note: If not already featured, I'll be posting more about all of these venues throughout the Summer. Now it's back on the road. Next up we'll be visiting Montana Gluten-Free Processors where they grow, mill and process Timtana, and Proatina Gluten-Free Oats)

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Aftermath. The storm was over but the internet was still down. Perfect time to float the Gallatin River 

                Gotta love this! After all, we are deep in the Wheat Country of Southwest Montana

 

 "Public Filming Notice" warns the camera-shy and gives us a little more freedom to move about 
 

Yeah, I know, it looks like I'm holding my breath especially as I was surrounded by bags of WHEAT! (from Wheat, Montana's mill) Actually I was going over my lines in my head. This is a very clean space.Everything is very well sealed. No dust here, no flying flour. And they're considering serving gluten-free sandwiches

 

Oak Street Market in downtown Bozeman - right on the road to Yellowstone - is a wonderland for the gluten-free traveler

 

Homemade gluten-Free desserts at the Lone Mountain Guest Ranch - yummy!

 
                               

Gluten-Free Super Foods Platter  and prep at John Bozeman's Bistro

 

Presenting the FIRST-EVER Gluten-Free sandwich to be served at Wheat, Montana!Looking forward to more in the future.

 

Dr. Fasano's talk at the Montana Celiac Society Meeting remains a highlight of the journey 

Clean plate club with Deb & Chef Matt at Sacajawea Hotel

 

Visiting an experimental Gluten-Free Oat Field with MSU's Dr. David Sands 

Larry's newest gluten-free oat bread from Montana Gluten-Free Processors - simply amazing

 
   

                                  Working up an appetite at Lone Mountain Guest Ranch 
                                                  Y'all come back now, ya hear

Stand by Me Memories and a Son's Gluten-Free Support

It's been 25 years since my son Wil starred in a movie called Stand By Me . Today is the anniversary of a special time that would change his life, and therefore mine, forever.

So I'm taking another short detour on the Gluten-Free Road Trip to reminisce. 

Wil was 12 going on 13 when we spent several magical months in Oregon with a phenomenal cast and crew - all of it under the guidance of an amazing director, Rob Reiner. And today marks the Stand by Me 25th Anniversary. My friends tell me that SBM is playing on TV everywhere right now. The movie has been re-mastered and re-released featuring a new commentary tract with Rob and Wil.

As you might imagine, when I watch this movie, I see it a little differently than most. I was at every location, on every set while every scene was being filmed. And I'm also in the "barf-o-rama" (pie eating contest). Thank you, Rob, for making it possible for me have the once-in-a-lifetime experience of blueberries and cottage cheese running down my back.There are so many memories etched into my brain; maybe one day I'll write a "tell-all".

I'm proud to say that Wil has grown up to be a successful writer, father and actor. He also has a very popular blog: wilwheaton.net

 

We know that Celiac Disease touches everyone in a family, not just the one affected with the disease. On March 2 Wil allowed me to write a guest post about Celiac Disease. (In 2 days I had over 10,000 hits to this site.) Wil's efforts helped raised awareness, brought in many donations and other opportunities that supported the production of our PSA. Wil's celiac awareness post is part of my walk down memory lane today. And I thought it deserved a re-posting.

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March 2, 2011

and now, a word from my mother about celiac disease

When we were kids, it seemed like my sister was always sick. By the time we were in high school, my brother and I were convinced that she was the best con artist of all time, regularly convincing our parents that she just couldn't go to school, and could she please have some pudding.

Well, as it turned out, my sister has had Celiac Disease her entire life. It further turns out that our mom has it as well, so my brother and I were both tested a couple of years ago. The results were negative, so my gluten-rich diet of beer and bread was not affected, but my mom and sister -- especially my sister, who is so sensitive she can't even use the same knife as I do if my knife has touched anything with wheat in it -- have had to significantly change their lifestyle to adapt and survive.

My mom did a ton of research, the way you do when you're a parent and you find out that your child has a chronic disease, and ended up becoming something of an expert on Celiac Disease. She eventually took the knowledge she gained from that research, turned it into advocacy for people who have Celiac Disease, and recently started a campaign to increase awareness of what is called "The #1 Disease You’ve Never Heard Of."

I'm going to turn my blog over to my mom for a little bit, so she can tell you more. Take it away, mom.

Thanks, Wil. You're the best son in the world. Don't tell Jeremy and Amy I said so, but you're my favorite. [Note: The preceeding sentence may have been added by Wil for comedic effect. Everything that follows is entirely true, and written by my mom.]

As you know, since your little sister Amy and I were diagnosed with Celiac Disease 6 years ago, I have become a passionate activist to raise awareness about CD. Today I am taking my crusade to another level with Not Even A Crumb™ (www.notevenacrumb.com) FAQ: Celiac is the #1 genetic autoimmune disease in the world and remains the most misdiagnosed. It is estimated that 3 million Americans are affected and 97% don’t even know it…yet. There is no cure, no pills, no drug therapies. The “cure” is a Gluten-Free diet. The only disease in the world completely controlled by diet is also: “The #1 Disease You’ve Never Heard Of”.

I’m sure we all remember how sick Amy was for years before her diagnosis. By the time she ended up in the ER, she had lost over 20 lbs and couldn’t eat anything but potatoes and rice.  Until that day, none of us had ever heard of Celiac Disease, nor was it mentioned by any of the parade of Doctors who had entered her life at that point. Many thought she was into drugs or was anorexic. After her diagnosis, we connected the dots backwards, and realized that we’d both suffered for years from the now well-known symptoms of Celiac. How different those years might have been if we’d only known that the “cure” was a Gluten-Free diet. And after 6 years on a strict Gluten-Free diet, we are both healthy and symptom free.

Two years ago I began volunteering with the Celiac Disease Foundation. I also created Not Even A Crumb™: “Easy to Digest Solutions for Living a Gluten-Free Lifestyle”. Now we have partnered with CDF to produce the 1st nationwide PSA to raise awareness. (we already have a commitment from CBS to air it!)The path to diagnosis didn’t have to be such a convoluted maze for Amy and me. The information was available, if we’d only known where to find it, or if our doctors had known to look for it. A national PSA will help unravel that maze, raise awareness, increase diagnosis and save lives. More information about Celiac and our fundraising campaign is just a click away: www.notevenacrumb.com

So there you go. I told my mom that she had an opportunity to reach a lot of people here, so if you feel inclined to share this post and the information included in it with your friends and family, that would be awesome.

Oh, one more thing: I've seen at least one local news report that misrepresented gluten-free diets as some kind of fad diet, like South Beach or Atkins or something people are trying to lose weight. It infuriated me that this station was so lazy and misleading, and many angry letters were written. Eventually, one of the stations ran a correction on their website (not on air, heaven forbid) that included a letter from my mom. If you hear some local newsmodel presenting GF diets as some kind of silly fad, instead of a medical necessity that saves lives, please point them to my mom's website, or the Celiac Disease Foundation.

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Thanks for visiting today. I hope you enjoyed this diversion along the gluten-free highway. And now it's time to get back in the saddle, back on the gluten-free road trip. The next post marks the half-way point and features, Montana Gluten Free Processors,  a local mill that processes only gluten-free flours. Their bread mixes are amazing. Photos don't do them justice, so I'm hoping we can do a give-away.

 

Disclaimer: I am not a Doctor, lawyer, rocket scientist or King. My mission in life is to raise awareness about Celiac Disease. Everything on this website is provided for informational, educational and entertainment use only and should not be used for any diagnostic purpose. Always consult with your physician regarding your health concerns.