It’s a Big Deal! First Gluten-Free Labeling Summit on May 4 in Washington, DC

 

This post is linked to Gluten-Free Wednesdays.

 

Me and Jules Shepard

Recently I was at BWI (the airport in Baltimore), waiting to fly out west to meet up with some friends for the weekend. It was a Southwest flight so I was watching everyone queue up well ahead of time. I was in group B, so I knew I had some waiting left. I was people watching as I always do at airports. Yes, sometimes I’m on my mini-netbook (which is love for travel!), but usually I’m people watching. A woman with a pink headband caught my eye. Pink headband and shoulder-length curly hair, casually dressed in jeans, a pink top, and a white sweater. A petite, cute, and friendly-looking gal. Something about her struck me as familiar. Very familiar, in fact. I realized that she looked like my friend, Jules, of Jules Gluten-Free Flour and Jules Speaks Gluten Free. However, I couldn’t be sure it was Jules because I’d never met her in person before. We’d only chatted online and via email, so all I had to go on was the small photo on her sites and her adorable caricature in her email signature.

Then my mind started working, looking for confirmation that it was actually Jules. Jules lives near Baltimore, so she’d be flying out of BWI. But we’d just been chatting a lot online and I didn’t remember her mentioning a trip. Finally, I decided I had to say something to this lady to see if she was really Jules. After all, if it was Jules, I didn’t want to miss the opportunity to meet her. Plus what possible harm would it do to go over and see if it was actually Jules? If I was right, it would be absolutely wonderful to meet her in person! If it was wrong, I’d never see this “Jules twin” again and wouldn’t really care if I made a fool of myself, I rationalized. I headed over and looked her right in the face. By then I was almost totally certain that it was indeed Jules, but still I said tentatively, “Excuse me, but are you Jules?” She smiled and looked at me seeking recognition in my face. I quickly said, “I’m Shirley Braden.” So, of course, we hugged and started explaining where we were headed and why we were traveling.

It turned out that my final destination was going to be Jules’ first stop. She was headed to the Expo West (the full name is Natural Products Expo West, but everyone calls it Expo West) in Anaheim, CA. Expo West, in simple terms, is a huge vendor fair. Jules was showcasing her Jules Gluten-Free Flour mix and had made hundreds of muffins for folks to sample. (And yes, they were all in her checked suitcase! Incidentally, Jules did a series of six posts on all the great gluten-free products she found at Expo West. The first one is here.) It was almost time for Jules to board and she was in the first group to board, so she said she’d save me a seat. (You can do that on Southwest, especially since the middle seats always go last.) A few minutes later I was seated beside her and we talked nonstop during the whole flight. The only moments we weren’t talking was when we were eating her homemade snack mix (very good!) or sharing the pecans I’d brought with me. It was a delightful time for sure, but we also discussed some serious gluten-free concerns of ours, which led to some sharing of “insider info” by Jules.

Specifically, Jules gave me a brief heads up on the upcoming First Gluten-Free Labeling Summit, for which she is one of the co-founders. (John Forberger, a gluten-free triathlete is the other.) Because this info had not yet been released to the public, she told me just a little about the event, but I was every bit as excited as she was! Since that time the info on the Summit has been released, first via social media (and I shared immediately!) and finally this last week in an official press release for all outlets. So read on and then go sign the petition that goes to the Kathleen Sebelius, Secretary of U.S. Department of Health & Human Services; contact your Congresspersons to get them onboard; and even make a donation if you can. As I indicated in the title of this post, there’s cake involved! It’s gluten-free cake—score! Oh, and it’s the largest gluten-free cake ever—fun stuff! Gluten-free cake and the passing of the requirements for a “gluten-free” label are indeed a very big deal!

I’m a firm believer in karma. Jules and I were meant to be on that plane together last month. And if you are wondering, she’s every bit as wonderful as she seems to be! I appreciate her as a personal friend and I applaud her commitment to ensuring that gluten-free people can eat safely. But there was one more bit of “coincidence”  that day (although there are NO coincidences, right?) … a young man was sitting to the right of us on the plane. At the end of our flight, he told us that he’d been listening to our entire conversation. He explained that he’s a medical student at George Washington University and had just last week learned about celiac disease. He proceeded to ask us many questions (which we happily answered; no, we are not medical professionals, but we are informed). He even hung around to take the photo above when we all got off the plane. Very cool! Now let’s get to that cake and the icing that’s needed for it … shall we?

World’s Largest Gluten-Free Cake Needs Icing of Long-Overdue FDA Labeling Regulations

Community leaders, food manufacturers, and researchers convening in DC for gluten-free labeling summit …

Prominent members of the burgeoning gluten-free community announced
today a collaborative “1in133” event on May 4 to bake the world’s
largest gluten-free cake as part of an effort to draw attention to the
Food and Drug Administration’s (FDA) delay in finalizing standards for
gluten-free food labeling. The name is derived from the fact that one
in every 133 people in the U.S. suffers from celiac disease or a
gluten intolerance issue.

To kick-off Celiac Awareness Month – globally recognized in May – the
1in133 event is being hosted at the Washington, D.C., Embassy Suites
Convention Center on May 4 and will culminate with a V.I.P. reception
for federal lawmakers, concerned members and friends of the
gluten-free community and gluten-free food manufacturers. With
pre-eminent guest speakers and information on a petition advocating
for the FDA to take action on determining a gluten-free food-labeling
standard, the 1in133 event will reinforce the need for such standards
and pressure the FDA to take action.

“This is a very serious autoimmune disease,” cautions Dr. Alessio
Fasano of the University of Maryland Center for Celiac Research. “It
deserves equally serious food labeling laws.”

Fasano, one of the world’s leading researchers in celiac disease and a
leading proponent of a federally mandated gluten-free standard, will
attend as the 1in133 event’s guest speaker.

Seven years ago the FDA was tasked with developing and implementing
such standards as part of the Food Allergen Labeling and Consumer
Protection Act (FALCPA). The delay in implementation and lack of
labeling rules has left millions of Americans with celiac disease and
gluten intolerance at risk of illness from contaminated food.

Currently, U.S. food manufacturers can claim “gluten-free” on product
labels without appropriately informing consumers if a product is truly
free of all potentially harmful ingredients. As a burgeoning market –
$560 million in sales in 2004 and projected sales of approximately
$2.6 billion in 2012 — gluten-free food products have brought many
newcomers to the space claiming gluten-free status on their labels
while not necessarily removing all potential allergens. Other
manufacturers are reluctant to label their products “gluten-free”
because there is no accepted standard. This disparate situation leaves
consumers who eat gluten-free to guess which products are actually
safe for consumption.

FALCPA was passed to protect food-allergic and celiac patients from
having to decipher ingredient labels through sometimes harmful trial
and error efforts. The law, which requires the top eight allergens to
be clearly listed on ingredient statements, did not require disclosure
of barley or rye, the other grains that are toxic to those with celiac
disease and other gluten sensitivities. The 2004 mandate for the FDA
to develop and implement gluten-free food labeling requirements would
fill that void.

The 1in133 event is the brainchild of Jules Shepard, noted gluten-free
author, baking expert and celiac community advocate, and John
Forberger, a winning gluten-free tri-athlete and active blogger. Event
sponsors include Whole Foods Market, The University of Maryland Center
for Celiac Research, The University of Chicago Celiac Disease Center,
the Gluten Intolerance Group of North America, Celiac Disease Center
at Columbia University and others. Event coordination is contributed
by Aaron E. Flores, Executive Chef, Embassy Suites D.C. Convention
Center.”

A few additional notes: I’ve talked about Jules Shepard several times before here at gfe, most recently reviewing her great new cookbook, Free For All Cooking. John Forberger is the Philadelphia Triatholon Examiner and also authors the site, Celiac Secrets. You may remember “Chef Aaron,” as he’s kindly called, from his tenure with Disney (where he ensured that gluten-free visitors could eat safely, a record that continues today) and his numerous appearances at national gluten-free events. I won’t be able to attend this Summit as I will be returning from presenting at the Gluten Free and Allergen Free Expo and subsequently visiting a dear friend outside Chicago, so unfortunately I won’t be back in time. I’m asking as many of you as possible to go in my place. ;-) Even if you can’t make it to D.C., please take a second right now to visit www.1in133.org to add your voice (and more) to support this historic event. Again, it’s a BIG DEAL!

Shirley
Not just gf, but gfe!

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Comments

42 Responses to “It’s a Big Deal! First Gluten-Free Labeling Summit on May 4 in Washington, DC”

  1. Ricki on April 2nd, 2011 8:10 pm

    I loved reading this! Talk about serendipity! That is the coolest thing ever, that you met Jules (and instantly knew who she was, even though you’d never met before). One of the many reasons I love blogging! And the summit sounds like such an incredibly worthwhile event (as is the Expo–weeping here that I will not meet you and everyone else who’ll be there!). Looking forward to reading all about it, though. :)

    • Shirley on April 3rd, 2011 4:59 pm

      Hi Ricki–Thank you! It was an unbelievable time. I like to say that I have good travel karma after riding with Michael Ruhlman to the airport from BlogHer Food last year and then getting hours with Jules on this trip. I’m so glad she wears her signature pink headband; otherwise, I might not have known it was her. Seriously. Blogging connects us with so many great folks, doesn’t it? :-)

      We’re weeping that you won’t be at the Summit, too … believe me! But, yes, we’ll share all during and after the event and know that your time to connect with everyone IRL has to be coming in the near future. Believe!

      xo,
      Shirley

  2. Lexie on April 2nd, 2011 9:10 pm

    Ms Shirley, what a great story! I have my 1-133 badge up thanks to your spreading the word. So looking forward to seeing you at the end of the month at the GFAF Expo.

    xoLexie

    • Shirley on April 3rd, 2011 5:04 pm

      Hi Lexie–Thanks! I still can’t believe my good fortune that day. :-) As you know, those “in person” meetings really solidify the online connections. I’m still so glad I got to meet you last year at IFBC! Happy you have the 1 in 133 badge up already (I need to learn to do that on my own, without tech help!), and can’t wait to see you at the end of the month. ;-)

      xo,
      Shirley

  3. Kim (Cook IT Allergy Free) on April 3rd, 2011 1:31 am

    Gotta get on adding that badge. I have to wait until my new site design is up first though! This is such a great post, Shirley!! You are doing an awesome job of spreading the word. And Ricki is so right..Serendipity for sure! So so cool!! This is such an awesome cause/ event and I am so excited to watch all of this unfold! It IS a big deal!!
    xoxo
    Now I have to go find out why I am not getting your updates in my email feed anymore. I just thought you had not posted anything in a while! Looks like i missed a couple of posts here! Weird!

    • Shirley on April 3rd, 2011 5:16 pm

      Hey Kim–I need to add the badge, too, Kim. I usually depend on my tech person to do these types of things, but will eventually need to learn to do it myself. Many thanks for the kind words, but I love spreading such fabulous gluten-free news! It was wonderful serendipity that brought Jules and me together that day. :-) Now if only it had carried through so I could have actually participated in the event by being there. I still haven’t figured out how to be in two places at once though. ;-) Hopefully, this will be more than a big deal … I’m hoping it will bring the desired changes for a gluten-free label!

      I, too, will look into the fact you haven’t been getting my blog updates and see what I can figure out. I know I hate it when that happens for blogs I subscribe to. Hopefully, we can figure this out … we need to stay in touch!!

      Shirley

  4. Desi@ThePalatePeacemaker on April 3rd, 2011 12:32 pm

    Great post, Shirley! Oh so educational! And I couldn’t agree more – this really IS a big deal. In fact, I get nearly as excited over big deals not even quite as big as this one! Haha! Anything really having to do with the world acknowledging gluten intolerance and/or celiacs usually makes me want to start gushing to whomever will listen. Anyway, thanks for keeping us all updated!

    • Shirley on April 3rd, 2011 5:25 pm

      Hi dear Desi!–LOL … I know what you mean about getting excited about big deals that aren’t so big. ;-) But the fact we can celebrate and appreciate those “little” big deals (contradiction in terms?) means we can definitely appreciate this one. :-) Spread the word … we can all gush to be sure that everyone supports this cause!

      xo,
      Shirley

  5. cheryl on April 3rd, 2011 12:49 pm

    what a fun, lucky meeting! I agree, the event has the potential to be huge for our community and I think it’s a great way of getting positive press.

    • Shirley on April 3rd, 2011 5:28 pm

      Hi Cheryl–It was truly that! I couldn’t believe our good fortune and it was a blessing to fly Southwest that day. Any other airline and those hours would most likely not have been spent side-by-side catching up the way we did. I’m hoping that 1in133 will turn out to be a huge “game changer”! It’s in your backyard so to speak, but not sure if your moving and general schedule will allow your participation. Although I know you’ll spread the word if you can’t be there. The pre-event work is the most important by far! :-)

      Shirley

  6. Jules on April 3rd, 2011 2:59 pm

    Shirley! Thanks so much for posting about our event and the fun picture of us after the plane ride! I’m just back from presenting to the North Texas GIG group, where I got to tell them all about 1in133 too! It’s so much easier now that we can finally talk about it!
    Thanks for spreading the word and for all you do for our community! Hoping to meet you on a plane (or elsewhere) again very, very soon!
    xoxo
    ~jules

    • Shirley on April 3rd, 2011 5:35 pm

      There you are, my new IRL friend and world gluten-free traveler and advocate! Very, very cool that you just presented to the North Texas GIG group and got to inspire all the members to action! :-) Secrets, especially good ones like the 1in133 event, are so hard to keep aren’t they? Thank goodness, the cat’s out of the bag! Or do I mean cake’s out of the oven? Did I just coin a new saying? ;-)

      Thanks for the kind words, dear. I’m happy to be a part of all that’s going on in our gluten-free world! :-) And please keep me posted on your travel schedule … I’ll do my best to be in the seat beside you. Although I’m glad we weren’t on that Southwest flight the other day. Thank goodness that turned out okay for all involved!

      Until next time … xo,
      Shirley

  7. Alisa Fleming on April 3rd, 2011 3:35 pm

    Shirley that was such an amazingly weird coincidence!

    I’m excited to hear how that big event goes over. I have tweeted it a couple of times!

  8. Heidi @adventuresofaglutenfreemom.com on April 3rd, 2011 5:31 pm

    OH HECK NO Shirley! Really? That is such an amazing story about how you met Jules, it was not an “accident” in my book!

    I can’t wait to see you again in a few weeks, the expo is going to be great fun!

    xo,
    Heidi

    • Shirley on April 3rd, 2011 5:40 pm

      Hey dear Heidi!–Wasn’t that the coolest thing? No, I don’t believe it was an accident either that I met Jules, or that the we both got to meet the med student who had just learned about celiac. Thank goodness I was people watching, huh? ;-) Life can work that way for sure. Jules has been calling me the gluten-free magnet ever since! LOL

      The Expo is coming up soooo quickly now. I can’t quite believe it! We need to carve out some special time just the two of us , or at least just a few of us. Sometimes the true connection time gets lost at these events … there’s just so much going on. Good stuff, but a lot!

      xo,
      Shirley

  9. InTolerantChef on April 3rd, 2011 5:44 pm

    What an amazing opportunity to connect! And you never know, that young medical student might be inspired to focus on autoimmune or celiac and might just figure out a viable treatment, preventative or cure!

    • Shirley on April 3rd, 2011 5:48 pm

      Hi InTolerantChef–Exactly! It was amazing connecting with Jules that way. One doesn’t normally have one’s trips start out with such a momentous occasion … much better than the average ho-hum flight. ;-) And I’ve thought the same about the young medical student. The fact that he actively engaged us at the end has to be a very good sign! :-)

      Shirley

  10. Ina Gawne on April 3rd, 2011 5:45 pm

    Wow – Shirley this is a really good informative post,and the summit sounds fabulous! I totally believe in karma – what is meant to be is meant to be! Thanks for sharing, Ina :)

    • Shirley on April 3rd, 2011 5:52 pm

      Hi Ina–Welcome to gfe! I’ve been so delighted to meet you via your blog, Gluten-Free Delightfully Delicious, which I found through Sophie’s mention the other day. :-)

      And I’m glad you are another karma girl! ;-) Let’s keep the good karma going in our gluten-free universe, right? This 1in133 event is a great way to do that! Please spread the word!

      Shirley

  11. Hallie on April 3rd, 2011 6:17 pm

    How neat to run into each other at the airport! That’s the stuff great movies are made of. :)

    • Shirley on April 3rd, 2011 6:36 pm

      Hi Hallie–It was definitely a very special moment and made for a great plane ride! And yes, I could see our meet-up as a movie scene. ;-)

      Hugs,
      Shirley

  12. Kim on April 3rd, 2011 6:58 pm

    Awww….two of my favorite GF peeps! :) What a great story of meeting up! :)

    • Shirley on April 3rd, 2011 10:03 pm

      Hey Kim–Awww, back at you … thanks so much, dear! We had a blast on our flight together. :-)

      Shirley

  13. Debi on April 3rd, 2011 11:26 pm

    It was kismet! That is so awesome that your first meeting with her in person was at the airport and that it wasn’t just in passing. :) I wish I could go to the summit, too. I don’t think my bosses would like me asking for even more time off from work to go traipsing off to D.C. lol

    • Shirley on April 3rd, 2011 11:35 pm

      Debi–Kismet! Another good word for our meeting! :-) Those darn bosses … remember when Crocodile Dundee would do that thing to the ferocious dogs and they would turn to mush? or when Obi One Kenobi would talk soothingly to the Imperial Guards and tell them to move along and they would? That’s the kind of thing we need to be able to use with our bosses! Agree? ;-)

      xo,
      Shirley

  14. Kim (Cook IT Allergy Free) on April 4th, 2011 1:43 am

    Just wanted to update to tell you that I just got this in my email feed today. So it must be working again? But I know that I did not get a couple at least of yours.

    • Shirley on April 4th, 2011 6:05 am

      Kim–Interweb gremlins have been at work I’d say! I actually did look yesterday and confirmed that your email subscription was still in place. Don’t know what was up for a hiatus to occur, but so glad you’re getting my email feed now. :-)

      xo,
      Shirley

  15. Alison St. Sure on April 4th, 2011 2:05 am

    Hi Shirley,
    Jules is great! She and I met when she was out here in my neck of the woods for a wedding. I never did post the picture of us together and tell about our lovely lunch and the products she brought me. Bad me. :( She is so down-to-earth – we got along great!

    I have one little (ok, maybe big) comment about this “1 in 133″ title. The number of people eating gluten-free is so much bigger than that. And I’m not talking just about some of the fad dieters. I am talking about those with gluten sensitivity who need to be as careful as those of us with celiac disease. I have been saying for years that we need to broaden our terminology and include not just those that have celiac. I applaud Jules and everyone who works on our behalf – I just feel like we are leaving out a big, powerful segment of the gluten-free population.

    • Shirley on April 4th, 2011 6:51 am

      Hi Alison!–I totally agree with everything you’ve said. You’ll probably remember that’s true from past discussions with me, and I applaud how you consistently bring this up on your blog/site (Sure Foods Living for those reading who are not yet familiar). I actually questioned Jules about the 1 in 133 figure being outdated and she told me that’s what they decided to go with. I know that the most recent numbers I’d heard were 1 in 100 for those with celiac disease, but I guess this number is the most accepted, most memorable, etc. As far as those with gluten sensivity, that brings the number/incidence way, way up. The figure stated in the recent Wall Street Journal article was 6% for gluten sensitivity (equating to 1 in 16 per my math) and as you stated in this recent post, which I greatly appreciated, you even thought that was low. Many other experts do, too. Dr. Ford, for example, has stated 1 in 10. For once I decided not to quibble on numbers that the organizers chose to bring attention to the matter or even bring those up in this post, but to focus on the overall goal. Until the scope of gluten issues are expanded by the medical community and accepted testing is improved, it almost seems like a moot point, albeit one that frustrates me, you, and many others daily. The fact is we can’t even get the 3 million people with celiac diagnosed with current testing as it stands now. How long have we been saying that 97% of those with gold-standard celiac remain undiagnosed? A few years at least. And frankly, a far bigger issue for me is actually going forward with the proposed requirement of less than 20 ppm. I have consistently gotten sick from products that state they meet those levels of gluten. But again, I decided not to bring that up for the moment and for us just to go forward with something. World celiac experts used to think that less than 200 ppm was safe and obviously that was proven far too high. I believe the less than 20 ppm is unsafe for many. And if there are those who have a reaction, how can it be safe for any? Reactions are not the proper measure of damage and damage can take months and years, in most cases. BUT, I’ve discussed these issues before here at gfe and will discuss them again. Only momentarily am I setting them aside so we can just go forward with what has been set in place.

      When I get asked about the differences between celiac/gluten intolerance/gluten sensitivity and current testing for all, I always say that these are not black and white issues, it’s truly like opening the proverbial can of worms. But I’m hopeful that we can take one big step forward and get this gluten-free labeling requirement passed. Finally, to throw another monkey wrench in the works (mixing metaphors here again, but it is this much of a mess), when the FDA called for data several years ago, Cynthia Kupper of GIG stated that there were some major manufacturers of gluten-free flour who could NOT meet the less than 20 ppm requirement. As far as I know, nothing has changed to indicate those unnamed companies are meeting that requirement today despite having “gluten free” on their packaging. Will that change with passage of this law? I hope so. Back to the can of worms, it just keeps getting wormier, so to speak. All the stats that are being used are not perfect ones, but again they are something and we need to move forward. May this be the first of many steps to get those who have celiac disease/gluten intolerance AND gluten sensitivity provided with safe foods. I’m trying to stay focused on the end goal as I know Jules and all the other organizers and individuals, research centers, and manufacturers who involved are. So if you weren’t convinced before, Alison, I hope you are now. I am with you on this matter, but I am just going down the road that’s been put before me for the moment. (I know … I really need a metaphor/analogy, etc. self-help program.)

      Big hugs and thanks for ALL you do every day on these topics as far as education and getting folks well and eating safely!
      Shirley

      • Alison St. Sure on April 5th, 2011 1:35 am

        Hmmm… well, I might agree with you if the wording in the press release (or whatever that is) above didn’t say “The name is derived from the fact that one in every 133 people in the U.S. suffers from celiac disease or a gluten intolerance issue.”
        I’m not trying to be Debbie Downer here – I think what Jules is doing is great. I just hope to raise awareness that we are alienating a huge segment of the gluten-free population when we focus only on celiac statistics. Many people who are not celiac hear the word celiac and think it doesn’t apply to them, even if they are just as gluten-sensitive as a celiac. Part of the reason that I co-founded the Gluten Intolerance Group in my county rather than a “Celiac” group is because of the name and its inclusion of anyone with gluten issues — in the 6 years that I have been consulting, writing, and teaching in the gluten-free community, I have come across more people who were NOT diagnosed with celiac than those who were. We now have over 230 people in our group and I would bet that the majority are not diagnosed celiacs — but they are a passionate group. In my own family I am the only diagnosed celiac, but I have 7 family members who are gluten-free and were never diagnosed. Some of those are more sensitive to gluten than I am.
        I think a number like 1 in 16 or even 1 in 100 would turn more lawmakers’ heads. Okay, I think I’ve made my point.

        Jules, if you are reading this, I mean no disrespect and the event sounds important and amazing! How will we be able to see that cake? I assume you will use your flour?

        • Shirley on April 5th, 2011 11:02 am

          Alison–I agree on all counts. I didn’t write the press release or organize the event. That said, I realize that unfortunately when opening that umbrella wider to include all affected by gluten, it can be more difficult to organize such events and get buy-in from the necessary folks sometimes. There’s much more work to be done in the area of acceptance of the full spectrum of gluten issues. I call my group the King George Gluten Intolerance and Celiac Support Group, but I often just reference the whole spectrum as “folks with gluten issues.” If we get right down to it, gluten intolerance is medically not considered to be the same as gluten sensitivity so that term can leave folks out, too. Like you, I’ve seen folks with gluten sensitivity who have been far more ill than those with celiac. Dr. Scott Lewey talks about this occurence quite a bit. I know one gluten sensitive individual (negative on all other testing) who was in a wheelchair before she went gluten free. Now she lives a very normal life. Again, this whole area and discussion can be a challenging one because of what is accepted by the medical community and what is not at the moment. The bottom line is I’m all about being inclusive. This is the First Gluten-Free Labeling Summit or Gluten-Free Labeling Summit 2011. As we go forward, let’s all work to ensure that all groups affected are covered! Sounds like we could potentially be “on the committee” in the future. :-)

          Thanks for being so passionate on this subject and commenting at length, Alison. I do appreciate it!
          Shirley

  16. Christine on April 4th, 2011 3:34 pm

    Wow! I just love it when things like that just fall into place.

    I’m not from the States, but I really hope that things will get more adequately labelled as I’m sure there will be some spill-over into Canada! Good luck! :)

    • Shirley on April 4th, 2011 6:49 pm

      Hi Christine–It’s definitely not the kind of thing that happens too often, so it was super special all the way around! :-) Yes, I hope that positive strides in either of our countries will help improve gf labeling and the availability of safe products in the other. A month to go to this event, so please spread the word! I am sure that you have U.S. readers, social media followers, etc. ;-)

      Thanks!
      Shirley

  17. Maggie on April 4th, 2011 7:47 pm

    What an amazing story. I truly believe that everything happens for a reason! Hats off to the unstoppable Jules for this incredible event! Thanks for sharing Shirley. xo

    • Shirley on April 4th, 2011 8:41 pm

      Hi Maggie–”Unstoppable Jules”! I love that! It’s so true and I’m so happy to have met her to kickoff my trip. It made it special from the beginning. :-)

      Glad you enjoyed my tale! ;-)
      Shirley

  18. karen on April 7th, 2011 9:45 am

    It’s such a relief that the FDA is finally getting on board to properly address the GF food labeling issue because it’s the reading of labels that is the most difficult to navigate when you are first diagnosed, wouldn’t you all agree? Now with over 20 million Americans with gluten intolerance, I guess they are being forced to change with us…it’s fantastic!

    • Shirley on April 7th, 2011 8:18 pm

      Hi Karen–Welcome to gfe! :-) I’ve been oohing and ahhing over your recipes since I won your cookbook from Stephanie over at Wasabimon/The Culinary Life. Now I just need to find some time to make them. Congrats on such a beautiful book!

      Thanks for taking the time to comment on this post on the labeling summit! The FDA is not on board yet … that’s the primary intent of this labeling summit. You’re right … most do have a very difficult time with labels when they go gluten free unless they’ve already been eating real food and few processed foods. Those types of folks are the exception though. So please spread the word to everyone, not just those who are gluten free, so we can make this labeling law a reality! Thanks!

      Shirley

  19. Jules on April 10th, 2011 3:42 pm

    Hi Shirley and everyone who has chimed in on this subject (and especially those who have signed our on-line petition & shared the link with friends & followers!).
    It is hard to describe how busy we’ve been the past several weeks trying to put this whole GF Labeling Summit/1in133 Cake Event together. There are so many tiny details that you could not even imagine! We are a small group of two (!) – John Forberger and I – who hatched this idea, and we have been been doing our best to make it a reality that will help us all.
    We both have jobs, families and demands, so we feel quite blessed by any help from others. The work of Beth Hillson and Andrea Levario from the American Celiac Disease Alliance (the non-profit this event is supporting) has been instrumental to the success of this event thus far. Bloggers like Shirley, have also been both wonderful sounding boards and megaphones for broadcasting our message!
    That being said, we still overlook things from time to time, and I apologize for that.
    To address the point Alison made here in the comments – I agree that we are talking about a much larger group of affected people than just those of us with celiac disease. This movement actually goes way beyond the numbers of Americans we can count as celiac (3 million) and even those with gluten sensitivity (18 million). In fact, we’re doing this work for EVERYONE eating gluten-free for ANY reason. We ALL deserve accurate and reliable gluten-free food labeling laws.
    When it was brought to my attention that some might feel left out by the wording of our message, we hastily amended the press release to be sure that everyone eating gluten-free would understand that we are working on their behalfs as well.
    Federal gluten-free food labeling standards will help us all, and need to become a reality NOW –none of us should have to wait any longer to have safe food.
    I hope that everyone with dietary restrictions recognizes the importance of our cause and how achieving this goal will help us all live healthier lives.

    • Shirley on April 11th, 2011 7:15 am

      Hey Jules–Thanks so much for taking the time to reply given all you have going on right now! Less than a month away from this momentous occasion that you and John have created! I’ve been thrilled to see the response so far. I’m chuckling at the image of you and all of us with our megaphones (megaphones morphed into blogs, Twitter, and FB, I should say LOL)! I appreciate your response and the fact that the press releases and announcements have been modified to make it clear that this summit and the end results will be for all who need to eat gluten free; there are so very many of us. I’m very excited about this summit and the changes it will bring to benefit us all!

      Also, I appreciate the info that you provided via Twitter to me about the cake event that Alison had asked about. It’s terrific that you’ll have time-lapsed photography taking place to capture the cake “building” and will display that on the 1in133.org website. I also hope that you can get a webcam running as hoped, because I know so many of will be tuned into that! I’ll be flying home for the Expo and a subsequent vist to a friend that day so watching the creation of the largest gluten-free cake ever while waiting in the airport will be a very special treat indeed. ;-)

      Thanks for all you are doing for those of us who are gluten free, Jules! xo,
      Shirley

      • Jeff on April 22nd, 2011 3:43 pm

        Surely no one eating or interested in living gluten free would feel left out of an event called “The Gluten-Free Food Labeling Summit.”

        • Shirley on April 23rd, 2011 2:16 pm

          Hi Jeff–Welcome to gfe! :-) I think the event is well named, and I greatly admire Jules and John so much for their tireless efforts on this event and the cause itself. I’m a huge fan and friend of Jules! However, I do understand the concerns about wording in press releases. There’s much more that comes into play in regard to folks being upset on the emphasis on celiac. So many have been denied validation of their symptoms and related illnesses without a diagnosis of celiac before they went gluten free, and we all know there are many more out there … folks who have serious gluten issues, but who won’t test positive for celiac, so they are told to continue eating gluten. Yet, it’s all a Catch-22 type situation as unfortunately much funding, research, etc. is focused on celiac alone. However, in the end, it will benefit all of us who are gluten free (or need to be). A friend was actually told by a major celiac research and treatment “player” that more and more diagnosed celiacs are what are needed to effect change, bring in needed dollars, etc. I get that, whether or not I think it’s right, but again the whole topic of acceptance of celiac only or above all is a source of major frustration to many. So while that was not the intent of Jules or John, the rub remains. For now, IMHO, we just need to focus on the desired end result—which is clearly stated in the summit name, and which you pointed out—and go forward!

          Thanks for stopping by and taking the time to comment! Best,
          Shirley

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