In case you were not able to attend the 2014 Celiac Disease Foundation (CDF) conference and expo in Pasadena, CA, maybe you should make plans for next year! Besides thought provoking and knowledgable speakers, there was gluten-free food galore (lunch, dinner, and snacks) as well as the expo (demos, tastes, and take-home samples).
Here is how the event was organized:
The Conference
Participants were greeted Saturday morning at the Pasadena Convention Center to a wonderful breakfast with plenty of choices: all gluten-free with options for dairy-free and vegan. It was nice for me to finally put some faces with names I have known for a while like Chad Hines, The Gluten-Free Dude as well as seeing some familiar faces.
Next, everyone proceeded into a meeting room where the presentations took place. It was nice to meet the faces behind the CDF board of directors. Some of the things that were brought up were that they were trying to change the rate of diagnosis, trying to figure out the best way to screen for celiac disease, and providing a healthcare practitioner directory. Sounds like a lot is changing and all for the good.
Many people were excited to hear Dr. Alessio Fasano, from Boston’s Center for Celiac Research. He did something unique where he had participants use their smart phone to participate in a live survey by texting their answers. Results were interesting. Dr. Fasano mentioned that the problem with celiac disease is that it can attack your own body, brain, and skin. It’s a one of a kind disease and is truly the enemy. Gluten can trigger autoimmune disorders. We only have a treatment and not a cure. Why is gluten toxic? Our bodies have evolved to not be able to digest it; the grain hasn’t really changed in the past 100-150 years. Although there is a fad diet component to the growing market of gluten-free, celiac disease is on the rise and is almost considered an epidemic. He talked about the celiac disease “recipe”: the trigger or gluten, a genetic predisposition, and a leaky small intestine. He also said we are not born with celiac disease. They are researching why it starts in hope that maybe they can one day prevent it.
The next set of speakers discussed therapies. There were two different speakers from LabCorp and Quest Diagnostics. They spoke in detail about the testing that is done for celiac disease. Dr. Daniel Adelman from Alvine Pharmaceuticals talked about a pill they are developing (and testing) to help patients in to reduce inflammation.
Dr. John Zone, from the University of Utah, discussed celiac disease and the skin. In his opinion, gluten cannot penetrate the skin unless there is a break. He talked about psoriasis and hives, and how they can be associated with the disease. He also talked about Dermatitis Herpetiformis (DH). Many doctors don’t know how to recognize it, therefore they treat the symptom (dry skin) and do not know the cause.
Dietitian Pamela Cureton, also from Boston’s Center for Celiac Research, gave an honest overview of how a gluten-free diet is managed in a hospital. She gave some poignant and honest advice to those with celiac disease on what to do if you are admitted to a hospital. Some times mistakes are made. If you are looking at a hamburger on a bun and it looks too good to be true, have someone else try it first. I can fully relate as I have had that happen to me in restaurants.
Next there was a quick presentation from Rhonda Resnick who has co-founded The Resnick Fund with her husband. The purpose of the fund is to provide emotional support to the children who are affected by celiac disease. I love the thought behind this and want to try to help them. Stay tuned.
After a delicious gluten-free lunch, we listened to the founders of Dr. Lucy’s, Amy’s Kitchen, and Pamela’s Products. It was very interesting to hear their stories and how they got started. I even got to meet all of them!
Onto the Expo…
I love expos because I get to meet the vendors (and some times the owners/founders) as well as meeting the people who are living and breathing gluten-free. Hearing their stories really inspires me to do what I do.
I also loved being a part of the blogger team. I’m lucky to call these ladies my friends as well: Erica Dermer (she did a great job organizing us) from Celiac and the Beast, Kirsten Berman from Gluten Free Gal, Charissa Luke of Zest Bakery, Michelle Palin from My Gluten-Free Kitchen, Alison Needham from A Girl Defloured, and yours truly!
I feel as though the more people know about each other’s stories, the more we can help all of those out there who are still undiagnosed. If you think you couldn’t possibly have celiac disease, think again. Be aware of the signs and if you are suspicious at all, get tested. The upside is that you will either start to feel better or probably avoid other diseases down the road. You will also be surrounded by an amazing community.
See the pictures below for a “taste” of what it was like.
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