Canadian Celiac Association Conference 2013
I’m back from the Mississauga and Toronto areas of Ontario after speaking at the Canadian Celiac Association conference on Saturday. What a terrific experience that event was! The Halton Peel chapter of the CCA hosted the event. President Marilyn Mahnke, her organization, and all who made the conference happen really did an outstanding job! I will talk more in depth about this event later, but I wanted to share one personal story—a success story that Dr. Stefano Guandalini, the event’s keynote speaker, shared during his opening presentation.
First, if you’re not familiar with Dr. Guandalini, let me tell you a little bit about him. He is the founder and medical director of the University of Chicago Celiac Disease Center. He is also the Pediatric Gastroenterology Section Chief there and the president of the North American Society for the Study of Celiac Disease. Dr. Guandalini shared a story about one of his patients as an example of individuals with celiac disease presenting with atypical symptoms, namely extraintestinal symptoms. (If you are not familiar with that term, extraintestinal simply means occurring outside the intestines.) Dr.Guandalini had shared in his presentation that the majority of those diagnosed with celiac disease today present with extraintestinal symptoms, not the gastrointestinal issues that have been expected of one with celiac disease. Then he gave us a real life example, the story of one of the center’s patients.
Anxiety and Celiac Disease
photo credit: Flickr hales19
A 17-year old girl had been experiencing major anxiety. For about 9 months she had been on Prozac, but had still been having major issues. Her aunt had been diagnosed with celiac a few years earlier. She urged her family to get her niece tested for celiac. Her niece was tested and did, in fact, have celiac disease. After 2 months of living gluten free, she was also free of anxiety and medications and thriving!
Wow, huh? This story is obviously a powerful, powerful example of the effect of gluten as well as a demonstration of how removing gluten from one’s diet can—in many cases—totally reverse the symptoms. I have to tell you that it’s personal stories like these that motivate me to keep educating folks on celiac disease and non-celiac gluten issues. These stories must be shared.
Anxiety was actually one of the symptoms that I experienced the last year or so before I went gluten free. It was not major anxiety in my case, but it was still very disturbing to experience it and have no control over it. I think that many who have gluten issues experience anxiety, but don’t tie it to gluten.
One point I’d also like to make here is that while anxiety is considered to be an extraintestinal symptom, there is actually a huge brain-gut connection. Symptoms manifested outside the gut can indeed be caused by problems in the gut. Here’s an article from Scientific American on The Neuroscience of the Gut that addresses the issue. My dear friend Melissa (of Gluten Free For Good and co-author of The Gluten-Free Edge) talks about gluten’s role as a neuro-toxin–or as she calls it a “neuro-cootie”—briefly here. I’ll talk more on Dr. Guandilini’s presentation in this area in a follow-up post. In the meantime, please share this personal story with others to enlighten them that celiac disease can absolutely present with neurological/psychological symptoms only. There are so many, many folks who are still suffering needlessly.
Emotions in Motion ~ Psychosocial Challenges of Gluten Issues
That was the title of the presentation that I gave at the conference. As far as anxiety, I definitely felt some before taking the stage, but I’ve found that the secret to conquering anxiety—and general fear of public speaking—is talking about a subject that you not only know, but are also very passionate about. That passion will get you past the fear and your knowledge will carry you the rest of the way. I won’t say that I am a totally polished and professional speaker by any means, but those two factors always help me tremendously.
Those of us who are gluten free all know this topic of the psychological and social challenges of living gluten free very well. I am so pleased to share that my presentation was very well received! Many came up to speak to me after my presentation and others contacted me online to say how much my presentation resonated with them. One very kind conference attendee, ElseB, left this comment on my blog: “I heard you speak today at the Canadian Celiac Association’s Annual Conference on this topic and the 5+ stages of grief, and it was the best presentation I’ve probably ever heard during my 5+ years as a Celiac. You managed to articulate so well what so many of us experience daily! Thank you!”
That kind of feedback fuels one for days and days! I am so appreciative of ElseB’s words and those from other kind conference attendees. They make me emotional in many ways. I am truly so happy to be a part of the gluten-free community.
I used previous posts here on gfe as the foundation of my presentation. If you are struggling with your challenges and/or missed these discussions earlier, I suggest that you check them out via the links below. Please also read all the comments on these posts. They are just as valuable as the discussions in the posts.
photo credit: flickr canonsnapper
~ Grieving Gluten: The Five Stages of Gluten Loss, Plus a New One,
~ They Just Don’t Understand—Part I: Dealing with Gluten-Full Family and Friends, and
~ They Just Don’t Understand—Part II: Strategies for Dealing with Gluten-Full Family and Friends.
photo credit: Flickr :mrMark:
My presentation and all the others from the CCA conference will be available in PDF form on the CCA’s website soon. Many, many thanks to the folks of the CCA for being willing to share the presentations with those who could not attend and for allowing me to be part of their excellent conference, and again thank you to the wonderful attendees I met as well. The conference was truly an outstanding experience!
A Cooling and Tasty Concoction for Summer
Homemade V-8 Splash Tropical Blend
Recently I had the honor of guest posting over at my good friend Linda’s Gluten-Free Homemaker blog. She’s having a number of guest bloggers sharing summertime recipes. I had the pleasure of kicking off her series with my Homemade V-8 Tropical Splash Blend recipe! This beverage that’s between a juice and a smoothie in thickness is so good and so easy that I think I’ll make one right now, before I head out the door to catch up on a bunch of errands. Get the recipe here!
Have a good week, all! Keep spreading the word on the effects of gluten and how to live gluten free easily!
Maggie says
Sounds like an incredible conference Shirley. I’m thrilled to hear your presentation went so well! What a great compliment from Else! Go Shirley go. Your cape is already on and you’re rocking it 🙂 xo
Shirley says
Hi Maggie–It was really well done. The organizers should be extremely proud of their efforts! Thanks so much regarding my presentation, dear. I love the cape imagery. I’m going to use it any time I’m feeling like less than a super hero. 😉 I will think Shirley, go put on your big girl panties and your cape! Hehe!
xo,
Shirley
p.s. Can it be only a little over a week since we were all together? Time always flies by so quickly! Holding the warm memories of my evening with you, Ricki, and Katie close to my heart! 🙂
Vicky says
You are quite right! If you have knowledge and feel passionate about something it is so much easier to stand up and talk about it! Well done, I’m so pleased it went well! It’s wonderful that others were able to relate to your own experiences and knowledge so I’m not surprised you had such great feedback 🙂
Shirley says
Vicky–I learned that little trick when after putting off taking speech until my senior year of college (hoping that the very challenging–and also ancient–professor would retire … he did not, but that strategy worked for some professors! LOL). So finally had to take speech, with the only professor, a guy who could make one tremble (or so it seemed at the time). I couldn’t motivate myself to just speak on anything, it had to be really interesting to me or fire me up, so to speak. 😉 I still remember the speeches I gave in that class 3 1/2 decades later. Anyway, many thanks for your kind words regarding my presentation, dear!
Shirley
Vicky says
You are welcome! I also remember a professor like that in my sociology tutorials – he has a programme on BBC Radio 4 every week which I listen to and he doesn’t sound half as scary now..:)
Shirley says
Haha! It almost seems silly in retrospect, doesn’t it? But having said that, I can still remember how Professor Duke struck fear in my heart! 😉
Ina Gawne says
Great post Shirley! I was like you too with the anxiety…it still astounds me that there are so many associated symptoms to Celiac disease.
So glad you had a great experience at the Canadian Celiac Association! My town has a big Celiac banner hanging down the main street! 🙂
Shirley says
Ina–I think there are many who experienced anxiety and similar issues. Perhaps some of them still haven’t realized that symptom was tied to eating gluten. It’s not unusual for us to quickly take for granted some of the improvements we experience when going gluten free. Or in some cases, folks realize way down the road that oh, yeah, I haven’t had that issue since going gluten free. You are so right about how many symptoms are tied to celiac/non-celiac gluten intolerance!
Very cool on the celiac banner! Is it always up? Left up from Celiac Awareness Month? Do tell!
Thanks on all, dear!
Shirley
Susan says
Hi Shirley,
So glad to hear that your trip to Mississauga was good and that the conference was so successful. I’m sure that you resonated with many attendees and appreciate you taking the time to share your vast knowlege and recipes with us.
Shirley says
Susan–Thank you as always for your lovely words! It’s simply wonderful having you as a gfe reader/commenter! 🙂
Shirley
Linda says
Shirley, I love how that story illustrates the many symptoms of gluten intolerance and that so many problems can be solved by a diet change–not drugs. I’m sure you did fabulously with your talk. I’m so glad you got positive feedback. It really does make your day when someone lets you know how they were affected. Finally, thanks for sharing your V8 Splash recipe with my readers. It’s a winner!
Shirley says
Linda–I love that, too. I have to say that it was my most favorite part of all that Dr. Guandalini shared. 😉 Thanks so much regarding my talk. As you well know, most gluten-free bloggers/speakers blog/speak first and foremost to help others, so the impact of such feedback really is huge. And btw, I’m sending you good wishes for your talk at the Savvy Blogging Summit this week, but I’m sure you won’t need it! I wish I could be there for that!
Happy to share my V-8 splash recipe! 🙂 Now I’m wondering if I ever commented on your post … better check!
Shirley
Delise Dickard says
The compliments you got at the conference were absolutely on target. The “grieving gluten” conversations have been the best I’ve ever read. You are an inspiration to us, Shirley. As to the anxiety, I’ve been glutened twice this month (Kybecca and Carlos O Kelly). Eating out is always a risk, as we know. But three days after the first one I had to give a speech and I do have some stage fright but this was unbearable. This time I had been sick for two days and while speaking, the anxiety was so high I went straight to the doctor after the talk. I assumed, after this experience a couple of weeks ago, I was just not cut out for public speaking. Now I think it was one more symptom of the exposure and I’m happy to think that maybe I can continue to speak about the topics that I am knowledgable and passionate about. Thank you….
Shirley says
Hey Delise–You are too, too sweet, but I so appreciate your words and ongoing support here and IRL! 🙂
I hate that you have gotten glutened so much lately. And getting glutened before a presentation is just horrid. I think you are a natural speaker so I’m very sure that your anxiety was due to the effects of gluten. Again, I’m so sorry. With your book now done and many speaking opportunities sure to be ahead, have confidence that you will be speaking about what matters to you and you will excel!
Hugs,
Shirley
amber says
Hi Shirley,
Thank you for this amazing post. It’s so important to get this information out there. We are so dependent on drugs to cure symptoms of any representation and here is a perfect example. Fascinating!
On a personal note, anxiety runs in my family. I would not say depression is my vice nor in my family. But anxiety, yes! I know that many can suffer from both anxiety and depression and they often go hand in hand. But I can tell you, going gluten free honestly helped my anxiety. I always felt like such a high-stung person and never knew why. What going gluten free did for me in many ways was help calm my mind and body and helped me think clearly and be a more mindful, self aware person. I will always possess type A tendencies, but life,in general, is much more manageable gluten free.
I also agree with you about the public speaking. It sounds like you did a great job. But I really agree with your points. For example, at work when I’m speaking in front of groups I feel so at ease and relaxed. Why? because I know exactly what I’m talking about, feel competent, and confident. But recently I had to give a speech at my dear friend’s wedding (I was the maid of honor) and I was soooo nervous. I had my speech memorized, but still, I was shocked at how nervous I was even though I have been working on my public speaking for so long and speak in front of people quite often. It really is all about context and content isn’t it! 🙂
I will be sharing this informative post. Thanks again for sharing our experience, Shirley.
Hugs,
–Amber
P.S. Love the drink! 🙂
Shirley says
Hi Amber–Don’t you wish that alternatives to meds and sources of issues would be the first consideration vs the last one? Thank goodness that young lady’s aunt pressed for testing!
I appreciate you sharing your and your family’s experience with us. I totally understand having a Type A personality, but no longer having that anxiety. I’m right there with you!
Giving the speech at your friend’s wedding must have been so extraordinarily stressful. That’s a totally different kind of public speaking IMO. That is when so much pressure is placed on you to say that absolutely perfect thing with just a few words. Way too hard! Glad you survived it!
Thanks so much for sharing my post with others, dear! And, yes, that drink is both healthy and delicious. 😉
xo,
Shirley
Ina Gawne says
Shirley – I think they have it up for the month for Celiac Awareness month. It is great to see and to know of the support and awareness that is happening in our city.
Lynne L says
I am sooo sad…I almost went, but I had an educational weekend booked on the same weekend before I heard about it. I, too, was in Mississauga that weekend. I almost cancelled going to the educational. If I had known you were speaking, I would have. Thank you, thank you, dear Shirley, for your willingness to share the presentations etc for those of us who couldn’t attend…and to think we were that close!
Shirley says
Oh, Lynne, that would have been so awesome to meet in person! Ratfinks on missing each other this time! 🙁 That must mean that we are meant to meet at a later date. 😉 I will share more on the conference soon, probably next week.
Shirley
Ricki says
I was sure I left a comment on this post–?! Oh, well, technology!! 😉
In any case, OF COURSE your talk went incredibly well (and they were so lucky to have you there). It was wonderful to finally meet you and share dinner with you, Maggie and Katie, too. And as it was when you posted your series on the blog, this topic remains so important to those with Celiac (or any allergies). The drink looks amazing, too! 🙂
Shirley says
Ha, I do that all the time! And I also think I’ve replied to comments or not that much time has passed before I go to reply and I’m wrong on that, too. 😉
Thanks so much, dear! It was absolutely delightful to meet you and Katie for the very first time, as well as see Maggie again! I plan to do a post with Katie’s recipe sharing our get together. 🙂
The emotional aspects are stumbling blocks to many. I am so grateful to have a supportive Mr. GFE and Son first and foremost. 🙂
That beverage is very tasty and I don’t feel over “sugared” when I drink it either, just healthy!