Gluten Free, Musings

Gluten Free Expos – Exposing the Path From Survive to Thrive

Gluten Free (GF) Expos are popping up all over the place now. They are the perfect place for us GF folks to stick together until all gluten is removed from the planet, which is scheduled to happen right around the same time hell freezes over. This past weekend, I was honored to be a blogger at the GFAF Wellness event in Columbia, SC. It was a one day event, and the place was packed with awesome attendees, fantastic speakers and amazing vendors.

Why do I love a good gluten free (GF) expo?

  • Having the ability to eat anything without having to really read labels or ask a multitude of questions (however, for other allergens, your standard protocol applies to stay safe).
  • Getting to try products before you buy them – we all have different taste and texture expectations. Try before you buy is critical with GF food.
  • Mingling/commiserating/listening to others who have had similar, yet different journeys than mine.

For 2017, it is my plan to attend several expos, mainly to roll up my sleeves and chat with others so I can craft what I do in the way of recipes and education to hopefully help people to change their focus from just surviving to more of thriving.

Survive: Can’t. Don’t. Eliminate. Yuck. Drudgery. But, it helps us to be safe. It is basically where we all start out on our GF journey.

Thrive:  Can. Do. Add. Taste. Texture. Options. Memories restored. Fun! And, still safe! A place to strive for!

For this expo, I wanted to get a snapshot of who attends expos and some of their frustrations, so I put together a little survey. The folks in Columbia were so incredibly willing to help, I ran out of surveys about half way through the event. So THANK YOU to all who helped me with this little project!

So now I hope you are curious to know what the survey revealed.  Even with a small sample size of under one hundred people,  the results confirm some questions I had about being gluten free and what’s missing in our gluten free world.

WHO CAME TO THIS EXPO?

The majority of the people attending were there for themselves, while others were there to support someone else who needed to be GF – evident of the kids and parents enjoying the event.

 

 

 

 

The majority of attendees have celiac disease, followed by those identifying as gluten intolerant (GI). The remaining 11% were living gluten free for other health or autoimmune reasons.

 

 

 

 

On average, the celiacs in attendance have been GF for almost 5 years, the GI’s for almost 4 years and all others about a year and a half. That longevity may indicate that although living the lifestyle for a while now, we still are seeking new and improved ways to fill the gaps that still remain to get us to thrive GF.

 

When asked if they were “Always 100% GF” or “Mostly GF,” I got a bit concerned when only 78% of celiacs said they were GF 100% of the time. Now, I wish I would have asked a clarifying question – did they consider themselves “mostly” because they had been inadvertently “glutened” at some point?  Are they cheating? Keep reading to find out my concern for the celiacs who didn’t respond “Always 100% GF.”

 

TRANSITIONS ARE NOT EASY ON THE INDIVIDUAL OR THE FAMILY

As many of you have read in my previous posts, my transition to GF was indeed a struggle for the first several years and I still have moments of frustration on my journey. So, naturally I was curious about others’ transition and asked whether it was “difficult” or “no big deal” for themselves as well as their households. These responses helped me to feel a little better about myself, because I now know my experience was not unique, and therefore, I can maybe take the “I’m crazy” out of my self-described transition.

 

When thinking about their own transistion, the vast majority of all respondents found the transition difficult.

 

 

 

Now toss the rest of the household into the mix and everyone, to varying degrees found the transition a difficult one for the household. Traditions and routines are now forever changed for everyone. Dining out has its challenges and restaurant choices are not only based on type of food, cost, etc., but also their ability to keep someone safe.

When it comes to whether or not a home is considered GF, almost half of the celiacs considered their household GF, 10% of GI’s did, and none of the “others” considered their household GF. From personal experience, my kids were all teenagers when I had to go GF, and as much as it would have been nice to be a GF household, that was one expectation I wasn’t willing or able to impart on the family. We just had to work through it together. It had its ups and downs for sure, whether it was rules and inconveniences, the multiple meals having to be prepared, etc. The home dynamic in and of itself is frustrating and challenging.

DINING OUT IS A BIGGER ISSUE THAN MOST MAY THINK IT IS

Dining out as someone who must be GF is a ginormous pet peeve of mine. I’ve written a few posts about how to increase your chances of success, but these results were still stunning to me. Now understand, I am probably classified as a perfectionist for all intents and purposes, and I go about dining out in a different way (and frequency) than many.
On average, the South Carolina celiacs dine out about about 36 times a year (3 times a month), GI’s just over 60+ times a year (5+ times a month), and “others” frequented restaurants about 48 times a year (4 times a month). I literally got tears in my eyes as I was calculating the results of the how often people got sick eating “gluten free” at a restaurant. And before you say, I’m a wuss or “Those numbers look pretty small – it’s no big deal” please, keep reading.

Celiacs, on average, got sick just over twice a year and the GI’s over four times a year (double, which makes sense, since they reported to eat out about twice as often as celiacs), and the “others” said they did not get sick at all. Perhaps the reactions of celiacs/GI’s are more apparent that the folks following GF for other reasons.  Regardless, some possible explanations of why this number is way too high for people with digestive diseases and intolerances may include:

  • Restaurants are letting us down by not following a safe protocol to keep gluten out of our meals
  • We are not doing a good enough job of selecting places we can dine at

So why the tears? I read a lot about GF and celiac. I used to dine out a lot in my early GF days and would have reported illness after dining out at a similar rate as the survey respondents. What is it that stopped me in my tracks? I always wondered what just one single “glutening” did to my small intestines (which must always be in a state of endless care), and found some articles that changed my behaviors, frequency of dining out and how I choose restaurants (I’m talking small intestinal damage here, not the obvious physical symptoms from exposure that can last hours or days). Remember the earlier question about “Always 100% GF” vs. “Mostly GF?” This information clearly applies here too, and the following articles may help provide some insight into the length of time it takes to heal after a gluten exposure. And note, as we age, it is quite possible the time it takes to heal increases.

This article about how long it takes the gut to heal after a gluten exposure may shed some light on why slip-ups can be a problem. In my opinion, dining out is just risky business.

And this quote from another article about healing the small intestines provides an interesting insight into how far behind we are here in the US:

There’s also some evidence that adults in other countries recover more quickly and fully than those in the U.S., which led the Mayo Clinic researchers to hypothesize that the “American lifestyle,” with its frequent dining out and easy access to fast food (and consequent gluten exposure), makes it more difficult for U.S. adults to consume a clean enough diet to recover completely.”

Yikes. If it’s true, then it’s possible that people who get sick twice a year are in a perpetual state of catch up when it comes to healing. Recovery and repair were incredibly important to me since anemia and malabsorption led to my celiac diagnosis, so I don’t take this stuff lightly. And my survey only asked about gluten ingestion after just dining out – not any sickness associated with products and meals prepared at home or hidden gluten in other non-food products used everyday. So the rates of getting “glutened” at home is just begging to be a question on my next survey.

HOW DOES ONE GET TO “THRIVE?”

That’s a difficult question to answer because circumstances are so different for everyone. Time restraints are a problem. Our culture moves so fast anymore. We have different aversions to tastes and textures. Options can be overwhelming (and unproven) – from online recipe finds to strange ingredients to information. Who do you believe and how do you shortcut this lifestyle?

For me, I had to readjust my habits and manage my time differently and I had to:

  • Become better at cooking (I considered myself an average cook pre-GF)
  • Learn to actually enjoy cooking (it no longer feels like a chore most of the time).
  • Plan better – so eating out was not a regular occurrence, but a special occasion (and we have found better success eating fewer, but nicer meals vs. many mediocre meals).
  • Find good recipes and products I trusted, but with ingredients that wouldn’t go to waste.
  • Find shortcuts to increase convenience (hint: leftovers, recipes that freeze and reheat well)

LAST THOUGHTS FROM THE SURVEY

“If I knew then what I know now, what would I have done differently?” Most common responses included

  • I wish I would have started earlier
  • I wish I would have been willing to try new things
  • I wish I had gotten more information

What do you miss most from you’re pre-GF days?” When it came to food, (and whether an acceptable replacement has been found), the most common responses:

  • Pizza – by far the most missed (with about half claiming to find an acceptable replacement)
  • Pasta (and happily, many have found a good alternative)
  • Bread (but not many said they were happy with the substitutes)

Non-food specific comments of what they missed included

  • Freedom of choice and being able to eat anywhere (social events, restaurants)- without a lot of  planning
  • Cheaper groceries

This survey helped me to confirm I am not alone, and that GF expos provide a tremendous value not only to those new to the GF lifestyle, but also for many of us who have been at it for a while.  I encourage you to seek out and attend an expo when they come to a town near you. To have a safe place to sample foods without asking a zillion questions, to “try before you buy” and chat with others in the same boat as you makes the few hours at an expo time well spent. They can provide a little comfort and perhaps a new focus to get to you move toward thriving, and step out of the world of just surviving in this lifelong GF journey.