11 Lessons Learned in 2011 about Celiac and Living Gluten Free

Wow, 2011 has come and gone so quickly.  It has been an eventful year in the celiac and gluten free community. There are always new things I learn even though we have been managing the gluten free lifestyle for 11 years.  Here’s a quick list (in no particular order) of lessons learned on this subject this year…

There is a difference between celiac and gluten sensitivity. The grey area known as gluten sensitivity finally got some love this year when the University of Maryland and Johns Hopkins announced research explaining the difference between being gluten sensitive and having celiac disease. According to the University of Maryland’s news release on the subject last March, “Imagine gluten ingestion on a spectrum, said Dr. Alessio Fasano. “At one end, you have people with celiac disease, who cannot tolerate one crumb of gluten in their diet. At the other end, you have the lucky people who can eat pizza, beer, pasta and cookies — and have no ill effects whatsoever. In the middle, there is this murky area of gluten reactions, including gluten sensitivity. This is where we are looking for answers about how to best diagnose and treat this recently identified group of gluten-sensitive individuals,” says Dr. Fasano.  The research estimates about 18 million Americans have some kind of gluten sensitivity.  Now hopefully doctors won’t think you’re crazy when you come to see them!

Go with your gut.  My mom picked out a ham for Easter, called the company which promptly said it was gluten free.  But there was something about their answer that didn’t sit right with her.  We should have gone with her instinct…because sure enough both my daughter and my brother got sick.

Gluten free camp for kids is awesome!  For the third time, Emma went to our “local” gluten free camp, called Gluten Free Fun Camp held in Minnesota each August.  She met great friends, had a fun camp experience, all in a safe gluten-free atmosphere.  There are several gluten free summer camps in the US.  If you’re not around Minnesota you should be able to find one closer to you, click here to see a few.

We like sandwiches!  This discovery was made at camp!  A little peer pressure isn’t always bad is it?  One of the meals was turkey sandwiches on gluten free bread—and there were no other options for Emma to eat.  So she HAD to eat a sandwich (which she’s been avoiding for 11 years).  She quickly realized it was pretty good!  She’s had several ever since! Yay!

Always be in charge of your own treats.  I am constantly reminded of this lesson at events that have both gluten and non-gluten containing foods.  Most people dig right in to the chip bag with their hands or they touch a serving spoon onto their gluteny plate—both instances immediately cross contaminate what would otherwise be gluten free food.  Bringing your own snacks is the safest thing to do.

Celiac disease can rear its head when you least expect it; to the seemingly most unlikely of candidates.  One week in April this year, I had two friends contact me out of the blue and ask if they should be tested for celiac disease based on the symptoms they had.  I said sure they could.  And what do you know they both were positive!  One was a friend I have known for nearly 30 years.  Another is a newer friend/former co-worker whom I have known over the last 5 years or so.  I am happy to report both are doing well in their new gluten free lifestyles.

You can never prepare too much for your kids home ec class.  Ack! This has been troublesome for me this Fall. Bottom line: how well your gluten free child is treated in class is purely based on the teacher…not necessarily on whether you have a legal document (504 Plan) telling them to treat your child equally. (Post on this subject coming soon).

Cupcake Wars doesn’t discriminate!  Crave Bake Shop (a gluten free bakery) won a recent “redemption” challenge beating all of the “gluteny” competition on Cupcake Wars, a baking competition program on the Food Network.  We saw the team on two different shows.  The first time the Crave team came in second place.  But the most recent episode they were on, which was a “redemption” show where other former teams were asked back to compete for the title they lost, the Crave team won! Here is a gluten free recipe from her posted on the Cupcake Wars website.

I love using alternative flours.  Okay I haven’t used a ton of different flours, but brown rice flour and sorghum when used in combination with my regular flour mix has made my baked goods more moist and with better texture. YUM!

We enjoy the so-called “super food” quinoa!  It was probably one of our biggest experiments this year which yielded the best results.  Emma and I, in particular, enjoy chicken quinoa pilaf!

Photo Courtesy: Jeff Rasmussen

A grass roots effort and a really big cake can create change!  Congratulations to the 1in133.org group who lit a fire under the Food and Drug Administration to get back on track and get gluten free food labeling done!  The Gluten Free Labeling Summit last May, during which they unveiled the world’s largest gluten free cake, apparently made an impression.  By August, the FDA reopened the comment period on the voluntary labeling, with a PROMISE that they would have something official and on the books by third quarter of 2012. Great job!

Looking forward to see what 2012 will bring, I am sure there will be more gluten free adventures to come!

Tags: 2011, celiac, gluten-free, review, year