Friday, May 31, 2013

Celiac Awareness Month is Over. Now What?

Thirty-one days of raising awareness of Celiac Disease and non-Celiac Gluten Sensitivity (that's a mouthful) has come to an end.  This year the month was more eventful than I remember it being in previous years, though not entirely for the right reasons. 

Disney came under fire for an episode of a popular kids' show that turned the bullying of a gluten free child into a joke, Chelsea Handler had something to say about gluten free people, and the Today Show aired a segment discussing how being gluten free is a turn-off. 

The list goes on. 

While most of the people I know in the gluten free community, myself included, reacted with a range of emotions ranging from anger, to disappointment, frustration or sadness, these incidents just reinforced the importance of a month dedicated to awareness and education. 

The gluten free fad has expanded choice for those looking for gluten free products, but it has also made it more difficult to be taken seriously when it is a matter of health and not choice.  It's not the end of the world if someone cutting gluten from their diet for non-health reasons gets cross-contaminated, but it is for someone suffering from Celiac disease or non-Celiac Gluten Sensitivity.  My son suffers from rashes, abdominal pain, diarrhea, change in energy, mood swings and difficulty concentrating.  It's hard to know how long symptoms will last for.  Might be a day, might be a week or more. 

The more society sees people who eat gluten free as "picky eaters," whiners, annoying, or just plain difficult, the more likely it is that someone in charge of my son's food will neglect to take his food restrictions seriously and make him sick.  There are endless stories of restaurants offering gluten free items on the menu but not taking any precautions against cross-contamination, of family members or friends pressuring someone to eat something with gluten because their illness is "all in their head," of prominent celebrity chefs publishing "gluten free" recipes that feature ingredients containing gluten. 

So although May has come to an end, the struggle to spread the word about Celiac Disease and non-Celiac Gluten Sensitivity continues.  There was a time when mentioning a peanut allergy was met with a blank stare; now most people are familiar with the seriousness of it.  Things change.  Celiac is difficult for many to grasp because the symptoms can be so varied, and often the physiological reaction to gluten occurs hours after it has been consumed, and people suffer in private.  Sometimes the damage isn't visible to the naked eye at all.  It's hard to make people take seriously an illness where the symptoms are often silent and they are unable to actually "see" the damage.  It's also difficult to make people understand a disease that there's no medication for, no doctor supervised treatment outside of a change in diet. 

It's not a lost cause.  It just means we have to keep working.  If my child had a disease that required someone at his daycare or in his school to help him with his medication, or if he had a life threatening allergy, I would be providing those institutions with as much information as possible about his condition and how to keep him healthy.  I approach this the same way.  It's important that his food restrictions be understood and that he can feel safe in his environment.  It's imperative that those who care for him when I'm not there understand the consequences for him when he is contaminated with gluten. 

Advocacy isn't always about making a lot of noise.  It's not always about petitions or blog posts or campaigns.  It can be about focusing on your circle of influence.  Start with those in your immediate circle.  Answer questions, provide suggestions, be patient when faced with the types of questions whose answers seem obvious to you but clearly aren't to the person asking.  Don't apologize for being gluten free, but don't assume that everyone will be willing to bend over backwards to accommodate your needs.  Thank people who do.  Don't eat something that will make you sick to keep the peace, and don't waste your time engaging with people who would pressure you to do that in the first place.

If you want to do more, great.  Write that blog post, pen a letter, make a donation or attend an awareness event.  Speak up when something comes to your attention.  It was an online petition started by one woman who got that Disney episode pulled.  We have a long way to go, but I have faith. 

The gluten free community is full of some fierce people.  I'm often awed and inspired by the dedication of those I engage with online and in "real" life.  There was an incredible push for awareness this month, and I have no doubt it will continue into June and beyond.  I'm proud to be a part of this community, and inspired by the work everyone does every day to make life easier for those who are gluten free.  Keep up the good work!

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