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Disney Channel, What they should know about how a kid with Celiac Disease grows up

Disney has gotten a lot of backlash from the Celiac community for standing up for what we believe in, standing up for what we think is right, and standing up for our kids sakes. If you haven’t heard about the Jessie Episode, read about it here. Here’s the petition to get it taken off the air. 

I was diagnosed with Celiac Disease in 1992, when one of the few gluten free companies in the world was Ener-G breads, a brand now almost no celiacs eat, but it’s what my only choice was. Over the years my mom figured out how to make her own bread, make most of her gluten-full recipes gluten free (she makes an absolute kick-ass loaf of bread, and kick-ass waffles), and I learned to read by reading labels, looking for gluten ingredients (back then there were no allergen statements). Once I started elementary school life got hard, you think elementary school students should be care free (they should be), but constantly being the kid who had to bring their own food everywhere was stressful, annoying, and a downright pain for a 5 year old. 

I adapted to bringing my own lunch to school every day, eating my crackers that tasted like cardboard while all my friends got hot lunch pizza and chips that I couldn’t eat. My friends would jokingly try my food and then spit it out saying it was so terrible they couldn’t even swallow it, not knowing that to me that little bite was worth so much because my mom had special ordered the snacks from London. My friends thought it was funny, and after a while I got used to it, my food tasted like crap and everyone knew it. I was the kid who brought her own cupcake to birthday parties, her own special kid pizza to cook in the oven for sleepovers, and was never invited out with friends when they were going out to dinner. 

I was the only kid in the Stanford Celiac Support Group, the members ranging in age from 30-70, me being about 8 when I joined. The men and women in the Support Group were my inspiration to learn how to stand up for myself, they taught me about raising awareness about Celiac- rather than just letting people make fun of me, they shared recipes and products that actually tasted like their gluten-full counterparts, and they showed me that you could live as an adult with Celiac quite easily. 

Even through middle school and high school I struggled fitting in and getting treated not like a special kid who craved attention. I participated in the Stanford Celiac Conference, helped run the kids and teen programs and had an active roll in raising awareness in the celiac community, to my friends, and other people at my school. When going out to eat in high school with friends I would always “pre-dinner”, that is eat my dinner at home, meet up with them and then just order a soda and sit there while everyone else ate (this was before gluten free restaurants and gluten free menus existed). Waiters looked at me like, oh you’re one of those people who is anorexic, doesn’t eat anything. I would have rather had people think that of me than get sick or be a pain towards a restaurant, I always hate to impose/make a big deal about my intolerances. 

As the gluten free food got better and better, I got made fun of less and less. My friends would even eat the gluten free food my mom would make when everyone was over at my house, not knowing it was different (then getting surprised when I was eating it as well). I still brought my own food everywhere I went-including my senior prom dinner to which I brought a “steak in a purse” to. 

By the time I started college most people knew what gluten free was, my dining hall had gluten free options (except when once they by accident made the gluten free lasagna with wheat noodles, and every celiac on campus was sick the next day), there was a place that had gluten free pizza a few blocks away, and suddenly everyone started going gluten free. (my rants about everyone going gluten free can be found elsewhere on this blog, I won’t get into that now). 

What Disney needs to know is that being a celiac isn’t hard, what’s hard is the people around you who make it hard, who point out that you’re different, who make fun of your food, and who make you feel horrible about a medical condition you have. The awareness of gluten free has increased exponentially which is great, but kids still go through what I went through, kids are still singled out and bullied because of a disease they can’t change, something they will live with for the rest of their lives. 

They should never portray a kid being bullied, especially for a disability they didn’t chose. Kids who watched this episode before it was pulled will think, oh I’ll be funny just like the kids on Jessie and make fun of that gluten free kid in my class, or let’s see if he gets sick if I switch my lunch with his “by accident”, or maybe let’s just throw some flour on her car doorhandles so she can’t get into her car. NONE OF THIS IS FUNNY, NONE OF IT WILL EVER BE FUNNY. 

Thankfully, I embraced celiac disease, it’s the thing that defines me as a person, I’m now a counselor at a celiac camp every summer, trying to be a rolemodel for young celiacs growing up and trying to cope with friends, eating out, and everything that kids go through. 

Looking back, being diagnosed at such a young age was a blessing, but back then I would have given anything to not have been diagnosed til college. It was a curse to me back then, and I hope that Disney realizes that there are thousands of kids living with this disease, watching that show, and being made fun of for their disease every day. 

Also, sidenote, to those parents so pissed off the episode wasn’t aired, who gives a crap? it’s a terrible show anyway and it’s just one episode

— 1 year ago with 15 notes
#diseny channel  #jessie  #celiac  #celiac disease  #coeliac  #coeliac disease  #ceoliac  #gluten  #gluten free  #glutenfree  #gluten intolerance  #gluten allergy  #gluten sensitivity 
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