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Thursday, March 8, 2012
Confessions of a Celiac
Hello. My name is Erin Smith, I am a Celiac since 1981, and I have consumed gluten. Yes, it is true and not something I am necessarily proud of but something I needed to admit to my readers. This consumption was not recent, but was part of my youth. I ate gluten more than once... knowingly. Are you shocked yet?

Honestly, I think a lot of my gluten consumption was one part youth rebellion/trying to fit in and one part complete lack of information. I was diagnosed in the pre-internet era. Although we had some information about being gluten-free, it was really limited. No one used the words "cross contamination" in the 80s and 90s. There were no "Top 8" labeling laws. My parents thought as long as I wasn't physically ingesting gluten-filled products, I was safe. This meant a lot of eating habits that I would NEVER do today.

I am in the middle of reading Don't Kill the Birthday Girl by Sandra Beasley and one page I read yesterday hit really close to home. So close to home that I felt like I was reliving part of my childhood and it prompted this post. Sandra has anaphylactic food allergies. This means she can die if she consumed the wrong food. I feel lucky that I have Celiac Disease and not anaphylaxis when I read things like this book.

At one point in her life, Sandra's mom took a piece of Kentucky Fried Chicken, peeled off the batter, skin, and fat of the chicken breast and then fed it to Sandra. This may sound so simple but for someone severely allergic to dairy this was a risky endeavor. The crazy thing is that my dad used to do the same exact thing. We would go to McDonald's for dinner and he would peel every chicken nugget in my Happy Meal. Yep, you read that correctly. I used to eat gluten-covered nuggets on a regular basis. Again, whether this was due to the lack of information or just plain confusion or understanding about cross-contamination, it is unclear. But I ate nuggets and so many other things that it is not surprising I had a stomach ache most of my growing years. Do you know what I did to feel better? I popped Pepto tablets on a regular basis. Know what makes this even worse??? Pepto in the 1980s and early 90s was coated in FLOUR!!!!

As part of this post, I wanted to list out some of the gluten consumption of years passed. Please note, I have not knowingly consumed gluten in years now. I NEVER EVER EVER CHEAT because the consequences are not worth it. If I eat gluten, I feel like shit for days after and don't want to put myself in that situation. Growing up, sometimes I did certain things to fit in, sometimes I ate things because I was hungry and sometimes I just didn't realize what I was doing could actually hurt me. Without further ado, here is the shocking list of things I did as a diagnosed celiac growing up in the 1980s:

  • Ate peeled chicken nuggets from McDonald's
  • Licked the creme from Bavarian creme Dunkin Donuts and munchkins
  • Ate cheese off pizza
  • Licked icing off birthday cake, cupakes, Oreo cookies, etc. 
  • Ate the salt from bottom of the Bachman pretzel stix boxes
  • Peeled onion rings from the diner and ate the onions that had been battered
  • Used soy sauce
  • Ate the filling out of Chinese dumplings
  • Take wheat-covered Pepto every damn day. (No labeling of top 8 allergens back then)
  • Drank beer

Disclaimer: I DO NOT PROMOTE CHEATING ON YOUR GLUTEN-FREE DIET AS A CELIAC. This post is to simply point out how my lack of understanding of the disease during my childhood led to some really careless and dangerous eating activities throughout my life. I admit, it scares me how much gluten I consumed as a child. I worry about this consumption constantly and its how will affect my overall health for the rest of my life. But I cannot do anything about my past and all I can do is spread awareness to others to protect them in the future.

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Anonymous Karen Freer said...

this is great Erin. Thanks for posting. xo

Blogger Jennie said...

Oh my! This post me want to laugh and cry at the same time. I am busting up at the things you ate as a child. Thank goodness for all the information we have now. And I too, am grateful that eating gluten wont immediately put my daughter in life threatening danger.

Reading this made me happy my daughter was diagnosed in '96 when at least we knew a little about what to stay away from. While she did once sneak an Oreo because she just couldn't resist, she never did any of the other things you list (at least not to my knowledge)

While it might sound like I am beating my own magazine's drum, it's a simple fact that Gluten-Free Living was created to publish facts about what the gluten-free diet really requires. Our goal was to give people the best information about the diet that we could find using our journalistic training.

In the days of easy Internet access, it is hard to imagine what it was like when you could find so little information and even less that was accurate.

We followed the diet from the years when all you had to go on was the ingredients list, through increased knowledge about cross contamination, to an explosion in foods labeled gluten free to today's use of testing to determine gluten levels. All along it has been and continues to be our mission to help every-day people navigating the gluten-free diet figure out how they can choose safe food and live a healthy, happy gluten free life.

We hope no one is peeling nuggets, licking icing, eating the salt from the bottom of the pretzel bag (unless the pretzels are gluten free -- something we once only dreamed about) or drinking beer (unless it's gluten free). We hope our reporting and writing has helped contribute to the increased knowledge you describe.

And we are happy to know you are doing everything you should to stay gluten free and healthy.

Anonymous Anonymous said...

You have to stop and wonder about the choices kids really have over their food. And with so much better information and understanding, most parents (like yours, I'm certain) did the best they could with the knowledge they hvae.

What kills me is watching parents make the same choices now for their kids (Adults be damned... they have the power to do better on their own). If it is misinformation, then let's continue to work as a community to re-educate the doctors who are disseminating erroneous and misleading information. If it is out of laziness, that shocks me and makes me sad for the child.

Erin - you ROCK. I wonder how many people (kids and adults) have the eating habits like you describe above today - even with good information and knowledge at hand.

Thanks for sharing this.

Anonymous Anonymous said...

This post is like looking in the rear-view mirror at my own childhood. I was diagnosed in 1977 (I was six years old). Again, pre-internet, and much of what you describe was not educated in regard to celiac. I appreciate the spirit in which you are using to make your points. I think you have succeeded, in my opinion, of what you wanted the reader to come away with - that we've come a long way as celiacs in regard to education and practice. Thank you for such a well-written and honest post!

GFDougie, Author of blog.

Anonymous Pip Hunt said...

O man! I totally used to pull the cheese/toppings off of pizza and eat them before I understood cross-contamination. I'm also guilty of pulling the icing off of cakes and cupcakes during my early diagnosis. I recently went out to dinner with a new acquaintance. the waitress accidentally brought the pork belly to the able that was breaded and deep fried, this acquaintance suggested that I just cut the breading off and eat the insides and I just chuckled. At one point, I would have done just that, and wondered why my stomach was so upset for the following week. Thank God I now know better! Thank you for sharing!

Anonymous Gluten Dude said...

As much as I hate having celiac, I am indeed thankful I was diagnosed in my adult years when information (and food choices) are pretty easily accessible.

Listen, I would have done the exact same thing as you, even more so, if I was diagnosed thirty years ago.

That's too funny (in a sad way) about the Pepto.

Glad celiac has come a long way!

Blogger Wendy said...

I so get this - although I am still a relative newbie - it took me a few months or so and getting sick again to get the whole cross contamination thing. I laugh now when I have rad that Beano's contain wheat. These were an often staple in my diet for the last few years. Here I was trying like you to make myself feel better - yet was sticking more of the unbeknownest to be bad stuff in my mouth.

I am one year in and early on ate some pork - the inside of it - as we were not sure about the seasoning. I felt bad early on that evening. I decided then that eating over at a friend's house was going to require me bringing my own meal more often than not.

I also went to a Girls night out gathering recently - I was kind of excited that breakfast food was the meal of the night. Unfortunately, it was all breading of some sort - a quiche, muffins and even the fruit had cookies in it with a pudding. The hostess said she thought she had included some gfree items. I pointed out that the crust was not and she asked if I could just eat the filling. I loved that she tried, but even today those around us are not reading as we are and are not going to get the cross contamination thing. We have to be our own chefs and our own advocates.

Great blog post. And thank goodness for the internet! It literally has been a life saver for me.


Anonymous Anonymous said...

I wonder if eating the toppings off a pizza is okay if your just gluten intolerant or sensitive. I am self diagnosing myself because last week I had two days of eating huge bowls of pasta followed by raising bran and then blowing up like a balloon with horrible stomach cramps and nothing "moving" (if you know what I mean!). So I stayed away from gluten since then .... except for tonight when I ate the meat and cheese off a lasagna. Do you think that was okay if I'm just intolerant or sensitive? Ugh I just started feeling better.

Blogger Unknown said...

Anonymous, I would never eat the toppings off pizza today like I did many years ago. There is too much of a risk of cross contamination. Did you also eat the cheese? Maybe the dairy is affecting you too?

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