I found this article interesting regarding Tuesday’s National Celiac Disease Awareness Day….of course the headline was grabbing “Be Aware of Celiac Disease. Just Today Though.”

The first few sentences in the Dallas Observer article are jarring,

“The U.S. Senate has officially declared today National Celiac Disease Awareness Day. So, we all need to stop at some point and think about our annoying friends who can’t eat anything because … OK. OK. You’re not annoying. Your disease is annoying. And, honestly, we hate it for you.”

The article then offers a link to information on where to eat gluten free in the Dallas-Fort Worth area, mentions that 3 million people have celiac, and that there is no cure except for lifelong adherence to a gluten free diet.  The article ends with a quip, “So, whip up a batch of gluten-free brownies for your bestest celiac buddies and celebrate this day with them. Maybe even create a gluten-free macaroni-art card with a picture of a small intestine. If that doesn’t cheer them up, then nothing will.”

Okay….so I thought the article did what we all would intend for it to do — grab someone’s attention and then give them actual information.

It actually came from the point of view of the “friends” or outsider.  This frustration from the person who DOESN’T have celiac, has happened to me.  Sometimes I am more upset by the fact that her celiac never takes a break than SHE is (ie, her Home Ec class, or a surprise pizza party her teacher should have informed me of).

In this case,  it was the headline that made me say, “Why would anyone say such a thing?”  Then I clicked in and read further.  The attention-grabbing comments appear to be offensive to some.

One person said, “For anyone who makes fun of this, I hope your children get it. ”

Another said, “Did you not think how folks in the gluten free community would feel about this article? No one asks for Celiac Disease. Articles like this demonstrate people’s ignorance on having to eat gluten free and why Celiac Diaseas Awareness Day is needed – to try to teach people to be kind. ”

A third said, “this is a horrible article!! I suffer from Celiac Disease and I don’t sit in isolation, nor do my friends find me annoying!! This is a serious disease, with serious side effects. We reconize this disease DAILY not just one day! Your writing style comes across just ignorant! Try again ! ”

Most of those comments are accurate (well except for the first one), but clearly angry.

I came from a different perspective and had to comment– however I am sort of waiting for one of those angry comments to be directed toward me for saying it.    I felt my comment was informative and hopeful with a “kill them with kindness” attitude.  Here’s my comment in its entirety….was I wrong?

I understand what the writer is getting to here. That it’s a little

tongue-in-cheek– and it grabbed your attention. Plus, we did get a

little awareness out of it, of which we might normally not have gotten.

As a serious point, I will say celiac, is a tough disease that can do

serious damage to the body (cancer, infertility, liver disease &

more) unless you do this big lifestyle change which is the strict gluten

free diet.

However, if you’re going to have a disease or a life altering health

condition, this isn’t as dire as the writer suggests. Yes it can cramp

your style when dining out. But it doesn’t impede your regular mobility

such as Parkinson’s, it doesn’t affect your brain like Alzheimer’s, you

don’t have to take one ounce of medication — like Type 1 Diabetes,

Multiple Sclerosis, and Rheumatoid Arthritis, which are fellow

autoimmune diseases, and you’re not undergoing radiation or chemotherapy

from cancer (unless, perhaps, you have the aforementioned damage caused

by celiac). All of these diseases can have devastating outcomes.

Celiac, on the other hand, just needs the diet and dedication to living

gluten free. My daughter is a perfectly healthy 12 year old who plays

on an elite soccer team. She was diagnosed with celiac disease at 15

months old, and many people on her team have no idea she has celiac

(however they’ll learn much more after traveling to some upcoming

tournaments with her).

Thanks for spreading the awareness!

Amy Leger

Let me know what you think by commenting below or reading the article and commenting there.

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6 Responses to “Celiac Article Leads to Some Bitter Comments”

  1. When I read “So, we all need to stop at some point and think about our annoying friends who can

  2. I went to the blog, and read the whole thing. First, it’s a blog, not a news story, so it is pure opinion. Second, it was funny, unambiguously. We don’t hate you…we hate your disease: good line. Third, the blog writer gives solid information, which is always nice. Since my 5 year-old CD kid doesn’t read yet, I’ll say what he will one day say: Lighten up.

    We know how serious this disease is. If this blogger was spreading misinformation or denying the severity, I think the entire GF community would come down hard, but the tone was right and I will bet the article got a lot of hits, and there’s no such thing as too publicity. If one more person is aware of CD, then the joke worked.

  3. I also read the article with a sense of humor. There was good information shared, as well as acknowledgement that eating gluten free is a pain in the backside sometimes.

    I, too, often feel like a burden to the people around me. However, I find that as long as I make efforts to be otherwise low-maintenance, people are happy to work around my food needs. We just had a potluck at work. One person made cocoa pebble treats instead of rice krispie treats, and another willingly bought GF soy sauce for her chicken wings.

  4. Always seems everyone has to chime in on your allergy, or disease, I suffer from msg allergry, latex
    ( anaplaytic), and gluten intoler. Seems that uneducated people/ extended family seem to bethe most unkind to us dealing with this everyday. Most recently went into shock and went to hospital for reactio, almost died, and the host( mother in law) didn’t even call to see if I was okay, feeling the love… Not! I know what it feels like to feel like a burden, but if it’s your life, then let all others that don’t understand fall to the side and shame on them.
    Makes me wonder what ever happened..do unto others as you do…hmmppf ..frustrating

  5. My first reaction to getting “glutened”is neurological. I have extreme insomnia, mood swings, joint pain, brain fog, difficulty thinking among other wonderful things. My friends are unfailingly kind when they have a party or picnic, always making sure that I have something safe to eat. It is annoying to have someone write like this about us even if it was tongue in cheek. It’s not an easy diet to follow.

  6. I know that you should not let your disease define you, but in a world where food is at the heart of almost every activity and affair, being gluten free does define us. We are celiacs/gluten intoleratant’s and we cannot be separated form the disease. This disease does define us! When it is ridiculed, our (unchosen) way of life is ridiculed. This article was insensitive at best and elitist at worst.

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