Adventures in Gluten (and Sugar) Freedom from a southern blogger chick!

Sunday, October 25, 2009

10 thoughts in honor of Celiac Awareness Month

I remember distinctly the first time I donned a pink ribbon in honor of Breast Cancer Awareness: October of 1992. I was a new professor at Northeast Louisiana University, and I went to the Southern Living Showcase in Monroe with a colleague. Someone gave me a pink ribbon, and I made a vow to wear it every day thoughout the month of October.

I remember having to explain it a lot -- this wasn't long after we first donned red ribbons in honor and memory of those with HIV/Aids. It didn't take long to add other colors to ribbons -- there's a whole site devoted to the ribbon colors!

All this brings me to the idea of Celiac Awareness Month, which ends at the end of this week. Of course, for those with celiac disease, the month ends, but the disease does not. And our constant struggle to keep our food gluten-free and cross-contamination free is a constant vigil.


Someone said last week that I sometimes come on a little too strong with my gluten-free issues. Good. I want people to know that it is a SERIOUS CONCERN for many people, and it cannot and should not be taken lightly.

I know I took the idea lightly until I realized what it meant.

But I gotta ask -- if this disease is believed to affect 1 in 133 people (I don't even know what the new number is) and gluten intolerance affects even more, HOW can we raise the awareness of this need in society to the level where it will no longer be looked at as merely a dietary choice, but a health and wellness necessity?

I have 10 thoughts:

1. When people ask you why you don't eat (pick your poison) buns, pasta, bread, etc., develop a talking point: I have celiac disease, and ingesting wheat destroys my intestines is a good one. No, you don't want to gross out your dinner companions, but Be FACTUAL.

2. When you hear about a gluten-free product/company/developer who is doing great things for our community, sing their praises in any way you can! People will sing the praises of a new Mocha Latte somewhere, so why can't we crow about a great soft gluten-free sandwich bread or a delicious battered fish? Honestly, these are products ANYONE in the family would like.

3. We must continue to try to raise awareness with mainstream producers that we appreciate their gluten-free products. I know my Christmas is going to feel a lot like Yules of Old this year because of one cereal producer. When they do good, let them know you noticed. When they fall short -- tell them so. For instance, the folks at Outback Steak House don't really like me much, because I never miss a chance to remind them they should be like the Outback on Crossville Road in Roswell, Georgia. I mean, if they can serve a gluten-free blooming onion, why WON'T YOU DO IT IN ALL STORES. (Yes, Julie, I did it again.)

4. And that said, we must not abandon our trusted gluten-free mainstream products. They're been here, struggling to establish themselves in our world. And we love them and should continue to support them.

5. For goodness sake, don't make light of the importance of celiac disease by dismissing it or dumbing it down -- we don't have a "wheat allergy," and it really IS NOT all right to try to arrange a gluten-free meal when we're expected to dine. I'm sorry if I seem like a zealot, but don't expect me to slink away and eat a salad (or fruit, or sliced veggies) while the rest of the folks are having chicken wings, or pizza, or a whole gourmet meal. I'm sorry, if your event serves food, and you expect me to attend, make sure I can eat without standing out.

6. That said, praise those who make your dining needs easier. We used to have a catering director at Georgia College who, once she found out I was gluten-free, ALWAYS made sure I had a delicious meal (or even snacks) available at gluten-filled events. I miss you, Linda Book.

7. We need a genuine Tipping Point in the gluten-free world, one that calls it like it is. This is not a fad. This is not for weight loss. This is no place to cheat. Why can't we have someone important say that with authority? I'm sorry, but I don't need celebrities being gluten-free for a fad or a cleanse or to get in a bikini.

8. The social media sites, like Twitter and Facebook, are a terrific source for support. So are sites like Delphi Celiac Forum and The Examiner sites (like this great one from my friend Jennifer D. Harris, JGF for short) have great information. Seek them out. Support them. While you're at it, if you've got a local support group, join it and support it. Here are two of my favorites: Middle Georgia GIG and the Atlanta Metro Celiacs. I'm smack dab in the middle of them and enjoy them both, though I rarely get to a meeting.

9. Love a gluten-free blogger. There's a list on the side of this blog of ones I frequent, all of them, like this blog, started because of a need for gluten-free information and a need to communicate about celiac disease and gluten intolerance. I don't blog for money (thought I do earn a small amount from BlogHer for its incredible sponsorship). I don't blog to get free stuff, though I do get samples from companies). I don't blog to be famous (goodness knows, I'm not famous). But I do this because I think every bit of new information shared is valuable, as long as it's factual. And I gotta say, i've made some tremendous friends in the gluten-free blogging world, and I've even gotten some new "adopted" gluten-free family members. Like Steve, And Kate. And Melanie. And JGF. And Ginger North. And Carrie. All their blogs are listed on my blog roll.

10. Finally, anyone up for a challenge this week? Spread the word. Can you wear light green on Thursday this week for Celiac Awareness Month? I am going to do it, and I hope you will too. Whether it's a green ribbon or a green shirt or tie, this is your chance to make a statement for Celiac Disease Awareness. And maybe you can help one person who's going through what YOU went through before your found the gluten-free diet.

Much love, and let's spread the word! And spread the gluten-free love!


Kris said...

I agree with most of what you've said here... but I have some very different views than you about #5. As someone with a wheat allergy, and not celiac, my experience is that more people know about celiac than wheat allergy. If I'm explaining my dietary restrictions to someone who is going to prepare my food or serve it to me, I really don't care how they wrap their brain around it - just that they do. I often find that when I explain that I have a life-threatening wheat allergy, I get servers who respond "oh, like Celiac?" Sure, whatever, just make sure you wash your hands and don't use soy sauce, ok? I focus on educating about food handling - as long as they get that it is critically important, well, that's what matters to me - not that they understand the ins and outs of how it will affect my body (anaphylaxis, btw).
I also don't mind arranging special meals, or eating a plain salad while everyone else noshes on pizza - I am choosing to attend the event, and my dietary restrictions and how I handle them are my own business. I don't expect someone to change their whole menu because I am attending and I don't want to stand out. I'll stand out or blend in as I choose.
Ok, and I really need to find my way to that Outback in Roswell, because GF blooming onion???? I might just die of happy. :)

Ginger Carter Miller, Ph.D. said...

Kris makes a point that I want to follow up on in this comment.

If you have a wheat allergy, you should DEFINATELY tell someone in those terms. That has different outcomes, and you should say that if it's true.

I said it to someone once and they were worried I'd die of anaphylaxis if I got a morsel of wheat. While I do want them to be careful, for me, they shouldn't be alarmist. For you, they definitely should be that careful.

Betsy said...

Thanks for your comments, Ginger! I agree that there's definitely a tipping point with celiac awareness and we can reach it. Cheers!

marylandceliac said...

This is a truly fantastic post and very well-said! Keep up the great gluten-free work! I think and hope that soon we will see clear celiac awareness progress from our efforts, but I wonder if we will ever get away from celiac being called a gluten allergy!