I’ve ranted. I’ve raved. I’ve spewed.
I’ve pleaded. I’ve begged.
My bag of tricks is almost empty and instead of things getting better, they have actually gotten worse.
Celiac disease is a f*cking joke.
Not to me and you of course.
But we’re sane. We’re rational. We live with this crappy disease and we will continue to live with it every single day until our time is up. And I can deal with it. I hate it, but it is what it is and things could always be worse.
But yesterday a number of things happened that has just thrown me over the edge. We are not making progress folks. How is this happening?
Story #1: An investor approached Jennifer Esposito recently to help get her bakery products to the masses. Great, right? But he tells her that if she attaches celiac disease to her product, it will tarnish the brand. The focus needs to be on beauty and health conscious people and if she wants to tie herself with celiac disease, she won’t succeed and will be poor.
Unreal. Jennifer is saddened to the core and told me she would shut the brand down and burn all her recipes before selling herself out. She is working so hard for people who NEED this food.
Does anybody still want to question her devotion to the cause and whether she is a good advocate for her fellow celiacs (as some people have)?
Story #2: My good friend InspiredRD continues to struggle with her celiac disease. She posted the following on Twitter yesterday:
Me: “I need to look up the prescription to make sure it’s #glutenfree.”
Doc: “I’m sure it’s probably fine.”
Me: “No I need to look it up.”
Doc: “Oh celiac disease. You can’t eat what again?”
Story #3: I get samples sent to me frequently by companies looking to promote their gluten free products. A few weeks ago, I was sent some tea and coffee. Since I ran out of my regular coffee, I decided to make a cup of their coffee. I assumed it was just coffee with no added ingredients. But when I checked the ingredients, there is was: Organic Barley.
Now the company’s website claims that it has been tested and falls below the 20ppm when used with boiling water. But it also states that some people with celiac disease have had a reaction to it.
Here is my question: Why the hell are you promoting it as gluten free when it’s got barley and it’s potentially not safe for celiacs?
Oh wait…don’t tell me. $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$
Story #4: Yesterday’s blog post was about a 19 year old woman (Mary) whose parents refuse to take her celiac disease seriously. The story itself was disturbing enough. But then Mary emailed me yesterday and said this:
“My older sister was diagnosed with lupus a few years ago so autoimmune diseases are clearly in my family. For some reason my parents understand my sisters illness but not mine.”
And that my friends is celiac disease in a nutshell; the Cinderella of autoimmune diseases.
Why? Because we’re letting it happen.
We’re flocking to the stores and buying the crappy, processed gluten-free food. Because we NEED to have bread still. We NEED to have muffins still. We NEED to have pizza still.
And because we keep buying it and there is money to be made, the vultures will come out and promote the “gluten free lifestyle” until a new fad comes along that they can profit from. And as long as the gluten-free fad is alive and kicking, celiac disease will never get the respect it needs.
So I don’t want you to open your window and scream that you’re mad as hell.
I don’t want you to stop buying the packaged gluten free food for good. We all need our treats and we all deserve to feel normal once in awhile.
But I’m begging you…please be the best advocates you can be. Get angry. Rise up. Make your voices heard.
It’s Celiac Awareness Month and 9 out of 10 tweets on my Twitter feed are people trying to sell me their food. But they hashtag it with #celiacawareness.
That’s not awareness folks.
Awareness is opening people’s eyes. Not emptying their pockets.
Thanks for listening.