Why Celiac Awareness Matters

help-a-celiac

To summarize the end of Celiac Awareness Month (the good, the bad, the ugly – and as always, there was all three), I was going to write a poem. Why?

  1. I like writing poems.
  2. I wrote one to summarize CAW a few years back and thought it would be a good idea again.
  3. I need to give my creative juices a kick in the ass a bit.
  4. It’s really none of your business.
  5. Just kidding.

But when I checked my email this morning, I received an email that to me summarizes what celiac awareness is all about; and how we can make a difference where it’s least expected. Here’s the email (and no it’s not to pat myself on the back…shame on you.)

Hey Gluten Dude…you are amazingly good looking!

Ok…that’s not what it said. Here you go:

Hey Gluten Dude!! 

I just wanted to thank you for the perspective this blog offers. I have been told I “probably” have celiac but I am still awaiting the results of my endoscopy. I found your blog researching my (potential) diagnosis.

Regardless of the result, this blog has given me perspective on something very close to home: my younger sister was allergic to EVERYTHING before she became a vegan, and that includes the sun. My parents did everything they could when we were growing up to make sure she had special cakes and ice creams so she wouldn’t feel left out at birthday parties. She’s a very quiet person and until I read all the things the celiac community was saying on your blog, I never understood the social isolation she probably felt all those years when we could jump in the pool and she had to stand under an umbrella.

People have given her a lot of crap about becoming vegan, but it’s saved her life. She doesn’t get eczema, she can go out in the sun without a golf umbrella, and she doesn’t miss out on family time from being sick.

So….thank you. Whether I end up having celiac disease or not I’m so thankful I found your blog because it helped me connect with and support my sister in a way I couldn’t before.

One final note – I overheard the youth pastor at church last week saying that he told a kid’s mom he couldn’t go on the church annual retreat because the kid had too many dietary requirements. I felt horrible for that kid, and after discovering your blog I realized I need to start a program at church specifically for people that need dietary accommodations during church events.

Thanks for sharing, curating other people’s stories, and inspiring us to help others!

How. Awesome. Is. That.

So I ask you to open your eyes, open your ears and open your mouths. We don’t need to shout CELIAC from the rooftops…and since I live on the 25th floor, no one would hear me anyway…but if someone asks you about your disease, use that opportunity to educate, even just a little bit. Every little bit can and will make a difference.

Many thanks to all of you. I love this community.

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2 thoughts on “Why Celiac Awareness Matters”

  1. they-told-me-I-was-fine

    What I want people to be most aware of about celiac is that the health care community does not take it seriously as a whole and to my knowledge still does not suspect it or inform the public about it. The health care community seems to think this is the job of the public to know if celiac is in their family history and what the symptoms are. The public thinks the health care community has basic health things covered and will either just somehow know or doesn’t have a clue about it. I believe if someone knows about celiac it is because they or someone they know has it.

    I was in and out of doctors offices all during my childhood and early adult life and not once was diet ever mentioned. My nails and hair were not looked at. My low weight and late puberty were not suspect. My constant health complaints and failure to thrive were dismissed. Yet quite a bit is known about it in health literature. I don’t see a point in knowledge about it if they don’t inform the public or are diligent in suspecting it. It’s disconcerting how much is known about how the body deteriorates when it is not diagnosed. They say you will have a history of it in your family. Well, the likelyhood ancestors were diagnosed in the past is even lower than diagnosis is today I suspect.

    When the doctors gave me a clean bill of health when I was a child, I was not allowed to discuss my lack of weight or inability to do the minimum calisthenic requirement because the doctors said all was ok. The pe teachers never talked to my parents. Nobody said anything. They just let me suffer.

    I think it’s gluten in the gut that makes people not care about people with celiac. I think it’s a gut reaction. They didn’t care about me and they still don’t.

    I’ve been healing up for about 4 years now. I can’t help but see myself in the homeless. I’m fortunate and have received help and acceptance from my family (interestingly acceptance seems to be better without gluten though). I wouldn’t doubt if the vast majority of homeless have celiac. Everyone I’ve ever known seems to have at least one person in their family that can’t put their life together. Suspect celiac. Do a gluten free challenge. See if your life improves… What I want people to know most about celiac is that you are on your own. There is absolutely no one looking out for you and absolutely no one has your back.

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Who I am. And who I'm not.

Who I am. And who I'm not.

I AM someone who's been gluten-free since 2007 due to a diagnosis of severe celiac disease. I'm someone who can steer you in the right direction when it comes to going gluten-free. And I'm someone who will always give you the naked truth about going gluten free.

I AM NOT someone who embraces this gluten-free craziness. I didn’t find freedom, a better life or any of that other crap when I got diagnosed. With all due respect to Hunter S. Thompson, I found fear and loathing of an unknown world. But if I can share my wisdom, tell my stories and make the transition easier on you, I’ve done my job.

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