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I'm a Marketing/Advertising pro with 15 years experience in retail, restaurant & cpg industries.  Celiac Disease saved my family and has inspired me to be a student of gluten, an advocate for awareness and eager to help businesses that serve our growing market to DO GLUTEN-FREE RIGHT!

Friday, May 24, 2013

where's the facts...

Straight talk tonight.

It overwhelmingly frustrating to advocate for a cause that doesn't have it's facts straight. 

Those of us who advocate for Celiac Disease have lots of facts, but everyone is using different facts.

Here's what I mean....

 

The # of people with Celiac Disease in the US is:

1 in 100 people
or
1 in 133 people
or
1 in 141 people
or
1% of the population
or
1.8 million people
or
2 million people
or
3 million people
or better yet...
according to Wikipedia "the condition is thought to affect between 1 in 1,750 and 1 in 105 people in the United States"

 

The % of people who have celiac disease but have not yet been diagnosed is:

95%
or
90%
or
85%
or
80%

And don't even get me started on the ancestry & demographic discussion.

Why are the facts so confusing and inconsistent? 
Should we care?
I think so. It is confusing enough to explain a complex disease such as Celiac without having inconsistent facts and figures to sort-of back us up. I hate to think this but it seems to highlight how unimportant knowing the facts and true diagnosis is to the medical community.

Celiac Disease is a life-altering disease with a food-based cure (if you catch it before it causes too much long-term damage) and somewhere between 80 and 95% of the people living with it don't know it. That should be an embarrassment in 2013.

Maybe we should pick one at random and make it the standard that everyone quotes.
Maybe we should raise a little hell with the research institutions.
Maybe we need to raise some money for a study.
Maybe the pharmaceuticals will do some research while developing their celiac drug. 
But I think maybe we'd have the most luck calling on the Consumer Packaged Goods Industry to take the lead. The food companies will be the greatest financial benefactors to an increase in diagnosis.

My rant for the night is complete.


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Thursday, May 23, 2013

What I've learned during Celiac Awareness Month

Today is May 23rd. The 23rd day of Celiac Awareness Month.

I was so pumped on May 1st, imagining real media coverage about Celiac Disease, intelligent discussions about the danger of gluten for some and awareness that actually improved the pathetic diagnosis numbers - 90% undiagnosed with any condition that can be screened with a blood test is absolutely unacceptable in today's day and age.

Well, as I reflect on the month,  I've learned a lot. Celiac/gluten-related issues have gotten some attention. Not the attention I imagined. Thanks to the Disney debacle, it's gotten attention (if you don't know what I'm referencing, see Gluten Dude who has covered every detail superbly).

Apparently, Celiac and gluten-issues are funny. It's a good joke. People who can't tolerate gluten are whiners. Complainers. Even douches.  Hmm.

Today I stumbled upon a mom on twitter. A smart mom, vocal & worried. She has a beautiful baby diagnosed with Failure To Thrive. At 8 months old, he hasn't grown out of his 0-3 months clothes. She's struggled with multiple miscarriages. Depression. Bipolar. She has another child on the Autism Spectrum. Her family has discussed trying gluten-free. But doctors, no - no mention of Celiac as a possibility. WHAT THE HELL?! I am in no way a medical expert, but when a young family exhibits a collection of medical issues that are all known to be related to Celiac and child's life is at risk - why has not one doctor suggested Celiac as a possibility? Why is it that she needs to hear from a stranger on twitter that she needs to push for a celiac test?  All I know is that that stranger (aka me) lived through the hell of watching my baby fading away while doctors were telling me to be patient, he had a virus and to follow up in a month, which was all WRONG.  Now, maybe celiac isn't the reason for her family's health issues but it most certainly should be considered as a possibility. I'm not laughing.

A mind-blowing before & after story was put together by Debbie Simpson of Adam's Gluten Free Surprise, this blog is a must read. The most startling part to me is the part that is always startling to me... years of suffering for adults before diagnosis, children diagnosed by parents before doctors. I'm still not laughing.

A $70 Million investment was made into Celiac Research this month. Research on causes? No. Research on improving diagnosis? No. Research on celiac connection to 300+ other illnesses? No. AbbVie & Alvine Pharmaceuticals are spending $70,000,000 on phase 2 research for a pill to make Celiac more convenient. Learn about it here. I haven't encountered one person living with Celiac who wants a pill, an antidote, they'd rather just have safe food. Would I buy a pet cobra just because there was anti-venom available at CVS? Not laughing.

Members of the celiac community have been very active this month! Great recipes, information blogs, cool videos, recaps of a huge celiac awareness event, good stuff. Really good stuff. The kind of stuff that has gotten me and my family through the difficult transition to a gluten-free celiac life this year. Inspiring. Empowering. Yet, I hate to say it... the only people paying attention and reading, listening and learning are those of us who already care because they are personally affected by Celiac Disease. The health experts, the news media, the people with power to reach the masses - they aren't listening. To the handful that are reading (Chelsea Handler perhaps) turns out, they are mocking (yes, another Gluten Dude reference)!  Not even a chuckle.

My mother is awesome. She's a super-gluten-addict who turned her home gluten-free. For me. She now eats her morning bakery roll in her car so that not one crumb will drop in her house because she wants my family to always feel welcome. She is very accepting. She's seen our hardships, she knows all of my stories, she's taken in my kids at 2am when the baby was sick & we would run him to the ER because I worried he was so dehydrated he may not see morning, she's seen me drop 30lbs and grow real finger nails for the first time in my life, she's seen my daughters bruises disappear, I could go on & on... she's lived through it all with me.   But she doesn't understand it. She can't understand it. She tries but it doesn't seem logical to her that suddenly, out of the blue, the bagel I always ate will now make me sick for days. She thinks I'm obsessed and worries that my kids will develop a fear of food.  Well, the truth is... yes I am obsessed and yes, I've realized that we should all be more than a little fearful of some of the food we eat.

Celiac is still new to me and my family. One year ago - hadn't a clue. We were a mess. Life was a mess. I knew we had problems but NEVER did I think it had something to do with pizza. Really?!  Since I'm a celiac-newbie, I'm still able to take a step back - look at the "situation" the way everyone else does. See it with my mom's kind but baffled eyes.

And yes.... it does seems ridiculous that moms (myself included) would complain to Disney because of a pancake joke.  It seems ridiculous that I can't eat an egg fried on the same grill as that pancake. It seems ridiculous that a cookie could land my son in the hospital for 3 days with an inflamed appendix.  It seems ridiculous that cross-contamination at a restaurant can cause my belly to swell up like a basketball within minutes and that a week later, my husband and my son are still in pain because of it. It seems ridiculous that my husband's issue with compulsive gambling disappeared along with his bipolar disorder, simply by eating food without gluten.
My challenge to others in the Celiac community it to take a step back and see it from the eyes of your former self.

This celiac disease is unlike any other disease. None of our symptoms are exactly the same. Most doctors do not recognize it and do not understand it. The celiac community is unbelievably active and supportive because those of us living with it are looking to each other for insight and answers.

It's so ridiculous, it's almost laughable.

But I can't laugh. The food choices I make for my family impact every aspect of our lives. And my children will have to grow up with the knowledge to handle this and to face bullying from people who are nothing but ignorant. 

But the good news is... they have a disease that is controlled by food, they will grow up, they will be healthy, they will be strong and they will not be suffering without a clue as to why. I wish I could say that for the countless others that aren't so lucky.

We have 8 days left in our Celiac Awareness Month. May doesn't have to end with Celiac being the joke of the month. I still have hope. And I could really use a good laugh.