It all begins today — 31 days of opportunities to get the word out about celiac disease during this, Celiac Disease Awareness Month.
What’s there to be aware about you say?
Celiac Symptoms: they run the gamut.
- From bad teeth to bad hair.
- From skin rashes to mouth sores.
- From underweight to overweight.
- From diarrhea to vomiting.
- From fatigue to brain fog.
- From malnourishment to organ dysfunction.
- From anemia to cancer.
Yup! Those ranges cover a lot! Many of these symptoms are not considered typical for celiac disease since many doctors only look at the GI symptoms. But they all should be considered.
Who has it? 1 in 133 Americans have celiac! And what’s so frustrating is that 97% remain undiagnosed and they continue to live their lives in ill health. That poor health only gets worse- in some cases causing of osteoporosis, infertility, and cancer.
What’s the big deal? If you need numbers….here’s good information from the National Foundation for Celiac Awareness: the financial burden of celiac disease for women is over $4,000 and for men it’s over $14,000. Or that it takes on average 6-10 years for a celiac diagnosis.
Imagine living a life where no one knows what is wrong with you and you’re getting sicker by the day? This is what happened to my daughter for months before her diagnosis — and it happens to countless others for years.
How awareness can help: The NFCA also reports that raising awareness could bring that 97% undiagnosis rate down to about 50% by 2019 — which means lower financial burden for patients and more importantly lower risk of celiac patients developing an even more debilitating and long-term disease.
Help Raise Awareness for Celiac Disease
Not that I consider Dr. Phil McGraw the best adviser and “quotemeister” ever… but this quote struck a chord with me while researching this article,
“Awareness without action is worthless.”
What can we do to raise awareness for celiac disease? Well, that depends on what you’re up for.
Easy & Low commitment:
- Donate money and/or attend a local celiac fundraiser. There are many going on around this time. Go to Celiacwalk.org for more information.
- Volunteer at a celiac-related event
- Donate gluten-free non-perishable items to your local food shelf
- Ask about gluten-free options at your local restaurant or order from a gluten-free menu.
Longer-term commitments:
- Start a support group
- Organize an education or awareness event on celiac disease
- Teach a class
In our home, we’re doing a combination of easy and longer term. My daughters are wearing their celiac shirts to school tomorrow and my oldest daughter just painted the Making Tracks for Celiacs footprints on my toes! I also am one of the main organizers of the Twin Cities’ celiac fundraiser walk/run and gluten free food expo on May 19th.
No matter how big or small …any kind of awareness you can offer to celiac disease would be fabulous!
Tags: awareness, celiac, gluten-free, volunteer
May 2nd, 2012 at 12:59 pm
Great advice! I attended one fund raiser last weekend, another this weekend, am going to the Celiac Awareness Night with the NY Mets on Friday, attending two support group meetings this month and I plan on eating out at lots of great gluten free restaurants all month long!