Get The Facts Jack - Celiac Disease Needs More Awareness Than Ever!

As you have probably already heard, May is Nationally recognized as
Celiac Disease Awareness Month.
If you haven't heard yet, where have you been hiding?! Or are you someone who is sick of hearing so much about Celiac? Perhaps you think there are tons more gluten free options and these people are ridiculously whining? I mean, you see it everywhere don't you? Dr Oz, the grocery store tags, the big labels on foods...

Well here are some facts from the other side of the fence where the grass is not yet greener.

May is National Celiac Awareness Month

Our communities have rallied behind making May the month to feature everything gluten free to help out our Celiac and gluten free neighbors. But, it is very evident that we still are far from raising enough awareness. Every day I meet people who have heard of celiac disease yet have no clue as to what that is. They may have seen gluten free labels, but think it is a diet fad. And yet, on the flip side, a whole lot more people know than did when our daughter was diagnosed.

But diagnosis rates are on a crawl compared to the options exploding on the marketplace.

Celiac Disease is thought to affect 1 in 133 people and yet it is still being misdiagnosed due to difficulty of diagnosis through physicians who treat symptoms systematically in lieu of testing further. 
85% are still undiagnosed.

I cannot count the many multitudes of people I have met across this nation who have sought diagnosis for 7-14 years or more! It is a staggering reality when you speak to people who are just so wonderfully glad to be alive. But the reality is that our celiac children have it the best overall because they have incurred damage that can be rectified. Some people will never recover fully from the damage that waiting for a proper diagnosis will leave in its wake.

The FDA has been trying to make the final ruling and enact the Gluten Free Food Labeling Law holding the standard at 20 ppm. This is actually low gluten, not completely gluten free, but better than before. 

In running events for R.O.C.K. Charlotte and other events across the country, I have also encountered still far too many people who have bypassed awareness for simply thinking celiacs have enough gluten free options now. They do not correlate the medical necessities that are still at epidemic proportions for our nation relating to celiac disease. This is sadly in part due to the majority of people hearing about celebrities who are coming to the forefront with dietary change for weight loss.

They have made it way more difficult than before to trust the onslaught of products which may not truly be safe because of the FDA not regulating fully in making all food meet a standard.

Celiac Disease will shorten your life if not treated with a gluten free lifestyle.

Every day, we are reading more evidence to support physical and neurological effects to life shortening effects that may occur with long term damage to the body. This long term damage is usually the result of misdiagnosis by a medical professional who was poorly educated on the disease and related illnesses or has taken the stance that someone who complains is more than likely a patient in need of psychiatric care.

A 2010 study in the journal Annals of Allergy, Asthma & Immunology said that 35% of kids over age 5 with food allergies have endured bullying, teasing or harassment. Parents of children with food allergies reported in the study that these incidents -- both physical and verbal -- happened because of food allergies.

Celiac Disease makes our children easier targets for bullying and some studies have even said this number is higher like 50%! It doesn't help in the slightest that media personifies celiac disease as irritating and funny, as in this article by Gluten Dude about the Disney sitcom that made fun of a child for having Celiac Disease

Celiac is a Disease not a Diet

Below are a list of advocates that I strongly suggest you follow during this month's awareness:
Gluten Dude A no non-sense adult's perspective of living with celiac disease
Gluten Away Impressive blog by a 16 year old living with celiac disease
I'm A Celiac Informative and up to date news, recipes, and lifestyle
Jules Shepard Advocate, Author, baker extraordinaire, and founder of Jules Gluten Free
Leah McGrath RD Ingles Markets Dietitian and advocate for options in their stores also works closely with support groups to support the community

There are of course scientifically based resources which can be accessed for research facts, fundraisers, and awareness which are listed below:

Get the Facts Jack!

No comments:

Post a Comment

*Information on our site and shared by members of our support forums is not intended to be medical advice or to replace the relationship between a patient and his/her physician*