We are a few days into October, which is Celiac Disease Awareness month. But both Congress and the Food and Drug Administration do not seem to be aware that we're now more than two years past a deadline for important legislation that would benefit everyone with celiac disease.
Congress directed the FDA to define exactly what "gluten free" on a label means by August 2008 when it passed the Food Allergen Labeling and Consumer Protection Act. The FDA has come up with a proposal, but the proposal has been in limbo for far too long.
I attended a Celiac conference in Delaware last weekend where many people, both those who just found out they have celiac disease and those who have been on the gluten-free diet for a long time, had questions about confusing labels. Their lives would be much simpler if the gluten-free label clearly meant one thing.
That's not the case now.
Currently the only law that governs use of the "gluten free" on a package is a general requirement that a label be truthful and not misleading.
The proposed definition is much more specific, spelling out that: wheat, barley and rye can not be used outright in a food labeled gluten; ingredients made from those three grains can only be used if they are processed to remove the gluten protein; all gluten-free food must test to less than 20 parts per million of gluten; and only specially grown gluten-free oats can be used.
When I contacted the FDA recently to find out if there is anything new to report on the gluten-free definition, I got a very short answer. No updates.
So it seems like nothing is going to happen on this for a very long time unless the gluten-free community organizes a push to make something happen.
The American Celiac Disease Alliance, an advocacy group made up of celiac disease support groups, gluten-free businesses, medical centers and professionals, seems the logical leader of an organized effort to get the attention of both the FDA and Congress.
You can join the effort by going to the ACDA website and sending emails to your US Senators and House Representative. Then send another directly to the FDA. Forms on the site make this very easy to do.
I know there are enough gluten-free consumers out there to make their voices heard. On facebook and twitter, some gluten-free sites have 10,000 to nearly 30,000 followers. Just think how loud a group this large and with so much at stake could be. I can't think of a better, more productive way to mark Celiac Awareness month.
With a unified effort, we can make Congress and the FDA aware of how important a defined gluten-free label is.