Why I'm gluten-free, part 2, and information re: celiac and non-celiac gluten intolerance

I mentioned yesterday that I do not suffer from celiac disease, but from non-celiac gluten intolerance. I wanted to clarify a couple of things.  First, I want to apologize if I seemed a bit flippant about all of it yesterday. I did not give the attention deserved to the long-reaching effects of gluten on many people's symptoms--only mentioning briefly the long-term risks of eating gluten with celiac disease.  So here's the deal.  For those of you who aren't aware of the specifics of celiac, please click here for some basic, but good information from the NIH. Celiac is a specific form of gluten intolerance that affects the small intestine,

and interferes with absorption of nutrients from food. People who have celiac disease cannot tolerate gluten, a protein in wheat, rye, and barley. Gluten is found mainly in foods but may also be found in everyday products such as medicines, vitamins, and lip balms. When people with celiac disease eat foods or use products containing gluten, their immune system responds by damaging or destroying villi—the tiny, fingerlike protrusions lining the small intestine. Villi normally allow nutrients from food to be absorbed through the walls of the small intestine into the bloodstream. Without healthy villi, a person becomes malnourished, no matter how much food one eats.

That's the short answer to what celiac disease is. An estimated 1 in 133 people suffer from celiac disease, and countless more from other forms of gluten intolerance.  A good family friend was diagnosed several years ago with severe osteoporosis, and later celiac disease.  The bone loss was caused by complications of untreated celiac. This stuff is no joke.  For more detailed information, please visit the Celiac Disease Foundation.

With regards to other forms of gluten-intolerance, here's a handy chart via 1in133.org.  The numbers are sobering. An estimated 3 million Americans suffer from celiac, but a whopping 18 million are presumed to have another form of gluten intolerance. That's roughly six times the number of celiacs.  And most of these people are as of yet undiagnosed.  There are yet more people who suffer from conditions like Crohn's disease, IBS, IBD, rheumatoid arthritis, and lupus who have been advised to cut gluten out of their lives.  (The research is still out with regards to the effectiveness of a gluten-free diet on many of these conditions--including autism--but the possibility is strong that at least some of these patient do benefit from going GF.)  So while celiac is a major health issue--worldwide, even--there are many, many more people who have reason to avoid gluten.  The article I linked to yesterday from the Wall Street Journal is a good reference for celiac v. non-celiac gluten intolerance.

Now, here's the thing.  Even though I do not have celiac and could have done without the endoscopy (and month of eating gluten leading up to it, which, frankly, was hellacious), I encourage everyone suffering any of the symptoms of celiac disease to get tested fully.  You may know you're gluten-intolerant already and just not want to go through the testing, and that's your choice. But, celiac has genetic links. If you have it, or even may have it, there are implications for your parents, siblings, and children. They, too, will need testing. This is so important, folks.  I truly believe testing for gluten-intolerance and celiac disease should be routine with the numbers of people it affects. I got tested so that I'd know whether my children and sisters would need testing. My sisters are in their 20s and have long, full lives ahead of them. I didn't want to keep them from a possible diagnosis just because I didn't care enough to get tested.  My kids are four- and two-years-old. Same deal. They have food intolerances already--I didn't want to risk hurting them because of my inaction.

We may find someday that all gluten-intolerance is genetic. There's just not enough research out there yet.  Which is why we have Celiac Awareness Month. It's for celiacs, yes, but also for everyone suffering from related conditions stemming from gluten becoming a toxic substance to the system. Research into celiac disease is by no means complete, folks. And yet it is a serious public health issue right now.  Yet, so many people do not take it seriously.  Some restaurants can't be bothered to take precautions for celiacs as they would for people with severe food allergies.  Many, many food processors do not take care to segregate processing facilities or test for gluten in their products.  There are no regulations for cross-contamination. (Hence, the 1 in 133 campaign. The link is above. GO SIGN.) Until people take gluten-intolerance seriously, people will continue to get sick from careless food preparation--and simply because they do not know. Education is important. Very, very important.

Please check out yesterday's post for an educational giveaway. The book Healthier Without Wheat deals with all forms of gluten sensitivity--classic allergies, celiac disease, and non-celiac gluten intolerance.