I got an email the other day from a reader who questioned whether some of us really are "super-sensitive" and react to trace gluten in some foods, even those foods labeled or certified gluten-free. Many or most of our perceived reactions could be psychosomatic, this writer said.
The reader also questioned whether I was perhaps doing a disservice to the celiac/gluten intolerant community by suggesting that some of us can't tolerate 20 parts per million or even 10 parts per million of gluten. Options are limited enough as it is, the argument went, and I shouldn't make it more difficult for people.
I'm sorry, but I don't agree that providing information on PPMs below 20ppm (the current proposed FDA standard) or even 10ppm (the level to which many manufacturers are testing) is misleading. I hear all the time from readers who are grateful to me for pointing out that their "gluten-free" foods may still contain some gluten and may be causing them symptoms. In many cases, they eliminate those products (usually grain products, but not always) and finally feel better.
Accusing those of us with very real symptoms from those minute amounts of gluten of being "psychosomatic" doesn't help at all. But unfortunately, the "it's all in your head" theme ("If I don't react to it, then you must be imagining your own reaction") seems fairly prevalent in some parts of the celiac/gluten intolerant world.
Of course, I get my back up when people say things like this. I didn't expect to have problems with so many "gluten-free"-labeled foods, but I had them anyway, and found that I needed to remove most of them in order to finally heal.
Of course, we all know it's quite possible to psych yourself into gut symptoms -- ever hear the term "nervous stomach"? But many of us who react to gluten have a series of symptoms that occurs every time. In my case, those symptoms include dermatitis herpetiformis -- which I'd be surprised if I could psych myself into (it's possible, but I'd have to see a study on it to believe it).
I also don't think you're psyching yourself into symptoms if you're not expecting them in the first place. Yes, some symptoms could represent another problem (the stomach flu, something you ate, etc. etc.). But getting the exact same constellation of symptoms time and time again when you eat a particular food tends to indicate gluten exposure -- especially if it's the identical set of symptoms you get with known gluten exposure.
When I first was diagnosed and went gluten-free, I happily ate all sorts of foods, especially gluten-free grain products. Because of the mantra that "gluten-free means 100% safe," it took me several years to figure out why I wasn't healing and still felt terrible -- after all, I was eating "gluten-free," right?
Of course, labeling has come a long way since then (I started in late 2003), but the assumption has stayed the same: if it's labeled gluten-free, or there's no gluten in the ingredients, it's got to be safe. If you react, you're reacting to something else. But that's just not true: gluten-free doesn't mean "absolutely no gluten," and foods that appear gluten-free by ingredients list still can contain some gluten from facility cross contamination.
The word from many of the leaders in the celiac community is that "most" can tolerate 20ppm in foods eaten every day. But researchers also acknowledge that sensitivity represents a spectrum, and some of us (sadly for us!) are found on the very sensitive end of that spectrum.
Personally, I think it's likely that many or most of us can tolerate 10ppm of gluten in the foods we eat, as the studies seem to indicate. However, there's a significant minority who cannot eat even those foods without symptoms (whether or not we get actual physical damage from them). Could these very low levels of gluten in "gluten-free" foods be the reason why so many celiacs don't heal, even five years after adopting the gluten-free diet? Perhaps, but plenty more research is needed.
In the meantime, rather than telling those of us who are super-sensitive that "it's all in your head" (didn't we get enough of that from our doctors as we looked for a diagnosis?), wouldn't it be better for the celiac community to embrace the concept that we're all different, and some of us may react to far lower levels of gluten than others? That's certainly a vision I can embrace.