But it's Gluten Free!

I hate the term Gluten Free.

Why? Because it's incorrect. In fact, Gluten Free is simply legalese. It doesn't mean 'no gluten.' It means less than a certain amount of gluten. And that 'certain amount' is whatever our country wants it to be...once the USA makes up its mind. The term should really be 'really low gluten' products rather than 'gluten free.'

I've mentioned this before, but it's been frustrating me a bit more lately, what with trying to discover the gluten levels of all our foods, now that we need to know. Because if my daughter reacts to above 10 ppm of gluten, then many 'gluten free' foods are no good for us. But most people who aren't celiacs - and many who are - believe that gluten free MEANS 'free from all gluten.'

So I cannot tell you how many times I've called up a company and had a version of the following conversation:

Me: I was hoping you could tell me what level of gluten you test for in your gluten free products.

Employee (in a slow, what-kind-of-idiot-are-you, voice): Our gluten free products are gluten free.

Me: Yes, I'm aware of that, but I needed to know what parts per million of gluten they contain because we have a child who is more sensitive than the average celiac.

Employee: They don't have any gluten. They're gluten free. They're made with no gluten ingredients.

Me: I'm glad to hear that. I'm sure they meet the legal gluten free standard of less than 20 ppm. But do you test your products for their gluten content?

Employee: They don't have any gluten. They're gluten free.

It typically doesn't get any better, because the only way to get past this is to actually give them a lesson in 'gluten free' really means and that's just not all that productive. Or polite, LOL.

What really bothers me about the term 'Gluten Free' however is when there are doctors who don't really know what it means, either. I've read so many accounts of people who were only buying gluten free products and were still sick. But when they spoke to their doctors, many of them were accused of cheating on their diets. Or they were assumed to have refractory celiac disease that simply doesn't heal. And it turned out that these people were simply consuming more gluten than their bodies could handle.

While knowing that their patient is on a 'really low gluten' diet might prompt some doctors to think about whether you might be getting too much gluten, a gluten free diet doesn't seem to have the same effect for many of them. Because a 'gluten free' diet doesn't have gluten. Right?

Wrong.

You would be stunned by the number of places gluten can worm its way into our food sources. For most of us, this isn't a problem. While celiacs have differing levels of sensitivity to gluten, many celiacs don't seem to react to super-low levels of gluten. Most of us do just fine with gluten free products. However, anecdotally, a small minority of celiacs have reported reactions to 5 ppm of gluten or less. Reactions have included the DH rash, which is a reaction that would be hard to contribute to something other than gluten.

As a result, if you are a celiac and you believe you have had a gluten reaction to something, don't dismiss it simply because the product has very little gluten. Do a little research, try it again under controlled conditions if you feel up to it, get a gluten home test kit and check how much it has for yourself. But if anyone tells you that you couldn't have reacted because the product is 'gluten free?'

They're wrong.

Here's some of the wacky, crazy places that gluten can be found in a gluten free diet (wbro stands for wheat, barley, rye and oats):

1. In your grains. Grains are often grown in the same or adjacent fields as wbro, shipped in the same trucks that shipped wbro, milled on the same mills, processed on the same lines or in the same rooms. That gives a lot of opportunity for cross contamination. So if a 'gluten free' grain or flour that you eat hasn't been tested for gluten, you have no idea how much gluten is in it.
2. In your beans, nuts, and seeds. Again, these are often grown in the same or adjacent fields as wbro, especially beans like soy beans, that are often grown as a rotation crop with wheat in the exact same field. They have the same issues with processing, as well, so they can be easily contaminated. So if you get sick and, say, nuts are all you ate? Don't discount it as a gluten cc source.
3. In your fruits and veggies. A number of pesticides, fertilizers, and coatings have gluten as a binder. It's little enough that if you had, say, one apple with a coating (that helps keep it from rotting as quickly), you might be okay, but if you had 2 or 3, it might be enough to make you sick. Mulch can also be made of straw from wheat, oats, etc... and will come into contact with veggies and fruits that grow lower to the ground. Since wbro aren't chemicals, they can still be used in organic products as well as traditionally farmed produce.
4. In your dairy products. They have shown minute amounts of gluten comes through breastmilk in humans, so nursing moms are advised to stay away from gluten when they nurse babies with celiac disease. Cow's milk...it's still breastmilk, just not human's. So if cows are fed oats, rye, barley, etc... in their feed, guess what can come through in the milk? And following that, anything made from the milk such as cheese or cream.
5. In your gluten free products. Because again, these aren't free from gluten, they are just 'really low gluten.'

To say again - this isn't an issue for most celiacs. Most of us are okay. But sometimes, we get more sensitive to gluten the longer we stay away from it. Previously safe products don't make us feel so good after a while. Or maybe we never seemed to heal all the way, we still get muscle aches, we still get stomach pains.

And if that's you? You might want to start checking things out in your gluten free world and see if your 'really low gluten' is not quite low enough for what your body needs. :-)