One thing I wonder about periodically, as a Celiac, is how easy is it, exactly, to get cross contaminated by gluten? Where does it pop up in our food? How hard is this stuff to clean off in our houses? How easy is it to spread from touch?
Some people will pick a cruton off their salad and assume it's safe. Some people won't touch anything that's even been processed in the same room as wheat (raises hand.). But...how careful do we really need to be? I am on a quest to find out, and I'll keep you all updated as I go. To start off, though, here's a little information for the Celiac just starting out.
In the Beginning, there was wheat, and boy do we miss it.
For anyone who is new to the disease, there's a lot to think about. You hear that you have to avoid gluten, and at first, that doesn't seem so bad. Oh, wait, sorry, was I supposed to be telling the truth in this blog? Let me rephrase this then.
At first, it feels like someone just knocked the bottom out of your happy little eating world, stomped on the pieces and then laughed at you while you had to give a speech in front of the school, naked. Loss and frustration and confusion and, when the wrong sort of digestive moment hits, embarrassment and upset. Sounds about right.
After all, it means no more cakes, cookies, bread, dumplings, fried foods, brownies, crackers (that's the first thought, yes?). It sucks. It DOES seem bad. But it doesn't seem hard to avoid, that's more to the point. Really, how much could gluten actually BE in?
We all find out pretty quick that the answer is: nearly anything. It's not as prevalent as corn, to give corn allergy sufferers their props, but gluten is in foods that, to our minds, it shouldn't be. Sausage? Oh, that can have gluten. And chips. And luncheon meat. And broth, candy, fast food, salad dressings, drinks, the list is nearly endless. So we learn our first lesson, and life gets a little crazy for a while as we try to learn the rest.
Lesson 1: Read all Labels -
Learn the ingredients that ARE gluten or are made from gluten and still have some of that nasty stuff left in it (a good ingredients-to-avoid-list is here.). Then read your little heart out every time you buy something. And don't forget to read the labels again the next time you buy the same products, because those sneaky little companies can change their ingredients and suppliers without even consulting us. Terribly unfair, I know, but there you go. We only get to control our own kitchens. Darn.
Lesson 2: Cross-Contamination -
(or Don't Trust the Labels you just spent all that !#*$& time Reading)
Again, this seems even more unfair than changing ingredients, but cross-contamination is the bane of all Celiacs. It's happened to many of us in the 'early days.' You find a food with no gluten ingredients, you clap your hands gleefully and beams of light surround you on your way to the cash register to purchase the food that only took you enough label reading to have earned you a PhD in Ingredient Law School. You get home, you eat it, and WHAM - sick as a dog, cursing the food to the depths of the pit. A quick Google search finds other Celiacs with the same problem because, lucky you, your 'gluten free' food happens to be processed right next to some wheat-heavy mixer that poofs wheat flour into the air 24/7 and spreads it all over your nice, previously gluten free yummy and every other food processed in the same room.
Cross-contamination - it's not just a bad day in the CDC Hibola lab anymore.
So every label that you examined for gluten ingredients still requires a call or an email or a quick check on-line to make sure that it doesn't have hidden sources of gluten where it's processed, or on its machines, or where it's mixed. Except for, of course, the Holy Grail of labels: the Gluten Free Label. Those you can trust to be Gluten Free and go right ahead and eat them. Right?
Let me pause while I wipe the tears of laughter from my eyes. Gimme a sec.
Lesson 3: Gluten Free does not mean 'Gluten Free' -
[Edited to reflect current information]
Currently, the FDA, which regulates most of the food labeling in the United States, has no legal definition of what it means for a food to be labeled 'Gluten Free.'* And what does that mean for us? It means that you can't completely trust a gluten free label. Most companies selling their products in the US aim for 20ppm (parts per million) or less. However, they can pick whatever amount of gluten they want to as their definition for 'Gluten Free.' Although they'd face legal repercussions if they, say, sold normal wheat bread under a Gluten free label.
Sucks to be us, huh?
And just to make it more confusing? Anything from Europe that you might get at, say, an import store has to contain 20ppm of gluten or less to carry a gluten free label. However, their old standard used to be 200ppm of gluten or less, and compliance with the new 20ppm standard isn't required until 2012, so you may still find gluten free European products with higher levels of gluten.
On top of that, there's gluten free beer, which in the USA is regulated by the Bureau of Alcohol, Tobacco, and Firearms, not the FDA. Thankfully, as of last August, they made a ruling that gluten free alcohol has to conform to FDA standards in what it will take to be gluten free. And trust me, as a layman? That was confusing as heck to read about, as many of the GF beer aficionados began talking about how they know now what the standard is: 20 ppm.
I thought for a while that this meant the standard had been decided on, but turns out it was wishful thinking. Still no definition.
And even if there WAS a definition and it was 20ppm? Some Celiacs, including yours truly, seem to react to less gluten than 20ppm, so many GF foods will lay us out flat. So my thoughts on the GF label are this: protect yourself, trust yourself, and remember Lesson 1, when you had that big list of ingredients of what to avoid. Some people, and companies, might have more gluten than expected, they might simply make a mistake about what contains too much gluten, but either way, it will affect YOU, not them.
And some people are, let's be honest, idiots, and you've gotta have more information than they do, so you can know when they are spouting off about something they know nothing about. Like those who claim that ancient strains of wheat will not hurt Celiacs, because the grains are lower in gluten, or their gluten is different, or their gluten is so ancient it's too tired to bother you anymore and is just gonna sit on your couch and watch soap operas for a few days, instead. These strains of wheat may be easier for the gluten intolerant, and a very few people who have wheat allergies seem to be able to try a few of these varieties, but Celiacs? Ancient wheat will still kick our butts.
Curiously, when this ancient wheat was still NEW wheat, in ancient Rome, is when we have some of the first recorded cases of what we now call Celiac Disease. So, yeah, I'm thinking that ancient wheat is still plenty spry enough to be a problem. Grrr. And let us not forget what I blogged about recently, that many naturally gluten free grains seem to be contaminated with gluten, too.
* The other agency that controls labeling is the USDA, which is in charge of labeling things like meat and poultry.
So, what's a Celiac to do to get through all this?
Stay current and stay careful.
(And relax, once you've figured this all out.)
1. Find a good Celiac site with the latest research and news about Celiac disease, foods, and gluten, and read it periodically. Celiac.com and Celiac.org are both pretty current. One thing you will discover is that there are two organizations that are currently certifying products as GF, if a manufacturer is willing to go through their process. The Gluten Free Certification Organization GF seal certifies that a product contains 10ppm of gluten or less. The CSA Seal of Recognition certifies that a product contains 5 ppm of gluten or less.
2. Look out for hidden sources of gluten in your foods, and contact the companies or Google for people who have, and see what the response was. Many will say their food 'contains no gluten ingredients' but that's not telling you about cross-contamination. Sometimes, you gotta push for more information, and if they balk, you may have to say goodbye to the food until you know it's safe.^
3. Be aware of the food around you in a public setting. If gluten-filled plates are being carried over the food you're about to eat, spoons are being used on both GF and non-GF dishes, fruit is cut on a shared a cutting board with the bread pieces, then you're not in a Celiac safe food place. Might be a good time to pass on the buffet and get something GF out of your purse.
4. If you are unsure about a food, especially a flour or grain that is supposed to be naturally GF, there are home test kits that you can purchase on-line to test the levels of gluten. You can Google these kits and they'll pop right up. I am also going to be purchasing a few of these and trying them out on various flours, so whenever I get some results, I'll pass along whatever I find out!
^ A tip when searching for information that other celiacs have put on-line: make sure their information is current (remember that 'changing ingredients' issue?) and that it's aimed at YOUR country. Different countries have different definitions of what is GF. Also, companies have different ingredients lists for the same food, sold in different countries. So sometimes, something that is gluten free in the UK is not GF in the USA. Don't ask me why, as it makes no sense to me, but I'm sure they have their reasons...possibly.
And that's all the lessons we have to cope with for today, anyway. Next time, I'll try to look at avoiding gluten in our own home, and some of the WEIRD places it can hid.