When Gluten Free Isn’t Gluten Free (or is it?)

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After Bunky’s celiac diagnosis, our nutritionist at Columbia’s Celiac Center in New York City taught us how to make sure the food we were buying for our daughter was safe. She emphasized reading labels and told us that as long as the ingredients didn’t include wheat, rye, barley or oats (unless certified GF) it was okay.

That was it. Seemed easy enough, but still we were intimidated. Later, when we were actually in the grocery store, I panicked. There were disclaimers on some packages that said, “made in a facility with wheat”. We threw those back on the shelf. But when we emailed the nutritionist, she told us it was fine. My husband and I wondered how that could be true, but she seemed so confident, we went with it. It certainly opened up our options.

Even so, going gluten free was high stress for us in those early months. It is for everyone, I think. At the time we were scrambling to find palatable replacement foods for our young daughter. She was old enough to remember what she could no longer eat – her beloved cheddar bunny crackers, strawberry granola bars, and macaroni and cheese – but young enough that we hoped we could soon find new favorites.

And we did. Food shopping got easier in many ways. We got better, and faster, at reading labels, at knowing what to look for.

But then something shifted and the lines blurred a bit.

The problem for me stemmed from the Internet. The more I read online, on yahoo groups and blogs, the more discrepancies I noticed. It seemed some doctors and nutritionists gave conflicting advice. People said they were told NOT to eat foods produced in the same facility as wheat. Some talked about the hidden glutinous dangers in artificial and/or natural flavorings (which are totally not natural, but that’s another post). Whaaa? Our doctor said all we had to do was read the label, but here were all these people freaking out about “hidden” sources of gluten.

It was enough to make a celiac mama nutso. And I’m already pretty crazy. As you know.

So I emailed the nutritionist, again, about artificial and natural flavorings. They’re fine, she said, as long as the ingredient label looks okay. If the flavoring contains wheat, they’d have to disclose it since wheat is one of the top 8 allergens.

Okay… Again, sounds simple enough, but when I researched more on my own, the line was still kind of blurry. It seemed that although rare, it was within the realm of possibility that one of those flavors doctored up in a lab could *possibly* contain barley or rye since they are not in the top 8 allergen and therefore do not have to be declared on a label.

(If your brain is starting to smoke from confusion, check out this article that explains this whole business rather nicely.)

My own head was spinning with all this “new” information and it didn’t stop there. Once I opened my eyes to other people’s more conservative and cautious GF ways, more confusion and fear swam in. While the Columbia Celiac Center states that it’s safe to eat products produced in a facility that produces wheat, and, even on shared equipment, other doctors – even in the same city – do not agree. A friend from our local meet up group said her provider at Cornell Hospital (incidentally the same doctor who diagnosed Bunky) told her to avoid those products made in the same facility as wheat. Why take a chance, she told my friend.

Why? I’ll tell you why lady, because we have to live, that’s why! If we cut out all the products made in a facility with wheat we’d be restricting our restricted diet even more. Could we live without them? Okay, fine, yes of course we could. But if we don’t have to restrict ourselves further, I’d rather not. I’d like more choices for my kid, not less.

Yet, why all the discrepancy, even among reputable doctors and centers? Why isn’t there a definitive answer for an anal retentive celiac mama like myself?

For a few weeks I was kind of a mess, to be honest. Wondering if we were doing wrong by our daughter by not being extra cautious.

So I spazzed a bit when my husband bought these (fake) ice cream bars for Bunky.

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Like a wild woman, I flipped over the box and pointed at the small sticker attached to the label.

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Look, I said, stabbing the package. It’s made on shared equipment with wheat! How can it say it’s gluten free? I was very righteous and a bit insane. I felt personally affronted by those ice cream bars. Then my husband tried one and nearly gagged. But that’s beside the point.

Suddenly what seemed so cut and dry was not. We started to feel even more confused and anxious than in our early GF days. Now what, I wondered. Would we have to navigate the murky world of artificial and natural flavorings? Would we need to call companies as other celiacs have done in order to find out if they clean their lines between products?

I emailed our nutritionist again shortly before the holidays. I wanted to know if companies had the legal obligation to disclose “made in a facility” and/or “made on shared equipment” with wheat, and if it would have been safe for my kid to eat those ice cream bars if they hadn’t been so disgusting.

Her response didn’t surprise me. It fell in line with everything we had been told at Columbia so far. She told me it was voluntary for companies to disclose that information, and not necessary for me to make phone calls. “They must follow good manufacturing practices and segregate ingredients,” she wrote in an email. I should mention that I like and trust this nutritionist very much, but I can’t help but feel a bit skeptical…

I’m supposed to trust big companies? Did you hear about the Applegate Farms GF chicken nuggets recall?

Yeah, it’s scary trusting other people.

In some ways I feel like we’re back where we started. We’re reading labels carefully and still purchasing “made in facility” products, but I have to say a little more reluctantly. I’m not sure what the right thing to do is. All the discrepancy is making my head ache. I guess the proof is in the gluten free pudding, so to speak. When we get Bunky’s blood drawn a few months from now, we’ll know if we need to go the extra cautious mile.

I’m curious to know what “gluten free” means to you? Do you call or email companies to ask allergen questions? Do you rely mainly on diligent label reading? Have you felt overwhelmed by this tide of GF confusion?

(Please don’t slam me if you think I’m glutening my kid with our pantry purchases. I’m trying my best and following the advice of our doctor and nutritionist. I am however totally open to hearing other people’s opinions, experiences, and practices. The learning curve is pretty steep here in celiac city, you know?)