Saturday, May 17, 2014

what gluten is and why it matters

May is, among other things, Celiac Awareness Month. It's hard not to notice all the articles, videos, and posts about gluten this month.

The spectrum of media concerning gluten this month has surprised me a bit. I've seen the gamut, ranging from the helpful to the absurd. There are bloggers who have devoted much of their month (and their lives) to helping those with Celiac/gluten intolerance. There are gluten free goodies being given away to celebrate that our lives can go on after being diagnosed with Celiac. There are videos that poke a bit of fun at the gluten free lifestyle. (I found the video to be quite amusing, though I had to force myself not to read any comments regarding said video.)

Then there are the articles who bash people for going gluten free, with headlines like, "Being gluten free is dumb," or, "Surprise! 'Gluten Intolerance" is Likely Bullsh*t!" Yes, there is a one-sentence disclaimer that Celiacs should not eat gluten. And then these articles go on to say that those who have experienced a return-to-health because they cut out gluten are crazy and shouldn't be gluten free. It amazes me how judgmental and spiteful people can be these days.

All this hype and all this anger over a set of proteins in everyday food.

While I agree there is a danger to this "gluten-free-fad" that seems to be ever popular these days, it's not for the same reason these article writers seem to have. They claim that the newest study has proven that people don't need to be gluten free. This, however, is not necessarily the case. Yes, the new study (note the word "study" -- not "studies") has found that the specific supposedly gluten intolerant people involved may not have had to be on a gluten free diet.

The study was a basic one, though, and did not take many factors into account. Gluten intolerance and IBS are often mistaken and misdiagnosed for each other. In addition, I would be interested to know what kind of diet these participants were on before starting this particular study. Were any of them previously on a low FODMAP diet? Were any of them Paleo? Did any of them have other food allergies or intolerances? Had they done allergy tests to see if other food intolerances were at play? Did these people continue to eat gluten free, grain-filled substitutes for the foods they had eaten before going gluten free? I'm definitely not saying I don't agree with the study, but I think it's apparent that more tests need to be done on a more diverse population of people who have been diagnosed with gluten intolerance before we can go around saying that gluten intolerance isn't real.

The reason I feel that the gluten free fad is dangerous lies more in the outlook of the general public. With so many people preaching gluten free, even though most of them don't really have to adhere to the gluten free lifestyle, it makes us look bad. Someone going to a restaurant and ordering a gluten free meal, who later eats a gluten-filled cupcake and plays it off like it's no big deal, gives the impression that most of us stick to a gluten free diet only when it's convenient to do so. When a celebrity endorses the gluten free lifestyle because it helped them to lose weight, we lose credibility. When a cooking show host calls Celiacs "picky eaters" and then touts a gluten free recipe that actually uses gluten-containing ingredients, we look like we're snobbish instead of people who are truly trying to protect ourselves.

What people don't see, though, is the real symptoms of gluten on someone who can't digest it. There is always the gluten-accompanying nausea, bloating, and stomach pain -- those are the easy symptoms. The real pain comes from the brain fog, the anxiety attacks, the balance between constant constipation and then crippling diarrhea, joint and muscle pain, the week or month-long insomnia, the memory loss,  and the countless other effects of gluten on the digestive, respiratory, and even nervous systems.

When we speak about being gluten free, we are often mocked. We are often not taken seriously. We are served gluten in restaurants, which brings weeks of the above symptoms and the feeling that we can never be safe eating out or traveling.

That's why I'm all for this gluten free fad to fade, to disappear. The sooner, the better. Yes, the fad dying out might cause companies to stop marketing to the gluten free fad dieters, so Celiacs may not have as many restaurant and/or grocery store choices. The flip-side to that, though, is that maybe those of us still fighting the good fight will be taken seriously. I look forward to being able to say I have Celiac without having to brace myself for the imminent eye rolling or the looks of disbelief.

To those of you who are gluten free because you think it's trendy, please stop. You're not doing yourself any favors and you certainly aren't helping those of us who don't have a choice in the matter. To those of you who don't know anything about gluten, please do your research before offering advice or your ignorant (and malicious) comments. Or better yet, ask us about it. In my experience, most Celiacs are happy to talk about the information they have learned through their diagnoses. We have had to become food experts to survive, so we have a lot of knowledge to share. To those of you who have symptoms, please do research and testing before self-diagnosing yourself as gluten intolerant. And finally, to those of you who are gluten free because you have to be, keep going strong! You are not alone!

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