It’s not a “preference”

Celiac disease seems to be a hot topic these days. The gluten-free diet is becoming a bit of a fad diet along with paleo, and even to a degree, veganism (disclaimer: I know a lot of vegans and see this as a viable and awesome diet. But let’s be honest, a lot of people go vegan to go with a trend, not because of what they believe in or for health reasons). Celebrities are turning to a gluten-free diet to help lose weight, or keep the weight off. Actresses like Jennifer Esposito are being kicked off of shows because of health issues associated with Celiac disease. And people like me are finding it harder and harder to be taken seriously.

Take that girl over there. The one who’s going to a restaurant with a bunch of her friends. She’s on the gluten-free diet for what she believes to be weight-control. She’s not celiac; she’s not gluten intolerant; she’s not allergic to gluten or wheat. She tells the server she’s Celiac and can’t have gluten. The kitchen implements all of their requirements for creating an allergy-safe meal – sterilizing everything, using special pans and utensils. The server comes back and sees said girl munching a piece of bread from the basket he brought over. He says “excuse me miss, but that bread has gluten.” She says, “Oh it’s fine, I’m not really Celiac I just don’t eat gluten for the most part and it’s easier to explain by saying I’m Celiac.”

It happens. A lot. People say they’re allergic to wheat, gluten, dairy, etc and really aren’t because it’s “easier” when they’re going out to eat. And I get that to a degree. You are taken more seriously when you’re allergic to something.

But tell me this – how are we as celiacs and food allergic people taken seriously when people like that are wrecking it for us?

Because friends, they are wrecking it. Restaurants question whether Celiac is really that big an issue. People say they’re Celiac but “not really that sensitive” so they don’t worry about cross contamination. Every time that happens, a restaurant or server might become more lax. They might not sterilize to the same degree as they would have before. And someone could get seriously sick, or worse, go into anaphylactic shock.

People who are claiming gluten-free, dairy-free, speciality diets as necessity as opposed to preference are causing those of us with that necessity grief. And I’m getting annoyed by it.

I have a soy intolerance, so does Miss A.  I rarely consume dairy; likewise with Miss A. No one in the house consumes peanuts. Mr Man, Miss A and myself avoid wheat completely. The dairy and the soy are preferences; the nuts and gluten are necessity. I don’t claim to be allergic to dairy or soy when I’m out and about – I ask about the ingredients but specify that I tend to avoid it, not that it’s an allergy. In fact, if I’m asked if I have an allergy, I point blank say NO to dairy and soy. I don’t. And I won’t claim to.

Even hospitals themselves are at fault. When my daughter had surgery last year, we specified that she had Celiac disease. It was recorder on her chart she had a wheat allergy. When I noticed it, I said “She doesn’t have a wheat allergy, she has Celiac disease”. They didn’t change it. And you know what they brought her for breakfast? Rice Krispies. Rice Krispies (unless the GF ones) have barley malt. Thankfully Chef Husband had packed food for her in case it was an issue. So she got to consume homemade banana bread instead.

Celiac disease is an autoimmune disorder. The only medical solution to it is complete avoidance of gluten. But you know what? Gluten-free living is not a cure. I still have days where I feel run down and not like myself. I still go through periods of time where I need a lot more sleep than I think the majority of people need. My body has a disease and as much as the gluten-free diet makes my life livable and comfortable now, it’s not a cure-all.

Do your part. Celiac disease is real. Allergies are real. They are not things that are made up for fun, and they certainly aren’t a preference. Help keep us safe and learn more about Celiac and Allergy restrictions. Make this a safe place to live and not a place where we worry about going out anymore.

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3 Comments (+add yours?)

  1. Celiac and Allergy Adventures
    Nov 07, 2012 @ 10:55:07

    I wrote about this same issue in a couple blog entries (5 Essentials for Restaurants, and Could I have a Side of Poison). I have mixed feelings because I feel people should be able to eat what they want, when they want it – it’s their choice. But in instances like that, or some of what I posted about, it REALLY sends mixed messages to servers who may not be entirely educated about the seriousness of food allergies and cross-contamination. It minimizes the seriousness even to restaurant owners, who may not have effective plans in place to prevent cross-contamination, because the majority of people coming in seem to be consuming it in small quantities without any issues. Without educating restaurant owners and servers, there is no way that these mixed messages won’t confuse them and potentially hurt people with Celiac Disease and food allergies. The HUGE amount of misinformation and misunderstanding – even among the medical community – is dangerous.

    Reply

    • lifelearningmama
      Nov 07, 2012 @ 11:00:02

      This is exactly how I feel too. I’m all for eating what you want to eat. However, until restaurants understand the severity of things like Celiac and allergies (and some do already, but the majority still don’t I feel), then the mixed messages are really hurting us. Literally. Misinformation drives me insane!

      Reply

      • Celiac and Allergy Adventures
        Nov 07, 2012 @ 11:03:20

        Yep, absolutely agree. I know someone who is gluten intolerant or gluten-sensitive or something, but she’ll post pictures on her Facebook consuming an entire box of munchkins! I can’t expect the general public to understand the differences between Celiac disease and gluten intolerance, so I can see where they’d get confused. “Oh, well she eats donuts and she’s fine!” It’s definitely frustrating. I feel that education for restaurants on allergies and Celiac should be just as much a requirement as all their other licensing/education regulations.

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