Don’t always roll your eyes when people order gluten free

Lately I see more rolling of eyes or sighs from other tables when I ask questions about how food is prepared and what’s being put into my food.  There are always going to be people who dramatise just about everything simply because they want attention or because they are so absolutely particular that everything has to be a specific way.

Me, I’m just trying not to puke.  My daughter and I both have Celiac Disease and you have no idea what a luxury it is to be able to finally be able to go out to dinner.  For a long time we always had to bring prepared food for her.  Think about how left out you feel when everyone else is ordering off the menu and you’re eating a grilled cheese sandwich that’s not super hot anymore while everyone else is having huge bowls of pasta or chinese food.

One of the things we found out the hard way in 2007 when Gillian was diagnosed, was that celiac disease was a difficult thing to deal with.  Going out to dinner was impossible and even making dinner so that it didn’t taste like cardboard was a struggle. It’s not easy to manage, and it’s a lot more expensive than people think.

I’m grateful in a way that going gluten free has become this trendy thing, because now labels have allergens listed in the ingredients and a lot of packaging has GF right on the front of the box.  I’ve had people try to talk to me about how they know everything about it and how it’s such a great weight loss system, etc.

So let me give you a few tidbits to take away with you so you know what the deal is.

  1. First and foremost, Celiac Disease is not an allergy, it’s an auto-immunity.  So yeah, CAN I have gluten?  Sure.  Will it cause my body to fight against itself?  You betcha.  Trust me, you do not want this.  There are people who test negative for celiac disease,  but are gluten intolerant or gluten sensitive.  And no, they’re not trying to be difficult either, they’re trying to not make themselves uncomfortable or in pain.
  2. Unless you want my daughter to hurl on you from across the room, stop giving me looks or rolling your eyes.  My sensitivity isn’t that bad, I usually just get the runs, but Gillian’s reaction is pretty violent.  You think I’m going to mess with my little girls health?  Yeah, bite me.
  3. It’s not a choice for us, it’s a health necessity.  If you think I don’t want to get a fresh out of the oven everything bagel, slice that badboy open and have a sausage egg and cheese sandwich, you are fucking kidding yourself.  Again, I could, but it’s not worth it. see #4
  4. Could I ignore it?  Sure.  Leads to other fun things like polyps, colon cancer, fissures, and other great things!  Plus I like being able to stay awake, have energy, and not be doubled over in pain.
  5. Going to parties is fun too, especially when the host or we ourselves explain that the separated food is for us and that digging your crumb covered hand into a bowl of chips has now taken that off the table for us because of cross contamination.
  6. People who tell you they are doing ‘The Gluten Free Diet’ are kidding themselves if they think that eating gluten free will make them lose weight.  Removing grains will definitely help with weight loss, that much is true.  But the people I’m talking about are the ones who buy all of the gluten free breads, cookies, cakes, and bagels to substitute for glutenous ones.  This is absolutely false as the things they use to replace wheat, barley, rye, and oats are things like tapioca, almond, and other flours that are 2-3 times as high in fat content as regular stuff.

The great thing about awareness is that people have come forward and been wonderful and generous.  Imagine what it’s like when the teacher and the principal will enforce a no peanut rule, but ask them to not have cupcakes for bday parties in elementary school and it’s like you’re committing a mortal sin.  I just want my kid to not be left out, not sitting there crying in the corner because she can’t participate in the festivities.  The parents were worse at times.

For a good 18 months, Gillian wasn’t invited to birthday parties because they didn’t want to have to accommodate her.  Particularly frustrating when we made it clear and known that we’d send her with her own stuff.  The most wonderful moment was when a friend’s mom called to ask Fae how to make a gluten free cake because her daughter refused to have a birthday party if Gillian wasn’t coming.  She made it clear to her mother that Gillian’s wasn’t going to come if there was one spec of gluten on the table either.  Since then people have been wonderful and understanding and involved in making us feel welcome and not like pariah’s or pain in the asses.

So let me get down off my soapbox and leave you with a question.  If you know someone has a peanut allergy, you’re careful right?  That’s all I’m asking for you to do with me and others who have celiac disease.  No, I’m not going to die because my throat closed up, but it’s painful, uncomfortable, and embarrassing when it happens.  So the next time you want to make a joke about how trendy it’s becoming when someone orders something off the menu and asks several times how it’s prepared or what’s in it, chances are they’re not doing it for attention or to be difficult.

They’re doing it because they have to.

Moving forward

I’ve been doing a lot of thinking lately, seeing my life as it unfolds in front of me every day and have come to the conclusion that something needs to change.  A guy I knew in high school suddenly is dead from a heart attack, my 46th birthday is this week, and there are a lot of things I want to do in this life.  Then Fae posted something on FB that really made me sit back and think about what i’m NOT doing about all of that.

“We must be willing to let go of the life we’ve planned, so as to have the life that is waiting for us.” – Joseph Campbell

I have this concept of what I have to do to support my family is keeping me from doing what I want to do, that a career is something that is necessary and excludes the ability to do anything else.

Life is too short, and whether you believe in heaven, reincarnation, or this is all we have, I realized that nothing is going to change until I take the first step.  Every part of me is scared that this will be yet another failure start that I get myself into, but  doing nothing is never going to get anything started.  Life is what you make of it, and if I can get out of my own way, I think I can make this work.

So I signed up for a creative writing 10 week course that I can do online at http://www.writingclasses.com/index.php.  The ability to do it when I have time instead of an actual time is going to allow me to do something constructive instead of spending hours on facebook trying to figure out what my spirit animal is, or see pictures of someone else’s life.

Wish me luck 🙂