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I hate having celiac disease November 9, 2013

Posted by mareserinitatis in food/cooking.
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This week has been one of those days where I have to remember that I have a lifelong disease, and it can really suck.

I have been sick for the past month or so.  I knew I had eaten gluten from my symptoms, except I wasn’t sure what I would have eaten.  I’m pretty meticulous about my diet.  However, most of the reason I’m meticulous is because I don’t buy a lot of processed foods.  When I get into a situation where I can get processed foods, I sometimes run into trouble unless I check every little thing.  And it’s hard to remember to do that sometimes, especially when you don’t have to worry about it at home (too much).

Today, for example, I decided I wanted to experiment with some cooking, and so I bought a box of Rice Dream (rice milk, for those of you not in the know).  It says gluten free right on the box.  But then something clicked, and I looked it up.  It turns out that Rice Dream is sweetened with brown rice syrup, and some types of brown rice syrup are made with some sort of barley enzyme.  A lot of people with celiac disease have problems with this drink.

That’s when I realized why I’ve been feeling so cruddy for the past month: someone offered me some really delicious nut clusters.  I remember scanning the back of the bag and being pleasantly surprised I could eat it because the only ingredients were nuts and brown rice syrup.  I had a handful of them, and thought I ought to go pick up a bag when I have the chance.  What a great travel food!  Except, not so much.

And I’m discovering the sad truth that when I do have gluten, even tiny amounts, it can take weeks to recover.  I’m back to not being able to eat any fruit but bananas, when I was happily able to munch on strawberries and raspberries just two months ago.

The other problem is going out to eat.  Mike and I recently went to one of my favorite restaurants for dinner.  They have a gluten-free menu and have been great in the past.  This time, it was obvious the server had no clue what was going on.  He plunked the bread basket (yeah, basket…with holes) on top of the appetizer plates…so obviously I wasn’t going to be using those (or at least the top one).  Then I ordered an appetizer.  Someone brought it out as the server happened to be walking past.

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“Excuse me, but I ordered this gluten-free.”

“Well, yeah.  The appetizer itself is gluten-free.”

The gluten-free appetizer had four slices of toasted focaccia smothered in herbs and olive oil placed directly on top.  It was very pretty, but all I could think was a string of expletives.  Fortunately, the guy bringing the food out understood this was a mistake and said he would have a new one made.  I decided that if came back out within two minutes, I wasn’t going to eat it because someone had just pulled the bread off…

Yes, I’ve gotten sick from toast crumbs.  This is how bad it gets.  This is why I can’t have food that’s been anywhere near food with gluten in it.

So for those of you who don’t have celiac disease, I hope you can understand why some of us are so particular about our food.  If you offer us something, it’s not that we don’t appreciate the gesture, but so few people (except maybe those with food allergies) understand what it’s like to feel like every bit of food not prepared with our own hands is a potential landmine bringing weeks of illness with it.  It’s not that we don’t like you…it’s that no one likes to be sick.

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