september 13: national celiac awareness day!

Now, I’d like to point out that I’m focusing on the worst case scenarios in this little example.  If you’ve dealing with Celiac Disease for longer than a couple of weeks, you already know the basics of how to deal with these situations.  But I wanted to lay out an exaggerated set of circumstances just to make a point. Okay? Okay.

In honor of National Celiac Awareness Day, I’d like you to take a moment and consider doing the following:

Let’s live a day in the life of someone with Celiac Disease.

First, you get up…late, as usual, because you’re dealing with fatigue from being gluten-bombed the day before. You took precautions, but that crumb of bread must have slipped into your food when you didn’t notice, so you make a mental note to clean the counter better when you get home.  Going into the bathroom, you notice the pile of cosmetics, skin care items, and toiletries in the trash can; those were the ones contaminated with wheat in their ingredients.  Luckily, you managed to salvage a couple of items to make yourself look presentable.  Who knew you would have to check your shampoo and mousse and mascara for wheat products?

You manage to get ready and you run out the door, looking at what you can grab for breakfast along the way.  But wait…can’t eat those Pop-Tarts, because they are made with flour. Can’t have a granola bar, because the oats it is made out of could be contaminated with wheat either in pre-processing, processing, or packaging.  Same for the breakfast bar and quickie breakfast drink. Toast is totally out of the question; whole wheat bread. Finally, you grab the last banana, hoping that nobody touched it with gluteny hands and contaminated it.

Yay, it’s lunchtime! Your friends want to head to a restaurant, and you’re more than happy to go along with them, only to find out that they don’t have a gluten-free menu; what’s more, they don’t have any dedicated prep areas in the kitchen that they could use specifically for gluten-free items. You end up sipping a drink while watching your friends eat their food and you hope against hope that the glass was filled by someone wearing clean gloves; after all, once someone touches bread, and then touches your glass, you’re got a problem.  Luckily, you remember that there’s a gluten-free snack bar in your glove compartment, and you eat it like it’s the last thing between you and starving to death.

By the time you get off work, you’re ravenous, so you head to the grocery store.  Now, you know you’ll have to clear most of the evening for this chore, because when you go to the store you know you’ll have to read every label on everything you pick up, including the labels on any personal care items such as shampoo, mousse, lotion, sanitizer, or cosmetics. You’ll also have to check any cleaners used in the house or detergents for your clothing.  Anything that you will be wearing on your skin or your body must be gluten-free.  After all, think about it; how many times a day you touch your skin, then touch your face or mouth in some way?

You work your way slowly through the grocery department, reading every label for trigger words such as “wheat”, “-dextrin”, or any sign that the product was made in a factory or manufactured on machines that could have come into contact with wheat. Every label, no matter how small, must be read. Even items you might not think would contain it, like coffee creamer or chicken broth or spaghetti sauce or corn starch or baking soda, must be scrutinized. Gluten is sneaky and it hides everywhere.  You found this out when you bought a bag of dry bean soup mix, only to get sick from it; once you got onto the manufacturer’s website, you found out it was packaged on machines that also handle pasta, a fact NOT mentioned on the packaging.

Finally, finally, you finish your shopping and check out.  You hope that you have enough to pay for it, since a loaf of gluten-free bread is seven dollars and a small bag of gluten-free flour is five dollars.  You mentally kick yourself for paying seven dollars for bread, since you know it will taste like a cardboard box with crust, but it’s the only kind of bread you can eat.  You’ve thought about making your own bread, and mentally make a shopping list of items you’ll need that aren’t contaminated from previous flour breads; new bread machine or new bread tins, for starters, and you wonder if it would be weird to ask for those things for Christmas presents.

By this point, you’re too tired to go home and cook, so you decide to grab a bite to eat.  However, you soon realize that fast food is not for you, as your requests that the grill people change their gloves and use freshly cleaned utensils creates the very opposite of “fast food”.  It gums up the line and creates tension in the grill crew.  Besides, most fast foods are sandwiches or breaded items, and while you could have a salad you’re just not certain that a fast food restaurant kitchen is the cleanest environment ever for protecting against gluten on your lettuce or grilled chicken strips.

Deciding on a sit-down restaurant, you nicely tell the server that you’ll need your meal prepared in a gluten-free manner, only to receive a blank stare and a confession that “I don’t even know what that means*.”  By the time you explain, request that the people making your food change their gloves and use freshly washed utensils and clean that part of the grill and use a dedicated fryer for any fried foods and ask for a clean glass, your server is looking at you like you've lost your mind.  You could get lucky and score a very helpful server who is attentive and considerate of your special dietary needs, but let’s face it…it’s a toss-up as to which you’ll get.  You eat, hoping your food was prepared as you requested, and then leave a hefty tip for being such a demanding customer.

You go home and put away your special gluten-free food in the special gluten-free designated areas that have been specially cleaned and set aside for your special gluten-free food only.  They go along with the special gluten-free cookware and special gluten-free cooking utensils, since gluten can leach into non-stick cookware and plastic spoons and turners.  You even have a special gluten-free toaster.  Anything that goes into the fridge gets your name written on it so that nobody will contaminate it with their fingers or forks.  Even the peanut butter gets labeled so that nobody sticks their gluteny knife in it.

For a bedtime snack, you eat a gluten-free cookie from a bag that cost you five dollars for thirteen cookies and that tastes like a Styrofoam disk.  Then you go to bed, praying that no gluten sneaked into your mouth this day, and you prepare for the next day.  As you go to sleep, you mentally say a thankful prayer that you at least know what is wrong with you and that it is something you can control.


*akshully happened to me