Tuesday, May 3, 2011

Celiac Disease Awareness Month

Welcome to May. On the heels of headline-worthy world-wide news lurks some of the lesser-known observances in May. The National Health information center at healthfinder.gov lists over 33 health-related observances this month. Why do we need to know about Toxic Encephalopathy or Cornelia de Lange Syndrome? I say, it is precisely for the same reason many of you just made a face, raised an eyebrow, or stumbled over those few words: because we don’t know much about them, and they affect people on a daily basis. I’ll save my soapbox lecture about health research and pharmaceutical companies, but I will state that the less well-known a disease is, the harder it is to find good information and care. Some conditions make day-to-day living an obvious chore, while others silently cripple with very little notice from the outside world.

I urge you to learn about something new. Find out about Sj√∂gren’s Syndrome, Type 1 Diabetes or Hashimoto’s Disease. Statistically, you’ll know someone with one of these, and might not know it. Understand thy neighbor; walk a mile in their shoes. You’ll probably get along a lot better if you do. I’ll get you started.

May is Celiac Disease awareness month.

If you know me, if you know someone that has Celiac, you know of the existence of this condition. You may not know what each day is like. I’ll do my best to explain. It’s a long post... but you get a gold star if you make it all the way to the end. If you are gluten-free, there’s nothing new here, but do feel free to share this link if you don’t want to write your own explanation.

I don’t write to receive pity or sympathy. I simply want to share in the hope that I can help even one person understand. Statistically, it is projected that 1 in 133 people have Celiac Disease. Only about 3% of those are diagnosed. I’d venture to say you know at least one person that is affected... whether or not you (or they) know it.

I’ll start out by acknowledging that each person with Celiac has a unique experience. Some have an easy time of it and never become ill. Some have to quit their jobs, change their lives, and take years to regain their health. All need to avoid gluten (wheat, rye, barley and contaminated grains like most oats). Celiac not only destroys the lining of the small intestine (the villi, actually), it can also keep the body from getting the vital nutrients it needs. I could write pages on what that can do, but suffice it to say, it can effect every system in the body.

I happen to be one of the lucky few that had a health crisis in order to come to my diagnosis. I say “lucky” only sort of in jest. I am motivated to never “cheat” on my “diet”. When you are faced with eating a certain way as the only way to help you stay functional, it doesn’t even cross your mind to knowingly consume something you shouldn’t. It’s not a preference, it’s a need. In that, I am indeed lucky.

Just Don’t Eat It

It sounds fairly easy to avoid gluten. Don’t eat bread. Eat fruits, veggies, meat, and legumes. Even rice and buckwheat are ok! But it’s not that simple. How were they processed? Were they prepared on a surface where there was bread or flour? Did the meat get a drop of soy sauce (most has wheat) on it from the pre-marinated chicken that can be purchased at most supermarkets? Were the chickpeas hauled in a truck or stored in a silo that previously held wheat? I found a piece of wheat (might have been barley) in my minute rice once (no, it wasn’t un-hulled rice, verified by a farmer). Consider that for a moment. I look at every grain of rice that I am going to eat.

Here’s a fun fact: Wheat flour can stay airborne for 24 hours. Think of the implications: eating at friends' houses, walking past the bakery in the grocery store, eating at a pizza place that proudly advertises gluten-free pizza. Q: If I breathe wheat flour, will I get sick? A: Depends. How much? For how long? How sensitive am I that day?

I have indeed been “glutened” in a similar way. High school kids stepping on Cheerios made a huge mess outside my classroom. When I went out to tell them to clean it up, a big gust of wind came up - Cheerio dust in my eyes and nose found its way in, even though I immediately washed out every crevice in my face and mouth. It was not a good afternoon.

For the record, it is a big argument even in the medical community how much gluten will cause a reaction. Ask any sensitive Celiac and they will tell you, it really only takes a a speck or crumb.

Each Day

On a “regular” day, food is very much the center of attention. I have to plan every bit of food I consume. Personally, my system is so sensitive that I’ve had to eliminate not just gluten, but caffeine, corn, and much processed food. I’m also on a high calorie diet. So, someone has to prepare five meals a day for me. Hint: that someone does not make minimum wage, wear a paper hat or a green apron. All of that food is prepared at home.

Even products at the store marked “gluten-free” aren’t always safe. There are more rules about catching trout than there are about labeling foods. Sometimes they are processed on lines that have processed wheat. Some products (like a certain rice milk) were processed with barley enzymes - a process that does not need to be labeled. The standard is anything with “less than 20 parts per million” can be labeled GF and are “generally recognized as safe”. Studies have shown some Celiacs can react to less than that.

Aside from food, any product that might possibly make its way to any mucous membrane needs to be free of gluten. Yes, some Celiacs still use shampoo with wheat germ oil. I’m not interested in taking that risk, thank you. Everything that comes into my house gets screened. And by everything, I mean everything, including: soap, lotion, cat food (she likes to lick my face...it’s weird), vitamins, feminine hygiene products (yes, I found one that has wheat in it), toothpaste, dental floss, makeup, etc. I even throw away the first paper towel because some adhesives contain gluten, and the manufacturer states that it might. Might be excessive, but I’m not taking that risk.

Even kisses are screened. When he gets a brownie, so do I, whether I want one or not.

Interacting With People

I am a people person. My career and personal life put me in a position where I am with people a lot. Whenever there are groups of people, there will be food. An example: I sing in a chorus with some wonderful, amazing women. At an all day rehearsal, invariably these lovely ladies will bring food to share. Therefore, lined up at the entrance of the room is a table full of pizza, crumb cake, bagels, cake and donuts. I love that about them - a wonderful gesture, right? It’s not a problem for me to smile and walk past the table. I’ve even learned to be happy for everyone else that they can eat cake. BUT... picture THAT many crumbs on hands, tables, chairs, and my favorite: if you speak while eating, food WILL come out of your mouth. It might land on my food, it might land in my eye, or in my mouth. Yes it’s disgusting, but for me it’s also dangerous. That happened to me at a funeral once. No kidding. Someone was eating a chocolate-chip cookie and sprayed cookie crumbs directly into my face. Talk about a bad day made worse.

If someone refuses your handshake, don’t take it personally. Maybe they have a life-threatening peanut allergy and just saw you eating mixed nuts. Maybe they are immunocompromised (like me) and don’t want to catch a bug that you just picked up from the doorknob on the way out of the bathroom after washing your hands.

Eating Out

There are very, very few restaurants that can accommodate me. Even if it says “gluten-free” on the menu, it doesn’t mean it can be prepared safely. Have you even been served water at a restaurant and seen a crumb floating in it? Have you ever ordered your dressing on the side, yet there was a drip of it on your salad? Or a stray spaghetti noodle? Seen a waiter accidentally stick his thumb in food before serving it to you?

Last time I went to PF Chang’s (they are usually VERY good), it took them three tries to get my order right. By that time I was so anxious about whether or not what they gave me was safe that I could hardly eat it. Happy Birthday to me. Next year, I’ll eat at home.

In my kitchen at home I’ve replaced most of my cookware. I can’t expect most places to have safe cookware. I got sick once when I make my GF rice pasta at a friend’s house - in retrospect, it was probably a little gluten hiding under the little rivets that hold the handle on. Or maybe the lid. I wouldn’t dream of sharing a colander with “regular” pasta.

At another local restaurant, after reviewing their GF menu, speaking with the manager,
being assured that they use safe practices in the kitchen, I still got hit hard. I spent the next eight hours curled up on my bathroom floor writhing in pain. When that happens, it usually takes a couple weeks to feel normal again.

Socializing and Holidays

Much of our social life really does revolve around food. How often have you been at the “main event” (movie, ball game, work, rehearsal), and someone wants to hang out longer, so they suggest going out to eat? Happens all the time. Girls night/boys night out almost always starts with dinner. Then the question becomes - should we invite the one with the “weird food issues”? And if we do, does that mean we can’t go out to our favorite place with those great desserts?

Just about any holiday brings with it its own set of food traditions. When I’m at home in the safety of my own kitchen, I can make anything gluten-free. Cake, stuffing, casseroles, pasta...done! When heading elsewhere, I don’t count on it. I’m ok with bringing my own food. But I admit it’s hard. When everyone else is sampling the turkey, ham, mashed potatoes and gravy, homemade biscuits, cookies and cakes, it is difficult. Even harder when the person sitting next to you is getting biscuit crumbs everywhere and keeps reaching over your plate. Oh, and then takes his apple-pie laden fork and points at something in the middle of your plate (I’m not making this stuff up, folks!). It's hard to not feel assaulted sometimes.

Turkey is gluten-free, isn’t it?

Well, naturally, yes. But the illusion of being able to eat one somewhere else was thrown right out the window at my first gluten-free Thanksgiving with friends. It was a gorgeous, huge bird. Perfectly browned. It was pulled out of the oven and straight on to the cutting board. The wooden cutting board... where bread is routinely cut. If that weren’t enough, the electric knife that cut the turkey was serrated, and who knows what it had cut a few minutes before. Oh, and there was stuffing in the bird.

That turkey was very much not gluten-free.

How about ground beef on the BBQ, that’s a no-brainer, right? Well, what else are you cooking? Did you have something marinated next to it? Did you (or have you ever) toast(ed) your bun on that grill? Because if so, no, it’s not ok. Not to mention the beer you’re drinking that dribbles down the bottle and lands on the surface where you have been resting your spatula.

I could go on, but I’m hoping you get the idea. On the way out, I’ll spark your interest with a few more considerations that I’ll let you explore in your own mind: work luncheons, dating, raising little kids, parties, sharing drinks, business lunches, travel, long flights, travel to foreign countries where they do not speak the language, work/hobby weekend retreats, emergencies, and seminars with tight schedules. It’s an adventure!

I’ve been gluten-free for two years. I really don’t miss the gluten that much. I miss the convenience and the social aspect more than anything. The next time you’re with a friend that has unique needs, whether a food allergy/intolerance, wheelchair/mobility issues, silent disease or anything else, take the time to understand their needs. Get out of the box and your own comfort zone... a world of possibility awaits, it just may be a little different than the one you're accustomed to.


  1. Having watched a dear friend go through an unexpected glutening episode for more than a day, I feel there should be more than a month dedicated to the education of not only the public but businesses as well. Nicely written superwoman!

  2. Beautifully written. I only first heard about Celiac disease or even gluten intolerance when you were diagnosed and even then never really understood the magnitude of what it means to truly be gluten-free. I salute you and your strong support system and only wish there were more people out there like you to educate us and spread the word. My happy thoughts for your recovery are being sent out to the universe on a regular basis. "Superwoman" is definitely accurate!