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Top Ten Myths About Celiac Disease July 4, 2013

Filed under: Celiac Disease — acgheen @ 12:00 am
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Part of my adventure involves living with a condition known as Celiac Disease.  An auto-immune disorder (triggered by the gluten in certain grains) that attacks the small intestine and hinders its ability to absorb nutrition, the disease can be painful… or even deadly.  At the time my father was diagnosed, it was considered to be relatively rare.  With increased awareness of the condition, however, this is not proving to be the case.  If you don’t already know someone who has CD, the odds are in favor of your meeting someone in the near future.  So this week, I’d like to take a few minutes to share some of the most common myths about the disease.

Myth 1: Celiac Disease is an allergy to wheat.

Yes, wheat is one of the taboo foods for a Celiac… along with barley, rye, and (with the exception of distilled products like whiskey) anything derived from these grains.  But unlike an allergy in which the body attacks the invading allergen, an auto-immune disorder causes the body to attack itself.  Instead of sending a barrage of natural defenses against the wheat, a Celiac’s body actually begins to destroy the cilia that line the small intestine.  Right response.  Wrong target.

The only way to prevent this auto-immune response is for a Celiac to eat a gluten-free diet.  Which leads us to:

Myth 2: Gluten-Free Living is About the Ingredients in a Product.

The answer is yes… and no.  Gluten-free ingredients are just the beginning.  I can, for example, eat a grilled steak.  I can’t, however, eat that steak if it’s cooked on a grill which has also been in contact with a BBQ sauce containing wheat… no matter how many eons ago that contact took place.  It also means that I can’t eat prepackaged foods that were processes on equipment that also processes wheat.

Gluten particles are microscopic and, without a rigorous (read: I’m an orthodox Jew preparing for Passover) de-glutenizing of the cooking equipment and the area in which that equipment is used, I run a severe risk of being “cross-contaminated”.

This means that, for the most part, I can’t eat anything made in my friends’ kitchens… even if the ingredients, themselves, are acceptable.

Myth 3: People with CD Can’t Eat Out.

Just because I can’t eat food from most of my friends’ kitchens doesn’t mean that I can’t eat from any of them… and the same goes for restaurants.  Some select friends understand exactly what exposure to gluten does to my body and take the time to ensure that they have followed all the necessary procedures for eliminating gluten from their kitchens and cookware before they prepare my food.

The safest way to prevent cross-contamination, however, is to use dedicated cookware and a dedicated kitchen space.  Some eateries do.  My favorite places to eat are restaurants in which the owner’s family has been affected by Celiac Disease.  They’ve seen the damage done by the auto-immune disorder and will take extra care in preparing my meals.  This does not, however, mean that I can eat at any restaurant offering a gluten-free menu.  Which leads us to Myth 4.

Myth 4: If the Packaging and Advertising Say Something is Gluten-Free, It Is Safe for Celiacs.

My fellow Celiacs and I only wish this were true!  Unfortunately, not every restaurant that offers a “gluten-free” menu actually offers food that hasn’t been cross-contaminated.  And unless the packaging on those potato chips indicates that they are “certified gluten-free”, their gluten-free claim doesn’t mean much.

Certification is an expensive process, but an important one for Celiacs.  It means that the company not only manufactures gluten-free product, but that they’ve had an outside party test that product to confirm that no cross-contamination has taken place.  (Products must contain fewer than 20 ppm or parts per million of gluten to be considered gluten-free.)

Myth 5: It Must Be Safe for Celiacs Because my Friend with CD Doesn’t Have Any Problem with It.

Like most diseases, the obvious effects can vary from one person to the next.  If I come into contact with even the smallest particle of gluten, I begin to get flu-like symptoms.  My Dad, on the other hand, was only diagnosed with Celiac Disease after he began losing weight.  He didn’t feel ill, at all, so it wasn’t until that weight loss became extreme (the effect of his intestine failing to absorb nutrition from the food he was eating) that he realized something was wrong.

Don’t be fooled: the outward signs may be different (or even non-existent), but the same thing is going on inside of every Celiac!

Myth 6: It’s Okay to Cheat Now and Again.

In short: no.  While you’re sure to find Celiacs who do cheat on their gluten-free diet, the same thing will happen to their intestine every time.  And this cheating will shorten their life-span.  Conscientious Celiacs don’t cheat even when it’s more convenient to do so or the craving for that greasy pizzeria pizza becomes overwhelming.  Friends of Celiacs should never encourage them to cheat either.  The best way to demonstrate your friendship is to be conscious of your friend’s condition and find solutions that suit both of you!

Myth 7: If You Haven’t Been Diagnosed, You Don’t Have It.

I run into this argument quite a bit.  If testing and the ensuing medical diagnosis were what made the difference between having a serious problem and not having one, I imagine that many more people would forgo the testing!  After all, who wants to be told they have cancer, diabetes, or even the flu?  Just because you haven’t undergone an invasive test performed by a medical professional doesn’t mean that you don’t have Celiac Disease… or that you aren’t justified in treating it.

Celiac Disease is genetically transmitted.  If one member of a family has been diagnosed, other family members with similar symptoms don’t necessarily need to be tested to confirm that they have the disease.

My advice?  Don’t try to talk your undiagnosed Celiac friends out of doing what they know is best for their bodies.

Myth 8: I Shouldn’t Eat in Front of My Celiac Friends.

Not at all!  While we don’t want you to wave maple doughnuts in front of our faces or eat that pizza as though you’re special because you can have it and we can’t, most of us don’t mind others consuming gluten products in our presence.  We have the self-control to say “no” and, if we really can’t handle the temptation, we can open our mouths and tell you… or simply walk away.

Don’t feel guilty (or resentful) if we bring our own food to the family reunion or church potluck!  It’s our way of letting you know that our dietary differences aren’t enough to keep us from wanting to be with you… even when you’re eating!

Myth 9: People with Celiac Disease Don’t Lead Quality Lives.

This is the “pity” line and, if you mean that there is a lot we can’t eat, then you’re right.  But there is also a lot that we can eat!  Yes, we have to forgo most fast food, candy bars, certain soda pops and potato chips… but tell me, does that sound like a bad thing?

I eat mostly whole foods – allowing me to consume less, but get more nutritional value from what I do eat.  Since the diet change, I’ve gone from a size 14 to a size 8… and I’ve yet to meet any woman who finds such a transformation to be a cause for complaint!

Myth 10: Celiac Disease is Like a Death Sentence.

Yes, Celiac Disease can have deadly effects, but when it’s managed properly, most Celiacs live perfectly normal lives.  In fact, you’ll find many of us who are grateful that we finally understand why we felt so lousy for so long!

I went from feeling like I had the flu, living with achy joints and exhaustion, to feeling energetic enough to take up walking and cycling! For me, the recognition that I have Celiac Disease wasn’t the door to a prison, but a ticket to freedom.  And many other Celiacs would agree.  Our lives are better now that we’re gluten-free.

If you’ve recently been diagnosed with CD, the road can be a bit rocky at times (I remember thinking that I’d never eat anything except boiled eggs ever again!), but there is hope.  Gluten-free living requires being alert and conscientious, but it is rewarding.

It’s my hope that this list of myths has helped you better understand what Celiac Disease is and what the gluten-free lifestyle looks like.  If it helps you better live that life or to connect with your friends who do, then the article has been a success!  If you have any questions about living with Celiac Disease, feel free to send them my way.  I don’t have all the answers, but I can at least help connect you with some folks who do!



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