Celiac Disease: The Good News, and the Bad

- A disease that strikes millions of Americans... You would think grab all kinds of headlines. Yet most of who have it... Don't even know it.

This disease can make eating a simple slice of bread harmful in a dozen different ways.

Ten years ago, we introduced you to celiac disease through his daughter, Alexa. Tonight, a follow-up with the good news, and the bad.

 

The Big Apple offers a broad menu for a 24 year old young woman with Celiac Disease. I should know. I’m her father.  

“It's not something that's on my mind nearly as much as it was. I just felt so angry and frustrated, that i just kept it to myself and i just got- i was very depressed and it made me feel worse about it.”

That was alexa, a decade ago, several years after she was belatedly diagnosed with Celiac.

As i reported back then, Lexie's small intestine was damaged every time she ate anything containing gluten; a protein found in wheat, rye and barley. That birthday cake we had happily served her?  We were unwittingly poisoning our own child.

The damage had stunted her growth-- it became noticable when she was very young-- and made her susceptible to a host of other major health risks.

In those days, grocery shoppping was a nightmare; mom's palm pilot was put to use to research just about everything that went into the cart.Gluten-free foods were scarce, expensive and...bad. The food was never a particularly high quality.

Today?

Gluten-free foods are a 26-billion dollar industry. Tasty alternatives- using rice flour, tapioca and other wheat substitutes-  can be found in almost all mainstream supermarkets Prices have come down and the taste has improved.

In a major city like New York, where she now lives, there are gluten-free options of all kinds. But even in smaller towns, shopping and mealtime are no longer awkward, embarrassing-- and no longer endangering her health.

“It's a lot easier,” she says. “But at the Ambler-based national foundation for Celiac awareness, founder Alice Bast says there's still a big problem:

"What we're hearing from our community is, gluten-free food is not enough.  And they need celiac disease to be taken seriously,” Bast said.

The walls of the foundation are lined with cartoon images depicting the issues facing those with celiac.

One caught our eye; in it, a restaurant customer asks if a menu item is gluten free.  The waiter rolls his eyes and thinks to himself, 'oh, no, not another one!'

The cause of the irritation?

"We call it the 'celebritatization; of Celiac Disease."

Major A-list stars like Russell Crowe and Gwyneth Paltrow, Miley Cyrus and Lady Gaga have, over the past few years, gone gluten-free- not because they have celiac. For these celebs, it's a dietary choice.

The result?  Lots of headlines.Google the term "gluten-free" and you'll get 98 million hits.

"Celiac disease," generates just five million.

“What it does is, it takes the emphasis off Celiac Disease, as being a serious, genetic, auto-immune disease."

The foundation's website puts the focus back on the disease. And it offers training to those on the front lines of this battle; food service professionals.

“Understanding where gluten may be hidden is a real challenge.  Soy sauce, salad dressing...,” Bast said. If they don't understand Celiac, or if they believe their customer is simply indulging a fad diet with a request for a gluten-free entree, they may not take seriously, their responsibility to keep their offerings free of contaminants.

"If you communicate verbally and visually, you will minimize your mistakes."

“One particle of gluten will set off that auto-immune reaction, and every time we eat out, we put our health into the hands of the food service professionals.  And we want them to take our disease seriously."

Alexa takes her celiac seriously. She has researched her disease and knows what to look for on a label-- and what to ask for, at a restaurant.

“No one else is going to look out for you that way.  You have to be in control of what you're asking for. You have to be careful in speaking up for yourself, whether it's in a restaurant or with a group of friends or your family.  It's uncomfortable, often times, but it's necessary-- it's for your health."

 

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