The Celiac Story

Stacy McCloud is a successful television reporter in Ohio.  Beginning in the summer of 2001, her stomach problems became too severe to bear.  She remembers having to pull over to the side of the road because it hurt too much to drive, or hunching so far over from pain she was practically sitting on the floor in the middle of the grocery store.  She saw several doctors over the next few years that each had a different idea of how to treat her pain, without ever being able to tell her what was really wrong.  Six years later, she was finally diagnosed with Celiac Disease.

In honor of Stacy’s story, and the hundreds of thousands of others out there just like it, May is Celiac Disease Awareness month (there is currently a bill going through Congress to make it official).  So sit back as I answer the question on many of your minds: what IS Celiac?

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People with Celiac Disease (CD) are unable to consume gluten.  A gluten protein causes a toxic reaction in their immune systems that damages the villi of the small intestine.  These little guys are necessary for us to absorb and process nutrients, and thus to live.  Untreated, these damaged villi could lead to more serious conditions and even death.

Cause
The underlying cause of CD is still unknown, even though 1 out of every 133 people in the US have been diagnosed with the disease.  CD affects more people than Crohn’s Disease, Cystic Fibrosis, Multiple Sclerosis, and Parkinson’s Disease COMBINED.  And the federal government estimates that there are probably around 3 million undiagnosed cases of CD out still out there!
Contrary to what you may immediately assume, CD is NOT a food allergy- it’s an autoimmune disease.  (Wheat allergy is a separate condition that people often grow out of.  CD is lifelong.)  Genetics do play a role, in that people with certain version of the HLA genes (these influence immune reactions), are more susceptible to the disease.  But genetics is not the only important factor, and it’s the other factors that we still don’t really understand.

Symptoms
CD can be triggered at any point in a person’s life by a multitude of things- surgery, sickness, stress, even pregnancy.  Often the disease manifests as severe and chronic gastrointestinal issues of various types, but not always.  There are also skin conditions that can indicate CD.  A more complete list of (somewhat gross and scary) symptoms can be found here.

Diagnosis
Proper diagnosis of CD requires a blood test, since so many of the symptoms are similar to those of other conditions.  What this means is that if you’ve been having gastrointestinal issues, DON’T self-diagnose and experiment with removing gluten from your diet.  You need to be eating gluten and have it react in your body in order for the blood tests to be reliable.  If you’re concerned, go see your doctor!

Treatment
Celiac Disease is incurable.  The only currently viable treatment is to eliminate all gluten from the diet.  Medication is not generally needed.  Most research being done is still focusing on the cause of the disease, however there are some “fake wheat” products being developed.  There is also some research going on to design medications that could help people with CD to consume gluten, similar to the pills available for lactose intolerant people.

The Gluten-Free Industry
With the increased awareness and diagnosis of CD in recent decades, the gluten-free food industry has been born and experienced tremendous growth.  As with any diet that limits what you can eat, many people see a gluten-free diet as a more healthy lifestyle (even though this is not necessarily true- similar to the Atkins diet), and so gluten-free has become significantly mainstream.  According to a report in FoodNavigator-USA.com, sales are estimated to rise to around $2.6 billion by 2012.

Lifestyle
Most of us probably think about living gluten-free and shudder.  No pasta or pizza?  No BEER?!!! How do people with CD do it?  It’s actually not so bad.  In addition to the growing amount of gluten-free food out there, a community network has sprung up to help people navigate successfully as a gluten-free person.  Celiac Chicks is a fun resource guide to a “hip & healthy gluten-free lifestyle.”  There are numerous Web sites like CeliacTravel.com to show people how to explore the world and be gluten-free at the same time.

For those do-it-yourself-ers, gluten-free cookbooks are now plentiful.  Check out FriendsEAT’s treasure trove of gluten-free recipes, such as fudge brownies, Thai chicken wraps, and granola.

And, like anything else in our society, the difficulties of living with Celiac Disease are acknowledged, minimized,and  mocked using humor.  Here are some gems I found on Gluten-Free Kathy’s Weblog:

You know you have Celiac Disease if…

• At least once a day you fake a smile and say, “Sorry, I can’t have that.”
• You bring your own soy sauce to the sushi restaurant.
• Your idea of extreme risk is ordering food off of a menu.
• You weep at picnics, parties, receptions and fast food joints.

And here are some funny t-shirt designs from miztees.com:

On May 9, 2009, Melanie Frazier set a school record for the long jump at the Massachusetts State Track Coaches Association Invitational Meet.  She placed third in the 100 meters, qualifying her for the Division 1 state meet.
Two weeks before that, she was having trouble holding down food and feeling decidedly lethargic.
A Celiac Disease diagnosis helped her change that, and with her new knowledge she is adjusting to a gluten-free diet and back to being one of her state’s top athletes.

It’s not an easy life, but people who learn to live with Celiac Disease generally end up more health-conscious and well-disciplined.  If you’ve been having gastrointestinal problems and are curious about CD, talk to your doctor.  And for more info, check out the Celiac Disease Foundation’s Web site.  I did.