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Stephanie's Story

 
5/11/2011

As a teacher of at-risk youth, I thought that perhaps the stress of my job was taking its toll (and it was), but I could not figure out why at the age of 38, I was getting severe migraines and weighed only 100 lbs.  I was catching every cold and virus that I was exposed to until one day I fainted in my classroom.  

An ambulance ride to the hospital, thousands of dollars, and two - yes, TWO - colonoscopies later, I was diagnosed.  After the second colonoscopy, the physician said, "Well, I have no idea how they missed it on the first one, because there is not a villi in sight in your intestines! It looks like a luge!"

I had an answer, but what did celiac disease mean?  Initially, I followed a strict gluten-free diet; then I stopped.

Now, I am 40 and back on the proverbial wagon.  I have been sick for 6 months straight; I had to quit my job because my immune system was non-existent and could not fight off or protect my system from the tiniest pathogen. Initially, I used the cost of food to deter me from a strict gluten-free diet. It is expensive and, let's be honest, difficult to re-learn everything you have ever learned about cooking.  The fact is, I needed a hard kick in the rear to finally snap out of my celiac disease doldrums.

It is imperative to stay on a gluten-free diet.  It means informing and educating everyone you know: your family, friends, your waiter, your grocer, your lover, your dog.  I have found everyone to be supportive, and even though I always taught kids this, no question is ever stupid!  My grocer has been invaluable in getting products onto our local shelves. My fiancé cooks gluten-free for me all of the time, and even my dogs love their new gluten-free dog food.

It has taken these two major health setbacks to realize the seriousness of celiac disease.  What helps is reminding myself that if I eat even the tiniest bite of gluten, all of the other hard work is erased.

I have met fellow celiacs who declare "Celiac is not a disease," but it is!  I had to "retire" from education and now cannot find a job. Where is the livelihood in that? When you feel as if you are dying, and your body is literally starving for nourishment, you DO have a disease.

What has been difficult is finding a doctor who I can trust and who understands celiac better than I do. My own mother, who is a nurse practitioner, still offers me bread and tells me "It's no big deal."

Love yourself.  Ask questions.  Your body is your temple and without it, well, goes without saying.

Here is to NFCA, open discussions, better health and a long, well-lived life!

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