In the 2 short months since my diagnosis, I think this is the biggest misconception I have found. There are indeed thousands of people who suffer from "gluten intolerance" and they have to be as careful with their diet as I do. But the difference between suffering from gluten intolerance and having Celiac Disease is what it does to your body. The physical symptoms may present themselves in the same manner a great deal of the time. But with Celiac, not only are you suffering the physical symptoms of having ingested gluten, you're also damaging your internal organs and increasing your risk for cancer. Most people with a gluten intolerance can ingest small amounts of gluten and not suffer any symptoms. People with Celiac, people like me, can't. We will get sick. Very sick. We will miss days from work or from school. We'll suffer gastrointestinal demons that you can only imagine. The intense stomach pain; the brain fog; the extreme fatigue. It truly is as if we've been poisoned. The scary part is that with all those physical symptoms that most people can see or get an idea of, is the damage that is being done to our intestines and our bowel that can't be seen. Every time gluten enters our system, a little more damage is done. Damage that can lead to cancer; even death. So it may seem like a simple thing "Oh you just can't eat bread", but it is so far removed from just giving up bread; we wish that's all it was.
When I started this journey I thought that it was mine and mine alone. But on November 27, 2013, the day Dr. Newcomber said "You have Celiac Disease", my husband turned to me and said "We're in this together. You're gluten free; I'm gluten free." Our daughter began researching recipes and different items where gluten is hidden. Our son said "I'll get tested for it but I'm not eating that crappy food!" Don't you just love guys?? You see, our children have an increased risk of carrying the gene that causes Celiac. In their lifetime they will probably be afflicted with this disease. Hopefully in MY lifetime, I can get a lot of the legwork done for them so it will just be a way of life when and if their time ever comes.
Then there's the support groups on Facebook. People I've never met; people I will probably never meet. But friends now. From Rhode Island, to California, to the United Kingdom. People coming together to give support, share recipes, answer those embarrassing questions we're afraid to ask anyone else. People who can say "Been there, done that."
And finally there's my friends. An envelope appears in the mail with recipes cut out of a magazine; an "awareness" bracelet appears from Florida; for the Christmas party at work gluten free food is brought in so I don't feel left out; recipes posted to my FB page; text messages and phone calls on days I'm sick. Offers to drive me to the dr., the hospital and be with me while I'm having test after test done. True friends.
I knew last year my life would change. I had just become a grandmother; I had turned 50 and I was finally getting healthy and in great physical shape. "Tell God your plans and sit back and watch Him laugh!"
That's ok, God. I know you're in this with me too. There's a plan and a purpose for all of this that I may never know. It probably has nothing at all to do with me. I'll suffer for whatever will glorify you.
There's going to be some bad days ahead; but soon they'll be further and further apart. The depression will subside; the cross contamination will happen less; I'll be able to wean off the steroids and I'll be able to cook and eat without thinking twice about it. Until that day comes, it's a journey. Every minute of every day.
But what's that old saying....."It's not about the destination, it's about the journey". The journey isn't always pleasant; it isn't always about sunshine and rainbows. But with a loving family and supportive friends, the journey will be full of laughter and music and dancing. A few tears here and there, but mostly, we'll dance!
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