This next post is revised from an original February 2012 post.
My Celiac Journey: Where it all Began
The Journey to an Answer started with a POP, followed by PAIN
I was 38 years old and discovered that I had severe osteoporosis. Specialists, tests, appointments, questions. I had always felt (and had asked a few times, even before finding out I had osteoporosis) that I wasn't absorbing nutrients properly. That question always got blank stares, like it was some foreign concept. My thyroid med continuously increased. (hmmm....once again, "could it be because I'm not absorbing?" - continued blank stares.) I bruised easily (very easily), had odd cravings (ice chewing, the smell of gasoline), leg cramps, fatigue, very low cholesterol. I was thin---very thin. It was a rough (and odd) time!
I did not feel well, my marriage was rocky and continued to go down hill. My health problems and questions continued to go unanswered. "You're SO thin," was something I never got used to hearing. Many think the thin person who can eat and eat and eat "lucky." Having been there, I can tell you---no! I did not enjoy it. I remember feeling OK when I woke up, eating what I thought to be a "healthy" breakfast of Raisin Bran before the day went downhill as it progressed. Never did I connect how I felt to a particular food.
One day, some time before noon, I was just tired of that achiness and fatigue. I was in my car, on my way to or from somewhere and just started crying. The next thing I knew, I was in my doctor's office, without an appointment, requesting to speak with her. She insisted nothing was wrong, making me feel very foolish.
It was good to finally, eventually, find out I wasn't "crazy." But this still took some time.
Fatigue continued to increase ~ bone density continued to decrease.
And then, in September 2000, my semiannual appointment with my bone specialist found that I had lost another 4% bone density (in just six months time!) for a total of 7% loss that year alone. What was wrong?!!! It was frightening, to say the least. In walked a nurse with a paper in her hand. She told me they were just given a grant to do a Celiac / Osteoporosis study. The paper listed symptoms of celiac (some of which I had, some not). "Do you want to take part in the study?," I was asked.
My answer: "YES! YES! YES!" My bone specialist told me she didn't think I had celiac, but to go ahead and get tested. Months later, she eventually referred to me as their poster child for celiac/osteoporosis due to my incredible improvements.
My blood test was positive (VERY positive), as was the intestinal biopsy.
I was elated to get the news, to have an answer. I was actually the first osteoporosis patient in the study to test positive for celiac. Whoo hoo! Life became a new adventure, with promises of good things to come. I was on cloud nine (with apprehensions). An answer was phenomenal. I felt I could do whatever it took to get my health back (if I ever had it to begin with, that is.) But I did go into 'mourning' two weeks after starting my new gluten free lifestyle, as I started to realize how difficult eating would actually be, and as I started to realize all the foods I had to do without--- or thought I'd have to do without. Eating gluten free back then wasn't what it is now. But I worked hard to find recipes and to learn how to shop and cook. And it was all so worth it!
Here I am, featured in this article printed in a Washington University, St. Louis publication, Outlook: A Most Brittle Hypothesis (I was Debbie Adams at the time).
When I was diagnosed with celiac, I stopped taking the osteoporosis meds (that weren't helping anyway). I regained 15% bone density in the first year alone----just by being gluten free!
I'm now healthier and stronger than I was when I was diagnosed in 2000, at age 40.
Of course, osteoporosis wasn't my only symptom of celiac; far from it. I soon discovered that most of my first 40 years was filled with symptoms. But that is just too much to write in a single post. More to come.