Describe your life prior to diagnosis:
For about six years prior, I went to three cardiologists several times because I was having chest pain. It was the classic chest to jaw and down left arm. It began occasionally but had turned into several times a day and night. I was in my late 40s, about 115 pounds, good shape. My entire life I had anemia. The heart doctors had access to my records, but never once did they bring up that anemia can cause chest pain. I spent over $30,000 out of pocket on multiple tests, one even said it was all in my head. I also had vertigo, heartburn and asthma. I also had pneumonia annually for 15 straight years and then off and on.
How did you come to suspect that you have celiac disease?
When in hospital being prepped for yet another heart test, a nurse saw my chart and noticed how very anemic I was. She knew I didn’t need that heart test but was unable to get the doctor to cancel, but it did start the ball rolling to see a specialist about my odd red blood cells (most were itty bitty but there were some that were huge). The doctor was then checking me for leukemia, however, I remember saying, “if it’s leukemia, wouldn’t I be dead by now? I’ve been having mystery chest pain for about six years.”
Somehow this led me to an endoscopy. However, it was four years later that I learned just before my endoscopy, one of my labs also included a celiac panel. I was never called with those results, though they said they mailed them to me. Never received them and I should have been called…I was literally off the charts positive. Though I had been diagnosed, I was seeing blood test results for the first time four years later.
The doctor who did my endoscopy diagnosed me. When I came out of procedure he said he’d never seen such flat walls. When he said the word “celiac,” I seriously thought he said “silly act.” I was told to eat gluten-free and nothing more. No education whatsoever.
How long did it take for you to get diagnosed since your first symptoms and what (if any) challenges did you face along the way?
I was diagnosed at age 54 and, if being honest, I would say I had celiac as early as four years old. But the chest pain is what ended up leading me to diagnosis, so if I’m just counting that symptom, then six years. Just think of the damage that was being caused to all of my organs during that time! Those doctors should have known on my very first visit to further check out why I was so anemic.
Do you believe anything could have sped up your diagnosis?
Absolutely! Those cardio docs should have known on my very first visit to further check out why I was so anemic. Now we can just ask Google, “Can anemia cause chest pain?” It’s troubling that three of them chose to run costly tests instead of applying what should be basic MD knowledge. Also, I have been anemic for most of my life, so all those general doctors I saw for all those years that attempted to treat my anemia but nothing helped…and then I started telling them about my chest pain….it is very frustrating and sadly has turned me into someone who does not trust a doctor. I always do my own research now.
Describe your experience with living with celiac disease:
I’ve spent hours and hours, weeks, months, years doing celiac disease research. Because of this, I know to not take chances when it comes to food. I know I should never get cross-contact. Because of this, we never eat out unless it’s a dedicated place. Also, I’ve used my education to teach my loving friends and family how to safely feed me in their homes. So I do get to eat at a handful of other people’s homes. For this reason, I am a huge advocate of celiac disease education. Once I knew what I was talking about, it made me very confident in sharing my knowledge with family and friends, and I want everyone with celiac disease to have this kind of support.
The hardest part is socializing. When friends are meeting up at a restaurant, I eat first…I make it work, but I miss the ease of my socializing. Let’s face it, we eat and drink at pretty much every social event.
