I was a pretty healthy kid growing up, nothing too out-of-the-ordinary that raised a red flag. In hindsight, I can probably chalk up some of my ongoing childhood health issues – eczema/skin rashes, poor dental health (cavities and gum disease) and “nervous” stomach – to undiagnosed Celiac Disease. But nothing was “bad enough” to concern a pediatrician.
I grew up, graduated college, and moved to Columbus, Ohio to start my first professional job. Everything was looking up for me and my career as a management consultant with a Big 6 consulting firm. Within a few years – circa 1988 – my “nervous” stomach and related intestinal issues became increasingly problematic. (Brace yourself, TMI ahead.) Symptoms including bloating, gas pains, loose fatty stools and bouts of diarrhea led to more frequent visits to the doctor.
Was It Really IBS, the Diagnosis du Jour?
My PCP said I had Irritable Bowel Syndrome (IBS), which at the time (circa late-80s) seemed to be the diagnosis du jour, especially for a young professional working a stressful job and the associated long hours. No further testing was done. No specialist, for example, a gastroenterologist (GI) was suggested. Instead, I recall some of my instructions being the following: avoid raw fruits and vegetables, no popcorn, bulk up on whole grains and fiber content – that is, eat more whole wheat and other fiber-building grains. Ouch!
I carried on with life dealing with what I thought was IBS for the next several years. During this time, I got married and had two children. As I reflect back, I was fortunate to have two relatively healthy, non-eventful pregnancies since some females with undiagnosed Celiac Disease aren’t as fortunate. According to medical reports, undiagnosed Celiacs may have a higher chance of infertility or miscarriage than the general female population.
Still, the IBS took its toll on me and became more and more debilitating. It was hard to go out socially or even run errands. There’s a constant need to be near a bathroom since I never knew when “an episode” was going to hit. I truly never associated my “episodes” and general state of just “feeling blah” with my diet or anything in particular I was eating. I continued bulking up my diet, including supplementing with Metamucil or Citrucel (pretty disgusting stuff! Sorry P&G and GSK).
Celiac Disease: If I Only Knew Then What I Know Now
Shortly after the birth of my second child, my health began steadily going downhill. A number of other health concerns cropped up:
- Tremendous lack of energy and constant tiredness
- Miscellaneous aches and pains, including excruciating upper back pains (eventually diagnosed as fibromyalgia)
- “Concerning” lab results that included elevated antinuclear antibody (ANA) levels. This sent me to a rheumatologist, who ruled out rheumatoid arthritis but put me on lupus watch.
What? How can this be? My sole knowledge of lupus was a movie called Gross Anatomy I had seen several years earlier starring Christine Lahti. In the film, she is a medical professor with a mysterious illness that turned out to be lupus. Spoiler alert: It was terminal; she died. So you can only imagine hearing “lupus” as it pertained to my own health was downright scary stuff.
This is my story. Stay tuned…
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Sandy Skrovan, diagnosed with Celiac Disease and gluten free since 2001
Founder and Research Director, GlutenFreeRetailHQ.com
Want to drop me a line? Email: Sandy@GlutenFreeRetailHQ.com