When we left NYC and ended up in a small town in the mountains of North
Carolina, my son was six months old. By that time, I was experiencing
pretty severe cognitive decline. I had no ability to sequence; I couldn't plan
or finish anything. I wasn’t able to concentrate and was often over stimulated.
I became easily flustered and had trouble recalling words; I even started
stammering. Eventually, I had no short term memory and had lost huge chunks of
my long term memory. The worst part was that I was completely aware of just how
bad things had gotten.
Things would get worse, much worse, before I had any idea of what was wrong.
I got close to the answers but was easily derailed and gave up. One of the
first people I met in North Carolina suggested that I may have gluten
intolerance. She told me that she discovered her own Celiac Disease after
adopting her daughter who had many health problems, including a persistent and
mysterious rash. When doctors could not help her baby, she began her own
research and eventually discovered that her daughter was suffering from Celiac
Disease. Through her research, she recognized many of the symptoms in herself.
While her daughter's symptoms first presented in the skin (dermatitis
herpetiformis), hers manifested as neurological problems, some of which she
recognized in me. She suggested that I ask my doctor for a celiac test, a
simple blood test that my insurance company would cover with a referral. I
immediately made an appointment with my doctor and felt a tiny sliver of hope that I might be
close to an answer.
That hope was demolished when my doctor scoffed at my request for a celiac
panel. "Celiac is a wasting disease," he said while glancing up and
down my body, "and clearly, you are not wasting." I still hadn't lost
all of the weight from my pregnancy and was easily 20-30 pounds overweight. He
refused to refer me for the blood test, referring me instead to a psychiatrist.
I was furious for a while but soon became consumed by hopelessness. I don't
remember much of the next two and a half years, only that I was sinking deeper
and deeper into despair.
