So after searching the net for memoirs of persons with celiac disease, I found only a few articles, and one book, by sufferers that were half my age. Wondering where the women who diagnosed late in life were, I rationalized they had busy lives managing kids, or working long hours managing a career than to spend time writing.
The articles I did come across were light and focused on informing people about the disease – one book focused on the humor of new eating patterns. No one seemed to express the suffering that misdiagnosis can have on a person’s development.
My resentments against doctors reach all the way back to high school. The signs of a problem showed during adolescence, but since no one saw the cause as something other than give them iron for the anemia, they stopped there and did not link all the afflictions as a single whole – the doctor’s looked no further when confronted with disparities.
The brain is a delicate muscle. Imagine a brain that doesn’t get enough water – a brain without the nutrients of food – the stress of growing up with a brain that makes thoughts come out sideways. Welcome to my world of a life of physical problems that could never be diagnosed. Auto-immune diseases have genetic dispositions. That means children, mis-diagnosed and growing up adjusting to the dis ease of their bodies trying to cope, never develop to their fullest potential.
I used to blame my parents for my fate in life. Now I blame the doctors.
When I was young, the feelings of being outside of the family circle certainly was part of my life process. Being third birth order of four girls in five years reinforced the feelings of inadequacies. My self-image – the physical comparisons to my early Barbie dolls, and the efforts of my mother to have perfect beautiful girls, which was not normal – clearly indicated that my distended stomach and anemia were greater problems that wasn’t my thyroid.
Doctors told my mother and father my condition was normal – just feed her more spinach! As the symptoms took more voracious turns, the variety of doctors defaulted to genetics – or an anomaly that would pass. They were right about the genetics, but the diseases only multiplied and did not desist. I had undiagnosed celiac disease, and by the time I hit high school, the mental and physical damages were done. Losing my hair should have been a clear indicator.
The doctors escaped culpability by reasoning their diagnoses were right. Eventually, this discomfort had to be quelled, and self medication seemed the logical course of action. I often wonder how many have followed this same course.