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Summer 1977: When I Had Celiac Disease, Only Nobody Knew It

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I turned 16 the summer of 1977. I was an airplane freak with aspirations of being in an aircrew; being a pilot, at least in the military was not at the time possible as I wore glasses. Going against the feathery haired disco grain at that time I was a member of my high school’s Navy Junior Reserve Officers Training Corps program and a cadet in the local Civil Air Patrol squadron. Ah, those were heady times indeed with the Cold War going and a busy nearby Air Force base and Naval Air Station that had a variety of aircraft buzzing overhead. If I only knew …

During that summer our entire soccer team played for the YMCA. Our high school coach insisted as we really needed the practice. We were pretty terrible. I loved soccer, there wasn’t the “politics” of football and the way I played it was quite physical. I once came out of a game with somebody’s footprint on my chest. I had no idea how it got there. But there was something wrong, for some reason I could not quite gin up the energy or interest that I normally would have to play. I found I had to sit in front of an air conditioning vent and slap myself with a wet rag to get motivated. And on the field, I wasn’t as aggressive or energetic as I had been. Our coach noticed this and moved me from center halfback to the right fullback position which was a less demanding position to play.

Then there was also the increasingly worsening diarrhea. It was getting bad, becoming routine whenever I had a BM. It had a peculiar smell, like wet bread or maybe beer. My parents slowly began to notice as well. Mom was concerned, dad thought it was all in my head and coming out of my ass. On a visit to see my grandparents the next state over, my aunt took me with her to the hospital she worked at. Her husband was a technician and for fun they did a blood draw and he analyzed my blood sample. My white count was sky high — so high that he did another to double check. The white count was indeed elevated and he suggested I see a doctor, soon, as there was something wrong. So of course we ignored it.

That fall when school started I had gotten worse. I was losing weight now and the diarrhea was nonstop. Mom finally took me to a doctor, a young new guy, and he asked what drugs I was doing. I was perplexed by this question as I was a ROTC CAP kid and had never tried anything beyond Tylenol. That bias of his was a missed opportunity to start a real investigation into what exactly was making me sick. Instead I just soldiered on.

As many of us ROTC kids were also in the CAP, we organized joint rappelling trip to a cave that was maybe an hour north of where we lived. By now I was not doing well at all, but gamely went along. Once at the cave, I had to find a place to have a BM. I found a boulder field above the cave and dropped my pants and braced myself between two big rocks and had diarrhea and vomiting. At some point I passed out. My buddies found me, cleaned me up, carried me to a car loaded me up and drove me home. On the way I woke up long enough to vomit out of the window before passing out again. The next day I was admitted to the hospital.

The doctor who admitted me thought it had to be cancer. So that’s what he looked for: upper GI, lower GI, blood work, stool samples, more blood work, more stool samples, enemas, laxatives, proctoscope exams, a bland diet, no visitors as my friends parents thought I might be contagious, and no evidence of a tumor. My doctor was scratching his head. One morning he came by my room and asked me to follow him to an exam room. I was wearing a gown and tube socks. Tube socks were big in ’77. He patted an exam table and told me to hop up, head down, ass up, and he was going to do an exam that might be a bit uncomfortable. Remember, this was 1977. Things were different back then. The nurse squeezed what looked like an entire tube of KY onto his gloved hands and he began to lube my rectum. It was uncomfortable to say the least. My gown had fallen down and my malnourished body shivered, so he told the nurse to put a drape over me to preserve some of my dignity. I was really too sick to care, but the drape was warm which was nice. Then he took the gloves off and picked up something that looked like it belonged in a Frankenstein movie.

It was glass, with a tapered end and a plunger, like a big syringe. “Take deep breaths, relax” he said and slid it inside. I gasped. In my mind I saw a whole bag of little green plastic army men stabbing my intestines with their tiny but sharp bayonets, I cried out in pain, and he muttered that it wasn’t working and slid it out. Seconds, and I mean like maybe three seconds later, I felt diarrhea coming on and I could not stop it. I yelled, “Doctor! Look out!!” and PHHBBLATTT all over his chest. The smell was horrendously bad and the nurse ran. The doctor just stood there looking at his used to be white coat and said, “Well. Go ahead and get cleaned up and head back to your room.” I began to laugh uncontrollably. I couldn’t help it. So much had happened that I needed a release and this was it.

A month later, in a different hospital with a new doctor, a biopsy of my duodenum was done and an immediate diagnosis of celiac disease was made. That was good. That was bad. That diagnosis killed my military aspirations. They don’t take anyone with celiac, ever. Combined with my nonverbal learning disability which went undiagnosed until I was 52, I haven’t had much of a career at anything.  However, the diarrhea stopped with the gluten free diet I was now on. Weight began to come back and so far has not stopped over 40 years later. I had to have a special lunch at school that was really nice, a huge hamburger patty with onions, slaw, and a vegetable. The diet proved to be problematic as far as friends and family went, with no pizza, no beer, etc. But things have improved over the last 10 years. I had my first beer when I turned 50. It was gluten free and I liked it. Things keep getting better with the diet and I keep getting larger accordingly. Making up for lost time or something I suppose.

Photo credit: Joncee2015/Getty Images

Originally published: January 9, 2021
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