(Age: 75 years, male)
My first overt classical symptoms of celiac disease appeared when I was 31, in 1966, in ……. I had had one or two severe attacks of what I took to be a bug from the water supply there, or across the border in France, where I worked with the RCAF. I did not pay too much attention, therefore, to the milder symptoms, which persisted thereafter.
Eight years later, I went for my first annual medical. Since I was at that time part of the military liaison staff attached to the ………., I went to a clinic run by the US Army in .…, ….. The US Army doctor looked at the results of all my tests, and said. “Your cholesterol levels might be high for an African bushman, but they’re off the bottom of the scale for North Americans. You drink a lot though!”
I denied that vigorously, for though I was certainly on the fringe of the diplomatic “cocktail circuit”, I kept a strict limitation on my alcohol intake.
His response was essentially. “Well, you can fool yourself, but you can’t fool me!”
In 1975, after a very stressful job change (still in the military), my symptoms came back with a vengeance. I lost 5 kg in two months, before regaining some stability. Over the next few years, as I moved from posting to posting, and doctor to doctor, I kept getting the same comments on each annual medical. “You are drinking too much!”
Finally, I demanded to know why the doctors thought that. The current doctor was smug about it.
“You have folic acid deficiency anemia”, he said. “That’s caused by chronic alcoholism. Besides, your SGOT (serum glutamic oxaloacetic transaminase) is 186. It should be 35. The alcohol is affecting your liver!”
I fussed and fumed to no avail. They did take some stool samples, but nothing came of that. I was given vitamin supplements.
One newly graduated doctor announced that I had pernicious anemia. When I asked her why my vitamin B12 levels were normal, her only response was. “Maybe it’s not pernicious anemia!”
My confidence in medical schools was wearing thin.
In 1981, fifteen years after my symptoms had appeared, I was posted to ……, north of Toronto. By this time, I had lost 10.5 kg and was beginning to resemble a concentration camp survivor. My ribs stuck out.
The Base Surgeon was a rumpled, overweight, beer-swigging, cigar-chomping military doctor of the old school. He phoned me in my office one day, and said.
“You have target cells in your blood! Come to see me.”
In his office, he proceeded to explain that target cells were caused by lack of folic acid. I spluttered. “I am not an alcoholic!”
To my surprise, he said. “I believe you! But you are sick. I’m going to call in a blood specialist from Toronto.”
In due course, the blood specialist arrived and took me through an exhaustive interview. “There’s something wrong,” he said. “But I have no idea what it is. It isn’t alcoholism, but it looks like liver damage. We’ll have to send you to hospital.”
They sent me to the National Defense Medical Centre (NDMC) in Ottawa. For a week, I went through every test imaginable. They took copious quantities of blood, sat me through xylose absorption tests, fed me barium cocktails and took so many x-rays, I was practically transparent.
At week’s end, they said. “Nothing so far. We’ll have to do a liver biopsy and bone marrow!”
The days leading up to the biopsy were filled with NPO signs. NPO is Latin for “nothing by mouth”. The sign appeared each time a blood sample was required, which was several times per day. It went up before breakfast, before lunch and before supper.
Finally, after I had missed several meals in a row, my roommate yelled. “Will you feed this man! He’s starving to death in front of me!”
There was a general “Ooops!” among the ward staff, and I got to eat again.
NDMC was a teaching hospital. When my biopsy time came, the internist arrived with a small coterie of students. He instructed them on how to anaesthetize the skin, make a small incision, and line up the biopsy needles on its stainless steel guide.
Then he said to me, “Push”.
The idea being that I had to inhale, and hold me breath to push the liver against the rib cage.
I did.
Quickly, he rammed the needle between my ribs, withdrew it, and ceremoniously deposited the sample in a little dish.
“Damn!”, he said.
“What do you mean, ‘Damn’?” said I.
“I missed your liver,” he said. “We’ll have to do it again!
He did, three times.
After the fourth “Damn!” he said to the students. “This man has a large rib cage and a small liver. It’s moving out of the way. We’ll have to open him up for a sample!”
So saying, he shoved a couple of sandbags against my side, and instructed a nurse to take my blood pressure every five minutes until it was stable.
“What’s that for?” I asked.
“Oh,” he said cheerfully. “If the needle accidentally punctured your hepatic artery, you could bleed to death internally. We’re just checking to make sure.”
I felt really good after that, especially since my blood pressure promptly nose dived to 75 over 37 and stayed there for about fifteen minutes.
A little later, the doctor returned and said. “We’ll have to do a mini-laparotomy for the liver sample. We’ll make a five centimeter incision just under the sternum and go in for a look.”
I wasn’t happy about that, but I did have one good idea.
“Could you do the bone marrow while I was under the anesthetic for the operation?” I asked.
He thought for a moment, and said. “I don’t see why not!”
At least I was saved one painful procedure.
Shortly thereafter, I went under the knife. I learned later that they had taken four liver samples and four bone marrow samples. I had a neat zipper of stitches on my abdomen, and a nasty bruise on my hip.
After the initial dopiness, I felt pretty good until I tried to rise. I was immediately floored again by agonizing pains in my neck and shoulders. I cornered an intern and demanded to know why.
“Liver wounds bleed a lot,” he said, “and the blood pools on the diaphragm. The nerves that serve the diaphragm come from the spinal column high in your neck. That’s why quadriplegics can still breathe. When you try to stand, the blood on the diaphragm pulls it down. The cuts are in your liver, but the pain is in your neck.”
It was.
Early the next day, the doctor came by.
“Well, there’s nothing wrong with your liver,” he said, “but you have no iron in your bone marrow at all!”
He was exaggerating, of course, but also somewhat embarrassed at having missed the fact that I was iron deficient anemic as well as folic acid deficient. Folic acid deficiency makes great big red blood cells (target cells), but iron deficiency makes very tiny ones. They had seen the big cells, but missed the little ones. Some pathologist got a rap on the knuckles for that one.
“There’s only one test left I can think of,” said the doctor.
The next day he was stuffing an endoscope down my gullet.
That, at least, was a painless, if undignified procedure.
I was munching a piece of toast for breakfast the following morning when the doctor came back.
“Flat as a pancake”, he said. “You have no villi left!”
I knew what that meant. It was my last piece of toast.
By the end of 1981, I had spent fifteen years of chronic, if usually low-grade illness and three weeks of acute poking, prodding, slicing, and dicing in hospital. Still, those three weeks put me on the road to recovery.
A couple of weeks after I returned to Base, the wife of one of my Majors walked right past me in a store.
When I called to her, she said. “I didn’t recognize you. You’ve turned pink!”
I had indeed. I had been grey-white before.
At the end of six weeks, I had gained 4.5 kg. At the end of a year, I had gained 16 kg (which is about 4 kg more than I wanted!).
Seventeen years later, I’m doing fine.
Clinical Pearls
• Anemia (iron or folate deficiency) is one of the most common presentations of celiac disease.
• Celiac disease is one of many causes of idiopathic “transaminitis” (elevated liver transaminases). The timely diagnosis of celiac disease can spare the patient a liver biopsy. If the liver enzymes do not normalize after treatment with a gluten free diet, a liver biopsy may have to be performed for other associated conditions like autoimmune hepatitis.
• Uncommon presentations of common disorders are more common than common presentations of uncommon disorders. And celiac disease is a COMMON disorder.
