“Somewhere, something incredible is waiting to be known.”—Sharon Begley.

Then, suddenly on May 22nd 1996, another earth shaking event occurred, this one an order of magnitude beyond that first one and one that would last for the foreseeable future and beyond.

 

First, whatever was going on riled up my periodic diarrhea enough to make it a now frequent occurrence. Just what was going on? It was so odd, I didn’t really know. I was feeling a new abdominal discomfort, that’s for sure. But once again, it was weird. This time so weird that I was at a loss to describe it. I just labeled it “pain” even though it was actually not. Second, that other weird discomfort from two paragraphs ago had also returned. For this too, I had no good description, and I just ended up calling it pain too even that probably wasn’t quite right either. Both now were near constant with little respite as far as I could tell.

 

I immediately felt it was time to get some diagnostic action going. First, I had several stool samples done for parasites, but they returned negative. A complete celiac disease antibody panel also returned negative. Since these symptoms were now combining with flatulence, I wanted to think there was a connection despite the fact that I was otherwise mostly symptom-free for the last nine months having just the flatulence. Since it had to be caused by carbohydrate malabsorption, the next series of steps were to document that. So I asked my GI order a D-xylose test. This involves drinking a special sugar that is only partially absorbed and that amount is measured in the urine. 

 

A little aside, when I actually asked my GI doctor for this test, his response was rather amusing, “What does the test entail?” Yes, my GI doctor didn’t know how to do the test, and I had to explain to him, he orders it; I go to the lab, pick up the bottle of sugar and a cup to pee in, etc. To further compound ignorance all around, when I called for the result, I was initially told the result was “normal”, but when I asked for the value, the nurse gave me the concentration, which was not the result. I actually had to call the lab and ask them for the result. 

 

Anyway, the result was, in fact, completely normal, and that was not what I expected.

 

So having already tried my hand at extreme dietary measures, I thought another experiment was in order. For the next twelve weeks, I would consume not one gram of carbohydrates. Not one. I actually found this easier to do than you might think. But this result was also not at all what I was expecting. Nothing changed. The weird abdominal sensations continued completely unabated. The flatulence was just as intense as it had ever been. I did notice, however, that since the start of the weird sensations, the pattern of release had changed. It was no longer every seven minutes, but became more staccato-like. For example, there were times with a lot of gas, then it would quiet for a bit, then pick up again. Something about my gut motility had changed. Anyway, at the end of summer, I had a 72-hour fecal fat study where I collected my stool for three days in a metal paint can to have it analyzed for unabsorbed fat. Once again, the result was dead on normal. This was quite baffling.

 

I decided to fast completely for a weekend and see what effect that had. Once again for the flatulence, nothing changed, but the weird sensations were slightly improved, so I decided to return to my normal diet, but pull lunch. So in September 1996, I was officially on two meals a day going forward. It was enough of an improvement to be worth doing.

 

It was also an important piece of information. My sick gut was telling me it’s not what you eat that mattered, but how much. For those of you in GI, there’s been a resurgence in using dietary therapies like the low-FODMAP diet as therapy. Here we see that such an approach is completely incompatible with whatever is ailing my gut in particular. It was the beginning of what would become a continual disconnect between my condition over in this faraway corner, with a treatment aimed at treating some imaginary condition I didn’t have in another corner.