“Somewhere, something incredible is waiting to be known.”—Sharon Begley.
Rome IV for Aerophagia—A Diagnosis of Junk Science
Back at the medical library, I quickly discovered there was a Rome II entry for aerophagia as it was called, but it made no sense. Here are the criteria:
At least 12 weeks, which need not be consecutive, in the preceding 12 months of two or more of the following signs and symptoms:
(1) Air swallowing; and
(2) Abdominal distension due to intraluminal air; and
(3) Repetitive belching and/or increased flatus.
These criteria are obviously ridiculous. The first criterion says you have aerophagia if you have air swallowing. Uh, duh, but aerophagia and pathological air swallowing are the same thing, It’s a circular definition. It’s like saying you have cirrhosis of the liver if you have a cirrhotic liver. I can’t emphasize enough how stupid this sounds.
So let’s discount criterion 1. It’s meaningless. Criterion 2 also makes no sense. While one could have distension either due to some other cause concomitant with aerophagia or there could be a common mechanism, aerophagia on its own cannot cause distension, so toss this criterion, too. I suppose the same rules applies to belching. That is, aerophagia on its own cannot cause belching, either. That leaves increased flatus, though it doesn’t specify by just how much. Of course, increased flatus can have other causes, namely, the malabsorption I spent nearly two years pursuing.
The Rome criteria have been revised twice since that time and now they’re up Rome IV, but authors seemed to have gone out of their way to leave the criteria just as nonsensical as it was in II. Indeed, criterion 2 has been morphed to have an odd time dependent notion. That is, it says the abdominal distension increases during the day. What exactly happens after the day ends is unclear and one has to wonder why these children (oh, yes, apparently the criteria are restricted to children) haven’t been subject to intensive motility investigations given their problems clearly are motility-related, and I wouldn’t be shocked if none of them actually had aerophagia to begin with.
It became pretty clear pretty quickly that what the medical community was calling aerophagia had, in fact, nothing to do with the actual condition of aerophagia, and the “real” aerophagia was completely unknown to medical science. We decided to write a formal case report, and you can refer to the article referenced below.
In case you were wondering, the Aeolus in MR Aeolus, the second author, was my nom de plume. It’s the Greek god of the wind.
So my hunch was right all along. Sir Arthur Conan Doyle used to say as Sir Sherlock Holmes, “when the impossible has been ruled out, whatever remains, no matter how improbable, must be the truth.” That is to say in medicine, when we rule out all the known conditions, the only thing that remains is something that medicine has not previously encountered: a new disease. Aerophagia is a new disease.
At one point, I reached out to Nicholas Read, a GI in England who is known for his, how shall I put it, unconventional opinions, and he replied that the mechanism of aerophagia is a leaky upper esophageal sphincter, which was due to “unresolved grief”. As silly as that sounds, I had my sphincter pressure tested, and it was completely normal. If you think about it, having a “leaky” sphincter wouldn’t make a hill of beans difference in how much air gets put into the stomach. Consider an open uninflated balloon sitting on a desk. Its open end corresponds to an open upper esophageal sphincter. It doesn’t fill itself spontaneously, does it?
To get the gargantuan volumes that aerophagia produces must require a pump of some sort. So it reasonable to hypothesize that the name air swallowing is, in fact, accurate: swallowing itself has to somehow be involved. It’s the how part that is a complete and total mystery.
What might a rational, scientifically-based set of criteria for aerophagia look like?
First, the person experiences consistent, frequent farting, at least 50 times a day and nothing can stop it.
While abdominal distension can be present as either an independent motility aliment or caused by the same underlying mechanism, it is not a criterion since aerophagia itself cannot cause it.
I cannot emphasize enough that frequent farting is the sole symptom. The aerophagic “act” itself is a super subtle alteration in the swallowing mechanics that cannot be directly observed by any means.
Second, the patient’s farts should be collected by rectal tube/hydrogen breath bag, confirming the volume (multiple liters per day) and then analyzed by gas chromatography and mass spectroscopy and determined to be made up of almost exclusively of nitrogen (oxygen-consuming bacteria throw off the oxygen values).
Finally as an added measure, gas produced by the stool should be similarly subjected to analysis and confirmed not be a source of that nitrogen. (Despite what you may read in the literature, the human gut bacteria do not produce nitrogen, so this test is just to appease those having trouble believing their aerophagia is the source of their flatus.)
Obviously, it would be difficult to diagnose patients this way as this level of involved testing is way beyond the reach of most gastroenterologists.
Alternatively, one could try X-raying the gut, but be careful here. Abdominal distension due to nitrogen buildup does not automatically mean aerophagia is the cause. So long as nitrogen ingestion exceeds nitrogen excretion, distension will occur. So if nitrogen excretion falls to near zero (due to some motility ailment), the person will experience distension despite not having (pathological) aerophagia.
If, however, the X-ray shows even gas distribution throughout the bowel, aerophagia is a likely diagnosis. We can see this in an X-ray I had performed just as the aerophagia was getting started. An X-ray I had done the year earlier did not show any evidence of it, suggesting that the intervening weird GI infection of 1995 was somehow causative.
In this picture of pure pathological aerophagia, air is evenly distributed across the whole bowel.
About one year after this discovery, I began working with a medical psychologist who supposedly had experience with aerophagic patients. Of course, he was using the archaic definitions in the literature where the purported mechanism was that somehow aerophagic patients were swallowing too frequently. However, based on what we knew about how frequently a person swallows and how much air they pass, I was able calculate that to produce my flatus, I would have to be swallowing once every six seconds twenty-four/seven for the last two years, which is obviously ridiculous. Nevertheless, I decided to entertain an experiment. For 24 hours, I collected and measured my flatus while I was hooked up to a swallowing monitor. The results were as completely expected. Totally normal swallowing rate as I passed prodigious amounts of flatus. In addition, he had someone physically “watch” me swallow air. Of course, there was nothing to see. He ended up quite frustrated that the real aerophagia turned out to be outside the scope of his “expertise”.
At this point, I accepted the aerophagia problem would never be solved. I was essentially the only human on Earth at this point to have been formally diagnosed with it, and I could see no way with present medical technology to even research its nature let alone provide a treatment. Clearly, whatever neurons controlling the swallowing mechanics were functioning improperly in an extraordinarily subtle but significant way and nothing short of replacing them would solve it, a solution that is likely to always be a fantasy.
I will have more to say about aerophagia later, but let’s back to my life in the spring of 1997. The last I left it I was down to one meal a day on the verge of having to give up food entirely. During the day, I was dealing horrible symptoms that were clearly now being driven by the tidal waves of air continuously being pumped into my gut. During the late evening, I would eat dinner, remember that lamb and rice, and watch TV. But it didn’t take long for me to make a mind-blowing observation.