In the 14th century, William of Occam issued his now famous declaration, which has been guiding science ever since.
"one should not increase, beyond what is necessary, the number of entities required to explain anything."
Following this principle, I have assumed, for 7 years, that John suffered from one underlying disorder. The symptoms and management of said disorder may be quite complex, but there should be a simple, unifying theme, the way Newton's theory of gravity explains the orbits of the planets and even the chaos of multi-body interactions. However, Occam did not anticipate evolution, which creates structures far more complicated and convoluted than anything found in the "natural sciences". And so, after 7 years, I must report that Occam has failed us, though not completely. John does not have a single disorder, but I'm not ready to posit a hundred, or even a dozen unrelated maladies. Let's see if we can keep it down to two.
Problem #1 is a glutamate sensitivity. This is probably a polygenic predisposition, inherited at birth, and unlikely to abate. I've written about this before - in fact he's been on the glutamate diet before. (Visit <TruthInLabeling.org> for more details.) We know his sister has a full blown migraine reaction to MSG. But restricting MSG didn't help, or it didn't seem to help, because of problem #2.
As you know, fermented foods contain glutamates. Thus we avoided all fermented foods when we were implementing the glutamate diet. However, problem #2 is an opportunistic microbe that lives in his intestines and ferments the foods he eats. I'll say it again: the bacteria ferments his food, producing glutamates in high concentrations. Keeping glutamates out of his diet hardly mattered, as he was producing his own. We couldn't effectively treat problem #1, because it was overwhelmed by problem #2, so we set the glutamate connection aside. Then, when we suspected a carb connection we placed him on a low carb diet, but this produced only a slight improvement, because, assuming only one disorder, we were once again giving him foods with glutamates, such as cheese, soy sauce, vinegar, etc. Treating either problem alone was almost futile, thus we concluded neither was in force. We scurried off in other directions, such as failsafe, feingold, mcs, etc, which were all blind alleys for us.
The smell, and the corroborating blood test, was the smoking gun for problem #2. It could not be denied. But in September John had some very bad weeks, yes weeks, and I never smelled the butyric acid. Something else was amiss. We restricted his carbs, and that (mostly) managed problem #2, yet something else was terribly wrong. I went over a month's worth of logs, and with problem #2 in abeyance, the data pointed to problem #1.
Remember the failsafe diet? It seemed to help, for a while, and then it blew up. Well amines and glutamates go hand in hand. Both are created by fermentation and modern food processing techniques. By restricting amines, the failsafe diet effectively addressed problem #1, but the unfettered carbohydrates aggravated problem #2, and within a few weeks the microbial colony was huge, generating a sea of glutamates. I'm starting to see the big picture. Clearly we must address both problems in parallel.
If you've ever been on a carb restricted diet, you know that it is a daunting protocol. In addition, the glutamate diet is complicated, and very unforgiving. Trying to manage both simultaneously is a frightening prospect, though I dare not share my trepidations with my son. "You can do this." is the message I need to convey. But I don't know if he's ready, or willing. He loves to eat out, and he loves sweets, and starches, and processed foods. And he wants to be just like everyone else. It's not going to be easy.
After 7 years I think I understand his disorder(s), yet the only treatment seems to be the ancestral diet, which is nearly impossible to achieve in the United States, even if you are a highly motivated adult. Grapes are ok, unless they are sprayed with Auxigro, which is permitted under California law. The fresh vegetables that you cooked two days ago are fine, unless they have sat in a damp dark environment in the fridge. Pasta and potatoes are ok, unless you step across a relatively low carb threshold, whence the microbial colony rises from the dead, like something out of a horror movie. You almost have to grow your own food and eat it off the vine every day. Meantime, John wants to eat the processed school lunches, just like everybody else. He dutifully avoids sweet treats and high carb meals, yet for all his hard work and determination, he cannot imagine the chasm between his current eating habits and where he needs to be. He's got a long way to go; we've got a long way to go.