It only took a couple weeks to realize that the ibs diet was not the answer, though it did provide valuable insight.
One day John had a terrible reaction to an ibs-safe meal, right out of the cookbook. It included banana and mango, two fruits that don't contain much fiber. Well he went crazy, just like he always does whenever he has fruit.
There's something about fruit, and it isn't fiber or amines or salicylates or yeast/mold, so what is left? Simple sugars! The variety of fruits is amazing, and we've tried them all. Some have more of this and some have more of that. Some are brand new to him, exotic fruits from other countries. He couldn't be sensitive to all of them. It must be the simple sugars.
Ironically, starch is not as bad. Therefore it isn't a blood sugar regulation problem. Refined grains often have a higher glycemic index than fruit. In other words, grains dump sugar into the blood stream faster, and are more likely to cause an insulin spike. Just ask a diabetic. Yet he does better on rice and noodles. This became clear when we put him on the ibs diet, which promotes starch and restricts fruit. How can sugar be bad while starch is good? Especially since a starch molecule is merely a chain of sugar molecules strung together, and the first thing we do, in our intestines, is break that chain up into its sugar components. I don't get it.
Remember I was convinced John had candida, then I was sure he didn't. Well maybe he does after all. Parasitic yeast thrives on sugar, but does not do as well on starch. And remember that horrible breath, like fermented grain? That's a classic symptom of a candida infection.
Then again, all the yeast books tell you to avoid both sugar and starch. After all, starch turns into sugar in short order. One paragraph in the Crook-book says some patients tolerate starch, but other than that footnote, starch and sugar are both forbidden by the various candida diets. Yet starch seems to help my son. I don't get it.
If it's not candida, what is it? Fungi aren't the only microbes out there. I began to suspect bacteria. Perhaps an unwelcome colony thrives on sugar, but doesn't metabolize starch as well. Remember, it's always a contest. I'm sure all forms of intestinal bacteria can make a living on starch, but if the good bacteria metabolize it more efficiently, they can out-compete the bad, and John's symptoms will abate. And what do the bad bacteria do? They probably dump toxins into the intestinal tract, and on into the blood stream. I have no idea what kind of toxins are involved. Actually these byproducts might be harmless to you or me, but they derail John's neuro-transmitters and make his life miserable. Amines are certainly a possibility. Some bacteria convert tyrosine into tyramine and histidine into histamine etc. I found <an interesting paper> that describes this process. Oddly enough, the researchers found a marked reduction in the presence of amines when starch was added to the mix. They don't speculate on why; they are merely reporting the outcome of their experiment. In their conclusion they state that amine synthesis by internal bacteria can be reduced by making simple changes in the diet, i.e. less protein and more starch.
We put John on a high starch low sugar low amine diet, and again, he is doing very well. We'll see how long this lasts.
AHA!!
There is a critical difference between starch and sugar. Starch is a polymer of glucose while sugar is a dimer of glucose+fructose. Maybe he is fructose intolerant after all. Remember I dismissed this theory a year ago, because it is usually a devastating illness that puts babies in the hospital the minute they drink their first glass of juice. Obviously John doesn't fit this profile. Still, it was hard to argue with the data. There may be new and undiscovered ways to react to fructose.
Here's another thought. Perhaps the fructose wasn't being absorbed through his intestines. He never had a chance to metabolize it, properly or improperly, because it never got into his blood stream. In that case, the fructose would feed the aforementioned microbes. I found an <interesting page on candida>, the first new idea regarding candida to come along in 25 years. It suggests that starch is often tolerated, and sometimes it helps the patient recover. Conversely, sugars are a problem because of their fructose content. This looks exactly like John, though I still think his unwelcome guests are bacteria, not fungi, for reasons that will be given later.
Mal-absorption and improper metabolism are two different things. Fructose intolerance is a metabolic, genetic disorder that probably would have made him deathly ill at a young age, as fructose intermediates built up in his liver. In contrast, fructose mal-absorption would simply pass sugar through to the colon, and lead to symptoms only when an opportunistic microbial colony took hold. This would depend on the nutrients eaten over the past few weeks, the type of colony, his reaction to their non-human byproducts, and the permeability of his intestinal walls to these molecules. The smell that was in his breath and on his skin was surely a cocktail of alcohols and aldehydes and ketones produced by the incomplete metabolism of sugar in an anaerobic environment. It was horrible, and so was his behavior. Methane and carbon dioxide are also produced, which is why John always had gas for no apparent reason. I use to think this was trivial, a rather petty thing for his teachers to worry about when compared to his real problems, but now I think this symptom is pivotal. In fact I'm almost obsessed with it. I check his stools, and sure enough, they are lose and mal-formed precisely when he is insane. On the good days his movements are perfect.
So why isn't fructose being absorbed into his blood stream? I haven't proven it, but I suspect it would be if it were free fructose. Free fructose is available at the healthfood store, but I haven't run this test yet. In all other settings, fructose is bound up with glucose to make sucrose, i.e. common table sugar. What if he lacks the enzyme needed to split this molecule in two? The enzyme is called sucrase, or invertase, and I'm sure he doesn't lack it completely, but he might not make enough of it, or it may be mal-formed, so that it doesn't cleave the molecule efficiently. Thus sucrose cannot be absorbed, at least not in large quantities, and it passes through to the colon where it feeds the microbes. This prompted me to do two things. I bought pure dextrose and started baking with that. (Dextrose is another name for glucose.) It doesn't matter whether he is fructose intolerant or invertase deficient, dextrose should be ok. He eats chains and chains of it in the form of starch, and he's fine. I also bought an enzyme supplement that contains invertase. I planned to serve this supplement, along with an entire can of pears, to see what happens. Pears are high in sucrose, and extremely low in salicylates and amines. It's a perfect test.
Returning to the world of scatology, most vegetables magnify his ADHD, especially the vegetables on the Failsafe diet, which are primarily cabbage and legumes. But those are the "gassy" vegetables. They produce gas because they contain sugars that humans cannot digest. The sugars move into the colon and are consumed by bacteria. This is slightly embarrassing for you and me, but it is devastating for John. If we give those microbes anything to eat, anything at all, the results are disastrous. (BTW, bacteria can digest these oligosaccharides, while yeast usually cannot; hence I suspect bacteria.) We needed another enzyme, alpha-galactosidase, capable of splitting stachyose, raffinose, and verbascose. This enzyme is the main ingredient in the commercial product Beano. Unfortunately it is rarely found in a broad spectrum enzyme supplement. There are lots of other ases, probably some that we don't need, but it seems like this one is always missing. We may have to serve our invertase supplement with a sugar meal, and Beano with a vegetable meal.
This is still mostly speculation; we'll see where it leads.