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after reading all 85 pages of this tome, which describes years of contradictory theories and inconsistent results, a hapless parent sent me the following email.
With this sentiment in mind, I'm going to skip ahead to the end of the murder mystery and name the prime suspect(s). If you like, you can read the rest of the document and see how we got there - all the things we tried - the things that worked and the things that didn't - and the emotional ups and downs of our journey. But for now, here are some steps you can take, today, that won't do any harm. [Galen] They might help, or they might not, but they won't do any harm.
If your daughter's disorder responds to diet, there is a big fork in the road: she reacts to specific foods and/or additives, she is vitamin/mineral deficient, or she harbors a microbe that causes most of the trouble. The approaches are vastly different, depending on these branches. Unfortunately I spent years traveling down the "individual foods" branch, when there was really a microbe at work. The unwelcome pathogen ate almost everything my son ate, and dumped its toxins into his blood stream, where they derailed the orderly operation of his brain. If you've read all the usual books, you may be thinking yeast, but I think it's much more complicated than that - a mix of bacteria, and yeast, and perhaps protozoa. Battling a microbe is far more complicated than testing for a few food allergies; which is why we spent years searching diligently for answers. I hope your journey is shorter, and easier, than ours.
The following recommendations attempt to improve the physical and emotional health of your child, whether she reacts to foods, additives, a vitamin deficiency, or an unwelcome microbe. At some point you will have to decide which problem you are dealing with, because the treatments and protocols will diverge; but this is a place to start.
Some of these suggestions represent compromises, for a child who lives in the United States, where junk food and fast food is ubiquitous. We can't afford to be draconian in our efforts, or the child will simply sneak at school, and then we're getting nowhere. I'm not thrilled about my son drinking pop, diet or regular, for example, but when the whole class goes to McDonalds as part of a field trip, what is he suppose to do? An adult may benefit from a more restricted protocol, but we rarely have that option when trying to help our children, who must deal with the public school system, and other social situations, e.g. eating dinner at a friend's house. So we do the best we can.
After you've tested it, and you know it's ok, a glass of milk a day is probably a good idea, for its calcium and vitamin D. It also gives your child something he can drink at lunch, while others are drinking their corn syrup. She doesn't feel so out of place in the school cafeteria. But bear in mind, there are some kids who react to milk.
Unless you are very unusual, unsweetened tea is ok. Club soda with a bit of fresh lemon or lime is a good substitute for pop. Other than these items, drink water, period.
Soda pop and juices are particularly damaging. Drinking sugar concentrate, even from real fruit, is like pouring jet fuel into your car. Don't do it. We're not built to handle it, especially as a baby.
Since ingredients can be deceiving, it helps to check the nutrition facts. Watch out for high carb foods, and especially high sugar foods.
My daughter reacts to glutamates, while my son reacts to benzoates and sorbates. And they are full siblings. It's very individual.
Also avoid malted anything, and vinegar. These aren't artificial, but they are the two most powerful promoters of yeast. That's why they are found in so many breads.
How about the synthetic sweeteners? Sucralose is too new; I wouldn't trust it. Saccharin is pretty safe, but hard to find. Nutrasweet is ok for some people, but not ok for others, so avoid it at the start. And if it seems ok, limit one serving per day. I know three people personally who were all right with it, on occasion, but got hooked, and started drinking/eating diet nutrasweet things all day long, and reacted badly to it, in different ways. It's a fake chemical; don't push it!
There are plenty of good whole grain cereals, and even whole wheat noodles for spaghetti. Buy whole grain bread that has 3 grams of fiber per slice, and not a lot of added sugar. Serve brown rice instead of white. This also helps with vitamin defficiency.
If you read the rest of this article, you'll notice I spend at least a year doing, and championing, exactly the opposite. I was following the failsafe diet, which promotes white flours and potatoes and white rice, and all the sugar you want - and I was convinced it was helping! How could I have been so mistaken? I have two advanced degrees; how could I have been so blind? The answer to this question, if there is one, is rooted in human psychology. When we are desperate, we try many things, and if one of these "tests" is followed by a good day, or a good week, we glom onto it like a religion. Of course good weeks happen, and bad weeks happen, for reasons that we don't understand, so we are deceived by false patterns, and coincidences, and statistically insignificant data sets.
As I write this, the year is 2005, and I wonder how 59 million people were fooled into reelecting the worst president our country has ever had. Americans aren't stupid, but we're easily misled when we're afraid.
I'm giving you my best recommendations up front, so you won't fall into the same traps that I did. When I talk about the virtues of the failsafe diet, with its white flours and white sugar, and scarcely a fruit or vegetable in sight, realize that it was just an experiment, and nothing more. It's "glorious successes" were not reproducible, and I have since moved on.
When searching for added iron, check the nutrition facts, as it is not always listed in the ingredients. Be suspicious of a food (devoid of meat) that has more than 10% of the RDA for iron. Even if the percent is low, scan the ingredients, searching for iron, ferrous, or ferric.
This also helps if you are vitamin/mineral deficient, because a wide variety of raw fruits and vegetables will give you the vitamins you need. I know - some people say you can't get your vitamins from food, and this may be true in some cases, but it runs counter to evolution. Besides, they're trying to sell you supplements, so their motives are suspect. Also, a vitamin supplement will probably feed the yeast more than it feeds you. It could make you worse, and it's yet one more variable you have to track.
And now for our story. Let's start at the beginning, when we adopted two special needs children.
Although we were told the boy (I will call him John) had ADHD, we really didn't know what that entailed. And nobody told us the girl (I will call her Mary) had ADD, because nobody knew. She seemed like a model child with no behavioral issues whatsoever. Yet by October we realized both kids shared a serious neurological disorder that evoked completely different symptoms in the two siblings. And by late December we were convinced both children would eventually improve with diet therapy. But we didn't know that "eventually" was measured in years, rather than months.
Still, he was unmanageable - out of control. He broke three items per day, some trivial and some valuable. There was no malice or vandalism, we were simply living with Curious George incarnate. At the same time, he often inflicted minor injuries on his sisters through reckless play. He was in constant motion, babbling loudly and incessantly from morning til night. Most of the time his speech exhibited the impediments of a child half his age: W replaced R and L, and the pitch was high and squeaky. I call this "Elmo-speak". Although he was always getting into trouble, often defiant, and sometimes violently oppositional, there were times when the sunshine of his kindness and intellect broke through the storm clouds of hyperactivity, rare glimpses of hope in an otherwise dark and tumultuous world.
Despite a series of parenting classes in two different states, our attempts at behavior modification were failing miserably. I finally realized he could not control his actions. Our battery of admonitions and time-out punishments accomplished nothing; they only served to pummel his already weakened self esteem. If we stayed this course for 6 more months his gentle soul would be crushed between the studded wheels of his neurological juggernaut and the inflexible pavement of our rules and punishments.
One night, after an entire day of misbehavior and physical containment, this remarkably perceptive 6-year-old said, in a defeated voice, "Daddy, I'm trying so hard. But I'm very tired. I just want to go to sleep." Although he could not fully articulate, I was able to read between the lines. "I'm tired of always getting into trouble, tired of being the bad boy at school and at home, tired of hurting my sisters, tired of exploding into anger every time you ask me to do something, and tired of fighting you with my words and my fists, because I really do love you." As he began his pre-sleep rocking in his bed, I started to cry and could not stop. I too was tired. Tired of monitoring his every move from morning til night, tired of putting him in extended time-outs, tired of declaring rooms and activities off limits, tired of physically managing his tantrums, and tired of the steady stream of sincere apologies from his small, broken spirit. "Sorry I hit you Daddy. Sorry for all the things I did wrong today." His contrition was always genuine, because his actions were not his own. I borrowed a couple of tissues, told him I loved him, and left the room. I think he will always remember that night; I know I will.
As the weeks rolled by I noted wild fluctuations in his response to the drug. One day the dose was inadequate, allowing subterranean hyperactivity to burst forth like upwelling magma. The next day the same dose was excessive, squashing him into the fetal position under a blanket. On two occasions the drug produced symptoms of autism. He twirled around on the floor, banging his head and moaning. He was incapable of saying any words or responding to questions. He was terrified as he tried to hide from something he could not comprehend or evade. When I questioned him later he remembered every detail - the episode was not a ritalin induced seizure (though these are not uncommon).
Each morning we tried to calibrate his ritalin based on his activity level. As described above, two milligrams too high or too low would lead to disaster. Keep in mind, we were administering the drug by cutting 5mg tablets into pieces, an inexact science at best. We certainly couldn't roll the dice in the morning and send him off to school, hoping the dose was correct for that day. Although it bought our family some short term sanity, ritalin was clearly not a viable treatment for the long haul. We had to think of something else.
As if in confirmation, Monday was one of the worst days he has ever had in our home. His idea of a hug resembled a flying tackle, babbling all the while. He raced up to the dog, stopping inches from her face as she backed away in alarm. (Any other dog would have snapped - we are lucky to have such a gentle animal.) Without doubt he was a danger to himself and others. The ritalin tablets we administered were about as effective as spitting into a forest fire. Contrast this with his behavior on Wednesday, just two days into a more wholesome diet. We cut his ritalin dose in half, 5mg in the morning and afternoon, and the reduced medication still kept him on an even keel.
NFF: Note From the Future, out of chronological order.
As a broad statistical statement, the natural protein in milk, or the lactose sugar, causes many more allergies and sensitivities than the trace amount of BHA that is present in 2%. In fact you are more likely to react to natural foods (such as wheat and corn and peanuts) than the manmade additives. However, there are exceptions. There are always exceptions. I know someone personally who has a life-threatening reaction to red#40. None of the other additives - just red#40. Therefore we, the consumer, ought to have all the information, right there on the label; I wish we didn't have to enlist the aid of various non-profit agencies to find out what is in our food.
NFF: Mary also had severe asthma, although her attacks were infrequent and unpredictable. On three occasions we had to take her to the emergency room. We soon saw a pattern: she reacted to artificial fragrances. Indeed almost all attacks occurred after exposure to a strong perfume. So we kept her away from artificial scents, but then exercise in cold weather brought it on, so we kept her indoors on cold days. Then smaller attacks came for no reason at all. When we finally figured out her diet, the asthma attacks, large and small, ceased. As it turns out, withholding additives wasn't enough to quell Mary's asthma, as it did John's. We had to do more detective work (described below).
Given the compelling environmental correlations, it took us a long time to realize that food was the primary culprit. synthetic fragrances represented a secondary sensitivity, triggering an attack only if Mary ate the wrong foods. Keeping her away from secondary triggers was impractical, as the list kept getting longer. The only permanent solution was dietary intervention, which reduced her sensitivity to environmental chemicals and allergens. Other parents tell similar stories. Sometimes an additive-free diet is sufficient - sometimes other nutritious foods (such as wheat) must also be withheld. In either case, food is often the underlying problem. You may need to shield your child from various environmental triggers in the short run, but if you are looking for a cure, concentrate on the diet!
During January and February we ran several elimination trials, withholding milk, wheat, corn, eggs, and nuts. These are reasonable experiments to try, as many hyperactive children have additional food sensitivities. And as long as you continue to avoid additives, these simple tests certainly do no harm. But after two months of various week-long elimination trials we had to admit we were making no progress. If anything, his symptoms were growing worse, and his school urged us to push his ritalin back up to "therapeutic levels".
The Feingold drug guide lists only two "clean" anti-ADHD medications: a 20mg ritalin tablet, which is too strong for this young, small boy, and a stimulant that can cause liver damage. We were definitely between a rock and a hard place. If we wanted to be 100% additive free, we had to curtail all medication, whence John certainly could not attend school. Fortunately winter break was just around the corner, a time to experiment. I decided to suspend all medication. We can never go back to ritalin - that much is clear - and I wasn't willing to subject John to any more medication. (John was placed on numerous drugs, ritalin included, at his group home, by a trained psychiatrist, and according to the reports, he reacted badly to all of them.)
If you read the Feingold materials, or other books on the subject, you are often advised to create a 100% safe home. There should be nothing in the kitchen that contains dyes or preservatives, or whatever you are trying to avoid - nothing for your child to get into that would cause trouble. Once again, that is the theory, but I live in the real world. My wife also suffers from a chronic health condition, irritable bowel syndrome, which can be completely managed by diet. (It took me three years to figure out how to do it, but that's another story.) She must eat certain foods on a regular basis, and they aren't all Feingold compliant. In addition, we have a border who is not excited about jumping on the bandwagon. Unless we evict her, her food will always be in the kitchen, and illicit snacking remains a constant threat.
After the meeting, John was calming down again, and I was sure we were on the right track. I was already rehearsing my "told you so" speech, but an hour after dinner, "All hell done broke loose now!" This was a Feingold-safe meal - yet it induced a violent reaction in my son. Clearly John exhibited food sensitivities along with his reactions to dyes and preservatives.
Since the elimination experiments we ran in January were tainted with ritalin, there results were suspect (i.e. a waste of precious time). The yellow dyes exacerbated his symptoms, while the medication suppressed them. any patterns in his behavior were certainly lost in the noise. Since he was now off ritalin, we were ready to run the experiment again.
With the sands of John's childhood slipping through the hour glass of time, I was determined to obtain positive results quickly. In January we eliminated one food at a time, because that's the easiest way to proceed, but it doesn't guarantee success. If your child reacts to wheat and corn, withholding one of these two grains (usually by giving him more of the other) accomplishes nothing. With April at hand, we decided to eliminate all potential allergens at once, without really knowing what they were in advance. The rough criterion is: eliminate any food that your child eats more than once a week. We started serving scallops, artichokes, mangos, and other exotic items that are entirely foreign to a six-year-old American. Fortunately John likes everything, so the novel foods were well received.
In five days John was functioning at school, learning his letters and numbers. He still required constant one-on-one attention from his special ed teacher, but we stopped getting those mid morning calls, asking us to come pick up our unmanageable son. We were making progress.
Slowly, very slowly, we reintroduced certain foods, watching for adverse reactions. These "challenges" were usually administered on Friday afternoons, giving John the weekend to recover before school on Monday morning. Thus we could only test one item per week, a very long and tedious process. Unfortunately the first test was a grand failure, or a grand success, depending on your point of view. We gave him two bowls of pure oatmeal, a Feingold approved brand of course, and he was extremely hyperactive for the next four days. This was quite odd, since he had a bowl 36 hours earlier with no reaction. I couldn't explain this discrepancy, so I assumed he had a cumulative reaction to oats or gluten. John would remain gluten free for the next several months. We rushed to the healthfood store to purchase rice bread, rice cereal, and rice noodles.
A week later we tried tomato, which produced another reaction, though not as severe. My crest clattered to the floor as I saw spaghetti, chili, shrimp creole, and sloppy joes fading into the sunset. Subsequent tests revealed sensitivities to corn (and all corn products such as corn syrup), eggs, the gas grill (i.e. combustion products), and grasses (don't take him on a hay ride or ask him to mow the lawn). No wonder single elimination trials did not elucidate John's plethora of sensitivities!
NFF: Most of these conclusions, phantoms of a statistically insignificant data set, would evaporate under closer scrutiny. Humans are very good at creating patterns out of random noise. Even the multiple elimination diet described above could not squelch John's hyperactivity for long, we just got lucky during the first weeks of its implementation.
His environmental sensitivities, such as grass pollens and molds, were real, but they were secondary reactions, made possible by a primary sensitivity to something else. This phenomenon was described in the section on asthma above. But how could we have known any of this at the time?
His food sensitivities don't exist at all, and they never did. He does not react to this food or that food, per se. It's more complicated than that. He reacted to oatmeal in a big way because oats are high in carbs and oligosaccharides. These pseudo-sugars feed a colony of pathogenic bacteria that live in his colon. The colony thrives, and their metabolic byproducts enter his blood stream, cross the blood brain barrier, and derail his neurotransmitters. Unfortunately it will take us another three years to figure this out.
With wheat and corn off limits, we had given John some form of rice every day - practically every meal. If you've read the literature on food sensitivities, you know this practice is discouraged. Patients should wait four days before eating the same food, and even skip a day before eating from the same food group. Perhaps John had developed a sensitivity to rice, where there was none before, and because we assumed rice was safe, we were implicating several innocent brands and staples. This is like the game of Clue. Make one mistake and you have jumped the tracks; the rest of your deductions are entirely bogus. This represents an incredible waste of time and energy, ours and his.
We immediately put John on a rotation diet. If he eats chicken on Monday, he doesn't get it again until Thursday or Friday. With rice off limits I decided to return to corn and wheat. To my surprise he had no trouble with either grain, in moderation, and rotated. We cycled through: corn, no-grains, wheat, no-grains, repeat. We also exonerated several foods that were actually innocent, they just happened to be served with rice. We were back on track and getting good data again. Furthermore, we were unlikely to create any new sensitivities, thus guaranteeing a suite of safe meals.
NFF: In reality, we did not induce a rice sensitivity, although that was a reasonable hypothesis. Rice is the safest food on the planet. The most sensitive people on Earth eat rice with almost every meal, for life, and have no trouble. John was reacting to the fluffy white rice, with tons of carbs and no fiber. Brown rice is ok, in moderation, and as part of a controlled diet.
We don't follow a strict rotation diet any more, though I do make a modest effort to rotate starches and meats. If he has lots of rice one day, he may have potato the next. Diets can be so restricted, so difficult to implement; you should probably set rotation aside at the start, unless you find you are making no progress at all.
There is an important exception. If you know you are, or were, sensitive to a particular food in the past, you should eat it in moderation, and rotated. I had a terrible response to corn ten years ago, so I only eat corn every three days. Sometimes I eat a lot of corn, and that's ok, as long as I take a break from corn thereafter.
The next several sections involve various theories surrounding carbohydrates. It seemed like he always had trouble with high starch meals, so we began to count carbs, simple and complex. Perhaps he could not regulate his blood sugar properly, or perhaps he had a serious microbial infection. Read on as we pursue these theories.
As May gave way to June, we still saw occasional bursts of unexplained hyperactivity. John's last serious incident happened after three grain free days - back to the drawing board. I noticed a large intake of fruit and fruit juices just before that incident, and although these items are all free of additives, they represent rich sources of simple sugars, and unless you are very careful and very lucky, they are also saturated with yeast. This suggested a candida infection, or at least a yeast intolerance. Furthermore, the candida theory explained (retroactively) much of our data. Yeast is hidden almost everywhere: all prepared fruit juices, certain fresh fruits, anything fortified with vitamin B, almost all commercial wheat products (enriched with vitamin B), anything containing vinegar or citric acid, anything containing MSG, soy sauce, aged cheeses, leftovers with microscopic traces of mold, etc. We were feeding him yeast almost every day, in varying amounts, without realizing it. Since yeast was a new variable, something we had never tracked before, it was worth looking at.
In addition to yeast, a high carbohydrate diet allows naturally occurring yeast to multiply in the patient's intestines. Simple sugars, including fruit, can elicit the same symptoms as yeast. If John's ADHD was yeast connected, all prior elimination experiments and their resulting data were destined for the trash can.
If I hadn't already read several books on yeast-related illnesses, I never would have discovered this connection on my own, and the Feingold association has little to say on the subject. In fact, they declare "sugar is not an issue", and for most people it isn't. However, no one book has all the answers, and no single organization provides the magic bullet.
We put John on a yeast free diet and cut back on carbohydrates. We went back to the healthfood store to purchase several yeast free wheat products, including breads and pastas. John did not react to any of these, though we must serve them in moderation due to their high carbohydrate content. Apparently John does not react to wheat; it was the yeast embedded in most wheat products. We even brought rice back, although it has an extremely high carbohydrate count, so we still have to be careful.
After a couple weeks on the yeast free diet a class of symptoms virtually disappeared. To summarize, we took the H out of his ADHD. John no longer raced around the house - he didn't even fidget. Nor did he wake up early, unable to get back to sleep. But what about his remaining ADD? He still couldn't focus on an academic task, and was easily frustrated at the slightest disappointment. He was certainly not ready for a full day of school, and first grade was just two months away.
Throughout July we tested a number of simple sugars: cane, beet, honey, maple, corn syrup, banana, apple, etc. Some children are sensitive to yeast and/or specific sugars, but do not actually have a candida infection. These lucky individuals can simply use a different form of sugar to sate their sweet tooth. Not so with John. The slightest dose of refined sugar, from any botanical source, sent him into overdrive, and even natural sugar was a problem. We must restrict him to one piece of fruit per day, and the fruit must be free of yeast/mold, which rules out grapes, raspberries, and cantaloupe. Also, fruits must be rotated, and served with or shortly after a meal.
We resigned ourselves to a life of planning, shopping, cooking, cleaning up, and analyzing. Every meal must be made from scratch, three times a day, plus an afternoon snack and dessert. A lot of work to be sure, but the rewards are worth it.
In late July we sent John to a summer day camp at a local school, and he did just fine, with no psychotropics in his blood stream. Granted, they didn't ask him to perform any challenging academic tasks, but the kids did watch movies and engage in arts and crafts, activities that were beyond his capabilities a few weeks earlier.
NFF: We now know that John suffers from a chronic microbial infection that drives most of his symptoms. He's always had it, and (perhaps) he always will. But I now think the organism is a protozoan, rather than a strain of candida. Evidence for this theory will be presented later. This microbial colony waxes and wanes, waxes and wanes, depending on the quantity and mix of carbohydrates in his diet, and other factors. The formula is very complex.
When you are counting carbohydrates, don't draw significant distinctions between "real" and "artificial" sugars. It's interesting that we (Americans) have such a strong bias in favor of fruit, honey, maple, and other "natural" sources of sugar. Why should these be particularly safer than the sugar that comes from cane, and sits, granulated, in your sugar bowl? No reason really, but this is what we believe, and marketers have picked up on it. When I was young we ate Kelloggs "Sugar Smacks". The same cereal is now called "Honey Smacks", with just a trace of honey to justify the name change. Everywhere you look, honey and/or maple syrup is added to products and pasted into the name, to make you think it is more "natural". But honey and sugar are both concentrated sucrose, and it doesn't really matter which you eat. (Actually, sugar is safer than honey, if you react to salicylates or aflatoxins.)
Fruit juice is another allegedly healthy form of sugar, but not for everyone. Whole fruit is usually ok, but juice is far too concentrated. You can easily drink the equivalent of 3 or 4 apples in one go, without the fiber and food bulk that promotes healthy digestion and regulates the flow of sugar into your blood stream. Yet we give our babies concentrated fruit juice almost as soon as they come home from the hospital. Folllowing the trend set by honey and maple syrup, the food industry adds fruit juice to its products, and declares them "healthy". Not so! Fresh cider from the mill is an annual treat, but not a healthy staple. Fruit juice can be almost as harmful as the equivalent amount of sugar water. My advice to anyone is: eat your fruit and vegetables - don't drink them. Throw away the juicer; it's a bad idea!
The bathroom is another troublesome location, and over a period of several months I found that John's baths consistently aggravated his symptoms. Once again we consulted with the Feingold Association, which provides lists of safe hygiene products and cosmetics. We purchased hypo-allergenic soap and shampoo, but still the bath remained a problem. Finally I decided that environmental mold might be a factor. I removed the rugs, which act as ideal repositories for molds, dust mites, and volatile chemicals. I also kept the bathroom well ventilated and cut back on his play time - get washed and get out. These steps helped a great deal.
Many food-sensitive patients, and almost all candida patients, are sensitive to mold. John is no exception. Although the changes we made to his environment didn't produce an immediate or dramatic improvement, I believe they will prove their worth in the long run.
NFF: Soaps and shampoos were never to blame, and even mold was not the primary culprit. John reacted to the chlorine that escapes into the air when a tub of hot water is drawn. Yet even this was a secondary reaction. If we keep him "on diet", he can play with his boats in a closed bathroom for an hour without incident. If he has eaten the wrong foods, he develops asthma and has to leave the bath immediately. Secondary reactions can certainly lead you down the wrong path for months!
One night my Aunt took Mary out for dinner as a special treat and inadvertently performed an experiment for us. Mary ate grilled cheese and ice cream, a meal that contains yellow dyes in the cheese, preservatives and glutamates in the bread, artificial everything in the margarine, preservatives and gums in the ice cream, lactoes, caseinne, and sugar everywhere. The next morning Mary could not write the numbers 1 to 20. She reflected some of the digits like a dyslexic, and writing a two-digit number was out of the question. We spent five minutes working on the number 16. She wrote 61, or reflected the 6, but couldn't write 16 - as though her hand had a mind of its own. We sent her off to school, though I'm not sure why. The next morning we asked her to perform the same task and she whipped off all 20 numbers in a nice clean row, and wondered why we were asking her to do such a silly thing.
With this compelling evidence in hand, We decided to skip the various drug regimens, which didn't work for John, and placed her on the Feingold diet as well. At first she resisted, but she really wanted to do well in school, and she saw the improvement in John's behavior, so she told us she was willing to give it a go. As parents, we could have forced it on her, but I really wanted her voluntary cooperation. Classmates and friends are going to offer her treats and snacks for the rest of her life; this young girl has to muster the courage to "Just say no." This is much harder than resisting illicit drugs. Consider the following: The cupcakes that your friend brought to school for her birthday don't hurt anybody else. They are perfectly legal, and delicious! Everybody's eating them, but not you. Even though you have your own special snack, you're sticking out like a sore thumb in a world where conformance is the gold standard. To add insult to injury, one of your classmates taunts you in a loud voice. "You can't eat this cupcake, because it's not on your diet. I can eat it - it's delicious. Too bad you can't have it."
Mary came home crying that day, and no doubt this scene will be repeated again and again. But she said NO, and brought the cupcake home for me to examine. I held her for a half hour and praised her for her courage. I then gave her the best treat I could put together, consistent with her diet.
Although I like to think our positive reinforcements play a role, Mary is probably holding fast to her diet because she sees the difference in school. She has already Aced three tests in subjects that she was struggling with before. When she got 100% on a geography quiz, her teacher praised her in front of the class, and she came home positively beaming. She would do almost anything to retain this position of excellence, and so would I.
I wonder - if Mary were an only child, what would become of her? We would have spent money hand over fist on Hooked On Phonics, the Sylvan Learning Center, and so on. These are all fine programs, but of no use to Mary. I don't know if we would have discovered the food connection. I'm afraid she would have tried, and failed, and tried, and failed, until there was no point in trying any more. How many other well-behaved children are failing in school because they react to certain foods or food additives? Their parents are not likely to type "food additives" or "allergies" into a search engine - they'll be extraordinarily lucky if they ever consider diet therapy at all.
I am reminded of Aristotle, who tried to convince his fellow countrymen that the world is round. "Just watch the ships as they sail away." he directed. "See how the bottom disappears over the horizon while the sails and mast remain visible? Finally, all that is left is the crow's nest and flag. And it happens no matter what direction the ship sails. Don't you see? The Earth has to be a big ball." But they didn't see, because they didn't want to. And they wouldn't see for another 1,500 years. The medical community, as a whole, is just as conservative, and capable of gross intimidation. Doctors have been brought up on charges, and some have lost their license for prescribing diet/candida therapy. "These alternative modalities are speculative and unproven." proclaims the entrenched medical establishment. "They are not in the best interest of the patient." It's hard to see how a healthier diet that avoids 20th century additives can be so dangerous, especially when compared to the side effects of the drugs they promote. During a follow-up visit I told John's pediatrician that diet therapy would never be proven, because rigorous longitudinal studies are expensive, and nobody is going to fund them unless there is a big payoff at the end, such as a new drug to sell. Apparently doctors don't understand how money shapes their world, or even their opinions. They believe they are objective practitioners, unaffected by the glossy brochures and free samples they receive from drug companies on a regular basis.
On another occasion a child psychiatrist (yes, he has a medical degree) told me that "foods cannot affect brain chemistry - only drugs." This despite PKU babies, Lorenzo's oil, the ketogenic diet, and even coffee and tea. I told him he was trying to paint a gray area black and white, since more than half of our drugs are derived from plant products, many of these used and abused by the indigenous cultures, but he was undaunted. Finally I asked our venerable expert if strawberries might cause hives in some patients, and he consented. In fact, foods might cause or aggravate rashes, asthma, allergies, cardiac irregularities, heartburn, digestive disorders, diabetes, hypertension, heart disease, kidney stones, osteoporosis, or almost any visible symptom in almost any organ, except the hallowed brain. When a bias is this irrational it must be self-serving. Obviously his profession is superior to all others, even other medical specialties. Only his magic pills can help, and by inference, only he knows the answers.
In any case, I needed to locate a pediatrician who knew the world was round. I contacted the International Health Foundation [901-660-7090], which refers desperate patients to enlightened physicians. This non-profit organization maintains a list of some 800 doctors, which sounds like a lot until you divide it by 50. That leaves an average of 16 doctors per state. In our case, most were on the other side of the state, and others did not treat children. Unless we wanted to accrue frequent flyer miles, there were only two doctors to choose from. Take a wild guess - do you think they are part of my HMO?
In August we took John to one doctor and Mary to the other, and in both cases I was less than impressed. Then again, my expectations were probably unrealistic. My subconscious mind anticipated a set of definitive answers after a one hour visit: hidden food allergies unveiled, additives to avoid, and supplements to administer. Both doctors gave me an assortment of the latter, but they probably give the same pills to all their patients, generic vitamin/mineral supplements available at any healthfood store. Unfortunately John reacts to the substrate of almost every tablet or capsule. So we really didn't get much out of these visits. You might, if you're just getting started, but we had already demonstrated the food sensitivities that the doctor inferred from history and symptomology, and we had already read the books he recommended. "You're doing all the right things," he assured us, "just keep going." Apparently we had to keep chugging along, as we have done for the past 8 months. Nobody is going to step in and provide a quick fix.
So what is teflon anyways? Teflon is a polymer whose base monomer is a rather nasty looking fluoro-carbon, just a couple steps away from freon. It's a wonder we don't all react to it!
Keep in mind, there are some ADHD children who react to aluminum ions, and they are better off using new teflon pans. If you want quick answers from this web site, you won't find them, because every child is unique. However, I can tell you to take your cookware into account, because it could be a contributing factor.
We now use enamel pans and glass baking dishes whenever possible. These are the safest vessels, introducing the fewest impurities into your food. At first we bought heavy expensive enamel cookware from Hudsons, for $100 a pan, only to find that the surfaces began to chip in just a couple months. We promptly returned these pans and ordered new light-weight durable pans for about $10 each. See the Miles Kimball catalog, 920-231-4886, item #465104. These have lasted for years.
NFF: John never had a problem with cookware, but your child might. Once again we were pulling false, short-lived patterns out of random noise.
When tap water carries an allergen, life gets much more complicated. Any food that is prepared with unfiltered water, or has water added to it, is a risk. When I open a can of "Starkist tuna packed in water", the fish is safe, but what about the water? I started draining the liquid off of all canned foods.
NFF: We have since exonerated fluoride and reissued his original toothpaste, but we still serve bottled water whenever practical. Tap water has chloramine, and that can be a problem. Besides, it doesn't taste good.
For months I assumed he was "just tired", which magnified his symptoms, but as he entered the first grade I began to think about it logically. He often got into trouble in bathrooms, even during the day. He deliberately stuffed wads of toilet paper into the toilets at home and at school. He spilled water, dabbled in hygiene products, washed the walls, got into cupboards, and so much more. As I told his teacher, "If he's singing in the bathroom, you're all right. But if he's quiet, something bad is happening." He isn't just tired; there is something about bathrooms. And no, it's not psychological. Don't go there!
I suspected an environmental agent such as mold or perfume or cleaners. (See the earlier section on the environment.) But as the title of this section suggests, I was mistaken. It took nearly a year to figure it out, but it's obvious in retrospect. Mirrors magnify his hyperactivity. As he watches his reflection a positive feedback loop ensues, and within seconds he loses all control. We covered the bathroom mirror with blank newsprint, and bedtime became much easier.
Now that I know what to look for, I'm amazed I didn't see it before. He is drawn to mirrors like a magnet. They don't usually drive him crazy, but he's always looking. If there isn't a mirror nearby, he'll look into a window, or even my wife's glasses - anything to catch his reflection. If there is any hyperactivity present, the visual feedback will magnify it ten fold. I asked his teacher to move him to a different desk at school, so he cannot see himself in the small mirror over the classroom sink. She thinks we're nuts, but hey, what else is new?
If you have an ADHD child, I recommend covering or removing any mirrors in the child's bathroom and bedroom. You might consider doing the same for the common rooms of your house. Don't forget to pull the shades at night, so he doesn't see himself in the windows. These steps might not help, but like a healthier diet, they can't do any harm.
I'm not sure if this qualifies as a particularly valuable insight, but it's interesting, and it explains why a 20th century classroom is the worst possible place for these children. No wonder John can't sit quietly and color a picture while 23 other kids color their pictures independently. Being ignored is, for him, a kind of pain that we cannot comprehend. There is no time to think about rules or consequences; the pain must end. Time to drum on the desk, or make a loud noise, or shout out something provocative, or run around the room, or flash the lights. Whatever it takes. There, that's better, now he's got everyone's attention. Some of the kids are even laughing at his antics, and that's the best of all. Uh-oh, here comes the teacher, and she's angry. He's in trouble again. Why does this always happen? There seems no way to avoid it.
Our neurological disorders are as interesting and as complex as the organ they afflict.
Q: How many ADD kids does it take to change a light bulb?
A: Hey, let's go ride bikes!
We attended two parent-teacher conferences in the first week of March and came to the same conclusion about each child: "He/she hasn't behaved this badly in months." Because John is in special ed, we had a history of documentation to consult. "Precisely one year."I concluded. John was doing well, by last year's standards, until March, when something terrible happened. At the time we were taking him off meds and changing his diet, so there were too many variables involved. All we could do, as parents and teachers, was endure, with no explanations in sight. Fortunately John improved dramatically over the summer. We attributed these improvements to his low carbohydrate diet, but were other factors at work?
It is March once again and something is amiss. Mary has also jumped the tracks, and she is on a different diet. Is there something in the air?
Throughout March I documented a negative correlation between scholastic performance and nasal congestion in both children. In fact,if John wakes up with a stuffy nose, I don't send him to school at all. He'd just be in time-out all day, and what's the point of that? We know that spring pollen can induce sneezing and watery eyes; might it also exacerbate neurological conditions such as AD[H]D? I decided the answer was yes, though I was hard-pressed to explain why.
NFF: Spring pollen had nothing to do with it. Certain foods caused his nasal congestion and his bad behavior. The two symptoms were correlated by an underlying food chemical, hence his congestion served, and still serves today, as a harbinger of rising hyperactivity, although the former does not cause the latter.
I will spare you the details of the additional steps we took (e.g. air purifiers etc) to protect John from the spring pollen, which was suppose to be causing so much trouble. These measures accomplished nothing, and I abandoned the underlying premise in short order. Fortunately I didn't spend more than a couple hundred dollars on this venture, but precious time was lost. Another month of John's irreplaceable childhood consumed by ADHD.
Of course some children do react to their environment, quite apart from foods, so I really shouldn't chastise myself. For instance, both my kids are allergic to cats. These were all reasonable steps to take; they just didn't help my son.
As John's symptoms grew worse I became desperate. I began to doubt my earlier conclusions as I searched for another explanation. I asked the Feingold organization for help, and they suggested the Failsafe diet, a much stricter subset of the Feingold diet that avoids salicylates and amines, as well as additives. Amines are very subtle - you'll never figure them out without help. You have to worry about how long the steak has been in the freezer, and how soon the fish was frozen after it was caught, and how long the chicken simmered in the pot. If you haven't determined the exact cause of your food-related illness, and you have already eliminated artificial additives, the Failsafe program is certainly worth a try.
We ordered the book Fed Up, by Sue Dengate, and put John on the Failsafe diet, which is much more restrictive than the diet that had proved so successful in January. Surely he would do well on Failsafe. But he got steadily worse. By mid April he was entirely unmanageable. Apparently amines and salicylates weren't the answer, or at least not the whole answer.
NFF: The failsafe diet is very high in carbohydrates, as it promotes rice, pasta, white potato, pears, and "all the sugar you want". John could not handle all these carbohydrates. His micro-colony thrived, and dumped their toxins into his blood stream. This completely swamped the benefits associated with fewer amines and salicylates.
Much to his disappointment, I put him back on a strict candida diet, as described in The Yeast Syndrome. His recovery was instantaneous and miraculous. The next day he was just fine, as though nothing had gone wrong. His teachers couldn't believe the difference, and neither could I. In the future we will have to be more careful about carbohydrates, especially simple sugars.
NFF: For two years John's microbial colony waxed and waned, with no discernible pattern. No doubt the microbes were responding to the overall carbohydrate levels in his diet, and a dozen other variables that we were not tracking at the time.
A year ago this month I decided John had candida; now I claim he does not, and never did. I was always uneasy about this diagnosis, even though the candida diet helped enormously. He never had any of the other candida symptoms. His immune system is strong, and he is healthy as a horse. He throws off colds and infections that send the rest of us running for antibiotics. It just didn't make sense. Apparently we've been going down the wrong track for a year, but don't despair, we have, nonetheless, been traveling in the right (carb) direction.
John reacts to carbohydrates, both simple and complex. As I chugged down the candida track (still the best diet for him), I looked to my left and saw another track running parallel to ours. It is called fructose intolerance, wherein the patient, often for genetic reasons, cannot metabolize fructose (fruit sugar). No wonder he reacted so badly to fruit and fruit juices. And table sugar is half fructose, so that would explain a lot. I read everything I could on the subject, and reduced his fructose intake. If this was John's problem, it was very serious. The partial fructose metabolites can inflict permanent liver damage. We needed to confirm or deny this hypothesis quickly.
At the same time, the track to my right also beckoned. Perhaps John simply produced too much insulin in response to sugars. This would drive blood sugar below normal, forcing a state of hypoglycemia. This is known to produce hyperactivity in children. I tried to serve protein and carbohydrates together, in the correct ratio, as described in the book Enter The Zone. Yet the zone diet recommends fructose over glucose, since fructose enters the blood stream slowly and produces less of an insulin response. I couldn't accommodate both theories simultaneously. Yet I had to do something; John was getting worse each week.
In fact his decline was frightening. Putting him on the strict candida diet bought us another two weeks of good behavior, but then that was not working. In an effort to keep blood sugar levels constant I started serving smaller meals more often, with fewer carbohydrates, and just the right balance of protein, and no synthetic additives, and no dairy, and (ideally) not a lot of fructose. Try doing that eight times per day, cooking everything from scratch. It's exhausting! That bought us another week of good behavior, but then it wasn't enough either. Soon we were seeing reactions to small ten-carb meals, with protein, and without much fructose. Something was terribly wrong.
Soon another symptom appeared, adrenaline. Once or twice a day John had a racing heart after a mini-meal. He reported this to me, and I could feel it through his chest. This was correlated with his bad behavior. In fact he was sometimes scared to death (curled up under a blanket), or consumed with rage (hitting and kicking everything and everyone in sight). This fight/flight response, and the racing heart, pointed to adrenaline. When the body is desperate for blood sugar it secretes adrenaline. This is only suppose to happen when the lion is chasing you. "We need blood sugar now, and lots of it, to run away or fight!" Nobody should have to endure a full-scale adrenal response two or three times a day. And of course John didn't know what to do with this hormone. I tried to tell him what was happening inside his body, and that there were no lions in the house, but his emotions trumped my logic.
The adrenaline finally sent us down another track. It wasn't candida, or fructose intolerance - it was an imbalance in his blood sugar regulation, and it was growing worse each week. Perhaps his pancreas was failing, or his liver. I scheduled an appointment with his pediatrician as soon as possible. As you recall, she told us diet had nothing to do with ADHD, and was pushing ritalin and other psychotropics, but she was still an expert in other areas, such as juvenile diabetes, and I needed her help. As we talked on the phone she mentioned a couple possibilities. Like us, she thought fructose intolerance was unlikely. Either the liver was not functioning properly or the pancreas. A glucose tolerance test would confirm this. She also wanted to run a thyroid test, just to make sure. "If the thyroid isn't functioning properly, the patient can't metabolize sugars. We might be able to correct that with one little pill." Over the next couple days those tantalizing words rang in my head. Just imagine, one little pill, and John is all better!
The next night, as I was unable to sleep, it suddenly hit me. Iodine! It's essential for proper thyroid function, and John has ingested almost none during the past year. We even served pure salt, because the iodized version contains corn starch, an additive that some hyperactive children react to. Besides, iodine was a variable that we'd never tracked before, so it was worth considering.
I started him on iodine supplements, and the next two days were much better. But by the third day the racing heart and the associated insanity returned with a vengeance, like something out of Edgar Allen Poe. Another blind alley, another week of precious time lost.
The Failsafe diet completely eliminated his adrenaline reactions. (Or was it the reduction in carbohydrates? Hard to tell.) John use to experience a racing heart with frightening behaviors three times a day, yet these "attacks" disappeared under Failsafe, and have not returned. He still suffers from ADHD, but at least the physical symptoms are gone.
In fact the first few days went so well, I let down my guard and gave him a boatload of carbs. (Apparently unbridled optimism induces irrational behavior in all of us - myself included.) Mary's birthday, with ice cream all around, induced a violent reaction, so I decided dairy was a problem. I eliminated this, and John improved, until several servings of wheat, whence I concluded gluten was also a problem. many Failsafe participants are either gluten free or dairy free or both, so I hadn't really jumped the tracks yet. But then he had several more bad days, filled with lots of potatoes, so I thought potatoes were a problem. I removed these from his diet, and he was excellent, until he ate a heaping bowl of rice. Does he react to rice too? No - it must be the carbs.
I put him on 120 carbs per day, including rice and wheat and potatoes in moderation and in rotation, and he improved steadily over the next couple weeks. Before Failsafe, even 60 carbs per day was enough to induce antisocial behavior; now he could tolerate at least twice that level.
NFF: We were slowly beating back his microbial colony, while keeping him on a clean diet.
Summer is the perfect time to perform this experiment. We asked Mary to do a little school work every day, about an hour's worth (which isn't a bad idea in any case). Each day we tracked her scholastic abilities. Thus we had immediate real-time feedback, just as we did with John (through his behavior). Let's find out what is really going on, once and for all, with both these children.
As it turns out, time was our enemy. The nearest Tyson plant is 1,000 miles from our home, and they ship their meats chilled, not frozen. It takes a few days to reach our local distributor, than a couple more days to reach our store, then another day or so on the shelf before we buy it, then a couple more days in the fridge before we cook it. Apparently that's too long! The conclusion was clear - John is highly sensitive to amines.
I took my food diary, a year's worth of carefully documented results, and threw it into the trash can. It was absolutely worthless. We never wrote down how long the meat sat in our fridge, or our local store, or the various distribution centers, or the trucks, or the slaughterhouse. (We never had this information in any case.) Yet this was an important factor. No wonder I couldn't figure it out! John was reacting to something that I wasn't even tracking, and the same is probably true of Mary.
Restaurants were another source of frustration. Why did John react to a restaurant meal one night and not another? It was exactly the same meal, prepared the same way, as far as we could tell. Yet it wasn't the same, because we never knew the age of the restaurant's inventory. Now we have a rule - don't take the kids out on a weekend. If he orders steak on Sunday night, it probably came in on Thursday or Friday. And how long did it take to get from point of origin to the restaurant? We'll never know, and the restaurant manager doesn't know either. Oddly enough, a McDonalds burger is probably safer than a fine steak, because they move their inventory through faster, and the beef is always frozen in transit.
We began buying all our meat from a local butcher who promised us a maximum of 36 hours between slaughter and sale. I can't begin to describe the change in both children. They improved almost over night. In particular, John had no trouble regulating his blood sugar. We served heaping bowls of rice, and other high starch foods, and he was fine. I wish I had a comparable quick-fix for restaurants, but I don't. I suppose we could order vegetarian dishes, but John would be hungry again in an hour, and Mary doesn't eat many vegetables. Maybe McDonalds (without the condiments) is our best bet after all.
"You know," recalled my wife, "that butcher could barely speak English. I wonder if he really knew what I was asking him, or how important it is." We went to this butcher because he is just a few blocks from home, but I'd certainly be willing to drive across town to keep my children healthy. We made several calls and talked to five more butchers, who all spoke excellent English.
"Our meat sits about ten days at fridge temperatures before we sell it." replied the first butcher on the list.
"I can't really tell you for sure - too many distributors and suppliers in the chain." answered another honestly.
"You can get frozen meat shipped to your door." suggested a third.
We had already played the frozen meat game. A large retail seller of frozen steaks (which shall remain nameless) deliberately leaves its meat at 55°f for 6 days, then freezes it and ships it all over the country. "That's where the flavor comes in." bubbles their sales rep enthusiastically. "That's what makes it tender." Gee, thanks alot.
The more calls I made the more discouraged I became. Nobody within twenty miles could sell us fresh meat, and I began to doubt our neighborhood butcher, his claims notwithstanding. Perhaps the meat got to him in a day, as he said, but did the supplier "age" the beef, to make it tender? He probably didn't know, or care.
Somehow my wife always comes through when I am at my lowest, and I generally reciprocate. That's part of a good marriage, and it's the best thing we've got going. "You know," she mused, "I remember a poultry shop in Rochester that sells free range chicken. It might be fresh. I don't see them here in the phone book, but I remember driving by the place." We called information and tracked them down - the Peacock Poultry Farm. I called the shop and spoke to a representative for 20 minutes, probably to the dismay of in-store customers. She was a wealth of information. She documented every step from slaughter to sale, and if we came on the day of delivery, the meat would be less than 24 hours old. And all their meats are additive/hormone free. I was practically jumping out of my chair with excitement. On a whim I asked if they also carried turkey. "Oh yes." she replied. "Turkey and duck and beef and lamb and bear and buffalo and gator and ostridge and so on." It's a poultry shop, but they have everything we need, and it's additive and amine free! "If I weren't married I'd ask you out." I declared. By this time she thought I was nuts, but she couldn't imagine how important this was to me. Since a delivery arrived that morning, processed the night before, we went straight over and bought a little of everything. We ate it for the next week and saw no reactions. If this store wasn't here, I don't know what we'd do.
He still has incidents, but they are rare. He had one during the second week of school, hitting and kicking his teacher. This took place after eating fish that had been in our freezer for a week. Remember, we don't live near the coast, so the freshest fish we can buy is already churning out amines when it hits our store. An extra week in the freezer is obviously too much. You have to be so careful with fish!
The improvements at home are just as dramatic, though his frustration level still drops a little when he becomes tired near the end of the day. We took the newspapers down off the bathroom mirror, as he seems to have no trouble getting himself ready for bed. His sisters are thrilled; it's hard to get ready in the morning without a mirror. Throughout the day the kids do what we ask, and nobody yells any more. Ok, we have to raise our voice to break the zombie spell cast by the TV, but that's not shouting in anger, and the kids know the difference. Not too long ago, I feared John would never sit still to watch TV, so that's something new.
NFF: Mary was truly on the mend, and has outgrown most of her food sensitivities. However, John's improvement was only temporary. Within a month he was as bad as ever, perhaps worse. I'm writing this two years later, and he's never been as good as he was that month. What was so great about that month? We still don't know.
Consult your drug guide or ask your pharmacist; ritalin should not be taken if you are on an MAOI. In other words, it is an amine, or it breaks down into amines in the body. No wonder John reacted badly to it. As it turns out, all the drugs that are typically given to ADHD children are amines. If these meds make your child worse, he may react to amines.
Other broad classes of amines include decongestants and cough suppressants. This explains a great deal. The last time I gave John a Contac 12 hour capsule he became so violent I had to keep him in his room for the next 24 hours so he would not harm himself or others. The last time I gave Mary a decongestant we had to rush her to the hospital for a life threatening asthma attack. Yes, they really do react to amines. If the food correlations don't convince you, the meds certainly will.
I thought about the foods we had eaten over the past couple weeks, but nothing jumped out at me. As far as their diet was concerned, April looked just like March, which looked like February. I started to think about spring pollen, then deliberately pushed the thought from my mind. I reviewed the food journals again. Back in February I tested the kids on wheat, a little pasta every other day, and didn't see any reaction. I continued this through March and into April. Could this be a slow buildup? I'd read about this in books, but found it hard to believe. There was only one way to find out. I stopped serving wheat and saw no change for several days. Eventually Mary's asthma subsided, and was completely gone in ten days. John's behavior also improved over the same period. This illustrates just how subtle foods can be. If your child is having a reaction, it may not be the last meal, or even what he ate yesterday. It might be the aggregate of foods that were eaten during the past week. And once you eliminate the troublesome foods, you might not see an improvement for another week or so. I now realize that a food challenge can take a month; hence we can only test a few foods per year. This is a very slow process, characterized by "three steps forward and two steps back."
We had brought in many new foods over the summer, with no obvious effects. However, we don't ask him to do much here at home. He plays well with his sisters, and with his friends down the street. That's a far cry from sitting quietly in a classroom and working on math, which is "hard", and "boring". Perhaps we need to get back to basics.
We cut back on salicylates and amines, and also eliminated gluten and dairy. John still looked terrible, and I thought sugar was to blame, so I took that out too. Then he seemed to react to rice. Here we go down the carbohydrate road again. Finally I saw a connection to white potatoes. I removed these, and he improved over night.
Looking back through my records, we gave John some form of potato, often potato chips, almost every day. And when he went gluten free, potato was in everything we baked, either from a gf mix or from scratch. I thought the baked grains produced amines, and then I blamed eggs, then sugar, then carbohydrates in general - but it could be potato. I can't believe how long it takes to figure this stuff out.
NFF: There's nothing wrong with potatoes, except that it is a high carb, low fiber food that feeds the pathogen.
John was doing terrible in school again. His teachers were at wits end. I looked through three years of data but couldn't see any patterns, none at all. What was causing his adhd? What was the mechanism?
After several controlled experiments I finally realized that his pure, whole grain bread brings on a huge reaction, while a white refined bread, loaded with preservatives, calms him down. Obviously gluten is not the issue. What does this mean? What does whole grain bread have that white bread does not? What is in wheat germ/bran that is not in wheat starch?
One significant difference is lectins, a set of biologically active proteins that are prevalent in the husks and skins of most plants. I read the lectin story, and put John on a lectin-free diet. This helped for a while. (It seems like every change helps for a while, or else we are desperately searching for improvement.) But it didn't last. Soon his behaviors were as bad as ever, so we gave up on that theory. But it was a good try; we'd never tracked lectins before.
Here's something else we never tracked: whether he ate his salad first or last, whether he ate that apple on an empty stomach, whether he went to bed immediately after dinner, how much oil/fat was in the potato chips, etc. All these factors are important in the ibs diet.
My wife had terrible ibs, for over a decade. This diet would not have helped her (it didn't exist then in any case). Her ibs is quite unusual; it responds to a diet high in insoluble fiber. Most ibs patients must restrict insoluble fiber and increase soluble fiber. And there are many other restrictions involving fats and oils, when to eat, what is safe on an empty stomach, and so on. It's a whole new world. Yet why should the ibs diet help someone with adhd, someone who has no overt digestive disorders? I had no clue, but we had to give this diet a try.
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 seems to calm him down. 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 well 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 below.
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.
We had to get past denial and past bargaining, the usual stages of grief, and move on to acceptance. We had to get serious about this diet. Fruit really is bad, all fruit, except an occasional canned pear. And almost all vegetables are bad. Meat and potatoes and fries and pasta are good. That's just the way it is; get over it!
We always wanted to test here at home, so he wouldn't get in trouble at school, but those tests are inconclusive. We must test certain items on a school night, despite the consequences - i.e. in order to see the consequences.
That's great news, really, because there are plenty of high-amine foods that are free of MSG, foods that are back on his safe list. He loves salmon, and that helps supply his omega fatty acids, which he may be missing. But the low MSG diet isn't a breeze either. We've been working diligently for almost four years, and we still can't find a safe bread or bun. We believe we have found a safe cereal, and a safe bagel, but we're not sure of that either. Something goes terribly wrong whenever baked goods are brought in.
The biggest problem with John and his diet is my inability to say no. He wants so much to go to restaurants, like everybody else, and that always gets us into trouble. The batter on the nuggets contains hydrolized protein and corn starch, soups and stews contain yeast or yeast extract, salad dressing contains vinegar, the steak is often seasoned with "spices" (e.g. Fudruckers), the bun on the burger contains malted flour, the pizza crust contains caseinate (Hungry Howies), the oil on the fries contains beef flavoring (McDonalds), the pad thai noodles have a fermented fish sauce, all chinese dishes contain soy sauce, the pancake batter contains buttermilk (Ihop), and on and on. I think we finally know how to cook for him at home, but when we're on the road, there isn't much he can eat.
I can't believe these cookies are fermented the way bread is. There couldn't be any hidden amines or glutamates. In fact the most MSG-sensitive people on Earth can eat these cookies (I checked). Is there something else in these cookies, not listed on the package, or does wheat change chemically when it is baked?
In an effort to crack this conundrum we made our own oatmeal cookies using essentially the same ingredients. (We replaced some of the wheat with oats.) Pure as can be, plain and simple. The cookies baked for about 10 minutes. They didn't ferment; they didn't burn. I told him to eat "a lot of cookies", and he happily obeyed. I wanted to know whether baked wheat was a problem. Well I found out.
The next day I had to hold him down in his room for several hours, so he wouldn't trash the place, or harm himself or others. He didn't threaten anything animate with the scissors, but I took them away, just to be safe. This was probably the worst reaction I'd seen in four years.
"Is it big today?" I asked. For a brief moment he was able to step outside himself and answer my question. "Oh Daddy, it's huge!" Then he went back to crying and screaming.
If you've been following this story from the beginning you know that several years have elapsed. John is becoming a big strong boy. If we don't figure this out soon, I won't be able to contain him.
All right, let's review. Gluten seems ok; he eats pasta and pancakes all the time. Dairy is ok; he eats some ice cream almost every day. Sugar is ok; homemade lemonade is his favorite drink. Either something happens to wheat when it exceeds the boiling point, or salt is a problem. We've known for quite some time that MSG is very bad, but I always suspected the G, never the S.
At this point in the narrative you don't know John's race, because up to now I didn't think it was relevant. However, African Americans, (as opposed to African Nationals), have trouble eliminating excess sodium. This is a lasting legacy of slavery, where unnatural selection favored black individuals who could retain salt, despite great heat, dehydration, and deprivation. Now these "survival" genes find themselves at odds with our 20th century western diet, which is extremely high in salt. The black community is unusually susceptible to hypertension and stroke, and a low sodium diet is recommended for this segment of the population, and perhaps for the rest of us as well.
What if a small percentage of these African Americans have additional symptoms that result from an electrolyte imbalance? I've seen patients with improper sodium or potassium levels before; it isn't pretty. Symptoms can include rage, paranoia, hallucinations, depression, lethargy, you name it. So I wonder - is there a connection?
I did some math; the cookies that he ate contained about 1,300mg of sodium. That's a lot, but, he usually does well on Aunt Jemima pancakes, which contain almost exactly the same ingredients, with the same amount of sodium. We ran this test again, just to make sure. Six pancakes in the morning, containing over 1,000mg of sodium, and he's fine! Flour, oil, sugar, salt. What's the difference? It has to be the method of cooking. This is not unprecedented. Amine-sensitive individuals know very well that cooking methods can create amines. But I've talked to these folks; they can eat these cookies. Apparently baking produces some other chemical