Hard to believe it has been eighteen years since I began my work in pediatric nutrition, starting with the surprise landing of my own beautiful, red head, now-grown-and-handsome-launching-for-college son (surprise because I never thought the red hair in my family would carry through, and because he has always been a surprisingly intense guy).
If you don’t know what dropped me into this niche, read my bio here. Long short, it happened to my family. In 1996, I was on my own as a new mom, scratching my head (clawing at it? until it bled?) trying to figure out what had happened to my amazing baby boy and how to fix it. For all the gory details, epiphanies, and crazy that we went through with doctors, schools, and mean people, read my first book here. I had to write it down – because I knew that I could not possibly be the only mother witnessing such struggle in her baby while all our doctors told us it was normal. How many other babies were going through this “normal” that was not normal? How many would suffer life-long disability because of it? Would my son be one of them? Those were my questions. My son was eighteen months old before a now-renown gastroenterologist named Tim Buie told me that indeed, having explosive foul burning wet stool all of your life, plus multiple sensory and other debilitating problems, was not normal at all.
Since then I’ve had the privilege of helping hundreds of infants, children and teens in the pediatric nutrition practice I formed as a result. Many had autism diagnoses, many had autism features but no label. Among those, some were already worked up by specialists for myriad physical findings. So, I’ve been honored to be entrusted with countless physicians’ notes, reports, lab findings, and chart notes in these children’s files – an education in itself. Some of these kids were simply worked over by costly specialists and had not enjoyed successful treatment at all. Others were treatment naive – they got a label, a brain scan, and some behavior therapy. Here are things I’ve learned, both as a parent and as a clinician. I hope they help you on your journey with your child, whatever their label may or may not be.
1 – Labels do not matter. What matters is how a child presents. Look at the child. Work them up as though there is no label. Disregard the word “autism” and simply investigate physical presentation. Never accept “Head banging, anxiety, teeth clenching, yelling, fecal smearing, chronic constipation, weird eating habits etc etc are because he has autism.” That is a lie. Autism does not cause any of those things.
2 – When a child feels well, they are happier. They can learn. They can thrive.
Feeling better, ready to play!
3 – Many children with autism do not feel well. They can’t tell you because: (a) They are non-verbal. (b) they have always felt this way and don’t know any better. (c) They are awash in a (treatable) opioid brain chemistry that dulls their sense of pain (ever watch your child with autism bonk his head, hard, and just keep going?)
4 – If your doctor tells you there is nothing wrong, but your intuition tells you something is wrong, your intuition wins. True story: So far, I have not met a mom whose intuition was wrong.
5 – I have not yet met a child with autism with an entirely normal physical work up. I don’t mean a normal physical exam, I mean a normal work up for everything: Allergy, autoimmunity, inflammation, gut flora, mineral balance, food intake, toxicity, or gastrointestinal findings.
6 – There are two kinds of normal: One your insurance company will pay for, and one that is your child’s birthright. Guess which one is healthier?
7 – Every child with autism is in there. They are cogent, and desiring connection with others, even if not on a level you may understand. They may not feel well enough to express these things.
Each and every child with autism or autism features deserves to reach for their innate birthright of vibrant health, and connectedness with their fellow humans. Even those seemingly desirous of a lot of isolation, on some level on their own terms, need connection and love. Find the path to your child’s health and connectivity whatever it may be. I can’t wait to see what other amazing things my son will do in this world (he’s already blown our socks off). Had we listened to the naysayers, dark-outlook and criticizing teachers, meanies, and downright misinformed doctors when he was little, I shudder to think where he would now be (extremely disabled, or, six feet under). Thank you to all the providers and friends who joined our journey to hold my son up with us. It takes a village!
Can nutrition help your child with autism? I don’t know. But I did write this e book to help families approach their health care providers with the right questions to find out. Click here for Five Essential Lab Tests For Kids With Autism
One of the more frequent lab requests that I make in my practice is for stool testing. Why? Because it tells me a lot about what is going on in a child’s gut, without drawing blood or going under anesthesia for endoscopy or colonoscopy. In fact, you may be able to get more action and traction from the findings of this type of test, than from having your child scoped – an invasive, expensive, and challenging procedure. In that sense, it’s a lot of bang for the buck, and easy to do. You don’t even have to tell your child the test is being done (see how below), or leave home.
Often parents tell me, “This test was already done. Everything was normal.”
Here’s the thing: If this was done by your gastroenterologist or pediatrician, chances are that only the most serious bad actors were screened. These are things like Giardia, Salmonella, Shigella, certain types of E. coli, microscopic parasites (or bigger ones), or Campylobacter. These are super nasty microbes that usually trigger obvious symptoms like diarrhea or fever. They can be present with chronic, non-specific symptoms too. Among kids in my practice with this work up already done, finding one of these is somewhat rare.
Does that mean there is no problem? No. The old adage “if you don’t look, it isn’t there” fits here. Stool analysis is no exception. There is much more to assess than whether or not your child has an egregious infection. FPIES, constipation, diarrhea, difficulty potty training, food allergies, growth and feeding problems and more are conditions that are responsive to and dependent on gut microbes, digestive capacity, inflammation, and more. Detailed stool testing can look at all this. Why doesn’t your doctor use it? Mostly, because insurance doesn’t always cover the more detailed testing.
I’ve relied on this often to explore why a child is belly-bloated, has hiccups or reflux, won’t grow well, won’t each much, has unbeatable sugar cravings, or is painfully constipated. Stool testing in this realm includes assessing the profile of beneficial bacteria too, which can guide the use of probiotic supplements as well as foods to support healthier gut terrain.
Testing is available to include Candida screening (aka yeast or fungal species in the gut) in detail. Several labs specialize in not only characterizing how much fungal material is in a stool sample, but exactly what types are there (there are at least thirty different types of fungal species that my end up in a human gut) and what will kill them (prescription meds and herbal tools). Conventional tests may simply say yeast is present or not in a stool sample, or not even look for it at all. “It’s normal for a human gut to harbor some yeast”, your doctor might say. “It’s of no consequence, until it’s visible thrush, the white stuff coming out your child’s anus, or coating your child’s tongue.” But there’s more to it than that: How much yeast is normal? As it turns out, there isn’t clear consensus on this in the “standard of care” universe (that is, what insurance companies will pay for). Some kids also have antibody reactions to ordinary yeast strains, meaning that even small amounts in the gut will be quite irritating, behaviorally and for stooling or appetite.
Why does this matter? A healthy gut and immune system control yeast, keeping it to low levels. But many circumstances can leave the gut dominated by yeast – at the expense of healthier, friendlier microbes that we need for good digestion, absorption, and immune function. Symptoms of this scenario can include a chronically bloated belly, or large, hard to pass stools. It can trigger constipation so severe and digestion so sluggish that hospitalization is needed to remove fecal impactions. Others may experience fatigue, mood swings, behavior spikes, or diarrhea with yeast overgrowth in the gut. Yeasty guts also drive rigid appetites that keep kids eating starchy, sugary, empty foods and away from nourishing foods rich in minerals, healthy fats, and protein. All of this can be going on with no particularly notable changes on usual lab tests. Can it really be that bad? I have encountered one case in which a child needed hearing aids by age 10, due to an unertreated, chronic fungal overload. As his mom explained, serious intervention wasn’t offered until “the white stuff was coming out of his ears.”
It gets worse: Once well settled in a human gut, yeast microbes can shift to a mycelial form that behaves like ivy growing up a chimney: It roots into the intestinal wall, making micro-perforations, akin to how ivy anchors itself in the mortar between bricks. This makes the gut too permeable, too permissive. Larger molecules than are normally allowed can pass into circulation, triggering reactions to foods. Voila: You’ve just created a food allergy or sensitivity, thanks to a “leaky gut”. Other gut infections and conditions can create leaky gut, but for sure, yeast is a player that must go if you want better feeding, growth, digestion, and absorption for your kids.
Besides seeing the fungal burden in your child’s gut, many markers for digestion and inflammation can be included, along with extremely sensitive DNA screening for microscopic helminths and parasites. Your doc may say these don’t matter, and we all carry them. But what I have observed time and again is that for underweight small children, they do matter, and can mean the difference between only tolerating three or four foods without reactions and growing poorly, to digesting many foods well and gaining and thriving. Every kid is different.
Working with a provider experienced with this testing can save time and trouble. No single test can answer all the questions, and all tests have limits. These tests are no exception. A helpful back up is a urine microbial organic acids test, also available to collect at home. This test picks up by-products of toxic microbes, rather than detect the microbes themselves. If the toxins are present in urine, then the microbe is active somewhere in the body, perhaps beyond the gut. Still, viewed in the context of the child’s food intake, growth pattern, and other signs and symptoms, I’ve found detailed stool tests to be one of the most helpful tools in my practice – especially for detecting yeast overgrowth and possible Helicobacter pylori infection that nobody had yet noticed.
Fun fact: Blood-draw antibody tests for H. pylori are a less reliable way to discern active infection, but they are commonly used for that purpose. H. pylori is a disruptive microbe that can trigger ulcers, reflux, and weak digestion; it can handily establish itself in the digestive tract in children with weak nutrition or poor growth status.
How to collect a stool sample without telling your child
Got a nervous kiddo who doesn’t want you messing with his poop (who does?)? Here’s how to capture a sample:
- Drain the water out of the toilet, by shutting off the valve behind the toilet.
- Then flush it, so it empties out its water, and doesn’t refill.
- Secure a generous hammock of plastic wrap loosely across back two-thirds of the toilet bowl, and close the seat (not the lid) over it. The idea is to let the stool sample fall into the plastic, with little or no contact with toilet bowl water.
- If necessary, remind your child not to flush the toilet (some kids don’t anyway).
- Once the sample is in the toilet, lift the plastic with the sample out of the toilet bowl, and follow instructions in your home collection kit from there. Don’t forget to fill your toilet bowl again with water by opening the spigot behind the toilet!
Do kids need to know? Unless your child enjoys this scrutiny and detail (doubtful), which many will not understand anyway, they don’t need to know. Who wants their poop scrutinized and discussed? Nobody, frankly. For older kids or kids who are the more vigilant type, if they must know or are likely to notice, the simplest, plain, and least invasive information is best. Let them ask questions if they need more information. “The doctor is looking for anything that could make your stomach hurt” may suffice for younger ones. Err on the side of less, not more.
Long short, if your child has had GI consults and no results, consider more detailed functional stool analysis. I have a number of tools at my disposal for this and can help you complete this testing. It may yield enough new information to help your child access effective support and treatment, so they can feel better, eat healthier, and thrive.
An all too common picture in my practice is meeting a young child who is growing weakly or even presenting with failure to thrive (unable to grow above 5th percentiles), developing at a questionably slow pace, and behaving fiercely at the drop of a hat (tantrums). There may be reflux and constipation, possibly medication dependent. Worst case scenario, the child has required tube feeding, or perhaps even lost a section of intestine to tissue damage or inflammation. Parents are weary and have been around the block: Specialists in GI disorders, developmental pediatrics, feeding therapy, and perhaps a neurologist or speech and language pathologist have all had their go’s at the child, but – improvements – if any – are meek, and dependent on pharmaceuticals or weekly therapies.
Maybe your child isn’t this bad. Perhaps they just like a lot of dairy food. Even in that case, you might be surprised at how differently your child behaves, grows, sleeps, or interacts, once that dairy protein (casein) is no longer a major feature in their day. There’s absolutely nothing magical about dairy. Many other foods can deliver protein, better healthy fats and oils, and more minerals, including calcium.
What’s going on here? This mechanism is not an allergy (though allergy or sensitivity may be present at the same time – that’s a different reaction altogether). In this case, a chemistry has evolved in which your kid is literally addicted to milk. You can measure this with a urine test. This is not a standard-of-care test, and your pediatrician will likely never have heard of it. Called urine polypeptide test, it screens for the protein fragments (“peptides”) leftover when dairy protein (casein) is poorly digested. It also screens for same from wheat protein (gluten). These over-sized peptides exist to a tiny, insignificant degree, after a healthy gut with good digestive function takes apart a wheat or dairy meal. But with weak digestion, an overly permissive gut wall (that is, a gut that lets these too-big peptides pass through to circulation), and the wrong gut bacteria (that worsen rather than lessen the impact of these peptides), these peptides will show up in urine in larger than expected amounts.
If they’re in urine, they are circulating widely, and can also be in your child’s brain. Why is this bad? Because these peptides mimic opiates – so much, that they are named after morphine: Casomorphin and gluteomorphin (also called gliadorphin) act like opiates in the brain. They bind the same receptors as drugs like morphine.. and yes, heroin. They are indeed potently addictive. Children who adamantly refuse foods other than just wheat, just dairy, or both may have this addiction active in their brains.
This is your kid’s brain on dairy or wheat overload. Source
Not only does this deny a child other more nutritious foods needed for their brains and bodies to grow and thrive, it can cause constipation (ever needed a morphine drip or opiate-based painkiller?), and disrupt behavior, learning, social skills, and language development. In my experience, the more diet-sourced opiate measured in urine, the less verbal and more developmentally delayed the child will be. In fact, clinical trials with naltrexone, a drug used to treat opiate addiction, have shown better behavior in children with autism and increased verbal ability.The more functional the child is, the less likely that casomorphin will fall out of range – but if symptoms are active for constipation, hyperactivity, difficulty socializing, rageful reactivity, slow language progress, or dilated pupils, then I will look at eliminating the dairy anyway.
Most every child in my practice, whether they have an autism or sensory processing disorder diagnosis or no diagnosis at all, presents with nutrition challenges that can be addressed for better learning, growing, and being. Your child doesn’t have to be “special needs” to have a problem with dairy – see if the info below applies in your house.
If your kid really likes these and eats 3 or 4 per day.. uh oh
What’s A Milk Addicted Kid?
These are kids who still rely on fluid milk as a major protein and calorie source, well past the age of twelve months, when weaning off breast or formula – as the bulk of daily calories and protein – is typically under way. They are drinking forty to sixty ounces of milk a day (about five to eight cups), and displacing solid calories because of milk intake. This lowers intake of other foods that kids need by age two or three. Milk addicts refuse other foods. They are often oral tactile defensive – that is, they hate varied textures in foods, hate to eat or chew, perhaps have delayed chewing skills (which is why some stick to the bottle in the first place), or still rely on suckling a bottle, thumb, or pacifier to calm themselves. Oral tactile issues or oral motor delays may keep this child drinking from a bottle beyond age three or four. When they accept foods, it’s often dairy items only – sweet yogurt, cheese, ice cream. A few random solids might be in the diet, but on balance, their diets lack vegetables, meats, fruits, or foods rich in essential minerals, vitamins, and healthy brain fats. There is often pallor, allergic shiners, white dots on fingernails, and a blank countenance. Growth failure or a weak growth pattern is common in this scenario too. Parents in this predicament are often told by their doctors and feeding therapists to turn to high-calorie milk-based drinks like Pediasure, Peptamen Junior, Carnation Instant Breakfast, or Boost, in hopes of providing a few micronutrients and extra calories. This won’t work, because it leaves the child addicted to opiates formed from casein, the protein source in these drinks. For non-dairy nutrition boosting options, click here.
These children often have neurological and sensory challenges that make a cold-turkey switch off of milk a sure fail. If bottle feeding is still in the picture, the cold turkey approach can really backfire, entrenching your child’s dependence on the bottle or milk, and fear of losing these, even more deeply. In this scenario, you need a nutritious milk replacement, minerals replenishment, correction for imbalanced gut microbes, and a sensory integration plan to replace the neurological organization that sucking on the bottle gives the child.
Developmentally, milk addicts (especially those with an autism diagnosis) who eat a lot of dairy seem to show the more profound language delays. When they are on the younger end, say age three or four years, they may speak more like a one to two year old, or be non-verbal. If they are school age, say six or so, they may have expressive language praxis issues, meaning that they can talk but not in a typical way. They may use echolalic language (repeating what they hear), misuse pronouns or refer to themselves in the third person, or misunderstand social context. This is often the first area of functioning that shifts when dietary opiates begin to disengage: Your child may begin to use language in a new, more typical way; make eye contact; or comply more typically with your requests.. within 2-3 weeks of being dairy free.
What To Do About Milk Addiction
1 – Talk to your child’s occupational therapist, if you have one, about what can replace the bottle in terms of its sensory benefit. Children with sensory integration disorder using a bottle at a late age may legitimately need this oral activity for self-calming, which they might not have mastered in other ways. Suddenly removing it with no alternative may trigger more setback than progress. A few inches of surgical tubing can be knotted for a child to suck, chew, and pull. Teething rings as for infants may work too. If your child craves and actually eats non food items, this is another problem called pica. It needs assessment and treatment, as it too can impair IQ, learning, or development. Read about pica here.
2 – Replace any gluten foods first. Since gluten is not the opiate of choice for a milk-addicted child, it’s easier to remove it first. In my experience, kids don’t usually notice that the cookies, pasta, bagels, microwave macaroni and cheese, frozen pizza and so on are being replaced with gluten-free versions, as long as they still have their dairy fix. But gluten still has to go, because gluten can trigger the same opiate effect on the brain that milk protein does. Same goes for soy – so, don’t turn to soy milk, soy tofu, soy frozen treats, soy cheese substitutes, edamame, soy yogurt, and so on. Swap in the widely available gluten free versions first, with zero fanfare – and zero explanation, unless your child is functional enough to ask a few questions. Do not expect your child’s approval or even recruit their opinion at this point.
3 – After you’ve successfully launched the transition off any gluten foods that your milk addict eats (and some eat very few, so this can be easy), approach the bigger battle: Withdraw all dairy protein (casein and whey). Begin with casein-free ingredients where they won’t be noticed. When baking, making smoothies, mixing mashed potatoes, or using a pancake mix (gluten free), sub in milks from almond, cashew, hemp, coconut (full fat canned or from carton) but not oat (contains gluten) or soy. Do not use soy milk or soy yogurt – it will trigger the same opiate chemistry. Eventually, your child will completely avoid fluid milk from any mammals (including you mom!) and products made from those milks: Butter, margarines with milk ingredients, cheeses, yogurt that is frozen, creamy, Greek, low fat, any fat, or fat free; Lactaid and lactose free milk (still has casein in it); cream soups and dressings (Ranch dressing, chowders, soups thickened with cream or milk), ice cream, sherbet, pizza or anything else with cheese, Goldfish or Cheezits or cheese puffs, and so on. Avoid foods whose labels say casein, whey, calcium caseinate, powdered dry milk, butter milk, cream, sour cream, cottage cheese, cheese, Parmesan, milk solids, or butter. “Dairy free” does not mean casein free, so read labels carefully.
4 – Balance gut microflora as aggressively and completely as possible. This may necessitate a functional medicine stool microbiology to assess the good and bad gut bugs, plus targeted use of probiotics, antibiotics, herbal anti-microbials, or fermented foods. Long short, if none of this is working, a troublesome gut biome would be high on my suspect list – so get this part sorted out. Need help? Contact me!
5- Begin nightly Epsom salts baths to replenish magnesium and sulfur. Both minerals help liver, gut, and kidney tissue release toxins that may pile up as your child’s gut biome shifts with the new foods he’s eating. Magnesium is calming as well, while sulfur is key for many digestive and liver enzymes. Use about a cup per tub, or a half cup for a toddler weighing less than 30 lbs. Soak your kiddo for 10-20 minutes.
6 – Put in some healthy fats! Oils from nuts, olive oil, coconut oil, ghee (clarified butter), avocado, grape seed oil are all excellent and healthful choices that you can sub in for cooking, baking, and dressings. Nut butters and nuts themselves also provide healthy varied fats. Fish oil supplements are a useful boost too, since milk addicts don’t get much (if any) omega 3 fatty acids. There are some excellent kid friendly products out there.
7 – Minerals! Supplement these until interest in mineral rich foods kicks in. Minerals are abundant in leafy greens, vegetables, bone broths, meats, eggs, and herbs. But before your kid is eating that stuff daily, bridge the gap with a mineral rich supplement. It should contain at least 15 mg zinc and cover selenium, chromium, manganese, molybdenum, and boron also. What about iron? Hard to say without you being my patient and completing an assessment with me. Iron is potentially toxic and deadly if dosed incorrectly. If marginal, it creates multiple functional problems (insomnia, hyperactivity, immune compromise, depleted serotonin and more). But don’t supplement it without guidance from your doctor. Or me.
You’re Good To Go!
The first few weeks of this may feel hardest, but stick with it – for a good four months at least. Some children respond quickly, some slowly. It all depends on the child’s nutrition picture at the start, and everyone is different. But one thing that usually happens in the first one to three weeks of total casein (and gluten and soy) removal is… Fireworks! When the opiates begin to vacate endorphin receptors in his brain, your child may start to be very unhappy with this new plan. They are experiencing withdrawal symptoms and it doesn’t feel great. The may stop eating, have more tantrums, not sleep well. Brace yourself – but don’t crack now. If you’ve done all of the steps here faithfully, you will minimize or possibly even totally divert the discomfort that this new food intake may briefly create. It’s temporary, and it is prelude to much healthier eating that feeds your child so he can learn, grow, and thrive to potential.