I’m often asked if ketogenic diets are good for kids. Parents are trying this diet and having great results – why not put the whole family on a ketogenic diet?
It doesn’t take much searching to learn that ketogenic diets have been vetted for nearly a century, when they were first noted for their ability to control seizures. Even conventional training for dietitians has included training in ketogenic diets for decades – they’re not new.
The new part is using them for weight loss, fitness, and all sorts of chronic conditions, from cancer and autoimmune problems to Alzheimer’s, multiple sclerosis, or autism. You’ve probably seen experts – from Mark Hyman MD to David Perlmutter – singing the praises of ketogenic diets. But what about your kids? And, what about using a ketogenic diet for kids with autism?
Ketogenic diets use high amounts of fats and oils, lots of protein, and very little carbohydrate. Typically about 70% of all the food you eat on a ketogenic diet will come from fats and oils, with only about 5% coming from carbohydrates. By contrast, kids usually eat anywhere from 50-70% of their total diets as carbs, with 20-40% as fats – so this is a big switch.
Research is mounting to show that eating this way changes the bacteria that grow in your gut. By now, you’ve probably heard about how deeply we rely on gut bacteria for overall health. Gut bacteria are essential to our well being, in that they help us digest and absorb the nutrients we need. They also cut inflammation and protect us from invading pathogens – that is, if your gut bacteria profile is healthy.
This is critical in early infancy too, to avoid conditions like allergies and asthma later on. And gut bacteria play important roles in other conditions that have been regarded as exclusively psychiatric or neurological for decades, including autism – but for years, I have helped families reverse behavior and developmental concerns in their kids by restoring a healthy gut biome. Now research is finally mounting to show that this is indeed possible!
If you have a lousy gut bacteria profile (which you can acquire by eating a junky diet, or using antibiotics, reflux medicines, and steroid anti-inflammatories), chronic and systemic problems are likely going to ensue. It’s popping up all over the academic literature landscape, and I’ve seen it happen before my eyes in practice for years: Nasty gut flora = nasty kids, nasty poop, nasty behavior, poor eating habits, and chronic health problems!
Anytime you change your diet, you will change the bacteria in your gut, in about 2-3 weeks. Ketogenic diets change gut bacteria too, and it is through these changes that this diet can support renewed health. Ketogenic diets also change our body’s primary fuel from glucose, which is obtained by eating carbs, to ketones, which are obtained by eating mostly fats and oils. The brain, and all our organs and tissues, can run well on ketones. When the body is using ketones all the time, this is called being “in ketosis”, a goal that is closely monitored for people who use ketogenic diets to control seizures. Even tiny amounts of carbohydrate can trigger a seizure for some people with epilepsy. Being in ketosis is when seizure control can happen best, for people who fail on seizure medications.
But ketogenic diets for kids may have a cost. They may not grow as tall as they would if eating a diet with more carbohydrate in it. This was noted in this study in children using ketogenic diets. The children’s progress for linear growth (that is, height or stature) slowed down after 15 months on the diet.
This may be partly due to changes bone density. Effects on bone development were closely scrutinized in this study, which found reduced bone density with ketogenic diets for kids.
Effects like stunting from ketogenic diets for kids have been observed for many decades, and I have witnessed this myself in my pediatric nutrition practice. Kids who come to me already on a ketogenic diet follow what occurred in this study, that also saw slowed growth for height and weight in children using ketogenic diets. And in this study, the number of children who fell below tenth percentile for height more than doubled, from ten to twenty-three children, while using ketogenic diet. They also had more than expected kidney stones and bone fractures. Children also may gain weight more slowly on ketogenic diets, impairing their growth pattern for both weight and height.
Slowed growth is not just a physical issue. It can have cognitive, functional and behavioral impacts too – and this another often-seen issue in my pediatric nutrition care practice. Ketogenic diets for kids may thus create unwanted cognitive effects, as described in this study on developing rats. In my practice, one of the most common findings for school children with ADHD/ADD is that they are underfed – ironically, often because they have been using a stimulant medicine that suppresses appetite. Eating poorly, they fall in and out of ketosis during the school day and disintegrate behaviorally for focus. Their food intakes need improvement, but being in ketosis does not seem consistently helpful.
These impacts may not be a concern for adults on ketogenic diets. This very small study of only three individuals did not find changes in bone density after five years on a ketogenic diet. This study of sixty-five adults saw reduced bone density in groups using either very low carb or calorie restricted diets for weight loss, but it’s unclear if the subjects sustained ketosis or not, or if bone density dropped simply because subjects weighed less at the end of the trial.
The Up-Side of Carbs
Carbs have been demonized for sure, and not without cause. I have seen thousands of food diaries over my years in practice for infants, toddlers, kids and teens (thank you to all those parents who filled those out with dispassionate honesty!). Without question, many kids I encounter come in with carb-heavy, low quality diets that rely too much on processed grains, sugary yogurt, juices, or starchy crackers and snacks. Not good.
But there is an up-side when eat kids about a third to half their calories from clean carbs. Kids are growing. Adults aren’t. When we’re growing, carbohydrates from food we eat spare the protein and fat we eat, so that they can be used for other critical tasks – both metabolic and structural – that adults simply don’t have because they’re not growing.
A child needs a lot more energy per pound than an adult. Depending on a child’s age or growth status, they can need as much as five times more calories per pound than an adult! This could be the same as you or I eating ten thousand calories every day, just to maintain a normal healthy weight (imagine what would happen!). Strangely, even when kids use calorically adequate ketogenic diets, they can still experience stunting.
This might be related to the fact that kids’ brains use about double the amount of energy every day compared to an adult’s brain, in terms of the percentage of energy derived from the food you eat. This is true until about age four, when head growth slows down relative to the rest of the body.
Long short, adults aren’t growing, and thus don’t need a sparing effect from carbohydrates.
The big caveat here is that kids need clean carbs. When kids eat healthy, clean carb sources with good protein and ample varied fats, they grow well, and behave, sleep, and learn well too – I’ve seen this hundreds of times. “Clean carbs” are unprocessed, no-added-sugar, whole foods. Think vegetables, legumes, and tubers – parsnip, squashes (butternut, acorn, spaghetti squash, zucchini, pattypan), asparagus, cruciferous vegetables like Brussels sprouts, broccoli, or cauliflower, carrot, potato or sweet potato, greens, lentils, chick pea or beans, green and wax beans, taro, or manioc are all carbs to have on your menu rotation. They provide pre-biotics for your gut bacteria to work with for healthy fermentation in the gut and nutrient production, not to mention their bonus of minerals. Fresh unsugared fruit (not fruit juices) is helpful too. When it comes to grains, sprouted grains will be more digestible, but grains are by no means absolutely necessary in your child’s diet.
One not so great carb is yogurt – because yogurts for kids are generally loaded with added sugar or sugary fruit. Most yogurts on store shelves have far more sugar in them than fat or protein, so if your kid chugs drinkable yogurt tubes or even a non-dairy yogurt cup daily, switch to a no-added sugar option and use a drop or two of organic stevia to sweeten it if need be.
But Babies Are Born In Ketosis! So…Doesn’t That Prove Ketogenic Diets Are Good For Kids?
When babies are born, of course they’re in ketosis – they’re not eating anything yet at all, and need a fuel to carry them through what may be hours of labor. Ketones work great. A young baby (a month old or less) relies often on ketones to fuel the brain for its first few weeks. Ketones are preferentially allowed into the delicate new brain over glucose as an energy source in that first month too. This is when “early milk” or colostrum has more than twice as much fat in it than it does carbs. Does that mean ketogenic feeding is the next rage for babies and toddlers? I don’t see it. By the end of the first month, breast milk nutrient ratios shift, so that it’s nearly 40% carbohydrate, and this doesn’t change much even for moms eating ketogenic diets. In other words, after that early milk, we evolved to give our babies 30-40% of their calories as carbs in the first year; our bodies will preserve this ratio in our milk no matter what we eat.
For infants or kids with seizure disorders, ketogenic diets can be miraculous. They are definitely worth trying and definitely warrant professional guidance. They may work because they do change gut bacteria, and eating any carbs – even clean carbs – above 20-60 grams/day (which is quite low) may trigger relapse of seizures. Follow your care team’s advice if this is your situation.
Ketogenic diets that are poorly monitored can be dangerous. I don’t recommend launching one for kids without professional guidance. If you have, watch for these warning signs of hyperketosis: Rapid, panting breathing; rapid heart rate; facial flushing; irritability; vomiting; or unusual lethargy. If you see those signs, call your doctor right away or go to your nearest emergency room.
For kids with autism or other conditions, there are options to tailor ketogenic diets to each child so that functioning improves dramatically, without compromising growth, bone health, or kidney health. This is one of my practice offerings, so contact me if you need help. And if you’re still laughing about that long list of veggies that your kid would never eat, let’s get in touch to work on that. Changing that gut bacteria profile can change your kids’ palate and appetite!
Is your child underweight? Your doctor would have told you, right?
Maybe not. In fact, I am often the first person to capture this finding in a toddler, child or teen who has seen multiple providers, from the pediatrician to gastroenterologist to allergist and so on. But this is really important for kids. Why? Because once kids slide into growth impairments, it throws a lot of other stuff off kilter for them. One, their immune systems don’t work as well. They can get sick more often, stay sick longer, and have more complications from infections than kids in healthy status. Two, they struggle more to behave, learn, focus, or sleep, and will often experience more anxiety, less self regulation, and more mood swings. This can happen even with mild or moderate growth impairments. In other words, kids don’t have to be severely underweight for this stuff to go wrong. When kids finally hit bottom with that failure to thrive (FTT) status, this will create a leaky gut – something many parents ask me about – because there aren’t enough nutrients and energy from food for the child’s gut wall to maintain its integrity. And, the younger a child is, the more vulnerable they are, when dropping off channel.
Pediatric providers generally won’t intervene on or even mention a lagging growth pattern unless your child is really, really underweight, as in – heading for the very bottom of the growth chart. Why not? There are several reasons why this can be true:
- Your insurance may not pay your doctor to intervene on any growth impairment other than failure to thrive (FTT), a severe and entrenched problem in which a child has fallen to below the fifth percentile for weight for age.
- Your doctor may not know that dropping just fifteen percentile points off expected growth pattern, for either weight or stature, actually means your child is underweight or undernourished.
- Your pediatrician may not know how to calculate your child’s ideal body weight, expected weight, or expected height, or doesn’t have time to do it.
- Your doctor doesn’t have time to scrutinize, integrate and explain all the growth data in that brief fifteen minute visit, including all the things that impact growth, from your kids’ food intakes to energy level to genetics.
- Your doctor isn’t sure how to help you fix the problem, or why it’s happening in the first place, if they notice it.
Because I work with kids with problems like allergy, autism, FPIES, inflammatory bowel conditions including Crohn’s disease, or all sorts of circumstances in which they can’t eat regular diets, it’s common for me to find that a child is indeed underweight. Many parents who contact me have placed their kids on special diets on their own, and don’t realize their kids are underfed and malnourished, even with all the best efforts at feeding well. But it can be a relief to know exactly what and how much food your child needs to grow, feel, and function better.
Usually, parents are downright surprised at what a difference something as simple as the right food intake makes for their kids. This quote is straight out of clinic today from a mom regarding her fifth grader, who had severe attention and focus issues for which he’d used medication, difficulty with independently toileting (constipation, stool accidents), frequent infections, and felt unhappy or frustrated often:
“Looks super healthy, I’ve never seen him this healthy. He seems more like a regular kid. He is thriving. He is growing like a weed. He is happy.”
This boy is off stimulant medication, using the bathroom independently and not having accidents, and has not had any infections for months, for the first time in his life.
What would your pediatrician do for these problems?
He would do what had been done for this child, and failed: Give methylphenidate (stimulants like Focalin, Ritalin, etc) for inattention and hyperactivity; Miralax for the constipation; antibiotics for the infections; and a “he seems fine” shrug for the moderate drop off of expected weight for age.
Nutrition care is not a replacement for medical care – and vice versa: Medical care is not nutrition care. They do different things, and require different skill sets. Strong nutrition in kids makes them healthy; prescription drugs mostly avert acute problems. Neither replaces the other, both are important for kids – but, unfortunately for kids all across the US, nutrition is not a big player in pediatrics nowadays.
Is your child underweight? Is it impacting their health? It’s easy to find out. There are well established criteria for determining things like expected growth pattern for a child, and how to restore it if lost. There are many tools at my disposal too, to sort out what foods would best serve your child, what foods you might really need to avoid, and what foods you really may not have to worry about. If you’re not sure, schedule an appointment and we can just find out!
There has been buzz for years now about camel milk, and its purported benefits for autism, Crohn’s disease, allergies, feeding problems and more.
I’ve been slow to embrace this possibility, because all mammalian milk (including human breast milk) contains milk protein – that is, casein – and casein can become problematic for many reasons. Casein structure varies a bit from species to species or even across breeds of animals in the same species (as described in the A1 versus A2 milk conversation). This is what can make goat milk or sheep’s cheese more tolerable than cow’s milk for some kids. But all these milks – including human breast milk – can make a neuroactive protein fragment called casomorphin.
I’ve needed a good explanation for why this is not a problem with camel milk, and I found it. Here’s the story.
Casomorphin is great for babies in their first year. It is correlated with optimal psychomotor skills and muscle tone. But it can wear out its welcome, when a child’s intestine doesn’t acquire the skill to digest it thoroughly, past the age of 12-14 months. I routinely see this in my practice, in milk-addicted kids: Constipation, delayed language or aphasia (non-verbal), extreme picky eating, tantrums, ADD/ADHD, disrupted sleep, and behavior problems.
Casomorphin is easy to measure in urine. I have found it in the urine of older toddlers still breastfeeding, who strictly avoid dairy foods in their diets otherwise, and whose mothers strictly avoid dairy too – proving that the casomorphin indeed can come from weak digestion of the protein in breast milk. In these cases, weaning to non-dairy proteins in food did the trick.
Casomorphin is a “powerful opioid, more powerful than morphine itself“. It blunts sensation, and can delay potty training; it also prevents a process called synaptic or neural pruning, in which the brain adjusts its growth to accommodate new developmental phases. Without pruning, kids’ heads grow disproportionately large, and development – especially for language and social reciprocity – can stall. It’s common for me to see this phenomenon in children with autism who have had diets liberally inclusive of dairy protein, whether it’s from milk, cheese, yogurt, ice cream or whatever – all these dairy products contain casein. Gluten and soy proteins can form morphine-like neuroactive peptides too, in the context of weak digestion. These have been linked to autism features, for many years now. This is why kids with autism may begin to speak, function, behave and sleep better by removing wheat, dairy and soy foods entirely – stop eating opiate like neuropeptides, and their brains begin to work again.
What about camel milk? It turns out that the casein in camel milk is different enough in its structure to not create these opiate neuropeptides – while at the same time, its other components are also unusual – making for some extra healing benefits. It doesn’t have the same casein structure that cow’s milk has, and thus can’t create casomorphins that have brain-damaging potential, as is seen in autism. Camel milk lacks the beta-lactoglobulin found in cow milk; that, plus its different casein structure, means that the two most allergenic proteins in cow milk are absent from camel milk. The whey proteins of camel milk are different too, making them less allergenic. And camel milk has higher amounts of the immune protecting proteins lactoferrin and immunoglobulin than cow milk – though some dispute that the difference is enough to explain the medicinal benefits. But because camel immunoglobulin molecules are tinier than those in cow or human milk, and because they appear to be more potent in completely neutralizing an infectious agent, they can more easily target and disable viruses or bacteria in the gut. Traditionally, one of its many uses was for clearing rotavirus – something your child was probably vaccinated for, as rotavirus vaccines have been included in the CDC schedule since 2008 (look for RotaTeq on your child’s vaccine record). Who knew all they may have needed was camel milk?
Little data exist for its healing properties, but the little that is out there is compelling. A controlled clinical trial in fourteen children with autism who drank pasteurized camel milk instead of cow’s milk for eight weeks “revealed a decreased hyperactivity, increased alertness, grasping power and curiosity, better social interaction and many parents commented on the newly expressed effort of their children to listen and obey instructions.” The children also had daily bowel movements instead of being constipated, and got sick less often. Urine samples showed no elevation of beta casomorphin-7, the trouble-maker molecule in question for milk drinkers. In a larger, double blind, randomized trial of 65 kids with autism, profound improvements were once again noted, from just two weeks of camel milk consumption. And yet another blinded and randomized trial in 60 children with autism found that camel milk significantly reduced oxidative stress (a well documented feature of autism that underlies behavior problems, GI symptoms and more) while it gave a boost to the kids’ glutathione levels, which is a healthy body’s top protector against toxins. Glutathione is legendary for being depleted in kids with autism, and has been the target of much investigation, since correcting it may diminish features of autism. Glutathione is also a key to reducing symptoms of Crohns disease; a healthy gut wall is rich in this antioxidant, while a sick one is depleted of it.
Another obscure report lauds camel milk as a wound healer in diabetes; other findings suggest that camel milk has enough insulin-like peptides in it to effectively lower blood sugar. Meanwhile, here’s that nasty casomophin from cow milk again, possibly triggering diabetes. I found no trials specific to food protein induced enterocolitis syndrome (FPIES), but did find one that plainly showed that most kids with milk protein intolerance handle camel milk just fine, and that skin prick testing worked to screen for this option.
While controlled trials are few, anecdotes are plentiful on the web, describing remarkable improvements in children with autism who switched to camel milk.
This all sounded good enough for me to spring for $275 worth of frozen camel milk (it doesn’t come cheap). I’m going to try this out. My son has a long history of inflammatory bowel symptoms and struggles to gain weight; I have a long history of autoimmune problems and am dependent on infused human immunoglobulin therapy to, well, pretty much stay alive. If anyone had good reason to give camel milk a try, I do. And there are a few hundred kids in my case load who might benefit. I like to have first hand experience with whatever I recommend to my families.
The only dromedary dairy in my region was cryptic and unfriendly when I reached out; they wouldn’t let me visit or purchase in person, so I passed. Besides, knowing that the entire Front Range of Colorado is under siege from cancer causing fracking contaminants in air and water, I felt it would be better to buy a product from somewhere else. Camel milk isn’t sold in stores near me as far as I could find, so I went with the one outfit that seemed well equipped to produce, sell, and ship milk reliably: Desert Farms. Stay tuned to hear how this goes! Should be interesting. As a recipient of immunoglobulin therapy, I am monitored closely every three weeks for my immune status, so I will be tracking what happens. Let me know how camel milk worked for you, if your family tried it!
Ezekiel and sprouted wheat breads are taking off in the ancestral diet department – but does this work on a gluten free diet? Spoiler alert: Sprouted grains, while containing less or different gluten from modern wheat, are not gluten-free. And even old land-race or ancestral strains of sprouted, organic, fermented wheat may be poorly tolerated in a modern-day injured gut. We have different wheat nowadays, and different guts!
First things first: What is sprouted wheat? Sprouted wheat bread is simply bread made with the seeds of wheat that have been soaked in water until, you guessed it, they sprout. Then the sprouts are ground into “sprouted flour”, used to make bread. Sprouting breaks starches down so they are easier to digest. Sprouted seed flours contain less gluten, but aren’t gluten free.
You can sprout all sorts of grains or even legumes, including barley, beans, brown or white rice, amaranth, lentils, millet, spelt, and more. “Ancient” grains – those cultivated millennia ago – include farro, spelt, quinoa, amaranth, chia, sorghum, freekeh, teff, millet and eikorn.
By comparison, non-sprouted grain breads simply use flour made from grinding seeds into flour.
In the case of wheat, grinding and refining non-sprouted seeds retains a lot of gluten – great for that doughy elasticity we so enjoy in stuff like dinner rolls or doughnuts, but bad for gluten-sensitive people.
We Eat Different Wheat Now
As you may have heard, wheat has changed a lot in the last sixty or so years:
- Wheat crops grown in the US today were modified through cross breeding in the 1960s to have even more gluten
- Decades before that, modern milling techniques stripped wheat of much of its nutritional value.
- Pesticides weren’t used at all on crops until the 1940s; now US wheat is one of the most heavily pesticide-laced crops on earth, because glyphosate (RoundUp) is doused on it just days before harvest, to ease harvesting and processing.
- Soils today have become depleted by modern farming techniques, leaving wheat even more bereft of nutritional value.
Besides the fact that modern wheat is now more refined, less nutritious, and higher in gluten, all of which make it harder to digest and more inflammatory for the human gut, the pesticide part really matters too. If you haven’t already heard, glyphosate damages the human gut biome, is suspect for exacerbating the autism epidemic, and may even trigger gluten intolerance or celiac disease itself, by virtue of its synergy with other toxins in our food and environment.
We Have Different Guts Now
So this means that the “can-you-eat-old-timey-wheat” question has two parts: While humans enjoyed organic, sprouted, fermented or even just plain ground wheat from ancient seed strains for centuries without injury (part 1), humans have not used glyphosate, exposed themselves routinely to heavy metals and industrial toxins, or repeatedly injected viral antigens into themselves year after year ever before (part 2). These can conspire to damage a gut beyond tolerance for even the loveliest of ancient or sprouted grains.
For the first time, we are eating and exposed to hundreds if not thousands of toxins that we never have been before, from pesticides like glyphosate to artificial ingredients in medicines and food to environmental pollutants. These all have potential to injure gut health and trigger inflammation. Glyphosate has been found in just about everyone, in breast milk and urine samples.
Our Viral Exposures Have Changed Too… A Lot
Viruses have long been suspect as a trigger for inflammatory bowel diseases including celiac disease. Meanwhile, viruses and heavy metals can synergize each other – that is, the two together can injure gut microbiota or worsen viral infection more than either alone (as in this example and this one). Like it or not, we have tinkered with these exposures with immunizations over the last six or seven decades too, by blending viral antigens in shots with metals like aluminum or mercury to “irritate” the immune system so that the shots work better. How these metals actually work in shots and what their cumulative toxicity may be, especially for infants and children, are not well studied.
Besides introducing vaccination in the 20th century, we also introduced exposures to toxic metals and pollutants from other types of pesticides besides glyphosate, and from large scale, mechanized extraction and manufacturing processes like strip mining, fracking, drilling, the use of plastics, and more.
So what this all means is that returning to ancient grains may not work for gluten sensitive kids, especially if they’ve had usual vaccinations (which gives multiple viral exposures in quick succession early in life with toxic metals), antibiotics, stomach flu bouts, or other potential disruptors to healthy human gut function and gut microbiome.
Ok So NOW WHAT?
Some gluten sensitive kids may be able to incorporate sprouted grain breads into their daily diets without an issue. Here’s how to sort it out:
- Find out which grains your child is most sensitive to before stocking your kitchen with sprouted or ancient grain options, especially if there has been a diagnosis of eosinophilic esophagitis (EE) or food protein induced enterocolitis syndrome (FPIES). I use ELISA IgG food antibody testing for multiple grains in my practice, including spelt, millet, oat, barley, and gluten.
- Run a urine test for glyphosate. This is available here. Work to reduce it by switching to organic foods as much as possible, while improving your child’s detoxification capacity. I work on this piece often with parents in my practice.
- Run a stool test for microbiome profile. Several options exist for this, from extremely detailed genetic analysis for microbes found, to simpler cultures, to panels with or without inflammatory bowel markers like calprotectin or lysozyme. I offer these in my pediatric nutrition practice. Include the inflammatory markers if your child has been symptomatic for a long time, if s/he isn’t growing well, or if s/he has had multiple rounds of antibiotics or frequent infections.
- Give your child upstream work first – a strong, nourishing, replenishing diet without any gluten (or grains if possible) for a good six months. You should see weight gain, strong nails, good dental health (no cavities), no rashes, and comfortable daily eliminations. Constipation, eczema, dentail cavities, or frequent sniffles are signs that you have more work to do. Don’t sacrifice growth or gain – kids need to follow their expected patterns for these, so don’t over restrict.
Need help? Get in touch, set up an appointment and let’s get started. Thanks for stopping by.
I’ve helped kids with autism use nutrition supports, including gluten free diets, since 1998.
Some twenty years later, it still isn’t a standard of care to get a thorough nutrition screening with an autism diagnosis, and it definitely should be. It’s crazy that there is any question at all about the efficacy of this tool. But unless your doctor knows how to do the correct lab work up front – and they quite often don’t – you may be doomed to blow it, or not know in the first place how a GF diet may help.
Gluten free diets can be pivotal for autism, if, and this is a big if, you do it right. It can be daunting, so go for professional assessment and guidance, just like you do for any other treatments and supporting therapies. You don’t pick your kids’ psych or seizure meds off the web, or craft your own OT program; why would you do that for a complex nutrition piece? Somehow, many families still design their own medical nutrition intervention, and may miss key pieces.
And no wonder: None of the usual care team members for kids with autism get training in applied nutrition, nutrigenomics, or how to do an autism-specific nutrition assessment (or any nutrition assessment). Who do you ask? Neurologists, psychiatrists, developmental pediatricians, occupational therapists, feeding therapists, and behavior therapists are not nutritionists or dietitians. Even many dietitians and gastroenterologists in hospital settings, per feedback from my client families, don’t know what to tell families about this intervention. If they’re not telling you to explore nutrition intervention for a child with autism, it’s not because there’s “no proof” that it helps. It’s because they probably don’t know any better.
There’s no shortage of opinions and (poorly designed) studies touting that a gluten free diet, or nutrition support in general, is not a worthwhile measure for kids with autism. Much of this science is just plain badly done. Nutrition is not easy to research, because we’re talking dozens of moving parts: Vitamins, minerals, calories, protein sources, gut metabolome, gut micro biome, developmental status, food allergies and sensitivities, iron status, methylation impairments, mitochondrial disorders, and growth status to name just a few. Controlling all these variables is difficult. Most studies I’ve read about autism and nutrition simply don’t control or evaluate these variables very well, if at all. Here’s one bad example that got wide press, and another, here.
If you want to try gluten free diet, here’s a few tips below. I also strongly encourage you to read this book for details on how to get started, how to avoid pit falls, how to engage your care team, and much more.
- Get a blood test for anti-gliadin IgG antibody (not a celiac blood test) with your pediatrician or gastroenterologist. This will tell you if your child’s immune system reacts to gluten in a way that has potential to affect the brain.
- See this book to learn about other key lab screenings before you begin.
- You will have to eliminate all dairy and soy protein sources from your child’s diet as well as gluten. See this book to learn how, and why. If you don’t, you will not see much if any improvement from eliminating gluten alone.
- Get help with recipes, cooking, and shopping. I help families navigate this. There is a gluten, dairy, and soy free solution for just about everything your child is eating now.
- Many parents don’t realize that dairy food includes yogurt, any cheese from a cow (cream cheese, Parmesan, mozzarella, etc), butter, cream, buttermilk, kefir, raw milk, goat milk/yogurt/cheeses, lactose free milk products, ice cream, sherbet, cream soups or chowders, many sauces and dressings (Ranch), and any processed foods or baked goods that contain any milk ingredients. All of that has got to go, for a successful gluten free trial. If you’re breastfeeding an older child (over age two or three years), even that milk source may arrest progress with this intervention.
- You will have to replace all foods removed with foods of equal or higher nutritional value. If your child relies on dairy protein all day, you will have to work through measures to bust this picky pattern, and find different proteins. Read this book on milk-addicted kids for more help.
- Fix other nutrition deficits, especially weak iron status, which is common with undiagnosed gluten sensitivity. Have your doctor check your child’s ferritin level; it should be in a functional range of 40-60 (lab range will be reported as “normal” when ferritin is as low as 10. This may be “normal” but it is not healthy.)
- Fix your child’s gut micro biome; assess it professionally, and have your provider guide you to optimize absorption and elimination. Your child may need supports like digestive enzymes, probiotics, or herbal tools. I provide screening with stool tests in my practice as well as detailed guidance on how to use corrective supports.
If you haven’t yet engaged a comprehensive nutrition intervention for your child with autism, let’s talk! For many children, when done thoroughly, and with compliance on your part, you may be surprised at how your child’s functioning can improve.
This will make a lot of people mad:
Feeding clinic may be a waste of time and money
Not at all to diminish the important work and skills of occupational and physical therapists. They work hard at helping kids learn to chew, swallow, touch, and tolerate the act of eating – kids who are tube fed, kids who’ve never mastered chewing by age four or six years, kids who only drink but can’t eat, kids who gag and vomit to different food textures, kids who stop eating at the slightest interruption or sudden sound, kids who are in growth failure because they can’t eat. This is important work.
But there are important underlying triggers for these feeding problems to rule out and repair, before you spend thousands on sessions in which you sit behind a two way mirror and watch your child try to touch whipped cream, corn chips, and broccoli with peers, before the rigorous home sensory protocols before each meal (trampoline, Nuk massage, Wilbarger protocol), not to mention stringent food routines at the table.
If your child has had a traumatic brain injury, a spinal cord injury, began life on a feeding tube, or has a physical or developmental disability that impedes feeding skills, then of course rehabilitative therapy is in order.
And, after you’ve been through challenges unimaginable when you became pregnant – that is, the challenge of your kid actually not being able to eat, gain, and grow – and your child has suffered, you’ve been to every specialist, and you know your local children’s hospital hallways backwards and forwards, it can feel downright offensive, insulting even, that there may be something simple, overlooked, that could fix this. Wouldn’t your team have told you?
A lot of parents get stuck right there. They outright reject that a solution as simple as correcting nutrition and digestion first could be a thing. Unless this is a complex, inscrutable drama that requires ivory tower specialist care, and week after week with an occupational therapist, a lot of folks feel like bad parents. So they turn away from the simple.
Forgive yourself for not knowing. Forgive your care team. Occupational therapists, GI doctors, and even pediatricians are not nutritionists. This isn’t their purview. If they had known, they would have told you, of course!
For kids who go from infancy to preschool with a mysterious lack of progression for feeding skills, screen for underlying physiological triggers that can keep your child from being able to swallow, chew, and eat normally. Even for kids with physical disabilities and complex conditions who benefit from feeding therapy, footwork on these underlying interlopers can make eating work even better.
Also, know this: I had one of these kids. Been through it, seen it, worked with OTs and PTs (some fabulous, others not so much). I know the trauma, cost, and stress that accompanies this situation. And, yet another mom just left my office today, telling me with deep exasperation what a waste of time (and money – thousands of dollars, not covered by insurance) it was to send her young son to a renown feeding clinic, for months, carefully following instructions for the home plan too, only to get feeble progress out of it at all. Is this you?
Before you go through costly, strenuous therapy that may inch your child forward, but not quite produce the progress your child deserves to grow, thrive, and just plain enjoy food – investigate these problems. Your child will be healthier, because they will be able to digest and absorb food more comfortably.
Nutrition and digestive problems turn kids into picky eaters
Fix these, and their appetites can quite abruptly improve. If you need help fixing these, schedule an appointment with me. You may see changes in as fast three to four weeks, depending on your child’s condition at start, and your compliance with a nutrition and gut health care plan tailored to your child. Here we go:
1 – Fungal Dsybiosis: Your child may have had thrush, you may have had a C section, maybe there were antibiotics in the mix for you while pregnant or breastfeeding, maybe you have a lot of yeast infections in your past, or maybe your child needed antibiotics early, often, or both. Whatever. Somehow, your child may have been left with a fungal burden somewhere in the digestive tract. What this does is (a) buffer the stomach so it is less acid, which makes you never feel that hungry (b) constipate you so you never feel like eating because you are always full of ______ (c) give you serious cravings for very few foods, namely, starchy sweet stuff, or dairy food and (d) bloat your belly. Solution: Screen for fungal dysbiosis with stool or urine testing; ideally include Candida and Saccharomyces antibody testing too (blood tests). Give a protocol to drop the fungal burden and restore healthy gut bacteria balance. Your kid will feel more hungry, poop more regularly, and will want new foods, usually in about 3-4 weeks. Other nutrition measures may be needed, but this is a foundational piece that can relentlessly dog kids’ appetites. Note: Probiotics can help, sort of. The stuff on store shelves is usually too low potency to make a dent for kids who truly have a significant fungal burden in the gut. If you’ve used them and your kid is still picky, they’re not working, and you need a deeper strategy.
2 – Bacterial Dysbiosis: Your child may have a bacterial imbalance in the stomach, upper small intestine, or colon. This can make eating very uncomfortable. The small intestine normally harbors little bacteria; when too much is there, kids can have a lot of trouble eating. This will continue until these infections are treated. This is called Small Intestine Bacterial Overgrowth (SIBO), and your doctor may need to prescribe antibiotics to treat it. Some herbal treatments work well also; probiotics can make it worse. Kids with bacterial dysbiosis feel full quickly. They may gag, or vomit violently, even to the point of shock (they go limp, become pale, you may have even rushed them to the ER where they needed IV fluids – this is FPIES) if they eat the wrong foods. Pressing children to eat when an infection is active in the gut is truly unnecessary and will be unsuccessful too. Solution: Talk with your GI doctor or pediatrician about possible SIBO. And, do functional stool testing such as GI MAP (one of the tests I use in my practice) to identify what microbes may be interfering. This test can give detail on what your child needs to balance bacteria in the digestive tract, so they can eat and digest food more normally.
3 – Reflux Medications: These drugs, which are not approved for use in children by the way (with one exception), diminish digestion by reducing acid in the stomach. Great for an initial reprieve from what may (or may not) be a painful reflux, but bad longer term. The more stomach acid is reduced, the less your child is able to digest food, and the more food will sit in the stomach and – you guessed it – reflux up to the throat. Many kids in my practice end up on highest allowable doses of these drugs, but still have feeding problems with weak appetites and texture aversions. Reflux medicines also exacerbate fungal infections in the digestive tract, creating even more dysbiosis and difficulty with feeding and eliminating. Solution: Unless your child needs “mercy” dosing of a reflux medicine to ease pain, talk to your doctor about weaning off of it. For more help with that process, check this blog and contact me for an appointment.
4 – Weak Iron and Zinc Status: These minerals have a lot to do with what we feel like putting in our mouths. Even adults with poor iron or zinc status will do weird things like hang around, sniff, or even lick gas pumps, chew on paperclips, or refuse to eat vegetables. If your child is mouthing objects beyond early toddlerhood, or insists on eating non food items into school age years, it’s time to straighten this out. It could help normalize eating “behavior”. Solution: Have your pediatrician run labs for ferritin, serum iron, transferrin, iron binding capacity, and serum zinc. These should be solidly in the middle of the lab range – not near either end. If these labs come back looking a little weak, get guidance on supplementing these minerals. Iron and zinc won’t be well absorbed, by the way, if your child takes a reflux medicine – so this is another reason to get off that stuff. It reduces absorption of minerals and B vitamins. Not what your child’s developing brain needs.
5 – Opiates: Wow, what WHAT? Yes, your kid might just be a little high on opiates all day long. Common signs: Do they wake up from 1 to 3 AM all silly or active? Are they constipated? Do they have a crazy voracious appetite and a big head (above 90th percentile)? Are they verbally delayed? Do they bang into stuff and never cry about it? Do they really, really seek proprioceptive input, to the point of endangering themselves? Are they hyper? Do they meltdown fiercely when hungry, or if you don’t hand over that favorite mac and cheese, yogurt, or noodles and butter STAT? Addictive, opiate-like neuropeptides can form from wheat, dairy, and soy protein in a gut with certain digestive impairments. This will make a child relentlessly, extremely, fiercely picky for wheat and dairy food (maybe a little soy too). Yes, food proteins can be misappropriated into compounds that look like opiates to the brain. This happens when digestion is weak and the gut is too permissive; that is, the intestinal wall lets bigger-than-it-should molecules across into circulation, something a healthy intestine won’t do. These opiate-like compounds have various names: Dietary peptides, polypeptides, casomorphin, gliadorphin, or exogenous opiates. Urine screening is available to identify these. These will cause a lot of problems, including stunted language development, social delay, some crazy, even violent or aggressive behavior – and, uber picky eating. Feeding clinic will go nowhere if your child is swimming in opiate like peptides from milk, yogurt, Pediasure, bread, pudding, crackers – any wheat or dairy food. It’s all your child will want to eat, and anything that looks or feels different will be a non-starter. Solution: Start with my e book on milk addicted kids. If you need help getting your child out of this hole, set up an appointment to get started. Your child may need a strict gluten, casein/dairy and soy free diet (the prime opiate offender foods).
Get your kids clear of these five physiological problems and you may be amazed at how swiftly they graduate out of feeding clinic. Ignore any one of them and it is going to be a longer haul. Check out my quick video recap, click here. Thank you for stopping by.