Healing leaky gut is one of the most requested tasks in my pediatric nutrition practice. Many parents are surprised to hear me say that it is possible to repair leaky gut in children of all ages.
But what really works? There is a lot of buzz about dietary approaches, probiotics, and supplements, and less good research on leaky gut than we’d like, especially when it comes to infants, toddlers, kids, or teens. However, after twenty years in my clinical pediatric nutrition practice, I can tell you what nutrition supports I’ve seen consistently work, and what strategies often fail.
First, let’s get on the same page about what leaky gut is, and isn’t. It doesn’t mean there are actual ulcers or holes in your child’s intestine that are “leaking”. But it can mean that the intestinal wall has lost some integrity – and has become too permissive about the size of molecules that it lets pass into your bloodstream.
Another way you might hear leaky gut described is “intestinal permeability” or “hyper-permeability” – again, expressing a condition in which the intestine’s normally very selective, tight process for digesting and absorbing food has become, well, loose and sketchy!
Practitioners – myself included – might scrutinize zonulin, stool microbe studies (microbiology culture or PCR DNA methods), inflammatory markers like calprotectin, or immune markers like immunoglobulin A in a stool sample to gauge gut environment. Some doctors may order a lactulose-mannose test in which patients drink a concentrated solution made of those sugars. How these two sugars, which are different sizes, are excreted in urine can give a measure of how permeable the gut is. For more on intestinal permeability tests and their pros and cons, click here. Food allergy and non-IgE food reactions may also be measured, which requires a blood test.
Key To Restoring Leaky Gut Is….
Key to restoring a healthy gut is repairing “tight junctions” – these are the microscopic, traffic-cop structures of your gut. They form a tight seal between cells in the intestinal wall. When these junctions are injured, they break down – and larger-than-ideal molecules cross from the intestine into the bloodstream, triggering all sorts of reactions to stuff that your bloodstream and distant tissues were never meant to see in the first place. These might be anything from polypeptides (over-size fragments of food protein molecules that can masquerade as false hormones, false neurotransmitters, or invading antigens) to toxins, getting access your body from your gut, when they’re not supposed to. This permeability scenario is a catch-22, in that it can easily perpetuate itself, as more injury persists in the gut.
The intestine is our largest immune system interface with the world outside the body – so leaky gut can also wreak immune havoc, from autoimmune problems to frequent infections and illnesses.
What injures the gut? Lotsa stuff – and, making this harder is that leaky gut symptoms are often diffuse and insidious. They can evolve gradually, or with an abrupt onset that never quite resolves. Leaky gut can trigger symptoms in the GI tract of course, but also far from the gut, like headaches or joint aches, stiffness, pain, fatigue, or frequent colds and infections.
image courtesy Jill Carnahan MD
Here Are Usual Suspects for Triggering Leaky Gut
- antibiotic use
- intestinal Candida or other fungal species infections
- undiagnosed food allergy or food sensitivity
- intestinal flu or virus
- food poisoning
- non celiac gluten sensitivity
- poorly tolerated routine vaccinations
- chronic stress
- traumatic brain injury or concussion
- C section birth (baby misses exposure to helpful vaginal flora)
- mom treated with antibiotics in pregnancy or at delivery for any reason
- mastitis (mom needs antibiotics while breastfeeding)
- radiation therapy
- being underweight especially if you’re a baby, child, or teen
Most kids have had at least one of the items on this list. But that last one is key. In itself, underweight can cause intestinal permeability especially in children. You can address all the other triggers, but if your child is underweight – that is, more than fifteen percentile points off his or her expected pattern – your child’s gut can remain “leaky”. There simply isn’t enough raw material and energy on board for that tissue to repair itself, while your child is also trying to grow.
Here’s the rub: Generally, nobody scrutinizes your child’s growth pattern that closely (I will be honest and tell you that I even see gastroenterology work ups overlook this level of detail – and I routinely read my patients’ reports from their GI specialists nationwide). Without defining your child’s actual expected growth pattern – that is, where your child should be today given parental stature, pregnancy history, birth/delivery history, and growth history since birth – then you don’t know if your child is underweight or undernourished. You can learn more about that here.
I meet many children who are underweight. Sometimes it’s caused by families placing kids on diets that are too restrictive. Or some families have become so traumatized by frightening reactions to foods that they just don’t know how or what to feed their children – so, they don’t. Sometimes it’s caused by a well meaning practitioner who didn’t monitor growth and food intake, because they’re focused on lab tests and supplements instead, gave no guidance on what to actually eat, and encouraged a restrictive diet without effective replacements for foods taken out. I have also seen underweight caused by reflux medicines, which can diminish appetite and digestion when used for more than a few weeks or months. When it comes to picky eating, this too will drive growth status down in kids, injuring the gut too via underweight and poor diet.
The flip side of this coin is assessing what your child eats – how much and what – and the only way to discover if your child eats enough non-triggering, nourishing food is to assess a food diary (part of every new patient intake I do), and then align it with the growth assessment. The food your child eats is the lumber that will be used to do the gut repair – so it has to be the right stuff, in the right amount. Supplements (including glutamine, which is a helpful amino acid but not an energy source), herbs, and probiotics don’t provide this raw building material. I meet a lot of kids who have been given a lot of supplements, lab tests, antifungals, special diets, and measures to repair leaky gut. But they’re still struggling – because this essential growth and feeding part gets lost in the shuffle. But put the right feeding plan with the right supplemental supports, and boom – now you’re talking!
Here’s What Works to Repair Leaky Gut In Kids
- Balance gut microbe environment with herbal or prescription agents to directly address fungal burden, Clostridia burden (even commensal strains can be problematic if they far outnumber other helpful strains), Strep or Klebsiella, parasites, protozoans, and whatever comes up on testing. Combine this with probiotic supplementation that matches your child’s stool studies. My preferred tools for assessing this are GI MAP and Doctors Data Stool Microbiology.
- Customize the special diet to your child. Skip dogmatic, one-size-fits-all approaches.
- Give enough protein! Kids may need anywhere from 1 to 2 grams of protein per kilogram bodyweight per day depending on degree of growth impairment.
- Give the right protein; assess first which proteins are triggering with lab studies. Replace trigger proteins with equal or better value non-trigger protein sources, and keep them varied.
- Use free amino acids. Supplementing with amino acid mixes that give all 8 essential amino acids (and not just glutamine) has been a big bonus in my practice for kids who need deep gut repair. Formulas and powders are available. These give the gut direct access to building blocks for new tissue growth and repair. I use anywhere from 5 to 15 or even 30 grams daily of this protein source, depending on a child’s needs or status. Caveat: These won’t work well without an adequate total diet around them to support energy needs.
- Give enough total food including “clean” (non sugary) carbohydrates, which are crucial for growth in children (carbs preserve protein for structure and function, and keep it from being burned for energy) and ample healthy fats and oils. Kids can need 4-6x more calories per pound than adults, depending on age and growth status. Don’t feed them like little adults – give energy-dense, nutrient-rich food.
- Mastic gum, licorice root, zinc carnosine, glutathione, mineral-rich foods or products like Restore are just a tiny sliver of the thousands of products that can aid gut tissue repair. Work with a knowledgeable provider who has used these in children before. Using these tools is a routine part of my practice.
- Correct sleep pattern so your child can sleep deeply and wake rested. Sleep is when our organs are busy with repair and clean up. Hint: Children who are underfed tend to sleep poorly and wake more often.
- Minimize stress in your child’s world. Don’t discuss “leaky gut” with younger kids and don’t frame food or their bodies as problematic. Use positive language and emphasize the power to heal, which we all have.
- Give it time (like, months), be chill, and remember that your child’s body is a miraculous thing with its own innate drive to grow, repair, and heal.
And Now For The Leaky Gut Fails…
- Using rigid diet strategies for growing kids can be too restricting to support growth, gain, and gut repair. Yeast free diet, GAPS, ketogenic diet, AIP, SCD, Paleo, or Body Ecology all have merits (and devotees!), and I use components of all of them in my practice. But in themselves, none of these were created for use in children (except ketogenic diets for seizure control) and can fail when children are already struggling to gain or grow. If you’re not seeing good growth, gain, and progress in behavior or food reactions with one of these strategies within 2- 4 weeks, or if initial improvements lapse quickly, then it probably isn’t right for your child. Customize to your kid instead!
- Needing your child to like any of this, including taking supplements, having blood draws, or accepting different foods. You’re the adult. They’re not going to make it easy for you – that’s a given. Hint: Picky appetites can improve with addressing these three steps – don’t assume your child “won’t eat that”.
- Staying on reflux medicines for months at a time. These will work against your gut healing efforts by keeping pH in the stomach too weak to initiate good protein digestion. They will also cause your child to feel less hungry over time, to eat less, and to become more picky – thus leaving your child underfed and unreplenished for the task of gut repair. Learn more about the downside of reflux medicines here.
- Using glutamine, vitamins, minerals, or lots of supplements before you situate the right feeding strategy for your child. Feeding strategy means knowing what foods to use, how much and which sources of protein, fats, and carbs, and for how long, to support your child’s expected weight and height.
- Being aggressive with fermented foods, probiotics, or too much Saccharomyces boulardii. These can backfire if used for too long or at too high a dosage, and may even start to create their own dysbiosis or discomfort.
- Leaving fungal, parasite, SIBO or SIFO, or other dysbiosis untreated or under-treated. This can interrupt appetite, digestion, and stooling and keep tight junctions from sealing up.
- Giving up after 2-4 weeks. This is a restore and repair effort that may take months, depending on how long your child’s gut has been in the weeds.
Want help? This is a lot! Let me sort the best options for your child. Contact me today to set up a time to work with me remotely or in person. Or, peruse my options for books and on-line-course support.
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.
Camel milk truly is different from milks that we make, or cow, goat, or sheep milk too. Here is a detailed comparison of what’s in camel milk versus human breast milk. But one thing all mammalian milks have in them is a protein called casein, which is often allergenic. Even as casein varies across species and can be easier to tolerate depending on the animal it comes from, generally, all casein can turn into a littler protein chunk called casomorphin. This can be a big trouble maker.
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 can come from a diet that uses mostly casein as a protein source. When those signs are active, kids are usually turning that casein into casomorphin, which is potently addicting, making for an extremely picky appetite, causing constipation and terrible behavior. If this is your kid, buy this e book. You’re welcome. It will save you a lot of time, pain and agony in feeding clinics, GI doctor’s offices, or in surgery avoided for a G-tube.
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 casomorphin, the opiate-like neuropeptide I’m talking about – 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. Here is a collection of some research on camel milk nutrition and how it can work for kids with other-milk allergy.
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.
I spend hours each week researching products, recipes, and meal strategies for my very special pediatric clients. I also live in Boulder, Colorado – ground zero for foodie start ups (even my son’s baby sitter started a food company whose products are now in Whole Foods and other store shelves!). Just about every time I go to the grocery store, there is an interesting new product to check out around here.
Whatever I can find on store shelves right down the street, you can find on line. There’s no excuse to miss out on healthful, real food for your kids, even if you’re short on time and your kids have special diets or food allergies. Here’s my latest favorites for parents who don’t have time to bake, cook, or prepare scratch snacks. I often post new finds on my Nutrition Care Facebook Page too, so be sure to follow me there!
Tres Pupusas – Years ago I ate these delicious pupusas hot and freshly made at our Farmers’ Market. Now they are on store shelves, in the freezer section. Gluten free, organic non GMO masa (corn) flour pockets, with options from vegan (dairy and gluten free) to meaty (carnitas) or with cheese. Nicely sized for little kid hands (there’s even a bite sized mini pupusa), they make good finger food. Throw in a dip for your kids’ snacking, like avocado, hummus, or salsa.
Feel Good Foods – This is a good go-to for teens or college kids who have a microwave or hot plate and big appetite. This company’s egg rolls, potstickers, and other good stuff are gluten free, with several dairy free options too. Tasty if you have time to heat in your regular oven too. The pot stickers even come with their own gluten free dipping sauce. Have them ready when your starved kids come home from school starved, mad, and ready to kill you because they didn’t eat all day.
Capello’s Foods – Here’s an interesting line up of products: Gluten free, grain free manchego pizza, pastas, and… cookie dough?! If you can’t scratch-bake those lovely hypoallergenic cookies for the classroom party or your kids just like eating cookie dough, you have that option. And pizza – so missed by kids who don’t do dairy – can often work with manchego cheese (sheeps’ cheese), which some kids tolerate when they do poorly with cow’s milk or even goat cheese. Capello’s pizzas are the real deal – delicious, and you can build in more toppings if your kids like – chopped olives, basil or spinach leaves, bell peppers, or pepperoni. Almond flour is the base for these products.
CauliPower – This cauliflower crust pizza has taken the media by storm. Several topping options, with a crust based on cauliflower, and crazy good. All have cheese, but you can buy just the crust and build your own (try this cheeseless combo: Tomato sauce, salami, chopped olives, fresh basil leaves, scallions, oregano sprinkle and olive oil drizzle). Throw it in the oven 15 minutes before kids get home from school and you’re good to go.
Chebe – This product has been around for years. For Paleo, grain free, or gluten free diets, it’s a winner for giving your kids a sense of “bread”. It is basically tapioca flour, boxed as a mix, to which you add an egg, some vegetable oil, and liquid (water or almond milk). Period. I know a few noses will wrinkle at the thought of tapioca flour as Paleo, but the fact is, one of the biggest mistakes I see when kids go Paleo or GAPS is that they are underfed, their growth slows down, and they get cranky – usually because they’re eating too much fermented food, too much protein, and not enough good carby stuff. Kids do need carbohydrates to sustain normal growth patterns, sleep, focus, and to not feel anxious all day. So try this fast-to-prepare item and shape it into rolls, breadsticks, buns, or focaccia. Mince in some peppers or scallions. Plain, with herbs, slather on butter, ghee, olive oil, nut butters, or cut into awesome sliders and stick in a slice of prosciutto with mustard.
There you go – Five mostly heat-and-eat goodies to get your kids fed easily when you can’t prepare much of anything. Be sure to check each of these manufacturers pages for recipe ideas with their products too. Enjoy!