Our Family’s Story and Why I Do This
When my son Owen was 3, he started to have trouble in his preschool. His teacher said that she’d always been able to figure out an effective consequence for bad behavior for her students – but not this guy. When he was 4, the trouble increased. He was referred to as “spicy” and I was asked what I gave him for breakfast. Not a great trajectory, so far. And yes, he was difficult to parent at home. He was rather destructive, very emotional, and had some interesting play patterns. The pediatrician said “he’s a boy.” I knew, because by now I have seen other 4 year old boys, that what I was seeing was different. By the third time I heard the “it’s a boy” line, I was kind of angry. I was really beginning to think something was wrong with my son, and the doctor was not going to help me figure it out.
Right around this time, my nephew in FL was diagnosed with autism on his third birthday. It was so very devastating to my brother-and sister-in-law. We all knew this was coming, but getting the diagnosis was literally like a punch to the gut for them. We all started looking for a doctor to help Logan. We ended up finding a local developmental pediatrician here in town, but Michael and Laura found good care in FL. Logan is now the cutest, high-functioning 11 year old around. But finding this doctor made me think “Why don’t we take Owen to see her?” I knew something was setting him off, because some of the time he was fine, but I wanted help figuring out the triggers. I was no scientist, and didn’t want to waste time. When I look back on his toddler and young childhood years, I sometimes feel sad because life was very stressful with Owen’s behaviors; I feel like we all missed out on some of the typical experiences families seem to have. I was happy to put him to bed each night, we needed a break to regroup for the next day. I know a lot of you here can relate to this.
We took him to the doctor, and left with an armload of lab kits. The doctor had a protocol she wanted us to start, and included in that was the removal of gluten. We also started giving him zinc, cod liver oil, some really good vitamins and minerals – and we waited for the lab results to come in. I also had to learn what gluten is, and where it is, and what to feed him. So I started reading and learning, and thus began our journey of trying to heal our son.
Fast-forward 8 years: Owen is now 12. He players center forward on two soccer teams, and was even designated MVP on his school team. He does well at an academically-rigorous school. He has some good friends. He is very witty and makes us laugh a lot. People seem to enjoy being around him. Does he still have struggles beyond what kids normally deal with? Some – he was diagnosed with PANDAS in kindergarten, so he takes medicine to help with that and has some tics. Anxiety goes with this territory as well. His affect is off, so interpersonal relations aren’t quite right. He has some things going on we are still trying to figure out. But his gut is in good condition, after de-yeasting him, pulling heavy metals out of his body, working on lowering inflammation in his body, improving his methylation cycle, and lots of other things. He patiently endures his restricted diet of gluten and casein-free. He takes quite a few pills twice a day. I’m sure he eats more veggies than most of his friends. He’d like to eat some things his friends eat, but he also seems quite content with his current diet and would tell you he likes what I serve him – usually!
I tell you this because even though he was never truly diagnosed with anything but PANDAS, (although his “working diagnosis” at the the specialist’s was ADHD), we still saw great improvement in his health by doing these biomedical treatments for him. When he was 4 and 5, he constantly had a red under-eye area, was pasty, hyper, had weird skin things that would come and go, and took Zyrtec for allergies. The labs showed heavy metal toxicity, yeast and microbial overgrowths, gene defects, food sensitivities, a serious lack of glutathione, etc. For a kid who didn’t even have a diagnosis, he sure had a lot of things going wrong in his body. Slowly, over all these years, he has turned into one of the healthiest kids I know. While the kids around him in class are missing school every winter due to sickness, he moves through the season pretty easily. This ride has been as frustrating as it has been rewarding. When we weren’t even very far into this journey, I remember telling someone that biomed was not for the faint-of-heart. So many labs, expensive doctors, expensive drugs, eating became a whole new ball game… and sometimes it seemed that none of it was doing anything except stressing us all out. But when I stop to remember where he was – sick-looking, hyperactive, red cheeks, stuffy nose, the looks from other parents, and the lack of playdate invitations – and then look at him today, I would of course do all of it again. No, he is not the poster child for best behaved, or best grades, or most helpful around the house, but his trajectory has changed. He is generally healthy, and as the saying goes, that’s a lot to have.
I am not here to tell you that changing his diet did all of that. But changing his diet, plus the supplements, plus the medications when necessary, which allowed his body to heal, changed that for him. Diet was a tool we used. When you look at the Generation Rescue website, they have a starter’s guide – #1 is implementing the GFCFSF diet. On the ARI website, parents have rated the interventions they’ve used – nothing works consistently better than dietary interventions and non-drug supplements. Drs. Baker and Pangborn’s book – gut healing at the center. Also the Whole Body Disorder chart. Gut healing is at the center every time. And long story short, that’s how I got into this. I wanted to be able to help other people take a different approach to improve their health by working on healing their gut.
Why Should You Consider Changing Your Child’s Diet?
Dietary intervention is an evidence-based, medical approach with a large body of work supporting it. Don’t believe “there’s no research showing the diets work.” And of course the anecdotal evidence from all the families who have used dietary intervention to improve their child’s health is plentiful. For some kids, removing casein is a game-changer. For others, following a strict GFCFSF diet for 6 months yields measurable and observed results when combined with other treatments. There’s everything in between, as well. You know your child best, so you are the judge. There’s no risk in trying, and there are many resources to help, you don’t need to do this alone. As a side benefit, if everyone in your home eats the same diet, other people just may improve their health, as well! Happens all the time.
Things affected by diet (Kelly Dorfman):
autism, aggression, allergies, anxiety, behavioral issues, chewing on clothing or other items, clumsiness, constipation, dev. delay, diarrhea, ear infections, eczema, hives, hoarse voice, LDs, pica, picky eating, rashes, reflux, seizures, SPD, sinus infections, sleep problems, speech delays, vomiting, etc. System-wide.
The gut and the brain communicate bidirectionally to modulate brain function and behavior. Gut bacteria produce neurotransmitters like serotonin, dopamine and GABA. Basically, the makeup of our gut bugs can influence how we think and act. This is why the gut is often referred to as the second brain. For instance, in the case of a yeast overgrowth, toxins from the yeast get into the bloodstream and cross into the brain, where the toxins cause symptoms like brain fog, spaciness, or even acting drunk.
“Binary law of nutrition” – nutritional problems are either that something is bothering the body, or something is missing from the body.
Really, the bottom line is to improve health. The first thing we can do to improve how our body functions is to improve gut health. That’s true for everyone, but especially someone on the spectrum. Other therapies have a much better chance of working if we can get our kids’ guts working so they aren’t in pain, or have an immune system constantly on attack mode, and getting the nutrients where they need to be in the form they need to be in.
Overview of Foundational Diets Used in ASD
These diets are usually the most immediately helpful, and with the most help available by other people, both kids and adults, who have used them. The key with any dietary change is to be prepared. I highly recommend going to the TACA website, it has about any resource you need to start the diets. TACAnow.org.
Gluten-Free, Casein-Free, Soy-Free
The basis of this diet is called the Opiate Excess Theory, in which undigested or partially digested fragments of food escape the digestive tract due to a leaky gut, and cross in the brain. The fragments of gluten, casein and soy are called peptides, and are molecularly similar to the opiate class of drugs. So the kids CRAVE mac-n-cheese, pizza, ice-cream, yogurt and the like because they are ADDICTED. Their brains want it and when it doesn’t get it, their brains are not happy – mood, behavior, cognition, social engagement, it’s all affected. After our son was GF, he accidentally got some gluten and his pupils were very dilated, and he became completely unreasonable, like someone on drugs might be.
Additionally, these 3 foods are some of the top allergenic foods. Many kids are allergic to them, and eating them causes damage to the GI tract and systemic inflammation. It’s also believed that a large portion of the population has gluten sensitivities, with delayed reactions. This also contributes to a leaky gut.
This is the easiest diet to start with, and you implement it in stages:
For two weeks remove all dairy and be sure to supplement with calcium according to your child’s age and size, about 800-1200 mg per day. The calcium supplement should also contain magnesium.
Remove all gluten, along with all dairy, for the next two weeks.
Remove all soy, along with all gluten and dairy.
This is a diet where you need to aim for 100% compliance. Make sure people who spend time with your child or help care for your child understand the mission and that you expect 100% compliance. This is going to be a really big change, but you will be surprised by how quickly you will adjust. Just plan ahead – pick a time to start the diet when you will be around your child most of the time so you can control their diet. They may regress at first, this is due to the opiate issue, and will resolve.
The Specific Carbohydrate Diet (SCD)
You might chose this diet to start with if your child has inflammatory bowel conditions and chronic diarrhea, or you’ve tried GFCFSF and it doesn’t seem to be helping. If you know your child has trouble digesting grains, this would also be a good diet to start with. The distinctive feature is the removal of all complex sugars except honey and fruit sugar, and all starches and grains. It is GF and SF, along with artificial ingredient-free. The goal is to “starve out” the bad gut bugs by avoiding the foods that they eat. This is not specifically a casein-free diet, but it is highly recommended to avoid all casein until you are able to determine wether or not your child has reactions to it.
On this diet, you can have meat, fish, eggs, nuts and seeds, certain beans, all non-starchy veggies, and fruit. It’s not low-carb, but specific carb.
This is a more difficult diet to do if your child has nut, egg or meat allergies, but can still be done. Remember it’s a healing diet, so not necessarily for long-term. Websites for SCD are www.breakingtheviciouscycle.info, www.scdiet.com, www.pecanbread.com and www.lucyskitchenshop.com. Elaine Gottschall’s book is called Breaking The Vicious Cycle.
GAPS (Gut and Psychology Syndrome) is a variation of SCD. It adds fermented foods and beverages and homemade broths to SCD. This is a diet designed for ASD by a medical doctor. It allows more fruits and vegetables than SCD, and emphasizes probiotics. Websites are www.gapsdiet.com, www.gaps.me, nourished kitchen.com/what-is-the-gaps-diet, and Dr. Campbell-McBride’s book called Gut and Psychology Syndrome.
The Body Ecology Diet (BED) is one focused on clearing up yeast and dysbiosis to restore a proper “inner ecology” and was developed by Donna Gates. Out of the three, this is the most difficult to begin with. There are three main distinctions:
Addition of cultured foods (also called fermented), like coconut kefir or water kefir, kombucha (also a beverage), sauerkraut, pickles, and kimchee – a spicy, Korean condiment.
Changing the quality of fats and oils in the diet
Drastically reducing carbs and sugar
The BED program specifically designed for kids on the spectrum is called BEDROK (Body Ecology Diet Recovering Our Kids). This involves removing ALL sugar, in any form, in addition to all gluten, all casein and all processed foods. It allows some grains and makes heavy use of fermented foods, especially coconut. Websites are www.bodyecology.com, and www.nutrition-healing.com/bodyeco.html.
Just to make things more confusing, there are some other compounds that are often problematic for people with compromised gut function. As you observe how your child responds to different foods, you may begin to notice connections between some of the following compounds and negative reactions.
Phenols and Salicylates – compounds that have been noted to exacerbate hyperactivity, fatigue, diarrhea, sleep problems, aggression and irritability. Phenols are found in nature as salicylates in foods like red grapes, apples, berries, almonds and honey. Man-made phenols are derived from petroleum and are found in food additives like artificial colors, flavors, and preservatives. The Feingold and Failsafe diets remove these compounds, and have been found to be very helpful for ADHD. Websites are www.feingold.org and www.failsafediet.com.
Amines and Glutamates – amines are produced by the breakdown of amino acids, as in foods cooked for a long time, and glutamates are found naturally in foods such as peas, tomatoes, corn and sauerkraut, but also in MSG and additives containing MSG, like autolyzed yeast extra, or commercial gravies, broths, soups, meat-flavored vegetarian foods. The Failsafe Diet addresses this substances.
Oxalates are only absorbed in the case of a leaky gut, normally this compound isn’t absorbed. But once in circulation the body stores this toxin in bones, the thyroid gland, any damaged tissue. Once in the tissues, they create pain and inflammation. Oxalates are found in very healthy, nutrient-dense foods like almonds, leafy green veggies, many fruits, beans, sweet and white potatoes. The best websites to learn about this are The VP (vulvar pain) Foundation at the vpfoundation.org and lowoxalate.info/ then click on Find the Support Group.
There are some things that need to be removed from the diet no matter which diet you choose to start with:
Food additives like artificial colors and flavors (red #40, vanillin)
Preservatives (BHA, BHT, TBHQ)
Artificial sweeteners (aspartame, saccharin, sucralose as found in NutraSweet, Equal, Sweet N Low and Splenda)
MSG – print a list of “code names” used to be sure you avoid this! Examples include hydrolyzed vegetable protein and other hydrolyzed items, autolyzed yeast, yeast extract.
Trans fats – partially hydrogenated oil found commonly in mayo, margarine, peanut butter products fast foods, fried foods, and many baked foods.
There are other diets that can be helpful, this is just an introduction to the most commonly-used for autistic kids.
Common Pitfalls and Obstacles
Common reasons to not try a special diet:
My doctor said…
No GI problems
Too hard
Picky eater
Removing favorite foods
My fault if I give wrong foods – vey scary
Compliance with school, family
Calcium = milk and cheese
Solutions to common reasons:
“No evidence” – used to be true, who would have done those studies? But in 2008 the AAP admits “they may have been wrong”.
Diarrhea is not the only GI problem! Studies show that almost all kids on the spectrum have GI dysfunction. Does your child have rashes or other skin ailments like “chicken skin”? Our skin is often a reflection of our gut!
It’s a SHIFT, something to get used to. But feeding your child is not new, you still go grocery shopping and cook/prepare meals. What you are shopping for and giving them is different, but this concept is not new – but it will take adjusting to. And it doesn’t take as long as you may think.
Kelly Dorfman’s book What’s Eating Your Child? Link to article: http://www.autism.com/treating_picky. There could be medical reasons for picky eating, so make sure they are being evaluated by someone who knows what to look for. Nutritional deficiencies are often a cause of picky eating.
Replace them with foods that don’t hurt them. Takes some trial and error. Maybe it’s just that they like their foods round, or not crunchy, or not hot. Also, go with something they are familiar with – replace mac-n-cheese (soft and creamy) with a creamy soup like butternut squash. Pick your child’s top five favorite foods and find recipes or products to use to replace those foods with versions that will be safe for your child’s new diet. Introduce new foods slowly, and overlap with their current foods. Don’t allow siblings to eat forbidden foods in front of your child.
It IS scary to think a food can really hurt your child. But if your child has a life-threatening food allergy, you probably already know about it and do everything you need to to keep the food out of their life. It’s true that there might be a set-back in some symptoms if a newly introduced food turns out to be an irritant, or outright sickness, that’s always a risk. But continuing to let them eat foods that are somehow damaging their body is a far greater risk.
Having other family members and school comply with your child’s new diet can present some challenges. The best approach is to try to enlist the resistant family member to help by asking them to help monitor the trial, and giving you feedback. If they feel like their opinion will be valued, it could change it for them. They really need to understand why you are doing this, and how long this trial period is.
My own experience with schools is that teachers and other parents are happy to do what they can to help – which usually involves me purchasing or making a similar food. I always send in their lunch – even now that my kids are a little older they don’t mind it. The other kids want to make sure my kids have what they need and have learned about gluten and dairy sensitivities along the way! Bottom line here is that you will need to control the food, and be firm with those in your child’s life.
Also, if your child has an IEP or 504 plan, federal law says they must comply with the plan as it is written.
8.A big hangup people have is the idea that milk = calcium. Or the “have to’s” : have to have bread, or cheese, or chocolate, or anything else. Or not letting your kids have sugar is just mean. It is important to have calcium of course, but you can give your child a supplement that has the right mix of vitamins and minerals that makes it an even better source of calcium than the milk. There are so many special diet recipes out there, you can make a version of almost anything you want that’s safe for your child.
Becoming educated so you can make the best choices for your child is the best way to get started. I highly recommend the TACA website for help in how to get started. Remember that we are all biochemically unique, and what’s good for one person isn’t always good for someone else. There’s a lot of help available for diets!
Resources:
tacanow.org
generationrescue.org
autism.com
nourishinghope.com
Richmond Biomed
Jessica can be found at True Nutrition RVA, where you can schedule a consult and learn more about all she does.