Unless you have been in an Angry Birds Coma for the past year you might have heard this Paleo Diet concept is pretty powerful at reversing a host of problems. I’ve been learning about this topic for 12 years now and I’m continually amazed not only at how powerfully good nutrition and lifestyle changes can affect health, but also the variety of issues that can be addressed. Unless you have even less of a soul than John Welbourn (just kidding, John probably has a soul) the following story will likely tighten your chest up a bit. I know it did and does for me and for a very simple reason: A child’s life was completely changed for the better, in many ways saved…and all from a simple nutritional intervention.
This story relates specifically to Autism and although there is increasing awareness of the role of gut permeability and various food intolerances in the etiology of this condition, there is also a remarkable amount of confusion. The concept of “gluten free” is making it’s way into the collective consciousness of many people in the autism community, but unfortunately that is only one of many steps necessary to really affect change in this condition. This will be made obvious by the accompanying commentary Dr. Mat Lalonde (Aka- “The Kraken”) provides after his experience speaking at an autism research conference. Thank you to Rachael for sharing Scarlet’s story, and to The Kracken for taking the time to comment on this piece. If you know someone with kids who suffer from autism, please pass this along.
My name is Rachel, and I am a 30 year old mother of 4 children. I have been interested in fitness and nutrition for years, but followed a traditional bodybuilding diet until I began having stomach pain when I became pregnant with my fourth baby in 2008. Suddenly, a protein shake or other foods gave me unbearable stomach pain within 20 minutes of ingestion. Sometimes this was even accompanied my vomiting, and got bad enough that I landed in the ER a few times. None of the doctors seemed to know what it was. They guessed lactose intolerance or IBS and sent me home. At 22 weeks pregnant, I awoke in the middle of the night with the worst abdominal pain yet, and a fever. We went to the ER, and they rushed me into emergency surgery to remove what they thought could be an appendix about to rupture. This was scary and risky at 22 weeks pregnant, but necessary. The surgeon discovered that my appendix was fine, but that I had a cyst in my small intestine which had ruptured causing the infection and fever. I asked tons of questions. What caused this? Could it happen again? All of the doctors said they didn’t really know. A nurse told me to try cutting out wheat and see if that helped. It did, but I did not yet know why or how it helped. My daughter Scarlet was born full term and healthy, and we breathed a sigh of relief.
We knew early on Scarlet was different than our other 3 children. She seemed less affectionate and inclined to “stay in her own little world.” She was walking at 9 months, but had not even begun to speak after turning a year old. By the time she was 18 months, she was still not talking at all, and had lots of strange habits such as jumping constantly (I mean ALL THE TIME) and pacing or rocking all the time. She carried around objects refusing to put them down for any reason at all, and freaked out if people came too close to her. She was notoriously unaffectionate. Hugs and kisses were very rare. We took her to speech therapists, neurologists, and child psychologists.
They diagnosed her with Autism Spectrum Disorder (ASD) in September of 2010. Her language skills at 20 months were that of a normal 8 month old. She had no words at all. I started researching everything I could find about diet. I got Robb’s book The Paleo Solution for Christmas and read it all in 2 days. Then I read it again. This all made so much sense to me! For starters, I tried to get as much gluten out of my family’s diet as I could, but many people around me were skeptical, to say the least. I was met with a lot of resistance. Even though I had been eating this way myself for almost a year and the allergies, asthma, and eczema that had plagued me my whole life DISAPPEARED, and I lost 50 pounds, nobody around me believed my diet could do that. Scarlet improved a little bit with less wheat in her diet, and had about a five word vocabulary within a few months. She was still eating dairy and other grains at this point, and family was still sneaking her some cookies and such at this point.
I had begun reading for a couple hours a day on nutrition for several months, and I decided to attend a Paleo Solution Seminar in Toronto in March, 2011. Robb explained gut health, auto-immunity, the blood-brain barrier, and “brainflammation.” This was what really made the “gut-autoimmune” connection click for me. I came home determined, and tortured my husband with hours of biochemistry (I am a closet science nerd) until he agreed we had to go 100% Paleo and give this thing a shot. I no longer cared if everyone around me thought I was nuts. I knew my daughter had ZERO wiggle room, and I threatened physical harm if anyone tried to “sneak the poor baby a cookie.” I began feeding her grass-fed meat, wild salmon, yams, carrots, berries, and the like. Instead of milk and juice she has caffeine free herbal tea or coconut milk with water. To my surprise, she LOVES this food and I had no trouble getting her to eat this way. I hoped that over time, this would improve her condition. I WAS WRONG. It was much better than that!
Within ONE WEEK of Scarlet eating 100% grain, legume, and dairy free the difference in this child was nothing short of amazing. Before paleo, Scarlet said about 5 words. One week after paleo, she is using more than 20 words. It has now been two weeks on paleo and we cannot keep up with the word explosion! She can repeat most things she hears. She is pointing to objects and naming them, something she couldn’t do before. She is calling us “mama” and “dada” and we are getting all the big hugs and kisses we can handle! She can point out a couple of shapes and colors and name them. She identifies animals and the sounds they make. This FAR exceeds her goals for learning for the whole year set by her therapists. Her teacher and speech therapist cannot believe it either, but they are totally on board and even asked for info about Robb’s book and website, which I gave them.
We are so thankful for Robb and others like him who are getting this information out to families like ours. This is life-changing information you most likely won’t hear from doctors, government or media. Do your own research, and be skeptical. Check the source, follow the money, and do your best to understand the actual science. If you try going paleo, don’t cave to people who are afraid you (or your kids) will wither away or die of malnutrition without bread, milk and cereal! If you actually DO this stuff, YOU will be the proof.
Words From The Kraken
I had been meaning to give a nutrition seminar in Boston for quite some time so I was ecstatic when Nathan Rosenberg (Harvard Food Law Society) and Michal Naisteter (Paleo Meet-up group in Boston) asked me to lecture in Harvard’s Langdell Hall on March 5th 2011. The event was well received and attended by athletes, lawyers, and scientists alike. One of the attendees, an architect by the name of Todd Fix, contacted me via email after the seminar and mentioned that he would petition for my participation in an upcoming autism conference. I wasn’t quite sure what to make of the comment so I didn’t reply and eventually forgot about it. I was later contacted by Pamela Ferro; a registered nurse who works with autistic children. Pamela said she had talked to Todd and watched an online video of my seminar at the Academy of Lions. She asked if I would be willing to speak alongside Martha Herbert, Alessio Fasano, and herself at a conference organized by the Gottschall Autism Center on April 1st. “Wait, you watched an old video of a foul-mouthed, irascible me delivering what is now outdated information and you are inviting me to present at your conference on April 1st? Is this an April fool’s prank?” She was dead serious.
As I chatted with Pamela, it eventually became clear why she invited me to speak at the conference. Pamela was an acquaintance of Elaine Gottschall, a biochemist who implemented the specific carbohydrate diet created by Dr. Sidney V. Haas in order to help her autistic daughter.[i] Elaine studied the specific carbohydrate diet (SCD) and popularized it by publishing a book entitled “Breaking the Vicious Cycle: Intestinal Health Through Diet”. As a result of her relationship with Elaine and her experience working with autistic children (including her own), Pamela was well informed on the topics of digestion, dysbiosis, and intestinal permeability. She mentioned that dysbiosis and the presence of parasites in the gut, which results in chronic bouts of diarrhea, are common in autistic children. After reading up on the specific carbohydrate diet, it became clear that some of the information contained in my presentation regarding the effect of seed consumption (grains, legumes, nuts, edible seeds) on intestinal permeability could be used to complement the SCD and improve the already impressive results observed with autistic children.
The Gottschall conference was cleverly entitled “When the Belly is the Beast” and focused on the interplay between gut health and autism. As such, it made perfect sense to invite Alessio Fasano; one of the world’s leading researchers in gut pathology and celiac disease. Fasano highlighted the similarities between autoimmune diseases and autism during his lecture.[ii] One slide focused on the results of lactulose/mannitol tests performed on individuals suffering from autism and their relatives, which showed that intestinal permeability was greater in autistics and their relatives compared to adult and children controls.[iii] One could conclude that autism is the perfect storm; the offspring of two individuals who have specific genetic predispositions and suffer from increased intestinal permeability. The same study also showed normalization of intestinal permeability upon implementation of a gluten- and casein-free (GFCF) diet. Although the GFCG diet was successful in this context, the results of previously published control trials are mixed.[iv] Fasano proposes to increase the success rate by selecting a population of autistic individuals that displays known biomarkers of intestinal permeability and then treating them with a GFCF diet. This would indeed increase the odds of success but, in my opinion, what needs to be changed is the diet, not the population. The mixed results of the controlled trials are due to the diets that were employed, many of which merely replaced wheat, rye, barley and dairy with other grains, pseudo-cereals, and legumes. The diets are so poorly designed it is surprising that positive results have been observed at all. Ideally, the diets should be free of all grains, legumes, nuts, seeds, eggs, nightshades, and dairy. Meat, organs, fat and bone broth from grass-fed and/or pastured and/or wild caught animals should be eaten exclusively for a few weeks or until behavioral improvements are observed. Cooked vegetables can then be introduced, followed by fruits like avocados, coconut, olives, and palm. Finally, cooked tubers can be reintroduced into the diet while behavior is closely monitored. I plan on working with Pamela to determine the effectiveness of the aforementioned approach.
I think the number of questions I received from parents and nurses at the Gottschall conference indicates that people are starting to take the autism-gut health connection seriously. This is mainly thanks to folks on the front line, such as Pamela and brave individuals like Rachel who are willing to take a risk and give an unconventional approach a serious try.
[i] When Elaine’s daughter was headed for surgery to treat her colitis she, by chance, met Dr. Sidney Haas. He was the first physician that asked her “what are you feeding your child” and based on his recommendations she changed her diet (SCD) and it was a total cure for her. Dr. Haas was 90 years old when Elaine met him. She enrolled in college at 47 years of age to try to figure out why gastroenterologist did not tell her to change her daughter’s diet when she was having bloody bowel movements, what appeared to be “psychiatric symptoms”, night terrors, and anxiety.
[ii] Association of Family History of Autoimmune Diseases and Autism Spectrum Disorders. Atladóttir, H. Ó.; Pedersen, M. G.; Thorsen, P.; Mortensen, P. B.; Deleuran, B.; Eaton, W. W.; Parner, E. T. Pediatrics 2009, 124, 687–694.
[iii] Alterations of the Intestinal Barrier in Patients with Autism Spectrum Disorders and in Their First-Degree Relatives. de Magistris, L.; Familiari, V.; Pascotto, A.; Sapone, A.; Frolli, A.; Iardino, P.; Carteni, M.; De Rosa, M.; Francavilla, R.; Riegler, G.; Militerni, R.; Bravaccio, C. Journal of Pediatric Gastroenterology and Nutrition 2010, 51(4), 418–424.
[iv] (a) Gluten-Free and Casein-Free Diets in the Treatment of Autism Spectrum Disorders: A Systematic Review. Mullroy, A.; Lang, R.; O’Reilly, M.; Sigafoos, J.; Lancioni, G.; Rispoli, M. Research in Autism Spectrum Disorders 2010, 4(3), 328–339. (b) Gluten- and Casein-Free Diets for Autistic Spectrum Disorder. Millward, C.; Ferritier, M.; Calver, S. J.; Connell-Jones G. G. Cochrane Database of Systematic Reviews 2008, 2, Art. No.: CD003498, DOI: 10.1002/14651858.CD003498.pub3. (c) The Gluten-Free, Casein-Free Diet in Autism: An Overview with Clinical Implications. Elder, J. H. Nutrition in Clinical Practice 2008, 23, 583–588.
Adams JB, Johansen LJ, Powell LD, Quig D, Rubin RA.
BMC Gastroenterol. 2011 Mar 16;11(1):22.
Gastrointestinal flora and gastrointestinal status in children with autism — comparisons to typical children and correlation with autism severity.
Share your story
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Thank you for this important information! Was curious if any research has been done on OCD and nutrition. Also, I would love to attend a seminar with the Kraken. Is there a posted schedule of seminars anywhere? Will Mat be participating in the 8/20 Boston seminar? Thank you!
I suffered from OCD for the past 20 years or so. Tried all sorts of therapy, drugs, etc. nothing really worked. I have two twin boys (5 yrs.) that were diagnosed with autism. We went CF for 6 months, they improved a bit, my OCD died down a little. Went GFCF for a year after that, big decreases in OCD, one of the boys started talking (he hadn’t before).
But it wasn’t until this year, when we went Paleo, that my OCD has all but disappeared — completely. The only problem is erasing 20-years of conditioning, of reacting to situations and stimulus when I don’t feel the anxiety at all anymore. That will take some time, but I can say with some confidence that eating this way provided the necessary catalyst to conquer my OCD.
And the boys? I had to wait 5 years before I was finally truly introduced to them. I hope other parents of autistic children read this info, and get to know their kids much earlier than I did.
Thank you for sharing your story. My adult brother has OCD that was not diagnosed until several years ago (I suspect there are other factors in play, including undiagnosed Aspergers). My family has a history of depression, OCD, autism spectrum disorders, so this information is so important and near/dear to my heart as I’m raising two young children and worrying about them. But I am better armed with information and a more open mind than my parents, so if it were to pass that they do have these challenges, I will be better armed to deal with it.
I’ve had a lot of experience with OCD and nutrition in myself.
When I was young (in elementary school) I had OCD, tourettes, hypoglycemia, etc. It was so bad I couldn’t function, I literally went to bed at night as early as I could so I wouldn’t have to be awake. It’s pretty bad when you’re a kid in 3rd grade, and you tell your mom you don’t know if you can do it anymore and you literally want to die because you’re so miserable all the time. My mom took me to doctor after doctor, psychologists, specialists, naturalists, anybody you could think of, and nobody could figure out what was wrong. Finally I got a blood test and they found out I had hypoglycemia, I started straightening out my diet (cutting out sugar) and things got a lot better to where I could actually function. I was put on Prozac for years as well, which may have helped just a little bit for a time, but later on prozac and other medications didn’t seem to do anything beneficial. I always had some OCD problems though. I could always tell when I ate too much sugar and bad foods, my OCD would get worse, I would start having more tics (tourettes type stuff), and would just feel plain crappy. Fast forward a number of years later, I started eating healthier, exercising, and things got even better, but still a some OCD remained, although I didn’t really have problems with the Tourettes/tics anymore. I learned to manage it better over time, and realize what was OCD behavior and what was going on, but it was still there. It wasn’t until I went lower carb full paleo that my OCD has practically gone away entirely, it’s pretty much not even noticeable now, and not a problem. I also don’t have hypoglycemia and blood sugar problems anymore either.
OCD problems in people are near to my heart. I once read about a kid who was dying of kidney cancer and had something like 6 months to live. He also had very bad OCD. They asked him if he could have either his cancer or the OCD cured which would he pick. He said he would rather have the OCD cured. The kid would have rather lived another 6 months without the OCD and died of cancer than to have his cancer cured and live with the OCD. It almost makes me tear up, powerful stuff.
I would like to gather more info about the diet/lifestyle and OCD connection. I’d love to hear peoples experiences with this stuff and what has worked for them or not, or even if anyone wants to just chat about it or wants any info. Feel free to email me, Squatchy at Gmail.
Good stuff man!
Hello Jim,
I am an ocd patient from last 10 years.I tried to quit medicine while I was in holland for my studies but I became hypersensitive to sounds,touch in a certain way. I am again taking prozac from last 2 years. Please tell me that r u still on medication or not? Are you taking any supplements? Any other helpfull suggestions?
I so wish I could get my husband to read this and buy into it. His dad is really OCD. My husband is pretty much OCD with some undiagnosed Asperger’s (my opinion). He drives me nuts with his hand wringing and whatnot. It’s great to know that there is hope anyway.
essley,
You can find a schedule of my seminars here:
http://optexperience.com/events/item/opt-nutrition-series-the-science-of-nutrition-the-basics
Difficult to type through the tears. *gulp*
OK, time to get serious about my son’s diet.
I feel the same way! Tell your well meaning relatives that if they try to sneak her a cookie I’m coming over there myself!
Praise God! This is such a wonderful thing to read. Robb, you are a blessing to people like this because you’ve chosen to be a voice and to stand up for what is right (and scientifically accurate)in the world of nutrition; this is the fruit of your labor (among a host of other things).
I know so many parents who are dealing with autism right now that I will be passing this post off too. God love ya Roberto
Awesome story Rachel…brought a tear to my eye. As a father of 2 y.o. twins I can relate to trying to feed them as healthy a diet as possible and trying to keep others from ruining it 🙂
Thanks for sharing!
This is really interesting. Autism and nutrition are both focuses of my Master’s work right now. My wife never really saw any (yes, any) results when parents plugged in a GFCF diet at the Autism Center where she oversaw ABA therapy. Obviously this disappointed me (wanting to find the magic food bullet and all).
I forwarded this to one of my advisers who’s Ph.D. is in Autism.
Wow… almost cried reading Scarlet’s story! How wonderful. I often feel like I get redundant, giving the same basic advice to most people with health problems (remove grains, eat enough fats, limit carbs, etc), but it really does work. I’ve seen this on a smaller scale working with kids with ADD, ADHD, etc.
Awesome story Rob… thanks for sharing.
Diet could play a role, but the suggestion that a change in diet could ‘cure’ autism in 170 hours makes me skeptical. Perhaps Robb could team up with some scientists to design a real study on this with lots of kids. If it’s true, it would only take a week to get results…
Yes, and fucking preposterous that folks might they a simple, low risk intervention.
Great advice Mark.
I’m with Mark here. It’s a wonderful turnaround for Scarlet, but attributing her improvement to a week on the Paleo Diet doesn’t pass the sniff test. Obviously, it’d be nice if some scientists studied this in a controlled experiment.
Regardless, it’s an inspirational story. Keep up the great work, Scarlet!
Mark, how about you design a study, maybe find some people who want to work on it too and make it happen. You don’t need “scientists” (a study is not scientific because it is run by people who call themselves “scientists”)let your scepticism be your guide.
Or more modestly, find one family with an autistic child willing to give paleo a try and track their progress for a month to a year– take some before and after video, get before and after doctor reports etc. One child is not a statistically significant study but it might cure your scepticism and it might inspire others.
Or maybe Robb could just do it (your not doing anything right now, are you Robb?)
I have noticed a recurring pattern in my experience in various organizations. Someone joins the group, or comes to one meeting and they have a lot of ideas, that usually take the form of “you guys should do this” or “you guys should do that.” One group I was a part of came up with a pretty good solution. Whenever someone proposed “you guys should” we immediately volunteered them to lead the project. If they demur then you know that they are not a serious person or they don’t really think that their idea is worthwhile, they just like to give other people work.
There’s a place about an hour and a half away from Chico called The Mind Institute. It’s a think tank for (ultimately) finding cures for neurodevelopmental disorders. They host many many seminars geared for the general public and academics.
Love people who start sentences with “Perhaps”. Perhaps Mark didn’t realize both Robb and Mat are scientists. Perhaps Mark isn’t aware that Mat is a researcher for Harvard and recently was invited to speak at an autism conference. Perhaps Mark just consumed his fifth fry.
Thank you for sharing this story, Rachel.
If we get enough buzz about this we can get a study. A properly controlled study like this is .5-1million minimum. We are nit there yet, and with no drug driving things it’s a bit more challenging to get funding.
Folks have tried repeatedly to study GFCF with kids with autism – including at the MIND Institute. There are multiple charitable organizations that would be happy to fund pilot studies given sound methodology. The issue is that most families are so overwhelmed with the caregiving demands of a child with autism that they find it very hard to adhere to a strict GFCF diet for any length of time. As such – no good studies have been done. My expertise is in ASDs. When folks ask me about “alternative” treatments for autism I routinely suggest that GFCF/paleo is likely a good place to start. I’ve seen a few hundred children on the spectrum in the past few years, only a few have shown improvement with GFCF/paleo, but as far as I’m concerned, that’s enough to suggest it as a place to start if parents are so inclined.
If a well-designed and scientifically valid study were to validate this awesome (admittedly anecdotal) case, it would be huge. One would hope, anyway.
It’s a great idea to experiment with diet and if you find something that seems to work for you that’s awesome. I’m happy that this seemed to work for Scarlet.
I think Mark’s point was that an anecdote is extremely weak evidence of a general effect in a case like this. There are so many other factors that could have been at play here it’s impossible to count them all. The trouble comes when correlation (especially with a sample size of one) is confused with causation and sold as evidence.
But please keep experimenting!
I know I’m going to be attacked but I see what Mark is saying. I have worked in the field of behavior analysis and with young children and adolescents with Autism for 8 years. This is a sensitive topic for me because I’ve seen so many families try everything, and I mean EVERYTHING, including a gluten free diet, to reduce their child’s engagement in stereotypical behaviours, aggression and self-injurious behaviour (and other really challenging behaviors common among people with autism), and they are heart broken when their efforts fail- i.e., no improvements in rate of learning, etc. Parents blaming themselves is then a common outcome.
Autism is a complex disorder and researchers have barely scratched the surface of the cause/links, etc. I think Rachel’s story is great, and I wish her success on all families. It would really be unethical and impossible to construct a study with a control group in order to isolate a diet as the only factor that could contribute to such a turn around, especially when other therapies and treatments are involved. What parent is going to say, “sure, put my kid in the group whose only intervention is a change in diet”? Providing treatment to a person with autism while they are very young and before challenging behaviour develops/worsens is vital to their learning so parents often choose more than one intervention. Wouldn’t you if your kids future was on the line?
I have followed a Paleo diet for a little over two months now, and I think parents should definitely give it a go. But to all those readers that have never spent any time around a child/adolescent/adult with autism, know that another common behaviour is limited food interests and many families quit attempts at gluten free diets because their child simply refuses to eat- restricted food interests are also a common characteristic of ASD, so on paper, for some families, Paleo would be a “low risk intervention” but for others battling challenging behaviour daily, just getting their child to eat anything is hard enough.
Reading the above I see I’m all over the place with the point I’m trying to make so hopefully I can sum it with this: autism is a complex disorder; parents need support when their attempts lead to success and especially when their attempts do not.
Thanks,
C
Christina- a gluten free diet is NOT typically Paleo, that’s a critical point to consider. Also, all I’m suggesting is that folks “try” there seems to be this hand wringing element about just giving it a shot and I’m frankly stumped by that.
As an aside I shot Mark an email an apologized to him. I really went after him and that was nit cool on my part.
Christina, thank you… I was wondering about the many people commenting and how many had worked with families and children with autism. Selective eating can be quite frustrating and make dietary changes next to impossible. And along with the many other adaptations to family life that a child with autism can bring, a Paleo diet is a lifestyle change and isn’t always that easy with so many other daily issues being considered in a family.
This story is truly amazing — you’re right about the tightness in my chest! It gave me goosebumps. I was a teacher and saw many autistic children in the two years I spent in the classroom. I also taught with a woman that had a 4 year-old autistic son and was beginning the gluten-free journey to see if it had any effect on his symptoms.
My family has been following the paleo lifestyle for about 2 months, and the changes have just been phenomenal. We have a 5 year-old daughter and she loves the food, too! No convincing needed. I wrote a blog post about our journey and have had so many friends + family reach out with questions and support. It’s wonderful. Many praises to paleo!
Thank you for this post! My 3-year-old daughter was diagnosed with ASD in December 2010, but has been eating Paleo for nearly 1 year. We know that our focus on improving her gut health has been vital to preventing many of the the sad and scary symptoms of Autism. She has never had a loss of language, is very high functioning and is currently mainstreamed in preschool. We have a long way to go, but we feel that her Paleo diet combined with appropriate therapies, will allow her to live a full and happy life. Thank you for providing this life changing information!
What an inspiring story! You rock, Rachel!
I’ve been 99% Paleo for almost 3 months now and, while my gut is still healing, I feel great in general and have lost 20 lbs. What I really want to do, however, is convince my 12 year old son to try it. He was diagnosed with ADHD when he was 8 and I wish I knew about Paleo then (when I had more power over his diet–middle schoolers stink! 🙂 ). This story makes me want to try even harder!
The fact that a 100% Paleo diet could cause such dramatic healing is absolutely phenomenal to hear! It is such a testament to the power of healthy foods and eating the way our bodies were designed to eat. With something this ground breaking, I feel that so much hope can be given to other people who are suffering from diseases that have tried everything… except correcting their diet.
Big fan of the website and loved this testimonial!
I would add that it probably also has something to do with getting adequate amounts of saturated fat for proper brain function.
I am a speech-language pathologist who works in the home of many children with autism and somedays I wish I could just give parents a piece of my mind and inform them about this diet. Maybe now I can pass on this article to help! I am forever greatful to the world of Paleo/Primal living for completely healing my gut. I still have struggles, but that’s a part of the learning process. Great story! I will pass it along!
For anyone looking for an additional resource that will do nothing short of blow your mind about the connection between gut health and the brain, I’d like to recommend Dr. Natasha Campbell-McBride’s book, Gut and Psychology Syndrome (usually referred to as GAPS).
She did basically what Elaine Gotschall did — “cured” her child of autism by making changes in the diet — remove “offending” substances (grains, non-fermented/non-cultured dairy, processed crap), and emphasize things that heal and repair the gut lining…like Mat Lalonde said — natural fats, bone broths, meat from pastured animals, very well-cooked vegetables, and GAPS also emphasizes fermented foods/probiotics to restore the balance of beneficial gut flora.
This book is AWESOME. The author covers it all, from why this seems to be more and more common now, how we got here, and most important, HOW TO STOP IT. She covers everything — autism, ADD/ADHD, dyspraxia, schizophrenia, sensory processing issues. Ultimately, they are ALL manifestations of the same underlying problem. It’s a damaged gut lining. Some kids end up with severe autism, others have more mild conditions, but they’re all the result of the same cause. (Kind of like hyperinsulinemia is behind so many seemingly unrelated things…some people become obese, some people end up with dementia, some get PCOS, some become diabetic without obesity. Seemingly unrelated problems, all caused by the same thing.)
The Kraken said: “After reading up on the specific carbohydrate diet, it became clear that some of the information contained in my presentation regarding the effect of seed consumption (grains, legumes, nuts, edible seeds) on intestinal permeability could be used to complement the SCD and improve the already impressive results observed with autistic children.”
What exactly is the relationship between seed consumption and intestinal permeability? I tried doing some searching on the site for more info, but came up empty handed. Can someone please fill me in?
Some antinutrients similar to grains b
So if nuts are no good then I should cut them? I don’t have any specific disorders in me or my daughter, we’re just doing GFCF (not quite 100% paleo) for general health. To replace the large amount of bread and wheat I used to eat I make a lot of recipes using almond meal and coconut milk. Should I change this?
Jean,
Grains, legumes, cereals, pseudo cereals, nuts, and edible seeds (like sunflower) are all seeds.
In addition, mercury poisoning is a big problem with autistics as well as many neurotypical adults. The younger a person is poisoned the more likely you’ll see autistic symptoms rather than mere “brain fog”, etc. Andrew Cutler seems to have the best grasp on how to diagnose and deal with it. noamalgam.com. If you lack the genes to excrete heavy metals efficiently and mercury builds up all sorts of bad things happen, with gut and adrenal damage being common, also eye problems that require a behavioral optometrist to diagnose. You’ll still need Paleo or SCD regardless.
Robb, I think you’d get along with Dr. Cutler very well.
Several years ago (Christmas 2006), I was fortunate enough to be seated next to a doctor who specializes in autistic children. She maintained a practice in both California and Nova Scotia, Canada (I do apologize that I have forgotten her name). We were waiting on a flight from IAD to Halifax at the time.
As a medical professional myself (veterinarian) we, of course, got to talking about what we do and about autism. While I don’t have kids myself, I find it interesting and we talked about everything from diagnosis to the vaccine link.
One of the MOST profound things I remember that she told me was that there was an autism study done at a premiere university in the US where, as part of the study admission testing workup, children with autism underwent endoscopy of the GI tract.
What surprised them was that in all of the children, the GI tract was absolutely inflamed and irritated from stomach to colon. She told me that (at least at that time) they didn’t publish it in the results because no one really knew what it meant. One theory that was bounced around at the time between the researchers was the severe GI pain is what makes the kids “turn inward” but certainly it couldn’t be proven. The findings may be published by now, I am not sure.
It does not surprise me that now we are seeing some links between our diet and many of these neurological/behavioral conditions in our children.
I would love to see an episode of the podcast devoted to Matt expanding on his auto-immune protocol. What would the fats mentioned on this diet be?
In the Netherlands, a study has been done to test if diet has an influence on ADHD, with positive results. It was based on the Few Foods Diet, a diet consisting of rice, lamb, turkey, pear, water and salad and other greens. If this dimished the ADHD symptoms then after 5 weeks controlled reintroduction of other foods, one at a time, to monitor the influence on ADHD symptoms. Published in the Lancet this February, study by Pelsser and Buitelaar, INCA-study. Before the trial they checked IgG and IgE, but even though some children had allergies or intollerances, those foods did not influence ADHD symptoms. They suspect another mechanism is involved. Each child had their own specific foods that caused ADHD symptoms and after the search, they could reintroduce everything except those. Next step is to find this mechanism. So for ADHD it turned out to be individual reactions to specific foods. I know this may not be usefull info for autism, but food-brain reactions are found in scientific trials. Not all kids became symptom free and some did not lose any symtpoms, but a majority had major improvements in concentration.
And with a simple, safe intervention.
It’s certainly safe. But in real life, limiting a kid’s diet (especially an over-smart kid with something like Asperger’s or ADHD) to a tiny list of not-particularly-interesting foods is not at all “simple”. The necessary family commitment here can be huge and — to really be done 100% — might need to come with other “simple” interventions like pulling the kid out of public schools and eliminating unsupervised time with friends. This is NOT like telling a motivated 20-something CrossFitter to skip the pizza!
Mmmm… no.
I went on the Paleo diet in high school, 8 years ago, when my friends and family were eating garbage.
There are plenty of Paleo parenting blogs, you might want to look at the. Their kids are pretty compliant.
We wonder whether the non-responders in this trial would have done better with more fat (especially saturated) in their diets. Perhaps the rice could have been cooked with coconut oil, for example.
Well, it is timeconsuming, first 5 weeks strict and then months of introducing and monitoring, of symtpom diary keeping by the parents etc. I read that for most kids it was a year. And for a kid, a year is a looooooooong time. Every misstep will take the proces a few steps back. But after that year, everything was solved. So that leaves the kids that had no reduction in symtpoms. Maybe they are the ones with a different brain, the kids that reacted to food with a different intestinal tract? This research group is hoping to take this further, so we’ll see in a couple of years/decade.
Parent of an 8-yr-old Aspie asks: What’s the thinking behind excluding eggs and nightshades?
Those are normally removed in autoimmune protocols for potential problems.
Robb: I’ve had Addison’s since 1987. The suggestion that eggs are problematic is completely new to me. What’s the reasoning?
Have you read the book or listened to the podcasts (episode 68 specifically) ?
Thanks everyone for reading this story! My only goal in trying to get this information out there is so that other parents and their children can experience the results we did. As far as the sniff test, when you are literally with your child every hour, day and night (try getting a babysitter for an autistic 2 year old EVER) it is easy to have strict control over every thing that goes into their mouth. How does this not make sense? Reverse inflammation, heal the gut, reduce brain inflammation (Robb calls it “brainflammation”) the kid sleeps much better, absorbs vital nutrients better, brain chemicals balance out…. When you use a paleo-autoimmune approach and do it 100% all of this can happen very quickly and things improve fast….Or I guess it could be a totally random miracle which happened exactly in lockstep with a very tightly controlled dietary intervention which has seen similar results in many other children (as noted above). This is what you would be suggesting. Which theory does not pass the sniff test?
Robb notes in his book that he saw unbelievable improvement in his drastically ill condition within days and pretty much complete reversal in a couple weeks. This is similar to what we saw with Scarlet. As Robb always says, its not like we had anything to lose- we could always start feeding her bread and cookies again if it didn’t work.
My son is 4 and has moderate autism. We have seen such great improvements just with herbal supplements…so much so that after 2 weeks his therapists asked what he was doing different. Autism is a gut disorder. I am looking to carry my whole family to Paleo but my son is a very picky eater…any suggestions on how to get him started?
Hunger! He’ll get less picky with time.
Robb,
Sometimes hunger doesn’t work with Autistic children. They feel things differently. I have taken some of the suggestions written here and on the Daily Apple. I’ve gotten him eating Omega free range eggs and bacon a few days a week and his verbal is growing in leaps and bounds. I am hoping to change him over to this diet completely. Now if can just get my wife on board. Any other suggestions please send them on.
Thanks
Shane
Keep us posted.
What an incredible story. I am so thrilled for you and your daughter. I was in tears! I have shared this on Facebook and have posted a link to my paleo website. The more people who read this the better. I hope that there are some out there who will take your experience to heart and try it for themselves. Thank you SOOO much for sharing!
I meant to add, I hope you keep us posted on Scarlet’s progress. It would be amazing to see a complete turn-around!
It is a heart-breaking thing to see your child struggle with neurological disorders and it makes thing so much worse when you take positive steps to help your child and people are critical, skeptical, or even outright hostile to you.
I can tell you that my older son had many disturbing (spectrum) behaviors and almost never slept. What I got from conventional doctors was blame and a suggestion that he needed a psychologist. It wasn’t until I saw a CAM MD on daytime TV talking about GFCF for hyperactivity, sleep disturbance, and autism that I saw a ray of hope. Everything he said sounded like my son, and I figured that it would do no harm to try. I cleared out our cupboards and put the whole family on GFCF.
To those people who say that immediate results do not pass the “sniff test,” they have never seen and experienced what I have first hand.
1) My older son, who never slept, started sleeping all night and was able to sit still at the table, and he was having fewer angry outbursts and body meltdowns within the first week.
2) My baby, who was 5 months old (and only breastfed) started napping during the day in his crib, because I got the gluten and dairy out of my diet, which he was getting through my breastmilk. He never napped in a crib or bassinet before. Even in the hospital immediately following his drug-free and gentle birth, he would not sleep in a bassinet, nor sleep for the maternity nurses, and they ended up just allowing him to sleep in my bed with me (against hospital regulations) tucked under my armpit because otherwise he was screeching bloody murder. The only thing I changed was GFCF, and this kid went from being worn in a sling all day long and sleeping tucked under my armpit all night, to napping 3 times a day in his crib and sleeping so much better at night in his crib, only waking to nurse.
3) My husband had been diagnosed with a host of things including a paralyzed stomach, chronic GERD, a neurological disorder, and he had insomnia. Within 2 days, he could feel his “paralyzed” stomach working again, and all of the problems that he used to blame on his neurological issues (such as dizziness and not being able to feel his hands and feet) cleared up. He started sleeping better and feeling better.
I got some benefits as well, but not as pronounced as the other three member of my family, who improved magically.
At that point I knew that diet was a major factor for the underlying health conditions in my husband and children. I have been reading special diet books and trying the find the best diet for the boys through trial and error. We started GFCF, then got rid of corn and soy. Then I was finding that anything starchy bloated my 5 year old. I tried SCD, and then found GAPS, which I have to agree is the best neurological gut-brain connection book out there. After reading that, all the puzzle pieces snapped into place for me. So we pretty much follow a primal/GAPS diet with some fermented foods for digestive healing, and I figured out that nightshades do cause some issues with my older son. I am very interested in learning more about eggs, which all of my research indicates that they are an essential healing food. He actually prefers sausage for breakfast. Based on watching him for bloating and sleep disturbances (night-terrors, crying) I have eliminated all grains and legumes, all nuts and seeds, all fruit except an occasional grapefruit (that is his birthday party food when everyone else is eating cookies), nightshades, starchy and root vegetables. He basically eats pasture raised grassfed meats, wild caught seafood, eggs, healthy fats like coconut oil and rendered duck fat, and (olive oil for raw things), broccoli, cauliflower, brussel sprouts, cabbage, greens, asparagus, leeks, onions. My baby was getting more fruit, and some nuts and seeds, but I have been noticing bloating in him and some tantruming too, and he is usually so mild mannered, so I think we will go back to basics with him as well.
It is a lot of work for me to source our food and cook three times a day, but I wouldn’t change a thing.
*Standing ovation.*
**I’m also standing – clap, clap!!**
Wow, we have a 4yr old son, with Autism, non-verbal. He’s very selective in his food. Over the last 5 months it’s been reduced to about 4 things. All very full of Gluten, Dairy and some refined sugars 🙁 We’ve tested his stools etc and Yes, all the bad bugs are there.
I’m literally fearful for what the next few weeks hold and how he/we’ll all handle the withdrawals etc. And yes, I thought if he was hungry he’ll eat what ever I put in front of him, but what will he break on the way to the table?? Wish me luck. These testimonals do give me strength. Thanks.
In regards to doing studies on this – Dr. Kharrazian has mentioned at several of his last few seminars that he has seen or participated in studies with autistic children and saw REMARKABLE improvement through a change in diet and through added supplements. I believe he is presenting a 3-day seminar on this in the near future.
Just as a side note to skeptics:
I understand this looks ‘miraculous’ and it is, but it has sound scientific mechanisms behind it. Also, my daughter has been in a program for ASD infants since 6 months before paleo intervention, so we have before and after video, and several written and recorded in-depth assessments from professionals. So we have remarkably well-tracked progress from an unbiased third party who specialize in autism. They see similar progress in other kids whose parents try GFCF diets, but Scarlet’s progress seems to far exceed that. Possibly because her protocol is designed to be as anti-inflammatory and gut-health promoting as possible. No gluten-free pre-packaged junk foods, corn, soy, soda, high sugar juice, and lots of other things which may still be included in GFCF diets. In my opinion, GFCF=good, but Paleo=best as far as dietary quality goes.
Rachel
Amy B- Thank you. I am a bit of a real food evangelist now, though I do bite my tongue a lot more than I share. I feel like I need to know my audience after being really burned trying to help a few other people. I feel like the OT office that is full of kids scarfing happy meals before OT and mowing suckers and popcorn and chips as part of their OT are not my audience, but watching every single kid, many of them spectrum kids, leave the office with a lollipop drives me mad.
Rachel- I absolutely agree with you. I think GFCF is a good place to start, but it is too easy to begin replacing all the gluten filled goods with GF versions that are no healthier. And it does noting to address sugar, which is a major culprit in intestinal microflora imbalances. And as you said, in many of those packaged foods, getting the gluten out means switching to processed GM corn and soy. No thanks. I think the reason my son did so well at first on GFCF is that he refused to eat the GF versions of waffles, breads, etc. He was basically living on meat, eggs, fresh fruit and veggies. Then after a month or so I tried a waffle from the freezer, and he ate them, but went back to not sleeping well and regressed a bit. I tried to be really creative with him so he wouldn’t feel like he was missing anything, but then I found that the more basic I kept his diet, the better he did.
I did not get him assessed in any way until we had already been doing dietary interventions for him for 2 years. He still has a whole host of Sensory Processing issues and really low muscle tone and coordination issues, but he is doing great in school and better at home.
I have been studying both the paleo autoimmune protocol and the GAPS diet. Both seem to be quite successful, but very different. The GAPS diet allows eggs, soaked and dehydrated nuts, nightshades, wine, and fermented dairy, while paleo does not. The GAPS diet forbids some paleo accepted foods such as tubers.
How can both diets heal autoimmune illnesses and intestinal permeability, but restrict different foods? Am I missing something?
People might be different ;0) We cannot test for all these variabels yet, so we tinker & provide our best understanding.
GAPS does not allow tubers due to effects on bacteria, I don’t in the beginning either.
This is such a fantastic and inspiring story. You’re right – it’s definitely tear jerking too! You have a lot to be proud of. Thank you for sharing that story and being a motivation to so many people!
Amazing story Rachel. I was diagnosed with Asperger’s Syndrome for a while as a kid. Later found out that that’s probably America’s most over-diagnosed disorder, but still found that cutting out gluten helped a lot with the symptoms and made me actually want to socialize more.
Okay I’m throwing my two cents worth here.
My 4yr old twins are speech delayed, one more severe than the other. We had thought perhaps autistic but specialists have told us there’s no markers for such in their behaviour. I’ve been getting frustrated with trying speech therapy, play therapy, nothing is working. Last Thursday I started the twins on Paleo. Actually I planted my entire family firmly in the Paleo garden and have already seen improvements in all of my children (including the teens).
Twin 1’s tantrums have subsided to almost none, and Twin 2 who had the least speech of the two is now singing songs with me. Her wordage has improved immensely and she is now starting to put two to three words together in a sentence. Which over a week ago was not happening. I am struggling to keep their interest in all the food (trying to make veges appealing sometimes is hard work). My teenagers have stopped their bickering (I think there might be something in this Paleo thing now, curing angsty teens could be big $$ industry if we get it right).
Yesterday my twins were given food with a high wheat content, after an hour we were right back to where we started, tantrums, refusal of speech, the lot. So we have to climb back on board the Paleo wagon and keep going.
Perhaps it’s just fluke that this is happening to my family, I somehow don’t think so. I have started blogging about my experiences and hope to improve my ability to keep Paleo food interesting for the kids.
Thanks so much to Rachel for sharing Scarlett’s story, you’ve inspired me. And to Robb and Mat for getting her story out to the ‘masses’.
Natalie, that’s great!
I see a common theme with people I talk to and here in the comments that reflect what Robb says about “hnd-wringing.” I also consider what Sara says about the caregiving demands of autistic kids and how people feel switching to paleo would overwhelm them. I am going to write about this on my own blog http://www.paleofreedom.com and offer my tips and suggestions to help people feel good about the change and to make it not only stress-free, but actually fun!
I am exposing myself a bit here, but I will share that we have a family of 4 children aged 2-10, plus my husband and I. We live on a very low income and we are about as busy as it gets. If we can find a way to do this, anyone can. Really, ANYONE. I am also going to get some boards going for help, support, and community specifically for parents trying to do paleo with kids who have ASD and similar conditions.
This is a safe, cheap, effective way to help not only your child, but also yourself! If anyone has questions I am happy to help.
Thanks for all the support and nice comments everyone!
Absolutely amazing. Thank you for sharing you story Rachel! I’m so happy for you and your daughter! My sister has a mild case of autism and I’ve been thinking that adopting a Paleo Diet could help with her symptoms and depression. Not sure if she’ll go for it, but it’s worth a try!
Lyndsey, all you can do is give her the info. If she has questions on getting started I am glad to help!
This study may be of interest to some.
http://imfar.confex.com/imfar/2010/webprogram/Paper6183.html
I am not a researcher, however I would think that unless all other variables are controlled, it would be impossible to suggest that the change in diet was responsible for Scarlets’ apparent recovery from autism?
I am not a total sceptic, and as the parent of two children on the spectrum the focus on diet is very interesting to me, however I see, on a daily basis many children with ASD, quite a few who are on a GF/CF diet, and even palio diet. None of these children have shown an improvement that would indicate their diet was responsible.
My own son only three words at age 2yrs 3m. Two months later he had over fifty words. He had an absolute language explosion, started pointing, waving, made great eye contact, started requesting objects and even initiated games with us, plus many other exciting things. These are things he could not do before. However he is not on any kind of GF/CF or paleo diet.
I’m not saying that this type of diet won’t work for some (I eat paleo and love it!) however I’m just suggesting that parents who don’t understand how research methodology works might read this and fill themselves with false hope when it doesn’t work for their child. All this does is add to the ever growing pile of parental guilt they’re already feeling.
Robb, I love your work, I honestly think you’re a life saver, I just think we need to be mindful of how the rest of the parents out there would feel if yet another ray of hope for their much loved child is dashed.
Donna- I hear you, but I am frankly shocked by the outpouring of hand-wringing on this. GF/CF is NOT Paleo, not that many folks are actually doing Paleo yet and what I fid really interesting is no parents of kids with ASD ho actually did Paleo (documented the process, wrote it up) have said anything, offered to do a blog post.
So we caution against…hope? I’m lost here.
Robb, I agree with you, but I don’t think we’re cautioning against hope. I think it’s more a matter of informing parents of when they’re looking at anecdata as opposed to a double blind study. I would love to see a study on the effect of paleo diet on children (or adults for that matter) who have an ASD. On that point, perhaps it would be easier to gain a suitable study sample using adults instead of children?
My point re young Scarlet was that it was an anecdotal sample. Unless all other variables were controlled, we don’t know whether or not it was the Paleo way of eating that caused Scarlet to improve. It may have been many other factors. I’m not saying it wasn’t Paleo, just that we have no way of determining whether it ‘was’ Paleo. Given we don’t know the exact correlation between paleo and symptoms of ASD, we need to be mindful that it could be another fruitless exercise that desperate parents might chase, only to be shot down again.
In saying all that, (the following may be a bit jumbled. I have a lot to say in very little time…),I’m really here because of my own interest in Paleo and ASD. As I mentioned, I have recently started eating Paleo. I had heard about it from someone who I consider a well read source so looked it up myelf. That’s how your book landed in my lap. I read it, understood it and I truly believe in its principles. My initial reasons for looking in to it was both to better my own health but also see if it could help my son. Further searches led me to this blog post.
I have two children on the spectrum, one with Asperger Syndrome and the younger with Autism. My younger son (J) is involved with an extensive early intervetion program run here in Australia in conjunction with the M.I.N.D institute in California. His behaviours are rigorously tested and the E.I program he is in is very intense, involving more than 30 hours per week of therapy.
My aim was to see if there was an accelleration in his learning ability after a change of diet, however I wanted to see the diet for myself first before putting him on it, hence why I eat Paleo and he doesn’t (yet). If things keep going as they are, my son will be put on a full Paleo diet. Again, his case will only be anecdata (as in the case of Scarlet),but it’s a start. Given that J has been in the EIprogram now for 12 months, the only variable that will change will be his diet. He has recently been tested on all areas of learning and will be tested again in three months. His team will not be told that he is eating Paleo and I am not involved in his testing in any way. I’m really interested to see the results of this.
I guess I’m trying to play devils advocate here. I honestly do hope that Paleo can help people who have an ASD, but until proper studies are done we really won’t know for sure whether there is a correlation.
I’m happy to keep you updated on J’s progress if you’re interested?
Yes, please do keep me posted.
Having been at this since 1998 I just have a wicked radar for the new-comer “devils advocate”. I’m not trying to stifle discussion, bully or hoodwink folks but its a monumental amount of work to just get people to TRY. Try it, report it. Anecdata? Yes. And it is absolutely the only was we will ever get to a point in which actual clinical studies are performed.
No outlandish claims are made in these testimonials, simply “this is my story, try this, tell me YOUR story.” all the information is free, people are here to help and clarify.
So you tell me, do we need devils advocates, or Advocates? It’s a big difference in intentionality and ironically, results.
That depends on where you stand. You are an advocate for Paleo, I am an advocate for my son, the only one he has. I can’t and won’t jump in head first into something simply because someone else reported it was good for their child. Unfortunately there are many parents out there who will, simply because they’re looking for hope. I guess it’s those parents I am playing devils advocate for. I see them on a daily basis, I listen to them and I’ve seen so much heartache come from so many touted ‘cures’ for autism that just never worked. Caring for a child with autism is hard enough, but the constant barage of so called cures that we hear of all the time do nothing to make our job any easier.
Should the Paleo diet improve my sons ASD I will absolutely advocate that it worked. I’ll shout it from the rooftops and even buy the T shirt, but I will only advocate that it worked for him. I advocate for the therapy he is currently using but only because it has 30+ years of scientific evidence that it does improve symptoms of ASD. When we have scientific evidence that Paleo works I will happily advocate Paleo to anyone who will listen to me and even some who won’t.
I think this discussion has taken a different course to what I had intended. You are absolutely right, no outlandish claims were made in the testimonials and it wasn’t my intention to imply otherwise.
I really enjoyed reading it and wish little Scarlet all the best. I think her parents are amazing to go to such lengths to help her. My aim was to simply present a piece of information that others might not have realised, that Scarlets’ story is one child who was not in a controlled study and that although she has improved in her symptoms of ASD, we don’t know whether following a Paleo diet is what caused this improvement. I understand it was never implied in the testimonial that this was in any way a controlled study, however there are others out there who won’t pick up on this. They’re probably not reading the 76th comment either but who knows!!
It was not my intention to discourage people from trying a Paleo diet for their own children. As I mentioned previously I will be doing so with my own son. I was merely hoping to point out that as parents of children with an ASD we are always bombarded with new ‘cures’ for autism. Some of them are worth looking into, others are beyond ridiculous, but all of them have one thing in common, none of them are a proven cure.
Thanks for the discussion though. It has been great chatting with you. I will keep you posted on J’s progress and I’m sure you’ll see me pop up in other blog post comments 🙂
Donna, just reading your posts now and am very interested in where you are a year after. Any chance of a follow up? Would be quite interested in conversing – also in Australia, one child with ASD.
Thanks.
This is a fantastic story. Given the huge interest in the early (1-2 weeks in) results, can we get an update from Rachel now that another 2 weeks have gone by?
Is discussion of vaccines and their possible tie in to the Autism spectrum allow on here?
I have baby on the way, and the question to vaccinate or not vaccinate is keeping me up at night….
Thanks for any thoughts, and sorry if I am over stepping the forum rules.
D
We can look at this in the future but my sense of this is:
1-Folks should wait a while to immunize…no need to rush things.
2-If the child has GI irritation from dodgy food, the potential for cross reactivity is increased.
I plan on traveling a ton with my kids, so they WILL be immunized, but it’s going o happen on our terms.
Hi,
I hope too I’m not overstepping, but this is such a scary topic. We were one of those unfortunate families, forced to watch our child regress after the MMR and I wouldn’t wish it on another soul…
My son was unfortunately not diagnosed with mito dysfunction when he was first born, despite all the markers – hypotonia, abnormal energy metabolism (very low, unstable energy/easily fatigued), chronic GI problems, FTT, apraxia (oral and verbal – unable to even feed, and then just said he was “lazy” – despite our “would you remind repeating that?” they did nothing). Just recently, it was finally confirmed that he had all markers of mitochondrial dysfunction. The sad part is that, science is now linking glutamate (a stabilizer) in the vaccine to “mito ASD”.
Research is being done by the National Institute of Health, particularly by Dr. Grupa, who recommends glutamate be removed from the vaccines as it is causing ASD in children with mitochondrial dysfunction.
(A side note: overwhelming amounts of glutamate and aspertate amino acids) exist not only in additive forms like MSG and aspertame, but also exist in a natural unbound state in grains, dairy, nuts (though some are worse than others), soy and corn.)
I can’t tell you what to do for your child, but if I could go back, knowing what I know today… we would only be facing physio and speech therapists to deal with the mito issues and apraxia along with being strict paleo, instead of RDI and everything that we continue to do to try to help our son recover from ASD.
You may find the following links of interest:
http://hstrial-astephens3.homestead.com/Evidence_of_Mitochondrial_Dysfunction_in_Autism_and_Implications_for_Treatment.pdf
http://adventuresinautism.blogspot.com/2008/03/mitodnaautismgfcfglutamate-thoughts.html
All the best!
So what are your suggestions for breakfasts at the beginning of the diet for a child with ASD? We’ve been SCD and honestly, it didn’t work out simply becuase for my son, there was too much natural glutamate (nuts) – my son was diagnosed with mito issues as well. Problems started to arise from that. Armed now with coconut flour recipes that I will use once the healing is really moving along, I am trying to figure out what to feed him.
Same problem as most of us with a child with ASD – food issues! He hates anything soft, cooked veggies or fruit and anything that excludes the nightshades (i.e., tomatoes). That alone is a huge flag, but now I need to figure out how to start this and help him succeed. Boiled eggs has always been a good alternative sided by a bowl of berries — what could I give him instead? And what veggies should I start with?
In view that I’m able to clearly relate to the particular challenges with the autism industry, I have discovered it to be a lot more tedious than expected to discover original and valuable posts.symptoms of autism in toddlers
I am from Pakistan.i have a nephew in finland who has been declared autistic.we have gone through all the tests related to biochemical imbalance and all the stuff he is alergic to.we got him tested in an american laboratary.i need to talk to someone personally to discuss the way forward.please do respond.it will be a HUGE favor.waiting
Donna,
I am not sure if you are still around but would love to hear about the results. I have one son who is HF Aspergers (and OCD, ADHD) and one with tourrettes, ADHD, severe anxiety.
I will be starting my family soon on this diet to see if it helps. My middle child (the one with tourrettes and anxiety) is the more difficult one to figure out. He has stumped teachers and professionals alike. There are no patterns to his behavior including ADHD symptoms.
I do wonder if diet plays such an important role. And from what I have heard, gluten stays in your system for a long time, then as a parent I wouldn’t notice the correlation if we ate differently the week befor (rushed weeks, more pastas, breads, take out etc).
My 9 year old son has gotten less sick this last year…. (he also has asthma), we started him in sports, got an air purifier for his room (the pulmonologist said they don’t work) and got him started on therapy. The combination of events has helped to reduce his illnesses. I believe a diet tailored to his sensitivities can only be an additional route to better health.
Thank you everyone for their input. Knowing their is success makes it worth the try!!!
Theresa
Thanks,
Theresa
Hey everyone! Sorry I have been so MIA, we just had our 5th baby in February, and my husband is working full time while attending law school, and I was working full time until January! I am now staying home with the kids ad checked this thread- alot going on! As of March 2012, Scarlet has been paleo for one year. She is doing GREAT. Normal development, MUCH better social skills, and superhuman memory skills that almost seem like a leftover ASD “gift” of sorts. She can memorize and recite entire TV episodes (all the dialogue of all the characters)after watching it once or twice (she loves Mickey Mouse and Dora and a few others). She does the same thing with, songs, books, and poems. She can be a bit shy at times, but other times not at all. The only traces that remain of the autism are :
-If she gets a gluten exposure (happened twice by accident) she has BAD diarrhea for a couple days and disconnects, has tantrums, etc.
– If she is in a new, unfamiliar situation, she sometimes lines up objects or recites familiar phrases for a few minutes until she acclimates.
Other than that, people don’t notice much about her except her curly hair and big eyes!
I should also note that my 9 yo daughter was diagnosed with JRA about a year ago, too. She has been paleo for the last year, and at her check up with her ped. rheumatologist, and her JRA seems to be in remission! Yay! More updates and going back to blogging soon….when I get a spare second! Good luck and lots o love to you all!
I know it probably didn’t occur to you, and it’s not intentional, but I can’t even get past the first few paragraphs without getting sad/mad. I (and many other folks with disabilities and folks who love folks with disabilities) am not really keen on the use of “problem” and “suffer” when we’re talking about a way of being that’s on the human spectrum. I know it’s challenging, but I think there’s a more respectful way to come at this. There are a lot of folks on the autism spectrum who aren’t “suffering”. Just sayin’. And being more neurotypical isn’t necessarily an improved way of being.
My son is 17 y o and was diagnosed with Asperger’s at the age of 3. His life has been harder than it should have been but he just graduated High School Magna Cum Laude with a 3.958 GPA. I read the book Saturday. Today I told my son and wife we were going Paleo in 3 weeks. My wife suffers from Rheumatoid arthritis and the doctors give her medication that kill the good and the bad cells. I will be more than happy to inform this forum of the results…good or bad. As far as waiting for someone else to help…..scariest words in the english language “I’m from the government and I’m here to help”
It’s hard to imagine why the word has not got around in all of this. We in the Paleo community tend to think it has, and yet, when I talk to people about it, they are simply not interested. In schools here in Australia, nuts are banned, and yet, what passes as food is sold and, I guess, one might say, sanctioned.
Right now I can think of five children who just might benefit from a Paleo diet. As a teacher do I go over the head of my superiors and try to effect some change? And even if I could, would that be too difficult for the autistic children trying to cope with the ongoing birthday celebrations or canteen ‘special food’ days?
This way of eating works. Even when you don’t THINK you have issues, you will find within just weeks of following this dietary protocol, that you suddenly don’t have say, a skin irritation, or that your arthritis has just ‘disappeared’. We tend to put up with things and see them as minor nuisances. But when things magically go away, we start to make connections between food and health.
I have been surfing online more than three hours today, yet I never discovered any interesting article like yours. It is lovely value sufficient for me. In my opinion, if all web owners and bloggers made good content as you did, the web shall be a lot more useful than ever before.
As the mother of two PANDAS kids, one with autism, I get very frustrated when there is constant talk of autism being autoimmunity and all gut related. Well, yes, that’s a huge part of it, or course. What about all the infections our autistic children really have that have caused this autoimmunity in the first place? Mine has five infections including lyme. Yes, five. Why is no one mentioning thyroid dysfunction either? That’s very common in autism, also another problem he has. He is going to be going paleo also very soon. Can we do a post on autism and lyme disease on here? Because I can’t tell you how many times I have spoken with a parent of a lyme child who told me they also got an autism diagnosis before the lyme was found. Parents of autistic children need to know about lyme and babesia, and bartonella and erlichosis, all those tick borne infections, because they do result in autistic symptoms if left untreated. Diet will help heal you, but you must find and treat the infections alongside the gut if you want to stop the autoimmunity.
RM-
I feel your frustration…I wish we had all the answers AND i wish that we had them all posted last year! This is a process. I actually find that the suggestion there might be a gut connection in all this gets me an ear-full from parents of these kids, ESPECIALLY when the parent has not yet TRIED any of this. I get the same pushback from the Type 1 diabetic crowd. Folks are angry, yet have not yet tried anything. If you follow the site and podcast at all you’ll notice that I talk about the multifactorial reality of many, many conditions. Ironically, we HAVE received quite a number of testimonials of folks saying paleo helped with Lymes:
http://robbwolf.com/2011/02/07/real-life-testimonial-bens-recovery-from-lyme-disease/
I’m not in a position to do the research in this right now so if you know anyone you’d suggest for a blog post please send that to the contact form. If you want to tackle it, I’d be willing to see what you have and if it’s solid, we will run it.
Some of the mixed results that a few of the posters remark on could be due to variables in diets that fall under the “paleo” label. Furthermore it is likely that what is needed for ASD is a paleo autoimmune protocol. With my own health problems I found that a paleo diet helped but the AIP or autoimmune approach by Sarah Balantyne is what was necessary for optimum health. Also I’ve found that small deviations from a “perfect” diet can bring large problems. Many “failures” that parents have encountered with their ASD children could be due to small mistakes in diet. This kind of condition would not lend itself to large studies yet not in any way argue against the efficacy of diet therapy.
In response to those who caution against “false hope”: there is no such thing. Hope “is an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances”. One hopes when there is no certainty. That describes a good deal of life. To have any life condition that is unfavorable and not try to resolve it is defeatist and irresponsible.
Parents who try diet as a means of helping their children’s health issues are employing something called the scientific method. You made observations, formulate a theory, make some changes and observe results. If only our professional community were able to employ such time honored technics.
This story is inspiring, thank you for sharing it. My family has been on the AIP diet for 7 weeks and we’ve seen some great behavioral improvements in our sons. My question is – did people challenge any of the grains/legumes/dairy etc after these diets or just keep to the GFCF or full Paleo diets after seeing improvements? I’d love to know if we can tolerate some additional foods but I’m very scared of losing the behavior improvements we’ve gained – or worried I’d miss catching what food(s) caused them (since our gains are more subtle). I’d love to hear anyone’s reintro experience.
Just chiming in.
Adult ASD diagnosis
Speech/communication before:
Lazy, vague, big picture thinking.
Month On KETO:
Using more specific and appropriate words instead of being general or vague or even ambiguous , think better, focus better, more mental energy (which I believe is the core change for improvement for several scientific and intuitive reasons)
May switch to paleo over time and try that, because keto is quite restrictive.
Reading this makes me feel hopeful. My son was diagnosed with Autism when he was 4 years old. Its been a struggle to say the least. Now he is 12 years old and it breaks my heart to see him cope with things that are ‘normal’ for other children. I am also scared about changing his diet – not because I am skeptical I don’t know where to begin – feel overwhelmed. My family will be reluctant plus in our community wheat based food is central. Thank you for this article – I feel like first time since he has been diagnosed someone actually made sense and wants to genuinely help. Thank you
My son who is form fits aspergers to a T. We are going to go into Paleo with fermented foods fully within the next month. People make the GAPS diet sound like a guaranteed recovery. But my son would starve himself on that type of food. Always makes me feel guilty that I cannot do that particular diet for him. But I guess Paleo, fermented foods,and bone broth is better than nothing?
I have struggled with autistic tendencies, I’m married and have two kids and it is so hard. I feel shame alot for my actions, if I get that dull feeling in my brain I will hit myself of bite my husband. Sometimes I am quite lucid, other times I am so awkward. I have no friends and people generally don’t like me. I can feel fine and as soon as I eat, the behavior starts. It all starts in the gut. I will begin this program again. I’ve done it before and was pretty much 100% better but autistics love comfort and hate change so I began eating wheat and dairy again, within a month I gained 60 lbs and began having utis repeatedly for 2 years. But I find it so hard to even accept it. I know my brain is working against me, I need to fight back.
I know this post is 10 years old, but I still feel the need to reach out. My 2, almost 3, year old son has fairly severe autism and the outburts, meltdowns, screaming and hitting is starting to wear me down. Sometimes I want to just hide in the bathroom and cry but I feel bad for leaving him alone in his own tormented little world.
My husband and I tried paleo diet with him, and although there was serious difficulty getting him to eat even a few of the foods we managed on for a little while and things started to look up. His appetite improved, he stopped flapping his hands and banging his head, he said “mama” in context instead of just babbling it and best of all, he actually wanted to sit calmly in our laps and hug, instead of his old habit of only wanting to spin like top and bump his body into ours painfully and repeatedly.
However, one day he randomly started rejecting all the paleo foods and as he is completely non verbal he couldn’t tell us why. Eventually we ended up in the ER because he just would not eat. They gave us antibiotics and said it was strep. Then changed their mind and said they don’t know what it was. At least we got some IV fluids into him… eventually I finally got him to eat some rice but between that and the antibiotics, within hours he regressed hard back into his old self. The little boy we started to get to know is gone again and this shatters my already so tired heart.
All day he rages, spins, hits, cries, throws toys and offered food across the room… his appetite is still poor and he is so underweight I am scared if I try to do paleo again, he will just reject the food and become even more underweight.
I am already suffering from several autoimmune conditions myself and can never rest and am becoming so irritable with so much pain and I feel like I’m in hell. I’m so scared and I don’t know what to do. Any advice from anyone would be most appreciated.
Thank you for taking the time to read this and I wish you all a beautiful, happy day.
This entire diet is threatened by the current administration. They are allowing Monsanto to sell GMO alfalfa and allowing unrestricted planting. This will result incross contaminate with organic alfalfa and then viola….the only alfalfa in our country will be contaminated GMO frankenfood for our grassfed animals and then our organic grass fed animals are no longer going to be the same.
Do your own research. You might want to start here More info avaliable here http://action.fooddemocracynow.org/sign/dr_hubers_warning/?ak_proof=1&ak_proof=1&akid=.249387.sXvRG5&akid=.264989.opwIkH&akid=318.147857.sgHtXl&rd=1&t=9#petition
Write/contact the Obama White House, Agricultural Secretary Tom Vilisack, and your congressional representatives. GMO alfalfa should NOT be approved.
We need a government that will protect us from monsters like Monsanto instead of pushing Monsanto GMO food products on all of us and leaving us with no food choice.