Real Life Testimonial: Scarlet’s Turnaround (Autism & Paleo)

112 Comments

Monday, May 23rd, 2011

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 5^th 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 1^st. “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 1^st? 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.