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  • Jefferson Adams
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    By Jefferson Adams •

    Does Combined Gluten-Free and Casein-Free Diet Improve Behavior in Kids with Autism Spectrum Disorder?

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    Reviewed and edited by a celiac disease expert.

    Alternative diets, including gluten-free, casein-free diets are popular with people looking to improve behavior in people with Autism Spectrum Disorders.

    Does Combined Gluten-Free and Casein-Free Diet Improve Behavior in Kids with Autism Spectrum Disorder? - Raising autism awareness. Image: CC BY 2.0--Sebastiaan ter Burg
    Caption: Raising autism awareness. Image: CC BY 2.0--Sebastiaan ter Burg

    Celiac.com 02/28/2020 - Because therapies for people with autism spectrum disorders (ASD) are limited, alternative approaches, including dietary treatments, such as gluten-free and casein-free diets receive a good deal of attention from people looking for ways to improve the condition. However, the data so far have not shown the gluten-free diet to be effective in changing behavior in people with autism spectrum disorder.

    A team of researchers recently set out to assess the effects of a gluten-free and casein-free diet on behavior disorders in children and adolescents diagnosed with autism spectrum disorder, and to look at the possible connection with levels of urinary beta-casomorphin. 


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    The research team included Pablo José González-Domenech, Francisco Díaz Atienza, Carlos García Pablos, María Luisa Fernández Soto, José María Martínez-Ortega, and Luis Gutiérrez-Rojas. They are variously affiliated with the Child and Adolescent Mental Health Unit, Virgen de las Nieves University Hospital, Granada, Spain; the Department of Psychiatry, University of Granada, Granada, Spain; the Department of Medicine, University of Granada, Granada, Spain; the Psychiatry Service, Hospital Clínico San Cecilio, Granada, Spain; and the CTS-549 Research Group, Institute of Neuroscience, Granada, Spain.

    Their team enrolled thirty-seven patients for the crossover trial. Each patient ate both a normal diet that included gluten and casein for 6 months, and a gluten-free and casein-free diet for another 6 months. 

    The diets were assigned randomly, so half of patients began with gluten-free diet, and half began with regular diet, then the two switched at six months. The team assessed patients at the beginning of the study, after the normal diet and after the gluten-free and casein-free diet.

    At each time period, the team measured urinary beta-casomorphin concentration, and  patients completed questionnaires regarding behavior, autism and dietary adherence. 

    The team found no significant behavioral changes and no connection with urinary beta-casomorphin concentrations after six months of gluten-free and casein-free diet. 

    The 6-month gluten-free and casein-free diet led to no significant changes in behavioral symptoms of autism spectrum patients, and no changes to urinary beta-casomorphin levels. 

    The team is not saying definitively that gluten-free and casein-free diets don't help some patients with autism spectrum disorder, but they are calling for further studies with a long follow-up period similar to ours and including placebo and blinding elements to help to identify patients who might improve on gluten-free and casein-free diets.

    Read more in the Journal of Autism and Developmental Disorders volume 50, pages 935–948 (2020)


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    Guest CDC

    I'm autistic and have been Gluten-free Casein-free by necessity.  I have celiac disease and lactose intolerance.  Too much cheese is bad for my cholesterol.  Guess what!  Going off milk and gluten had absolutely no effect on my neurology.  The Gluten-free Casein-free diet is really an example of the pseudoscientific "cures" to which we're subjected for something that is not a disease and a relatively innocuous one at that.  The one digestive risk that is well-established is Small Intestine Bacterial Overgrowth, which I may have.  SIBO can result in painful symptoms which can manifest as symptoms of autism.  Treating SIBO appears to alleviate autism, but it what is doing is relieving pain, a good in itself.

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    Guest Lizzie

    Guest Lizzie

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    My thought on this is that kids whose behavioral symptoms are improved by a gluten-free/cf diet are not actually on the autism spectrum. Instead, they have issues that look superficially like the spectrum, but are really caused by food intolerance related inflammation. My daughter, for example, improved dramatically on a gluten-free/cf diet, but it turned out she had Lyme disease and several Lyme co-infections. The inflammation caused by the combined problems put her over the top. She had constant emotional breakdowns, oppositional defiant disorder, insomnia and aggressive rage. The diet reduced symptoms by half and treating theLyme&co did the rest. 

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    Guest Louise,

    Guest Louise,

    Posted

    hmm interesting having done a  trawl through the research.  From what I have found.  In probably a number of children diagnosed with autism/adhd there is casein sensitiviy/allergy. I think that this might be due to casomorphins, acting like opiate drugs. So effectively to people who are sensitive to opiates they will experience all the side effects of taking an opiate and also become addicted to the "opiate". So effectively you have a" drugged " up child. This picture might be  confused with. Both my children have problems with Casein,  the youngest diagnosed at 3 months is extremely allergic, he has had to have strict elimination of all dairy in his diet. We as a family had very little milk intake until he left for university,  following his departure-we started to eat more dairy products. My daughter changed almost overnight, she started having severe mood swings, being rude and cheeky to adults, and in terms of behaviour regressed to about 6 years old. She is 12, she fell out with all her friends and was very argumentative. She then started to deteriorate physically- developing severe abdominal pains,  cramps,  and this woul not respond to paracetamol orv irritable bowel symptoms.  She also developed insomnia.  My husband has autistic traits, so I began to think that my daughter might be similar. I was researching around the internet about autism,  and found anecdotal reports that some childrens behaviour much improved with a dairy and gluten  free diet. This made me make the link wandering wether she might have a milder form of allergy to casein.  So after 2 or 3 days of dairy elimination we noticed a huge improvement of behavioural and bowel symptoms. 4 th day not so good irritable and bloated abdomen,  with mood swings and paranoia. We discovered she had eaten some milk chocolate.  She recognised that milk was a problem,  and is sticking to the diet. We will see how things progress. 

     

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    Jefferson Adams

    Jefferson Adams is Celiac.com's senior writer and Digital Content Director. He earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,500 articles on celiac disease. His coursework includes studies in science, scientific methodology, biology, anatomy, medicine, logic, and advanced research. He previously served as SF Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

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    Jefferson Adams
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    Doctors Diamond and Gregerson are following up their own previous studies that showed antibodies can lead to abnormal brain development and ASD symptoms.
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    Dr. Ron Hoggan, Ed.D.
    Celiac.com 11/23/2017 - Many theories have been fielded about autism. Some research careers have been made by investigating autism, while other careers have been seriously damaged when that research threatened some sacred cows of allopathic medicine. Yet despite all of this active research exploring the world of autism, we continue to experience exponential increases in rates at which autism is diagnosed. And debate continues unabated regarding the causes and appropriate treatments. Part of this increasing trend is, doubtless, because we have gotten better at recognizing the various manifestations of this debilitating condition. However, the evidence indicates that there is a dramatic increase in the absolute incidence of autism. Although frightening, this trend may offer some insight into several of the factors that contribute to this condition. That is the crux of my argument here. Since most prior theories have been tested in isolation, as is the norm in medical investigations, measurement of changes induced by individual contributing factors may either be so mild as to escape notice, or may not have been sufficient to induce symptom mitigation. Similarly, if preconceived notions shape resistance to some of these hypotheses, we may miss the most salient characteristics of autism. I have therefore chosen to combine several findings to form a testable hypothesis. I'll let posterity and the reader be the judges of whether this speculation is worthy of further investigation.
    We begin with Dr. Kalle Reichelt, who sought to understand autism and other psychiatric illnesses through the prism suggested by Dr. Curtis Dohan's work investigating schizophrenic patients. While Dohan et al reported positive results among schizophrenics from a gluten free, dairy free diet, Reichelt and his colleagues identified unique peptides in the urinary excretions from patients on the autistic spectrum and explored their possible connections with gluten and dairy proteins(1). A leaky gut appeared to be a precondition for autism. In 1996, D'Eufemia and others reported increased intestinal permeability in almost half of their autistic patients, using synthetic sugars that can be measured in the urine (2). Gardner has reported disturbed gastrointestinal function in autism.
    Reichelt and Knivsberg have also published reports of improved social interaction and communication among some children with autism following institution of a gluten-free, casein-free diet (4). However, their investigations reveal that the diet must be consistent, strict, and long-lasting to allow the gradual dissipation of the psychoactive peptides from these foods. Others have reported that this dissipation process can take up to 12 months (5).
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    Against this backdrop of widespread recognition of gastrointestinal dysfunction, excessive intestinal permeability, and symptom mitigation through dietary restriction in many autistic children, Dr. Andrew Wakefield, along with 12 other researchers, published their discovery of a pattern of intestinal inflammation and compromised barrier function in 11 of 12 subjects with pervasive developmental disorders, including 9 children with autism.
    Based on histories provided by parents, health visitors, and general practitioners, a pattern of behavioral/autistic symptom onset was seen within 14 days of combined vaccination for measles, mumps, and rubella. The average time to symptom onset was about 6 days. In the same report, Wakefield et al state "We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described." Later on the same page, they state "If there is a causal link between measles, mumps, and rubella vaccine and this syndrome, a rising incidence might be anticipated after the introduction of this vaccine in the UK, in 1988." [my emphasis] Wakefield et al identify several reports connecting vaccine-strain measles virus with Crohn's disease and autoimmune hepatitis. They also hearken to earlier work that implicates inflamed or dysfunctional intestines in the behavior changes seen in some children. They point to other factors that suggest a genetic predisposition may also be a precondition of developing autism, along with markers of vitamin B12 deficiency (which many readers will recognize as a common finding in celiac disease and non-celiac gluten sensitivity). Clearly this group was not attacking the MMR vaccine or its importance to public health. Nonetheless, in the same issue of The Lancet, no less than six letters, written by a combined total of 21 authors, attacked Wakefield et al because of the impact that their findings might have on public health.
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    References:
    Reichelt KL, Hole K, Hamberger A, Saelid G, Edminson PD, Braestrup CB, Lingjaerde O, Ledaal P, Orbeck H. Biologically active peptide-containing fractions in schizophrenia and childhood autism. Adv Biochem Psychopharmacol. 1981;28:627-43. D'Eufemia P, Celli M, Finocchiaro R, Pacifico L, Viozzi L, Zaccagnini M, Cardi E, Giardini O. Abnormal intestinal permeability in children with autism. Acta Paediatr. 1996 Sep;85(9):1076-9. Gardner MLG (1994) in Physiology of the gastrointestinal tract (Johnson LR : edit) Rave Press, NY pp 1795-1820 Knivsberg AM, Reichelt KL, Høien T, Nødland M. A randomised, controlled study of dietary intervention in autistic syndromes. Nutr Neurosci. 2002 Sep;5(4):251-61. Paul, K., Henker, J., Todt, A., Eysold, R. (1985) Zoeliaki- Kranken Kindern in Abhaengigkeit von der Ernaehrung Seitschrift der Klinische Medizin 40; 707-709. as reported in Reichelt K (1990). The Effect of Gluten-Free Diet on Urinary Peptide Excretion and Clinical State in Schizophrenia. Journal of Orthomolecular Medicine. 5(4): 223-239. Wakefield AJ, Murch SH, Anthony A, Linnell J, Casson DM, Malik M, Berelowitz M, Dhillon AP, Thomson MA, Harvey P, Valentine A, Davies SE, Walker-Smith JA. Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children. Lancet. 2004 Mar 6;363(9411):750. Flaherty DK. The vaccine-autism connection: a public health crisis caused by unethical medical practices and fraudulent science. Ann Pharmacother. 2011 Oct;45(10):1302-4. Epub 2011 Sep 13. Fasano A, Not T, Wang W, Uzzau S, Berti I, Tommasini A, Goldblum SE. Zonulin, a newly discovered modulator of intestinal permeability, and its expression in coeliac disease. Lancet. 2000 Apr 29;355(9214):1518-9. Clemente MG, De Virgiliis S, Kang JS, Macatagney R, Musu MP, Di Pierro MR, Drago S, Congia M, Fasano A. Early effects of gliadin on enterocyte intracellular signalling involved in intestinal barrier function. Gut. 2003 Feb;52(2):218-23. Bolte ER. Autism and Clostridium tetani. Med Hypotheses. 1998 Aug;51(2):133-44. Finegold SM, Molitoris D, Song Y, Liu C, Vaisanen ML, Bolte E, McTeague M, Sandler R, Wexler H, Marlowe EM, Collins MD, Lawson PA, Summanen P, Baysallar M, Tomzynski TJ, Read E, Johnson E, Rolfe R, Nasir P, Shah H, Haake DA, Manning P, Kaul A. Gastrointestinal microflora studies in late-onset autism. Clin Infect Dis. 2002 Sep 1;35(Suppl 1):S6-S16. http://stephanie-on-health.blogspot.ca/2008/11/sunscreen-and-low-fat-diet-recipe-for.html  Hoggan R. Considering wheat, rye, and barley proteins as aids to carcinogens. Med Hypotheses. 1997 Sep;49(3):285-8 Seneff S, Davidson R, Mascitelli L. Might cholesterol sulfate deficiency contribute to the development of autistic spectrum disorder? Med Hypotheses. 2012 Feb;78(2):213-7. Epub 2011 Nov 17. Wellman-Labadie O, Lakshminarayanan R, Hinckeemail MT Antimicrobial properties of avian eggshell-specific C-type lectin-like proteins. FEBS Letters Volume 582, Issue 5 , Pages 699-704, 5 March 2008 Additional Resources:
    https://www.autismparentingmagazine.com/best-supplements-vitamins-autism/
    Jefferson Adams
    Celiac.com 10/08/2018 - A new population based study reveals that celiac disease is associated with a wide range of medical conditions, including liver disease, glossitis, pancreatitis, Down syndrome, and autism, according to a database study of more than 35 million people.
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    Stay tuned for more information on this important celiac disease topic.
    Source:
     World Congress of Gastroenterology 2017
    Jefferson Adams
    Celiac.com 11/18/2019 - So far, the little research that's been done suggests that a gluten-free diet does not help to improve to improve the functioning of children with autism spectrum disorders. 
    A team of researchers recently conducted a randomized, controlled, single-blinded trial to see if children with autism spectrum disorders showed any difference in functioning on a gluten-free diet compared with a gluten-containing diet.
    The research team included Anna Piwowarczyk, Andrea Horvath, Ewa Pisula, Rafał Kawa, and Hania Szajewska. They are variously affiliated with the Department of Pediatrics with Clinical Assessment Unit at The Medical University of Warsaw in Warsaw, Poland; the Department of Pediatrics at The Medical University of Warsaw in Warsaw, Poland; and the Department of Health and Rehabilitation Psychology, Faculty of Psychology at the University of Warsaw in Warsaw, Poland.
    Their team assessed a total of sixty-six children with autism spectrum disorders, within normal IQ range, above  70, who had been on a gluten-free diet for at least two months before enrollment. 
    After continuing a gluten-free diet for two-months, the gluten-free diet group continued this diet, while the gluten-containing diet group consumed at least one normal meal containing gluten per day for 6 months. 
    At the end of the trial period, the two groups showed no differences in autistic symptoms, maladaptive behaviors, or intellectual abilities. In this study, children with autism spectrum disorders eating a gluten-free diet did not show any significant signs of improved functioning compared with those who ate a gluten-containing diet.
    These results confirm the results of an earlier, similar study from 2015.
    So, the takeaway here is that a gluten-free diet does not improve functionality in patients with autism spectrum disorder.
    Read more at: Journal of Autism & Developmental Disorders, October 2019

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