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GFCF For Autism or Apraxia

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Your child isn’t talking on schedule, or perhaps has just received a diagnosis of autism or apraxia. You are probably on this page because either another parent or even a professional suggested a “trial” of gluten free, dairy free, or gluten and casein free (GFCF). The following information is regarding those that are not dealing with celiac disease or food allergy aside.

One of the first things I always did as a parent of 2 children with special needs when a particular therapy was recommended was to look to see if there are any risks for adding or eliminating something to my child’s diet. In addition, you want to know if eliminating food that contains essential nutrients help with speech, as from what I found effective is adding, not eliminating, essential nutrients.

If you are wondering if there is any benefit to GFCF diet as a treatment for autism or apraxia, in brief after decades of research there is little to no research to support it, and there are multiple potential risks. Analysis of decades of research of GF or CF or GFCF all have come to a similar conclusion that there is little to no evidence to support this type of diet as a benefit for a communication impairment.

Do Decades of Research Support GFCF As Treatment For A Communication Impairment?

There have been many studies over the past decades and little support dairy or gluten elimination as a treatment for autism or apraxia. The most recent systematic review: Gluten- and casein-free diet and autism spectrum disorders in children: a systematic review systematically updated evidence on the effectiveness of a gluten-free and casein-free (GFCF) diet as a treatment for ASD in children.

They searched the Cochrane Library, MEDLINE, and EMBASE databases up until August 2016, for randomized controlled trials (RCTs); additional references were obtained from reviewed articles. There were a total of 214 participants included. With few exceptions, there were no statistically significant differences in autism spectrum disorder core symptoms between groups, as measured by standardized scales. The study concluded that “Overall, there is little evidence that a GFCF diet is beneficial for the symptoms of ASD in children.”

Some other meta-analysis reports prior to then include

A 2008 Cochrane review of gluten and casein-free diets in autism found: Current evidence for efficacy of these diets is poor.

A 2013 systematic review of gluten and autism found: Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.

And a 2014 review of the same concluded: We observed that the evidence on this topic is currently limited and weak. We recommend that it should be only used after the diagnosis of an intolerance or allergy to foods containing the allergens excluded in gluten-free, casein-free diets.

Back in 2011, the journal Pediatrics published the meta-analysis ‘Therapies for Children with Autism Spectrum Disorders” three different government-funded studies which analyzed autism research from 2000 to 2010 for “Pharmacologic and Complementary-Alternative Medicine”  
Full Report

“Mulloy and colleagues review of gluten free and/or casein free diets{, #6084} included 14 studies (including the Elder and Knivsberg trials) collectively including 188 participants ranging from 2 to 17 years of age. Most participants (93 percent) were diagnosed with autism or Asperger syndrome. Twelve studies examined GFCF diets while one assessed a gluten free and one a casein free regime. Diets were followed across studies for a mean of 10 months (range 4 days to 4 years), and four studies also included additional interventions such as vitamin supplementation, chelation, and behavior modification. Review investigators characterized the certainty of evidence of studies based on study design and methodological rigor, rating studies as suggestive, preponderant, or conclusive in line with classifications developed by Simeonsson and Bailey{, #6011} and Smith; 11 studies were rated as suggestive. Methodological concerns included use of measurements subject to bias, lack of blinding and control groups, use of only post-treatment measures, short intervention durations, and failure to control for the effects of maturation. Investigators considered 3 studies as providing a level of certainty of evidence for the lack of effectiveness of GFCF diets. Overall, the review authors conclude that the evidence supporting GFCF diets in ASD is limited and weak.”

GFCF DIET FOR AUTISM DOESN’T HELP

Evidence from the most controlled diet research in autism to date suggests that the GFCF diet doesn’t actually help. The University of Rochester study found that, for the 14 children monitored, a GFCF diet didn’t result in a change in sleep habits, bowel habits, activity or core symptoms of autism.

Leonard Rappaport, MD, MS, chief of Children’s Division of Developmental Medicine, says he’s been eagerly anticipating the results of this study. Even though he didn’t believe that the GFCF diet worked, he was still saddened by the study’s conclusion. “I was hoping I was wrong,” he says.

Rappaport says this study should be used to arm parents with scientific evidence, so they can weigh the pros and cons before adopting a restrictive diet for their child. “I hope that parents will go into these diets with their eyes open, and even if there seems to be anecdotal improvement, that they try the child off this restrictive diet after a while to see if it actually makes a difference,” he says. “Usually children with an Autism Spectrum Disorder (ASD) are on many interventions at the same time, and they have spurts of developmental progress. It’s difficult to isolate the intervention that was critical.”

Because it can be a challenge for kids to get ample fiber, vitamins and minerals while eliminating all gluten and casein, Rappaport recommends parents only try it under the guidance of a nutritionist. “There have been reports of rickets and osteopenia associated with the diet,” he says. Read more

DOUBLE BLIND CLINICAL STUDY DEMONSTRATES THAT EVEN STRICT GFCF DIET FOR AUTISM IS INEFFECTIVE

A conducted at the University of Rochester Medical Center (URMC) followed a group of children between two and five years old over 30 weeks and implemented a strict gluten-free, casein-free diet for each child. Foods were slowly reintroduced as the children’s attention, activity, sleep patterns, and bowel movements were monitored. As it turns out, there were no changes when the kids were given foods with gluten, casein, a combination of gluten and casein, or a placebo.

Gluten is found in cereal grains, especially wheat. A combination of proteins, it is known to cause illness in people with celiac disease. Casein is a main protein found in milk and cheese. It is used in processed foods, as well as industrial products, such as adhesives and paints.

Autism is a complex disorder that is characterized by varying degrees of difficulty in social interaction, verbal and non-verbal communication, as well as repetitive behavior.

This study on gluten-free, casein-free diet as it relates to autism was published in the Journal of Autism and Development Disorders. The authors say the results have prompted them to remind parents that a GFCF diet can meet a child’s nutritional needs, but professional advice about adequate calcium and vitamin D intake should be considered.

The study, which involved a blind food distribution so that the children and their families could not tell which snacks they were getting, screened for allergies and gastrointestinal disorders to see if these kids can benefit from dietary changes. Each participant received a total of three food challenges, with no challenge leading to “statistically significant differences”. The children were then followed for additional 12 weeks to see if there was any lasting impact. Again, no significant changes have been found.

Experts say that it has taken a long time to conduct a study on GFCF diet for autism because they needed to control for all the potential outside factors, such as gut disorders the children might have. Source

While Omega 3s were one of the only few things found “promising” in the thousand page report, gluten and or casein diet used when not needed as treatment was found not to be effective.   Many children with a communication impairment already have some social obstacles with their special needs, probably not the best idea to subject to further social isolation which can come with a restrictive diet Celiac disease runs in my family so I’m speaking from experience that it’s not fun not to be able to eat the birthday cake, or pancakes at the sleepover breakfast, or be able to share lunch with friends.

In addition to social risks, there are probably more importantly potential health risks if elimination diets are not done properly.   

RISKS OF DAIRY ELIMINATION

Conclusion to the study published in the American Journal of Clinical Nutrition “Children who avoid drinking cow milk have low dietary calcium intakes and poor bone health”

“In growing children, long-term avoidance of cow milk is associated with small stature and poor bone health. This is a major concern that warrants further study.  The high proportion of overweight and obese children in the present study was an unexpected finding, particularly because many of the children had been breast-fed for prolonged periods.  Recent studies suggest that low dietary calcium intakes can stimulate lipogenesis and inhibit lipolysis simultaneously, resulting in the accumulation of body fat.  In summary, our study of young male and female prepubertal children with a long history of avoiding cow-milk consumption has identified major problems in bone health (eg, small bones, low aBMD and volumetric BMAD, and a high prevalence of bone fractures) that many health professionals and members of the general public appear to be unaware of. Short stature and high adiposity were other health concerns.”

A similar report in the Annals of Nutrition and Metabolism Multiple Bone Fractures in an 8-Year-Old Child with Cow’s Milk Allergy and Inappropriate Calcium Supplementation  Case study of an 8-year-old boy with severe bone mass reduction and 4 fractures as a result of an unsupervised diet of milk elimination.

MORE RISKS ASSOCIATED WITH DAIRY REMOVAL

Several studies have demonstrated a direct relationship between lower dairy intake, lower BMD, and skeletal malformations.1,2,10,15-19 A direct relationship exists between lower dairy intake and smaller stature, lower total bone density, lower z-scores, lower serum calcium, higher parathyroid hormone (PTH), and higher alkaline phosphatase (ALP).1,2,10,15-19 The outcome appears to be a result of inadequate dietary calcium intake and concurrent vitamin D deficiency, in some cases leading to the development of rickets.15,17 Given that vitamin D regulates calcium absorption, it is understandable that these would be linked. Vitamin D deficiency is a widespread problem, particularly in northern latitudes. Supplementation here may be required to ensure adequacy.

Removal of dairy is often replaced with non-dairy calcium sources, which can be high in phytates and oxalates, both of which impair calcium absorption. Examples of these include spinach, almonds, chard, and grains.20 Phytic acid content in grains and legumes can be reduced by soaking, fermenting, or germinating for a number of hours prior to cooking and preparation.21

Concerns have also been expressed regarding protein, fat, vitamin B2, and niacin.1 Lower intakes of protein and fat are generally correlated with an overall lower calorie intake. Vitamin B2 and B3 deficiencies are rare, as non-dairy food sources are readily available, such as eggs, meat, vegetables, and whole grains.

Another concern with dairy elimination is the possibility of disordered eating patterns later in life. Maslin K et al showed that removal of cow’s milk in infancy affected adolescent eating behaviors of 101 individuals.22 They ate more slowly and were more likely to avoid certain foods and food groups, suggesting negative eating behavior.22 Source

Learn more about different types of dairy Can You Have Whey If GFCF?

GLUTEN FREE DIET

The research shared above examined both gluten and casein (dairy) free diets and found both to have little or no evidence to support either. As far as we know, there are three different disorders of which a gluten-free diet can avoid symptoms.

  • Celiac disease (not an allergy but an autoimmune disorder)
  • Wheat allergy
  • Gluten sensitivity

There are a few studies specifically that looked at gluten, for example:

NO EFFECTS OF GLUTEN IN PATIENTS WITH SELF-REPORTED NON-CELIAC GLUTEN SENSITIVITY AFTER DIETARY REDUCTION OF FERMENTABLE, POORLY ABSORBED, SHORT-CHAIN CARBOHYDRATES

This study found in a placebo-controlled, cross-over rechallenge study no evidence of specific or dose-dependent effects of gluten in patients with NCGS placed diets low in FODMAPs. There are also reasons why not to eat gluten free unless it’s needed.

“MOST PEOPLE SHOULDN’T EAT GLUTEN-FREE”

A gluten-free diet won’t provide a benefit, said Katherine Tallmadge, a dietitian and the author of “Diet Simple” (LifeLine Press, 2011). What’s more, people who unnecessarily shun gluten may do so at the expense of their health, Tallmadge said.

That’s because whole grains, which contain gluten, are a good source of fiber, vitamins, and minerals, Tallmadge said. Gluten-free products are often made with refined grains and are low in nutrients.

If you embrace such a diet, you’ll end up “eating a lot of foods that are stripped of nutrients,” Tallmadge said. Studies show gluten-free diets can be deficient in fiber, iron, folate, niacin, thiamine, calcium, vitamin B12, phosphorus, and zinc, she said. “You can eat a healthy diet without gluten, but you have to be very knowledgeable, and most people aren’t,” Tallmadge said. ”

Save a quarter of your plate for whole grains—not just any grains: Whole grains—whole wheat, brown rice, and foods made with them, such as whole wheat pasta—have a gentler effect on blood sugar and insulin than white bread, white rice, and other so-called “refined grains.” That’s why the Healthy Eating Plate says to choose whole grains—the less processed, the better—and limit refined grains.

How do whole grains improve health?

“The bran and fiber in whole grains make it more difficult for digestive enzymes to break down the starches into glucose. Soluble fiber helps lower cholesterol. Insoluble fiber helps move waste through the digestive tract. Fiber may also kindle the body’s natural anticoagulants and so help prevent the formation of small blood clots that can trigger heart attacks or strokes. The collection of antioxidants prevents LDL cholesterol from reacting with oxygen. Some experts think this reaction is a key early step in the development of cholesterol-clogged arteries. Phytoestrogens (plant estrogens) found in whole grains may protect against some cancers. So might essential minerals, such as magnesium, selenium, copper, and manganese. These minerals may also help reduce the risk of heart disease and diabetes. And then there are the hundreds of substances that haven’t yet been identified, some or many of which may play as-yet-undiscovered roles in health.”  

LISA GENG

Author and President of The Cherab Foundation   
Lisa Geng got her start as a designer, patented inventor, and creator in the fashion, toy, and film industries, but after the early diagnosis of her young children with diagnosis including severe apraxia, hypotonia, sensory processing disorder, ADHD, CAPD, she entered the world of nonprofit, pilot studies, and advocacy. As the mother of two “late talkers,” she is the founder and president of the nonprofit CHERAB Foundation, co-author of the acclaimed book, The Late Talker, (St Martin’s Press 2003), and holds two patents and patents pending on IQed nutritional composition. Lisa has been serving as a parent advocate on an AAN Immunization Panel since 2015 and is a member of CUE through Cochrane US. Lisa is currently working on a second book, The Late Talker Grows Up and serves as a Late Talkers, Silent Voices executive producer. She lives on the Treasure Coast of Florida.

References

  1. Henriksen C, Eggesbø M, Halvorsen R, Botten G. Nutrient intake among two-year-old children on cows’ milk-restricted diets. Acta Paediatr. 2000;89(3):272-278.
  2. Medeiros, LC, Speridião PG, Sdepanian VL, et al. Nutrient intake and nutritional status of children following a diet free from cow’s milk and cow’s milk by-products. J Pediatr (Rio J). 2004;80(5):363-370.
  3. Infante D, Tormo R. Risk of inadequate bone mineralization in diseases involving long-term suppression of dairy products. J Pediatr Gastroenterol Nutr. 2000;30(3):310-313.
  4. Fulgoni VL 3rd, Huth PJ, DiRienzo DB, Miller GD. Determination of the optimal number of dairy servings to ensure a low prevalence of inadequate calcium intake in Americans. J Am Coll Nutr. 2004;23(6):651-659.
  5. Institute of Medicine; Ross A, Taylor C, Yaktine A, Del Valle H, eds. Dietary Reference Intakes for Calcium and Vitamin D. Washington, DC: The National Academies Press; 2011:7-498.
  6. Agostoni C, Turck D. Is cow’s milk harmful to a child’s health? J Pediatr Gastroenterol Nutr. 2011;53(6):594-600.
  7. Lönnerdal B. Calcium and iron absorption–mechanisms and public health relevance. Int J Vitam Nutr Res. 2010;80(4-5):293-299.
  8. Cox KA, Parkin PC, Anderson LN, et al. TARGet Kids! Collaboration. Association Between Meat and Meat-Alternative Consumption and Iron Stores in Early Childhood. Acad Pediatr. 2016 Jan 20. pii: S1876-2859(16)00019-X. [Epub ahead of print]
  9. Katta R, Schlichte BSc. Diet and dermatitis: food triggers. J Clin Aesthet Dermatol. 2014;7(3):30-36.
  10. Hidvégi E, Arató A, Cserháti E, et al. Slight decrease in bone mineralization in cow milk-sensitive children. J Pediatr Gastroenterol Nutr. 2003;36(1):44-49.
  11. Jirapinyo P, Densupsoontorn N, Kangwanpornsiri C, Limlikhit T. Lower prevalence of atopic dermatitis in breast-fed infants whose allergic mothers restrict dairy products. J Med Assoc Thai.2013;96(2):192-195.
  12. Colson D, Kalach N, Soulaines P, et al. The impact of dietary therapy on clinical and biologic parameters of pediatric patients with eosinophilic esophagitis. J Allergy Clin Immunol Pract. 2014;2(5):587-593.
  13. Virta LJ, Kautiainen H, Kolho KL. Symptoms suggestive of Cow’s milk allergy in infancy and pediatric inflammatory bowel disease. Pediatr Allergy Immunol. 2016;27(4):361-367.
  14. El-Hodhod MA, Younis NT, Zaitoun YA, Daoud SD. Cow’s milk allergy related pediatric constipation: appropriate time of milk tolerance. Pediatr Allergy Immunol. 2010;21(2 Pt 2):e407-e412.
  15. Aggarwal V, Seth A, Aneja S et al. Role of calcium deficiency in development of nutritional rickets in Indian children: a case control study. J Clin Endocrinol Metab. 2012;97(10):3461-3466.
  16. Black RE, Williams SM, Jones IE, Goulding A. Children who avoid drinking cow milk have low dietary calcium intakes and poor bone health. Am J Clin Nutr. 2002;76(3):675-680.
  17. Davidovits M, Levy Y, Avramovitz T, Eisenstein B. Calcium-deficiency rickets in a four-year-old boy with milk allergy. J Pediatr. 1993;122(2):249-251.
  18. Infante D, Tormo R. Risk of inadequate bone mineralization in diseases involving long-term suppression of dairy products. J Pediatr Gastroenterol Nutr. 2000;30(3):310-313.
  19. Voloc A, Esterle L, Nguyen TM, et al. High prevalence of genu varum/valgum in European children with low vitamin D status and insufficient dairy products/calcium intakes. Eur J Endocrinol. 2010;163(5):811-817.
  20. Schlemmer U, Frølich W, Prieto RM, Grases F. Phytate in foods and significance for humans: food sources, intake, processing, bioavailability, protective role and analysis. Mol Nutr Food Res. 2009;53 Suppl 2:S330-S375.
  21. Gupta RK, Gangoliya SS, Singh NK. Reduction of phytic acid and enhancement of bioavailable micronutrients in food grains. J Food Sci Technol. 2015;52(2):676-684.
  22. Maslin K, Grundy J, Glasbey G, et al. Cows’ milk exclusion diet during infancy: Is there a long-term effect on children’s eating behaviour and food preferences? Pediatr Allergy Immunol. 2016;27(2):141-146.

LISA GENG

Author, Mom, Founder, and President of The Cherab Foundation   
Lisa Geng is an accomplished author, mother, founder, and president of the CHERAB Foundation. She is a patented inventor and creator in the fashion, toy, and film industries. After the early diagnosis of her two young children with severe apraxia, hypotonia, sensory processing disorder, ADHD, and CAPD, she dedicated her life to nonprofit work and pilot studies. Lisa is the co-author of the highly acclaimed book “The Late Talker” (St Martin’s Press 2003). She has hosted numerous conferences, including one overseen by a medical director from the NIH for her protocol using fish oils as a therapeutic intervention. Lisa currently holds four patents and patents pending on a nutritional composition. She is a co-author of a study that used her proprietary nutritional composition published in a National Institute of Health-based, peer-reviewed medical journal.

Additionally, Lisa has been serving as an AAN Immunization Panel parent advocate since 2015 and is a member of CUE through Cochrane US. Currently working on her second book, “The Late Talker Grows Up,” she also serves as an executive producer of “Late Talkers Silent Voices.” Lisa Geng lives on the Treasure Coast of Florida.