What is it?
A gluten-free diet is an eating plan in which gluten (a protein found in some grains) is eliminated from the diet. Foods and drinks containing wheat, barley, rye, oats, or anything made from these grains are avoided. A gluten-free diet is often used for children with autism in combination with a casein-free diet. The casein-free diet calls for the elimination of milk protein (casein). Both diets are called elimination diets because a particular type of food is eliminated from the child’s meals and snacks (1).
Proponents of the gluten-free diet say that many children with autism have gastrointestinal difficulties that make it hard for them to digest certain grains properly. There are different possibilities for ways in which this could affect children with autism. The most studied theory is that eating gluten leads to high levels of protein by-products, called gluteomorphines, in some children with autism. These by-products may then affect behavior like a drug would. Specifically, in these children, gluteomorphines could reduce their desire for social interaction, block pain messages, and increase confusion. If gluten is taken out of the diet, the idea is that this will reduce the level of gluteomorphines, and behavior will improve as a result (2-4).
What's it like?
Parents who choose a gluten-free diet for their child must become aware of the ingredients of everything in their grocery cart. Products containing wheat, barley, rye, or oats in any form should not be purchased. Foods containing modified food starch also contain gluten, but modified corn starch does not. Maintaining a gluten-free diet can be hard to do at first because gluten is present in many prepared foods. However, parents can take a gluten-free cooking class or read a gluten-free cookbook (see Resources) to learn how to cook without gluten and still provide enough nutrition for the child (see Is it harmful?).
What is the theory behind it?
Gluten is broken down in the intestines into several by-products, including one called gluteomorphine. These by-products are much more common in the urine of children with autism than in children without autism. Some scientists have concluded that they are leaking from the intestines into the blood of these children (2, 5). Many research studies report that children with autism often have gastrointestinal problems, including intestinal leakage (5). The argument is that, if gluteomorphine is being absorbed into the general circulation in children with autism, then it could affect behavior (2-5).
In support of this theory, there is evidence that blocking at least some of the action of gluteomorphine improves the behavior of children with autism (6). Moreover, recent evidence of a genetic mutation common among children with autism has been traced to a gene involved in gastrointestinal function (7).
Does it work?
The effectiveness of elimination diets in improving the behavior of children with autism has only recently been scientifically researched (8). This research has almost always examined diets that are both casein- and gluten-free.
One well-controlled study focused on children with autism who had abnormally high protein by-products in their urine, and therefore were more likely to be sensitive to casein and gluten (see What is the theory behind it?). One group of these children was fed a strict casein- and gluten-free diet for 12 months. This group had significantly fewer autistic symptoms than the remaining children, who were not fed this diet (9).
Another well-controlled study of casein- and gluten-free diets focused on children with autism regardless of the level of protein by-products in their urine (10). Overall, the study found no significant differences in behavior between children on the elimination diet and children on regular diets, although individual parents reported behavioral improvements (10). A third well-controlled study reported no significant improvements in speech for 13 children who followed a gluten-free casein-free diet for 6 weeks (11). There were limitations in these studies, including relatively short time periods on the diet and/or small samples sizes.
Regardless, in both cases, the tested diets were casein- and gluten-free, so it is not clear whether it was the elimination of casein, gluten, or both that resulted in any improvements. A third study that did examine the effect of a gluten-free diet on the behavior of children with autism did not compare children on the elimination diet with children not on the diet (12). Therefore, even though there were improvements seen in the behavior of children on the diet, these may also have occurred over the 5 months of the study without the elimination diet
The current thinking is that there is at least some evidence showing that a gluten-free diet, when combined with a casein-free diet, can help improve the behavior of some children with autism. Although the casein-free diet combined with a gluten-free diet is popular, there is little evidence to support or refute this intervention and reviewers have determined that meaningful conclusions cannot be drawn from the existing literature (3, 4).
Is it harmful?
The major health concern for a child on a gluten-free diet is whether the child receives adequate nutrition. A recent report showed that the protein and nutrient intakes of children with autism on casein- and gluten-free diets were not different from those of children with autism on standard diets, but there was a trend towards lower calcium and copper intake in children on elimination diets (13). As a result, some researchers suggest that all children on elimination diets should be under the care of a nutritionist or physician (1).
Cost
A gluten-free diet can be expensive and difficult to follow, but as these diets become more common, the transition to the new diet becomes easier. Gluten-free versions of many favorite foods such as pasta, bread, and cookies are becoming more readily available in mainstream stores. Moreover, changes in the diet to replace breads, pastas, and other processed foods with vegetables, protein, and other whole foods are big steps toward a healthy, gluten-free diet.
Restaurants offering exclusively gluten-free meals are likely to be on the pricey side and are not common. Most restaurants will have gluten-free options on their menu (i.e. salads without croutons, fish or meat with vegetables served without bread or breading, etc.), although these choices may be limited. You may need to notify your server that you need gluten-free food choices, and they can help you choose between the available options or suggest changes to menu items.
Online sources for gluten-free cooking ingredients are also available, and some of these may be priced more affordably (see Resources ). Also, bulk or co-op buying may ease the cost of gluten-free items.
Resources
Healing Thresholds has partnered with The Gluten-Free Mall. They sell gluten-free prepackaged foods that may be convenient for some families.
The Food Allergy and Anaphylaxis Network provides many resources to help children live with a gluten-free diet: http://www.foodallergy.org/.
Several books that might be helpful in understanding the gluten-free diet approach are:
Diet Intervention and Autism: Implementing the Gluten Free and Casein Free Diet for Autistic Children and Adults : A Practical Guide for Parents
How to Eat Well Again on a Wheat, Gluten and Dairy Free Diet
Special Diets for Special People: Understanding and Implementing a Gluten-Free and Casein-Free Diet to Aid in the Treatment of Autism and Related Developmental Disorders
The Kid-Friendly ADHD and Autism Cookbook: The Ultimate Guide to the Gluten-Free, Casein-Free Diet
References
- Murch, S. 2005. "Diet, Immunity, and Autistic Spectrum Disorders." J Pediatr. 146(5):582-584.
- Reichelt, K.L., and A.M. Knivsberg. 2003. "Can the Pathophysiology of Autism be Explained by the Nature of the Discovered Urine Peptides?" Nutr.Neurosci. 6(1):19-28.
- Christison, G.W., and K. Ivany. 2006. "Elimination Diets in Autism Spectrum Disorders: Any Wheat Amidst the Chaff?" J Dev Behav Pediatr. 27(2 Suppl):S162-S171.
- Millward, C., et al. 2004. "Gluten- and Casein-Free Diets for Autistic Spectrum Disorder." Cochrane.Database.Syst.Rev. (2):CD003498.
- Horvath K, P.J. 2002. "Autism and Gastrointestinal Symptoms." Curr Gastroenterol Rep. 4(3):251-258.
- Elchaar, G.M., et al. 2006. "Efficacy and Safety of Naltrexone Use in Pediatric Patients with Autistic Disorder." Ann.Pharmacother. 40(6):1086-1095.
- Campbell, D.B., et al. 2006. "A Genetic Variant that Disrupts MET Transcription is Associated with Autism." Proc Natl Acad Sci USA 103(45):16834-16839.
- Millward, C., et al. 2008. "Gluten- and casein-free diets for autistic spectrum disorder. Cochrane Database Syst Rev 2008 April 16;(2):CD003498.
- Knivsberg, A.M., et al. 2002. "A Randomised, Controlled Study of Dietary Intervention in Autistic Syndromes." Nutr.Neurosci. 5(4):251-261.
- Elder, J., et al. 2006. "The Gluten-Free, Casein-Free Diet in Autism: Results of a Preliminary Double Blind Clinical Trial." Journal of Autism and Developmental Disorders 36:413-420.
- Seung H, Rogalski Y, Shankar M, Elder J. The Gluten- and Casein-Free Diet and Autism: Communication Outcomes from a Preliminary Double-Blind Clinical Trial. J Med Spch Lang Path 2007;15(4):337-5.
- Whiteley P., et al. 1999. "A Gluten-Free Diet as an Intervention for Autism and Associated Spectrum Disorders: Preliminary Findings." Autism 3:45-65.
- Cornish, E. 2002. "Gluten and Casein Free Diets in Autism: A Study of the Effects on Food Choice and Nutrition." J Hum.Nutr.Diet. 15(4):261-269.
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Nutrition and Essential Fatty Acids May Help Verbal Apraxia and Autism
Dec 2, 2009 by AnonymousCan nutrition help verbal skills in children with autism? A study reported the August 2009 issue of Alternative Therapies says yes, for some children. Combined vitamin E and omega 3 therapy may help a type of verbal apraxia (a type of speech problem) that may be linked to food allergies and nutritional problems.
Children with verbal apraxia have trouble pronouncing words and may have severe speech problems. Many scientists have thought that verbal apraxia is a brain disorder. This study suggests that verbal apraxia may also be related to metabolism differences and nutritional problems.
Metabolism is the process of making energy from food. Metabolism is a complex system of enzymes, proteins, fats, and carbohydrates that work together to digest food and turn it into energy that the body can use. People likely have a wide range of metabolic differences. Some of those differences can be quite large for some individuals. In this study, they suggest that some children with autism may have metabolism differences that affect how they process foods, and how their brain works.
What did the study show? This study tested 187 children with verbal apraxia, and many of them also had autism. All of the children took 400-3,000 International Units of vitamin E daily. They also took 1-3 grams of polyunsaturated fats (including omega 3 fatty acids) per day.
Almost all of the families (97%) reported improvements in speech, imitation, coordination, eye contact, and other skills with vitamin E and omega-3 therapy. There were few side effects reported during the length of the study.
The authors also described blood test results for nutritional information about 26 of the children. They reported low carnitine levels, high anti-gluten antibodies (suggesting a gluten allergy), low vitamin D levels, and fat absorption problems in most of the children they tested. They described how nutrition and metabolism might be different in some children with autism.
What do these results mean for children with verbal apraxia and autism? The results are exciting because 97% of the children showed improvements, and there were few side effects. Sounds perfect, doesn’t it? But it’s not quite as perfect as it sounds.
There are some major limitations of this study. First of all, the researchers asked parents to give their subjective opinion of improvements. The parents knew they were in a study. Although they were given specific improvements to look for, there is a possibility of bias in favor of reporting a good result.
Secondly, they did not use placebo controls. All of the parents and children knew they were getting the supplements. There is the possibility of the “placebo effect” which is when people taking placebo (“sugar pills”) report feeling better or actually show improvements. Many think it is the power of the mind/body connection that somehow influences how they feel or even how their body physically responds. There is scientific evidence for brain connections to the immune and endocrine systems to support these observations. It is possible that, in this study, the children and/or parents were hopeful that the supplements would work, and that influenced the outcome. There was a placebo effect observed in a recent study of citalopram and autism in children.
Third, the supplements may be helpful for only a subset of children with verbal apraxia. The researchers chose children with verbal apraxia who also had metabolism differences….
What is the bottom line for omega-3 and vitamin E from this study? In spite of the shortcomings of this study, the results are very promising. Children with verbal apraxia may benefit from vitamin E and omega-3 supplements, which may get their metabolism on a better track. And researchers will continue to explore the nutrition/metabolism link with brain function. Good nutrition is likely to be important for many brain functions, not just verbal apraxia.
Starting a gluten free diet
Oct 7, 2009 by AnonymousI think that it is good to purchase a book describing a GF diet before embarking on the diet. You may also want to consult with a nutritionist who can advise you on how to modify your family’s current eating to make it GFCF. You can also look to find another mom in your community who is doing it. Many of my mom friends are GFCF. I think if you hang out with another mom who is making those choices, you will realize that it is not so hard.
I (and others) can answer your questions online, but you may have to see it in practice in order for it to seem less intimidating.
In my experience, there are three approaches. My approach is to give up processed food and shop the periphery of the grocery and get food from farmer’s market/local farms. I serve protein, vegetables, and fruit. I cook every night and serve simple tasty food. This is relatively easy and works for me.
Other moms are very impressive and do what I do plus they bake fabulous things using nut flours, etc. I have tea once a week with a good friend who bakes the most extraordinary GFCF muffins. She does this every morning for her family!
The third category is represented by Jenny McCarthy. Sure, she serves her kid fruit and stuff, but mostly she seems to rely upon GFCF processed foods that are available in Whole Foods, Trader Joe’s and specialty grocery stores.
You probably need to figure out where you fit in these three categories and then just give it a try.
Casein free and gluten free diet
May 17, 2009 by dankohnI have an autistic son age 5. He is very special in his own way and he is very special in my heart. For the last one year the doctor advised me to have a CFGF diets which is very hard for me to enforce. He is very intelligent that he will try to grab and find the bread, yogurt or other foods that he is prevented without my knowledge even I have tried so hard to hide it somewhere else. I have tried my best to stop all the casein and gluten products from him but not 100%. I just want to discuss, is the diet is very important for him?? What should I do to control the diet?
I'm on-board...by myself
Jan 23, 2009 by dankohnWinter stinks. I'm serious. I've had it up to here, literally, with the snow. And I can't stand the cold. The older I get, the harder it is for me to just breathe outside in sub-zero temperatures. The Norman Rockwell imagery is only enticing up to and including Christmas. After that, those images get old. As winter goes on, they become a source of contempt and scorn. My sister lives in California and she laughs and laughs when she says, "Gee, it sure is cold here. It got down to fifty degrees overnight!"
Strangely enough, the cold weather seems to affect the kids not at all. Last week, the kids had an unexpected five-day weekend. School was cancelled Thursday, Friday and Martin Luther King Jr. Day was Monday. A nice little mini-break during which we had NOTHING to do because we couldn't leave the house. Actually, the car did start on Thursday so I took the kids to Target. We wandered aimlessly before picking up Jonathan's blood pressure medications and then one of the wisest, most useful purchases I've ever made: a heated mattress pad. It's wonderful. It's like slipping into a hot tub in bed at night. I can't stand sheets made from anything other than at least 250 thread-count cotton, so flannel sheets are out. I need smooth, but the cotton ones get so cold. Ha - not anymore. Thanks for the gift card, Aunt Sally! We used it well.
Speaking of beds, Thomas is still playing musical beds at night. He is getting better, though. He will come in every other night or so. This morning, he did wait until after Jonathan got up for work to come into our bed. That's our little rule; they can't come in until Daddy gets up for work. Hayley disregards this rule entirely. She usually comes in around 1 a.m. (I think...) but she's such a good snuggler. If I'm still up when she comes in, I send her back to her bed. Lately, since we've been using this heated mattress pad, if I've got mine on (there are separate controls for each side of the bed) and Hayley's snuggled up against me, I wake up soaked with my own, and also some of Hayley's, sweat.
Thomas has been doing really well in school. Last Tuesday when I was in class, the teacher had each of the kids take a dry-erase board and a marker and sit on the floor and practice writing words. This seemed like something we could do at home, so I took a huge dry-erase board from an easel that nobody uses, cut it in half with a jigsaw, and now Thomas and I spend a few minutes every day writing what his teacher calls "popcorn" words; words that come up in conversation a lot. Words like can, today, we, him, she, it, etc. I also pick a really simple book from our shelf and try to get him to sound out words with me. Most of the time he is very reluctant and complains and whines about it. The fact is that he simply does not like to read or write. He might like to read if he learned how, but I don't think that writing will ever be his favorite thing to do. Hayley loves to do it mostly because she lives for praise from grown-ups. Thomas gets shy and anxious when Jonathan and I praise him for his efforts. We try to keep that kind of thing to a minimum, just saying, "Good, okay, what's the next word?" If we don't jump up and down and clap our hands and shout, he's okay. Hayley loves the jumping and clapping.
Today Thomas saw the occupational therapist. She came out to talk to me while the kids were getting their coats on. She mentioned how much improved Thomas is at writing his name. When we try to write it at home, Thomas makes such big letters or he starts writing in a spot that doesn't give him enough room to finish his whole name. The OT gave him a very long strip of paper today, so he was able to fit all the letters on it. He sometimes makes the letter "s" backwards, but she told me that they don't get concerned about that until second grade. He also needs to work on his lower-case "h" and "n" since they look very similar. Other than that, she said he's doing really well and she's noticed an improvement. Something I forgot to ask her was if she's noticed Thomas needing a lot more OT since after winter break, which has always been a hard time for him. Nobody has said anything and the extra OT minutes are built into his schedule this time of year, so if he needs it, he's getting it.
So far, we haven't noticed any side-effects from the Strattera. I don't know if it's really doing anything for him, but that's what we said about the Focalin until we took him off of it. It had been making a tremendous difference...along with a disconcerting facial tic. Jonathan works with a woman whose boyfriend's son is autistic with symptoms of ADHD. She said that this young man had developed an extremely pronounced facial tic while taking Ritalin or Focalin or something...one of the stimulants, anyway. She said that he was switched to Strattera too and hasn't had any tic problems and the medication seems to work for him. Thomas has been taking it for just over two weeks. The doctor said it needs to ramp up in his system for about four weeks before we might notice a difference, so I'm counting the days. I'm also supposed to call her around February 7 to let her know how things are going. She may decide to raise the dose from 10 mg to 18 mg. The lower dose of Focalin didn't produce a facial tic, but the higher one did. We'll see. At least we don't get bored, having to constantly observe our child for signs of one of the millions of side-effects of these meds.
I had the chance to speak to an old college friend of mine that I got in touch with on Facebook earlier this month. It just so happens that his own son was diagnosed with autism as well. He and his wife are 100% sure it was the 18 month MMR shot because he had been doing fine; meeting milestones and developing normally until he had that shot. He lost all of his words over the course of the week following the shot and was a completely different kid one week after the shot. I know that there are a lot of people out there who have dismissed vaccines as a cause of autism (mostly doctors and drug companies, no?), but it's stories like this one from my friend that really make me wonder.
I'm starting to think that autism is not caused by one thing only. I think that vaccines could cause it, but I don't think that Thomas' autism was caused by a shot. He never "lost" words; he just never had any words to lose until he started speech therapy. I really wonder a lot about the flu shot I had in my third trimester with Thomas; my doctor told me to get one, so I did. I wonder if something funky happened with that. The other possibility is that Jonathan was working on a job site during the time Thomas was conceived and while I was pregnant. This site was known to have heavy metals in the soil and Jonathan had to have blood tests before he started working there and after he finished the job to make sure he wasn't poisoned. I don't know if that kind of thing can get into sperm; it would seem that if it did, the sperm would be incapacitated and therefore unable to do its genetic job. Who knows? I'm not a doctor. But I do wonder if Jonathan went to work, put his dirty (heavy metals-laden) jeans and socks in the laundry basket, and then I handled those clothes, shaking them out occasionally and probably releasing all kinds of toxins in the air that I must have inhaled. It's my best guess at this point.
My friend with the autistic son pretty much considers his boy "recovered" due to their strict gluten and casein-free (GFCF) diet. I've really been wondering if we should try it. Of course, this is no time to be spending hundreds more per month on groceries, but I do wonder if Thomas would benefit from it. Jonathan does not want to do it, but purely for selfish reasons, I think. If one person in the house is GFCF, the whole family has to be. I must admit, it would be hard for us; I myself am a bread and pasta junkie, but if Thomas could "recover," my God - how could we not do it? I'm going to check out my buddy's wife's website, gfcfdoneeasy.com, and see if it really can be done easily. For as hard as it would be on Jonathan and I (I don't think Hayley would care much; she never eats that much anyway), it would hands-down be hardest on Thomas. I'll have to think about it a lot more, but I'm really beginning to think we should try it. If it doesn't work, it doesn't work and we can go back to our usual eating habits. But what if it does work? I've heard different statistics about it, saying that anywhere from 60% to 80% of autistic or special-needs kids benefit in some way from a GFCF diet.
The problem is, we all have to be on-board. Right now, I'm on this little board all by myself.