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May 20th, 2010
09:56 AM ET

Study: Gluten-free diets do not improve autism behavior

By Trisha Henry
CNN Medical Producer

Keeping the proteins found in wheat, barley, rye and dairy out of the diets of children with autism does not lead to behavior improvements, new research has found.

While many doctors do not recommend a special diet as an autism therapy, there are widespread reports from families on the internet lauding the success of keeping foods containing gluten and casein out of an autistic child's diet. Currently, nearly one in three children with autism is given a gluten- and casein-free diet in an effort to reduce symptoms of the neurodevelopmental disease, study authors say.

Actress and activist Jenny McCarthy is one the most vocal parents who claims her son's autism symptoms improved when she switched his diet.

The cause of autism, a neurodevelopmental disorder that hinders communication and social interaction, is not yet known and there is no cure. While there are a few science-based therapies, which applied early in a child's development can improve the behavior in some children, for many families finding way to help children can be challenging and lead them to try many unproven treatments.

Researchers at the University of Rochester Medical Center in upstate New York put the gluten- and casein-free diet to most stringent test today, according to lead author Dr. Susan Hyman.

They looked at 14 children with autism between the ages of 2½ and 5½ years old – but without celiac disease or allergies to milk and wheat.

First they removed gluten and casein from the children’s diet. After four weeks, the children were randomly given either gluten or casein, both, or a placebo, through a carefully measured snack. Parents, teachers and a research assistants were questioned about the child's behavior before and after the snack was eaten.

"Under these controlled circumstances we did not find an effect on behavior in response to challenges with gluten and casein in children with autism but without GI disease," says Hyman.

Parents need to be aware of the potential cost and measure the benefit before they consider trying a new treatment for their child, says IMFAR Program Committee program chair, David Mandell.

Hyman and Mandell both say more studies need to be done looking at the effects of diet and the specific subtypes of autism.

The study is being released this weekend at the International Meeting for Autism Research in Philadelphia.

Autism usually develops by the time a child is 3 years old. An average of 1 in 110 children suffers from some type of an autism spectrum disorder.

Children with autism can have one of several complex neurological disorders, which lead to social impairments, communication difficulties and restrictive and repetitive behaviors. According to the most recent data from the Centers for Disease Control and Prevention, an average of 1 in 110 children suffers from some type of an autism spectrum disorder.

Editor's Note: Medical news is a popular but sensitive subject rooted in science. We receive many comments on this blog each day; not all are posted. Our hope is that much will be learned from the sharing of useful information and personal experiences based on the medical and health topics of the blog. We encourage you to focus your comments on those medical and health topics and we appreciate your input. Thank you for your participation.


soundoff (185 Responses)
  1. MS

    Can we please stop calling them autistic children??? The correct term is "children with autism"–I would think a medical article would know better than this and use person-first language. Individuals should not be defined by their diagnosis.

    May 21, 2010 at 10:10 | Report abuse | Reply
    • Stephanie

      My son is autistic – he is an autistic child. And it's okay to say it. In fact everyone should just SAY it. You're not making his condition less inhibiting or more favourable by turning it into a noun. I am a female human being, not a human being with female chromosomes. Relax.

      December 5, 2011 at 16:12 | Report abuse |
    • beth

      the reason for the "ism" instead of the "ic" is by saying "autistic" it makes it a mental disease rather than a physiological condition. to bring along the stereotype and misconception that it's a mental disease means the whole community is viewed incorrectly.

      February 22, 2012 at 22:56 | Report abuse |
    • hogstonhm

      This is a pet peeve of mine as well. The disorder is not the definition of the child. I teach children with Autism, but they are also a blue eyed child, or a sweet child, or a soccer player, or a music lover, or a sibling, or a chocolate lover, I could go on and on. It's just a respect thing. I also hate when someone says, "A Downs Syndrome child" or "A Diabetic child."

      September 9, 2012 at 00:39 | Report abuse |
    • dee

      I very much agree with you. I am a Mental Health Major and we are told to refer to these children as "having Autism" which tells us that they are a child who has differences, but they are still children. To say the child is "Austistic" says that the Autism Has the child, meaning that it takes the character from the child. All children are just children. They may have differences, or what we consider disabilities, but they are all special and deserved to be treated with respect and love. My son is being tested for Autism, and whether he is diagnosed as having a form of Autism it won't change who he is.

      October 3, 2012 at 23:45 | Report abuse |
  2. someone

    oh one last thing, if you see a change in pupil dilation on ANYONE, after giving them wheat or dairy, , then you are nuts, totally and unequivicably nuts. If you could videotape it you would have a breakthrough. instead its just like the women who buy cosmetics on tv and swear they look younger after a week on blah blah anti aging cream, and yet, no one else can see a difference at all. But then again there are over a million people a year in the us who send in reports of alien abduction . so i guess idiocy is widespread.

    May 21, 2010 at 11:37 | Report abuse | Reply
    • Joel's Mom

      You're talking to people who are going through some rough stuff, Someone -insulting remarks are not appropriate here. BTW, we've seen the dilation phenomenon, too.

      September 8, 2010 at 20:34 | Report abuse |
    • Shirley

      Firstly, my child reads college text books and I must say he can punctuate far better than you can. He has aspergers and is high functioning. "Bad parenting" I don't think so. I do think someone stole your Wheaties though.

      Let's put this in to perspective here: Things that cause diabetes bread, sugar, and poor diet habits. Wait... did I say bread? Isn't that one of the gluten products? Breads (which include oats etc) turn directly in to sugar. If I fed my kid a strawberry instead it would be a complex sugar. Breads are simple sugars and make insulin go wonky. Why wouldn't the same be true for autism? Simple sugars bad/ complex good.

      Most of this stuff is processed any way. May as well make it education and build a vegetable garden.

      October 6, 2010 at 11:42 | Report abuse |
  3. Mother of an autistic child

    I am a fan of Dr. Gupta but this article is a big disappointment. Obviously the researchers need to obtain more understanding of autism before even design their test. As a mother of a 4-year-old kid on the spectrum and a member of a big local autism parents group, I haven't met even one parent whose autistic kid doesn't have food allergies. Excluding kids who are allergic to wheat and milk from the test is like excluding cancer patients from a cancer drug trail.

    Isn't now the time for the medical society to do some real research work on autism, given the following facts??

    1 percent of the population of children in the U.S. ages 3-17 have an autism spectrum disorder.
    Prevalence is estimated at 1 in 110 births.
    1 to 1.5 million Americans live with an autism spectrum disorder.
    Fastest-growing developmental disability; 1,148% growth rate.
    10 – 17 % annual growth.
    $60 billion annual cost.
    60% of costs are in adult services.
    Cost of lifelong care can be reduced by 2/3 with early diagnosis and intervention.
    In 10 years, the annual cost will be $200-400 billion.
    1 percent of the adult population of the United Kingdom have an autism spectrum disorder.
    The cost of autism over the lifespan is 3.2 million dollars per person.

    May 21, 2010 at 11:38 | Report abuse | Reply
    • Leela

      If there are no autistic children without any allergies, then how did they manage to find the kids for the study?

      May 24, 2012 at 14:44 | Report abuse |
    • Ann

      "I haven't met even one parent whose autistic kid doesn't have food allergies"

      So is autism an autoimmune disease? Like asthma and allergies and all the other things our culture is afflicted with because of excessive hygiene during childhood?

      August 28, 2012 at 10:01 | Report abuse |
    • hogstonhm

      I've taught children with autism for 11 years, and pretty much all of them did not have food allergies.

      September 9, 2012 at 00:41 | Report abuse |
  4. jerri johnson

    This study is flawed in that they chose 14 autistic children who are NOT allergic to gluten or dairy and then studied them and found out that they did not react to gluten or dairy! The point is that many children with autism ARE allergic to gluten and dairy and the resulting inflammation when these children ingest it exacerbates inflammatory processes in their brain as well as their GI tract.

    Why didn't they study 14 children who are allergic to gluten and dairy and see if removing those foods helped their behavior? How many children did they need to screen through to find 14 who were not allergic?

    May 21, 2010 at 12:56 | Report abuse | Reply
    • Leela

      You clearly misunderstand the point with the research. If an autistic kid is allergic to something the sane thing is to remove the thing it is that they are allergic too. This does not however cure autism, but the allergy symptoms. In order to see if the diet actually cures autism you can't include those that are allergic to the things in it, it would mess up the results since improved behaviour could just be from ease in the allergy symptoms.

      May 24, 2012 at 14:39 | Report abuse |
  5. Alison

    The small sample size is problematic, as is the fact that the researchers did not measure long term effects of adding wheat and dairy back into the children's diets. One snack hardly seems like the most "stringent" test possible. It's certainly an interesting idea, but I think more research is necessary before it becomes best practice.

    May 21, 2010 at 13:05 | Report abuse | Reply
    • Irish

      Agreed
      14 kids studied. How big was the control group? 3 kids.
      What a joke to run a story based on this "study".
      CNN is a complete joke.

      July 10, 2012 at 22:26 | Report abuse |
  6. Dr. John

    Not enough information to really judge the study (how were the kids selected? Are the "classical" or "on the spectrum" kids?) but the conclusions I would not agree with because I have much better science not only showing that there is an affect but also exactly how the mechanism works.

    Dietary changes and supplements have very minimal affect on traditionally diagnosed autistic children that have inability to relate to their surroundings, head banging, severe stimming behavior etc.

    For children that are now being placed on "the autism spectrum" it is well proven (Fudenburg, et al.; study on my blog) The mechanisms of action have been proven. Gluten and casein are not necessarily the primary culprits but are generally contributory. Salicylates, dyes, MSG, etc. are often more problematic. The children don't have proper methylation pathways to break the "excitotoxins" down and eliminate them metabolically.

    Casein, gluten and other lectin dense foods cause increased gut inflammation and will increase inflammatory markers which is obviously problematic for impaired brains.

    I have also treated many children on the spectrum. Most are now mainstreamed in school. Although we also did other treatment protocols, the dietary changes were primary.

    May 21, 2010 at 15:51 | Report abuse | Reply
    • David B

      Dear Dr. John...

      Do you have a link to your website and/or blog? I would love to read your data. Thank you very much.

      David

      May 29, 2011 at 00:20 | Report abuse |
    • A

      You have much better science? In what peer-reviewed resource has it been published? Oh, it hasn't? Gee, I wonder why. Because it ISN'T better science, or you've just made it up.

      February 20, 2012 at 15:31 | Report abuse |
  7. Katie

    Wow! I found this posting to be a bit short sighted. I myself am one of those parents that have found the GF/CF diet to reduce severity and frequency of meltdown behaviors in my autistic 3 yr old. We are new to researching the many therapy approaches but nutrition and GF/CF have reduced autistic symptoms by half. Why isn't it completely gone – because I think we are still finding other root causes of her symptoms. For example, we just discovered she's allergic to cats and we have two indoor cats. Autism is a very broad descriptor for a neurological disorder and there are many causes out there. A child very susceptible to toxins, allergies, or auto immune disorders may have many insults resulting in the collective list of symtoms falling under autism spectrum disorder.
    Our observations are that 3-4 days subsequent to a gluten exposure, a severe meltdown (major behavioral episode) occurs. I'm a scientist and have repeatable results that I myself and others have observed. IgE mediated response would be immediate. IgG mediated (or even some other mechanism to be discovered) occurs or could occur later. Your study would not have collected data and detected the issues in someone like my daughter. – which seems more consistent with the observations i have heard.

    Personal experiences and observations often precede medical philosophy changes. How more powerful the medical industry would be and ahead of the curve if there was more embracing people's observations as opposed to outright refusal to listen. What advantage do i have to lie or be biased in what i think is helpful to my child? Let's face it – food elimination diets are a pain and can be expensive and I would definitely not be doing if I hadn't seen repeatably a favorable change in my child's disposition.

    May 21, 2010 at 16:44 | Report abuse | Reply
  8. jerri johnson

    To read a scientific study testing whether children with autism benefit from nutritional supplements, research was done through five universities where some children were given conventional medications and some were given micronutrients made by Truehope. Both groups showed improvement, but the group on the micronutrients showed significantly more improvement than did the group on medications, and without side effects. See http://www.truehope.com/newsletter/editions/Online105-May-20-2010.html
    Truehope makes supplements that have been helpful for people with bi-polar disorder and other mental illnesses.

    May 21, 2010 at 17:14 | Report abuse | Reply
  9. Scott Wolfe

    I would like to leave an open letter to Trisha Henry – CNN Medical Producer
    Your post about "Gluten free diets not improving autism behavior" is flawed from the title and only gets worse. I think it is appalling and completely unprofessional to even report on such an unprofessional and lacking study, 14 children , 1month, really,? Really! The fact that it was mentioned on TV as a short blurb only makes your short sightedness more confounding. That one short misleading comment could plant doubt into thousands of people who's children might benefit from a diet. So many parents know damn well what a massive impact the diet has on their child and the obvious detrimental physiological effects a small dose of gluten or casein can cause. Ghastly irresponsible on your part , You should be fired! What qualifications do you have to make such a judgement that could effect so many people whom struggle daily, for years to give their children a life like yours?

    May 21, 2010 at 20:52 | Report abuse | Reply
  10. Kris

    14 kids – come on, how small a study is that, hardly credible.
    Second of all, you may not see an immediate reaction, it's the cumulative effect that hurts the kids so this doctor either doesn't understand the situation or is being paid by the anti Jenny people to discredit the diet. I don't need to see any double blind placebo studies, I have my son as living proof this diet works. I would love any doctor to come to my house and handle his screaming, non sleeping, racing around and constant dirrahoea when he has wheat and dairy.... I'm not sure why the medical profession is so bent on discrediting what thousands of parents have found in their own homes and schools.... breaks my heart because so many more kids could be helped if mainstream medicine told their parents to give it a go...

    May 22, 2010 at 00:35 | Report abuse | Reply
  11. Stephanie

    Whether or not the study was adequate; whether or not diets work for people with autism, this article is a travesty. A failure to find evidence in one study doesn't merit a conclusion (much less a headline) like "Gluten-free diets do not improve autism behavior". It's bad science, and bad journalism. Failure to find evidence does not prove anything, and anyone with a working grasp of the scientific method should know better. This is not science, it's sensationalism.

    May 23, 2010 at 03:03 | Report abuse | Reply
  12. 36yearsglutenfree

    Damage by gluten for celiacs like myself is cumulative. Why wouldn't damage for autistic children also not be cumulative. One small meal may not show the results, so this study seems inadequate to make the decision that gluten does not exascerbate autistic symptoms over time.

    May 24, 2010 at 10:16 | Report abuse | Reply
  13. Ron Hoggan

    Through an interesting choice of words you have managed to circumvent the peer review process and get this study to the public without the usual scrutiny.

    While Dr. Hyman may view her research methods to be stringent., others might disagree. Without attending the conference in question, there is no way for the rest of us to evaluate the study methods used.

    There are many sloppy studies that have been conducted to investigate gluten as a factor in a variety of psychiatric illnesses, but few of them are rigorous. Thus, without access to the specifics of this study, little can or should be said.

    Sincerely,
    Ron Hoggan, Ed. D.
    co-author Dangerous Grains ISBN: 1-58333-129-8

    May 24, 2010 at 14:53 | Report abuse | Reply
  14. Michael's mom

    We, too, tried a GF/CF diet with our son and did not see any results. Fortunately, Michael does not have any gastrointestinal problems as so many autistic children do. If nothing else, this diet seems to help those children with GI problems.

    I think the most important thing is to recognize is that our children are individuals and therapies and treatments that may work for some children may not work for others.

    Those parents with newly diagnosed children should be presented with these treatments/therapies to possibly improve their symptoms, but no one should be giving them false hope.

    May 24, 2010 at 22:53 | Report abuse | Reply
  15. Traci

    Dr.Rel where do you practice so I don't make the mistake of seeing you?
    Gf diets have helped many children of autism, ADHD, ADD as well as children who suffer migraines. There is no betyter proof than a parent with children who have taken the gluten out and have seen incredible results.
    You must be one of those Dr.'s who feel that if you take the gluten out, you can not write a prescrition for a drug you benefit from. get with the program and try to help your patients and not yourself.

    May 25, 2010 at 22:00 | Report abuse | Reply
  16. Kay from WA

    I love how so many people are complaining about the small sample size, yet so many people who harp on about the (never reproduced) "link" between autism and vaccines are willing to stake their lives on the study that "proved" that - 12 kids, poorly controlled, never reproduced and officially thrown out by peers. The only consistent conclusion I've seen is that desperate people believe anything.

    May 26, 2010 at 01:40 | Report abuse | Reply
  17. Andrea

    Reading just a few comments from unhappy parents in the posts I thought it was important to comment myself. I felt that the comments about small sample size are valid and I hope that researchers continue to explore these issues. I also think it would be interesting to study the kids who do demonstrate benefits on this diet. There was a strongly oppinionated post from a parent whose child does benefit from this diet and that parent seemed very upset by the article. I think, however, that the article is saying that kids without documented alergies or GI disorders do not benefit from the diet. We all know that kids with autism have high rates of alergies and GI disorders and they did not study those kids. It is possible that those kids may have significant, scientifically documented benefits from the diet. I thought the researchers' conclusion that this diet is not a cure-all for all autistic kids was well communicated. When we know more about who may and may not benefit from the diet, we can make better educated decisions.
    Just my interpretation...

    May 27, 2010 at 13:33 | Report abuse | Reply
  18. Lassie

    To the so called `intelligent' people who conducted this test, maybe next time you should actually do proper research prior to testing, because if your did, you would know that it takes, in some cases upto two years for the body to rid of gluten. Placing children on this diet for 4 weeks is not even close to enough time needed to test the true impact of this diet. To all parents out there who have seen improvements in their autistic children, do not be dishartened by studies like this. All medication or diets start off as not being `scientifically proven' until there is proper testing put in place to prove they work. It does not mean that they don't work. Keep up the hard work.

    May 29, 2010 at 06:23 | Report abuse | Reply
  19. Robert M Hession

    This study is a bunch of bull. 14 kids? Come on. I have twin boys both who suffer with Autism. We changed diets almost 5 years ago, and with in a month, I could see a vast the change in their behavior. For those of you who have never had to control your sons from hurting themselves, or spent countless hours helping them comunicate, and spending ever dime you have on therapy you to would be outraged at this study. 4 weeks in not enough time to make a conclusion about GFCF diets. I know what I have seen with my kids. This diet works.

    June 1, 2010 at 22:59 | Report abuse | Reply
  20. JR

    I teach children on the autism spectrum. What I know is that many of my students are misdiagnosed and are not autistic. When chilren are diagnosed at a young age, it is easy to misdiagnose. ADHD, Anxiety, depression, temper disregulation, autism- They all present in very similar ways and can confuse even the best diagnostician. Some parents push for the autism eligibility when assessment result are not clear because there are more government funded services. Sometimes children can have co-occuring conditions. I recommend a comprehensive re-evaluation at some point because having the right diagnosis help in giving the right treatment. I would think that when children with autism are included in research studies, the results can vary because of a misdiagnosis.

    Some may only have gluten and casein intolerances and present as having autism. Which may be why some children respond to the GFCF diet. My nephew had a know gluten intolerance but still was given wheat because it didn't make him break out in a rash like the other foods he was sensitive or allergic to. His behavior presented as Asperger's: tantrums, irritablility, anxiety, anger, rigidity, fixation on sameness. When he went GFCF his behavior improved dramatically. So I think he must not have been on the autism spectrum. Or maybe he is, and the diet helps. We need more research.

    June 3, 2010 at 20:54 | Report abuse | Reply
  21. JR (just edited)

    I teach children on the autism spectrum and what I know is that many of my students are misdiagnosed and are not autistic. When children are diagnosed at a young age, it is easy to misdiagnose. ADHD, anxiety, depression, temper disregulation, autism- they all present in very similar ways and can confuse even the best diagnostician. Some parents push for the autism eligibility when an assessment result is not clear because there are more government-funded services, although sometimes children can have co-occurring conditions. I recommend a comprehensive re-evaluation at some point because having the right diagnosis helps in giving the right treatment. I would think that when children with autism are included in research studies, the results can be misleading because of the diagnostic errors.
    This study did say that the 14 children were not gluten intolerant, so why would cutting out gluten help? Some children may only have gluten intolerance but present as having autism; which may be why some children respond to the GFCF diet. My nephew had a know gluten intolerance but still was given wheat because it didn't make him break out in a rash like the other foods he was sensitive or allergic to. His behavior presented as Asperger's: tantrums, irritability, anxiety, anger, rigidity, fixation on sameness. I believe this happened when the undigested gluten leaked into his nervous system. When he went gluten free his behavior improved dramatically. So I think he must not have been on the autism spectrum. Or maybe he is, and the diet helps. We need more research.

    June 3, 2010 at 22:18 | Report abuse | Reply
  22. Ana Dultra

    We learned that our son Daniel does way better on a gf/cf diet...sleeps well, has no diarrhea...if we change his diet, after couple days we have to go back to gf/cf. It may not apply for all children, but for our son it is necessary. Our life is a lot easier on the diet. That is all that matter for us!

    June 4, 2010 at 00:49 | Report abuse | Reply
  23. aidensmommy26

    What does it matter? If parents see a difference and we want to "waste" are money and time on preparing gf/cf foodslet us. What business is it of yours. I'm not digging around in your medical records seeing what you are doing to cure your ailments and then critizing them. Some things work for you and don't work for others. Same thing happens with prescription drugs, one allergy medicine works wonders for my mother but does nothing for my husband. We are all different. I agree that you need to treat the child as an individual My child eats according to his specific nutrient deficiencies. BOTTOM LINE: If you don't have an autistic child you don't get a say! END OF STORY!!!!!!

    June 13, 2010 at 17:25 | Report abuse | Reply
  24. Terry Barrett

    I am a grandmother of an Aspergers child, age 12. Reading parent's accounts of diets like the gf/cf seem to work for several of the kids if the diet is given about 6 months to work. It is asking a lot of families who have more than one child, however. Dr. Offit in "Autism's False Prophets" says that science primarily will find a cause and a cure eventually. Perhaps scientists will find a gene that causes it. I think science is a philosophy and what scientists say may or may not be true.

    June 16, 2010 at 21:40 | Report abuse | Reply
  25. Luke's mom

    My son got his PDD-NOS diagnosis at age 3 (2001). We cleared the shelves at the local library and read everything we could get our hands on, we looked at the Autism Research Institute's Better:Worse ratios (http://www.autism.com/fam_ratingsbehaviorasperger.asp) and decided to give the GF/CF diet a try. About the same time, our son lost the support of his 1 -to-1 aid at day care. His baseline ATEC scores at the beginning were in the high 80's. He was waking very 2 hours screaming; close to inconsolable. 2 weeks into the diet, it dawned on me there was another source of contamination. We in desperation had been getting through the previous year and a half of sleepless nights by nursing Luke back to sleep each time he woke screaming. I changed my diet and that night, Luke slept for 6 hours and so did I.

    The only change that day was me dropping all dairy and gluten from my diet. Our plan had been to try the diet for one month. After 2 nights with much needed sleep for both Luke and me, I said if sleep is all we get, this will be worth it.

    A month into the diet with no pre-school support, Luke's ATEC score had dropped into the mid 60's. The truly amazing moment came about 2 months in when Luke said to my husband, "Daddy, I love you." We realized our son, who could name every Thomas Train and quote paragraphs of dialog by rote, had not used any emotion words in nearly a year.

    The next month was amazing, Luke began to sing and hum. His ATEC scores dropped into the high 40's, we had him tested for yeast and another $1000 of tests according to the DAN protocols available at the time, his test results came back; infested with candida albicans and low on a bunch of amino acids. We added several rounds of doctor supervised anti-yeast protocols and Luke's ATEC scores dropped to their lowest point ever, a 35. We got the yeast under control (supervised by both his DAN doctor and the head of pediatrics at our son's regular HMO.)

    Labor Day weekend 2002, we took our son to Story Land in NH. As season pass holders we love this place because of how they support families like ours. I ordered a hot dog without a bun for Luke and the young man serving us gave Luke a hot dog recently pulled from a bun, the dog covered in crumbs. By the time my brain had processed, "white things" hot dogs don't have "white things", Luke had eaten 2 bites.

    4 year old kids don't know how to fake toe walking, they don't understand why and when they stim, and my son 20 minutes after consuming a couple of crumbs started toe walking for the first time. He burst into tears, his ears turned bright red (I have pictures) he told me his ears and skin felt wrong. He told me he was afraid to look at my face because he couldn't tell if I was happy with him or if I still loved him. and He lost all eye contact for 14 days. I kept copies of my posts to GFCFdiet yahoo group as I frantically asked other parents for help with this infraction.

    Well, fast forward to 2010, we're starting a gluten challenge during the week between school and summer school EYS. Luke's starting ATEC score baseline last night was a 38, the lowest it has been in years. He's still taking enzymes to break down gluten, dairy, and soy. So far, so good. At age 12, he's become a good advocate for his health. Luke has an Asperger's diagnosis, he's highly selective about what foods he will eat. We're slowly making progress widening the list of foods Luke will eat.

    He may always have some of the hallmarks of Asperger's. I would not say he's cured, no more than I could say one could be cured of having blue eyes or brown hair . Our family has definitely benefited from banning wheat flour from our home for 9 years.

    I have ATEC results, diary entries, on-line support group posts, school progress reports, school incident reports following gluten infractions, and enough proof, that I would say to any parent considering the diet, "Give it a very serious try." It takes most of the parents I know about 2-5 months to really know how to read ingredient labels, questions manufactures, and successfully avoid hidden contaminates.

    One mom who was "doing the diet" with her son for 4 months (and couldn't see any effect), brought cookies to a party at our house where the first ingredient was spelt; a variety of wheat. She's a university trained chemist, but she didn't think spelt had gluten. Doing the diet right is initially hard (join a support group.)

    To the critics of the study I say, "Hang in there."
    First they ignore you, then they laugh at you, then they fight you, then you win. – Mahatma Gandhi

    Not every intervention works for every kiddo on the spectrum.

    June 24, 2010 at 00:27 | Report abuse | Reply
    • sara

      After reading this report, and then the numerous comments, I came across yours found it quite interesting and appreciate how you were able to share some of your personal experiences and struggles with this diet. I am also in NH amd am a graduate student studying special education at franklin pierce university and am also a mother of a young child with special needs. I am writing a research paper on this diet and if you were willing I would love to ask you a few more questions to have a first hand parents perspective in my study. This could be done via email or over the phone if you are willing. I am truly interested in this diet, it's potential, and the stories of families whom have tried it. I can be reached at Sara_178@yahoo.com

      June 24, 2012 at 18:48 | Report abuse |
  26. Laura Lewis

    Responding to Someone

    YOU ARE AN IDIOT! What are you basing your knowledge on? How the heck do you know what causes autism? I can assure you that is not bad parenting. Get yourself an education and learn about things that obviously you know nothing about.

    June 29, 2010 at 10:59 | Report abuse | Reply
  27. Tracee

    Sorry to burst the media's bubble, but my child came out of autism three weeks into the Specific Carbohydrate Diet, a gluten-free, lactose-free whole foods diet. Our pediatrician dumped us when we asked for a gi referral for Celiac testing. (His IgG food allergy panel had shown antibodies to gluten, among several other things). Eight months of begging and getting nowhere, I finally took him to a gi on my own. He had been gluten free too long for the bloodwork to reveal anything. The gi told me these issues can be genetic, so I made an appointment for myslef. Turns out my "mysterious" autoimmune issues I had all my life were due to undiagnosed Celiacs and Crohn's disease. Many Crohn's patients have a genetic IgG allergy to Bakers Yeast, the earlier the exposure the higher the likelyhood to come down with Crohn's. Oh, yeah, Bakers yeast is in the Hep B shots given at birth and babies borrow their mothers IgG antibodies at birth. But ya'll will do everything in your power to cover this up.

    July 11, 2010 at 14:41 | Report abuse | Reply
  28. Tiffany

    As a trained researcher and mother of a son with autism, 14 kids for 4 weeks does not provide "sound scientific evidence" when there are thousands of success stories out there that she could have followed up on and documented. Many of us would be happy to have our children participate in a study because we know how much of a difference diet can make!

    July 18, 2010 at 08:21 | Report abuse | Reply
  29. Joel's Mom

    Why do we need a study to confirm or condemn gfcf? If you are the parent of an autistic child, you'll try anything to fix it, right? And changing a child's diet is a lot less drastic than some of the stuff people have tried. Give it six months – if it works, you've just improved the remaining 80 or so years of your child's life a million fold.

    Here's the thing: Nobody knows what causes Autism. Nobody can say that the same thing causes it for every child. It's just a group of symptoms. So, if it works for one child and not another, then those two kids didn't have the same cause. If your autistic child has tummy problems, especially constant runny stools, then my opinion is that you should feel absolutely compelled to give it a try.

    I can say this for sure: It worked for Joel. It worked like crazy. Joel had cancer when he was 2, and one of his treatments was a year of chemo. This was hard on his digestive tract, and resulted in a condition commonly referred to as "leaky gut" (which isn't just for cancer patients), meaning his gut walls are thin and allow nutrients to be absorbed into the blood before they are fully broken down into nature's intended form. With gluten, this partially broken down compound is an opiate. He started staring at ceiling fans. He didn't start talking. He lived in his own dreamy world. He was high! But we didn't know that – we thought he was autistic. Then we saw Jenny McCarthy on a talk show (who, by the way, could be working a lot more as an actress if her goal was to be rich). Her story was compelling, so we did some research. Our research brought in the tummy trouble component, and Joel had constant diarrhea. So we tried it. Within a month, Joel was a different child – he joined us in the real world. We've since found that his problem is only with gluten – he does fin with dairy (which makes things easier). Now he's a normal second grader – he was never really autistic: he just had a digestive condition that caused gluten to make him high. High 3 year olds do look autistic.

    Anyway, I think that since we don't know what causes autism, we should not discourage anyone from trying different things (as long as they are safe).

    September 8, 2010 at 19:54 | Report abuse | Reply
  30. Sabrina

    As so many have said already. This study was hardly "stringent" as described in the article. 4 weeks? only 14 kids?

    Secondly, has it occurred to anyone else that maybe their are several issues going on with these kiddos and while some may not be affected by food sensitivities others are. It seems silly to me to only test those without GI troubles when so many autistic children suffer from GI troubles. How about a study that shows how many children with autism are also affected by GI issues such as celiac and then look at how a GF/CF diet does in fact produce a change in behavior and a decrease of symptoms relating to autism. Imagine if our increase in autism diagnosis was not an increase in autism but an increase in food sensitivities that mimicked the symptoms of autism.

    I am a mom of a child with autism who has also been diagnosed with Celiac. I have seen a substantial change in his behavior since going GF/CF. I have also seen an amazing improvement in the GI issues. He however still exhibits symptoms of autism and I will continue to do everything in my power to help him get better. In my humble opinion that is not a negative quality, how would we ever get anywhere if people just sat back and did nothing to improve of ourselves or our children. Shame on you for suggesting that we as parents should just sit back and trust the professionals. My son was not diagnosed with celiac until age 3.5. He saw 3 specialists and two pediatricians for his chronic constipation, which I was told could not possibly be celiac. I chose to try changing his diet and saw results with the elimination of gluten and dairy. My son was on a daily regimen of stool softeners and enemas for 3.5 years and now does not need either.

    October 18, 2010 at 17:48 | Report abuse | Reply
  31. Thu

    This study needs bigger samples, longer control time than 4 weeks. I had worked with children with autistic and I saw big improment when my clients were on gluten free diet. I was actually able to engage them in therapy session. They were much calmer, more affectionate toward caregivers and less aggression. Parents with autistic children please do not alarm by this study. Pay attention and go with what works best for your child.

    November 5, 2010 at 15:14 | Report abuse | Reply
  32. GFCFmommy

    My son's life was saved by this diet. I have no clue as to weather or not he has Celiacs on top of Autism. I would never take him off it long enough to find out, And to be perfectly honest I don't care. My son hugs me, talks to me, laughs and plays with his friends now. He had so many gi problems that I was at a loss. I am now going after an advanced degree in nutrition. Partly to keep him healthy threw out life and partly to use the skills I've learned to help others like him. Autism or Celiacs I don't care. We do what works.

    January 15, 2011 at 03:47 | Report abuse | Reply
    • Jo

      I take the word of parents who have seen the success of a gf/cf diet over 'the professionals' (< – – – rollseyes) any day of the week. So glad your son has benefited from this diet. Best of luck to you both!

      January 17, 2011 at 23:09 | Report abuse |
  33. Jo

    I took my high-functioning son off of gluten and casein for four years and saw improvements in his behavior. 14 kids is a small number, imo. Also, it said they looked at behavior before and after the snack. Did they check the behavior 24-36 hours later, when the food had entered the lower gut? It was frequently the next day when we saw the out of control behavior with my son. He was off of gluten from ages 7 1/2 – 11 1/2 but now eats both gluten and casein without any negative side effects. Also, puberty was a Godsend for him behavior-wise. The first 13 years or so were hell. He's now 17 1/2 and the past four years or so have been unbelievably wonderful.

    January 17, 2011 at 23:06 | Report abuse | Reply
  34. DJ K

    The Autism community is rife with charlatans, scams and bad information. The GF/CF diet only helps with the symptoms of a gluten or casein allergy/intolerance. Children with Autism acting out because they suffer from a Gluten or Casein intolerance is just that and as nothing to do with Autism. If there is no gluten or casein intolerance the diet won’t do anything.

    January 28, 2011 at 19:34 | Report abuse | Reply
  35. karen franklin

    My grandson is 7 yrs ,HE IS ON THE SPECTRUM, HE HAS BEEN ON THE WHEAT FREE/GLUTEN FREE DIET FOR 3 MO. tHE ONLY CHANGE i SEE IN HIM IS THAT HE IS MORE FRUSTRATED, I wonder if this is going on with anyone else.

    August 13, 2011 at 17:25 | Report abuse | Reply
  36. Jenay

    Please stop printing results of poor small studies.Why are you not using a large sample of autistic children who are allergic to wheat?My autistic son clearly is,there is nothing weird about trying a wheat free diet(except he appears addicted to it!) they are all healthy options.
    The Metagenics conference I went to yesterday clearly demonstrated "evidence of neuroinflammation"in artistic brain imaging and "inflammatory cytokines up to 11 times higher in autistic brains" etc etc.There is good evidence that there is Mycroglial inflammation.I understand the Medical Profession being overworked and therefore disbelieving but please have the scientific grace to collaborate with other Professions eg Naturopaths who are more learned than you are re Wellness and who have the research to back themselves.It is criminal for our children for the Medical Profession to be so disinterested in Autism and what can actually be done to improve their lives/perhaps not curative but huge changes in behaviour can be made for many

    November 6, 2011 at 21:09 | Report abuse | Reply
  37. Jenay

    Besides perhaps gluten and Casein free(check with a Naturopath)many other factors need looking at....Heavy metals,oxidative stress,vit D deficiency,candida overgrowth,excitatory amino acids,low EFAS,food allergies,LPS,systemic inflammation.
    I am from a Conservative Nursing Background but after working with a Naturopath & Physiotherapist ,I see who has the superior knowledge and Research.Find a Naturopath (perhaps Metagenics Autistic trained) they are the real deal and they put my profession and the Medical Profession to shame when it comes to Autism knowledge abd treatment strategies

    November 6, 2011 at 21:21 | Report abuse | Reply
  38. Maria

    Readers must understand that the study in question is flawed not because of the small number of children involved or the lack of a control group but because it was not long enough (four weeks, when it is recommended three months to a year before making an assessment) and also because only a few cereals were eliminated (those of the Triticeae tribe). It does not tell us if the parents were educated on the 13 cereals that contain gluten nor if they could identify spelt and kamut as wheat nor if they excluded triticale. Where the children well supervised? Teachers, therapist and family members often offer gluten treats because either they ignore the importance of the total elimination or because they disagree with the diet. There are other flours that are more nutritious than cereals’; if parents were well coached the children would not miss their cereals and would have been much better nourished.

    It is very easy not to find when we do not look at the right place. That is the problem of this study: it was set-up to prove that there is no problem with gluten and they designed it to prove their point. One most ask who financed the study…

    50% of autistic children and 50% of celiac sufferers improve symptoms by following the elimination of the five cereals of the Triticeae tribe. Most of of celiac that do improve with the “gluten-free” diet do not recover completely their intestinal villi. In other words, this diet does half the job. Eliminating ALL 13 cereals, does the job.

    Ignorance and greed is what is keeping this population from recovery/improvement.

    November 18, 2011 at 18:19 | Report abuse | Reply
  39. Carla

    Removing gluten and dairy MAKES A DIFFERENCE. I have witnessed it with my child. Someone PLEASE do a REAL scientific study of this. We don't know what is causing autism? Really? I'm not a scientent but I can tell you what is causing it. US. The toxins in our air, food, water, etc. is causing it. WE have brought this upon our children. And still we do nothing to stop the widespread contaminating. When will we all wake up????

    April 3, 2012 at 13:08 | Report abuse | Reply
  40. Josefa

    Gluten-free/casein-fee diet helped improve my son's behavior alot. I see him developing and he's a happy child. The state of California does not want to recognize the fact the a gluten-free/casein-free diet is a form of treatment for autism spectrum/aspergers, ADHD, and ADD. Other parts of the States approved that the gluten free/caseing-free diet is a form of treating autism. It is scientifically proven by other parts of the states. A child who is on medication due to a condition is one of the worst things of their life that they go through. As they develop while taking meds they could develop bipolar, ticks, depression, etc. Their is a DVD called the medicatied child (2004). The diet is one of the safest and natural way to treat it.

    April 7, 2012 at 16:26 | Report abuse | Reply
  41. Josefa

    Any ways, children with autism, ADHD, ADD can not process gluten from their bodies and slows down their brain function. It's called a food intolerance. Their is a difference between a food intolerance and a food allergy. It helps to do the reasearch in order to better understand it.

    April 7, 2012 at 16:39 | Report abuse | Reply
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  44. LG

    This study was designed to test whether taking gluten and casein away from diet would improve autistic symptoms – just autistic symptoms, not food allergies/sensitivities/intolerances, so they HAD to use kids with none of those issues. If they didn't, they couldn't test their hypothesis. That's how science works.

    The study was not designed to test whether gluten and/or casein sensitivities are causally associated with autism. For a study like that, what would have to happen is that children, probably from infancy, would be fed either a normal diet or a casein/gluten free diet and then see how many would be diagnosed with autism by the age of let's say 3 (most kids are diagnosed by an ASD by then I think). If a greater percentage of children on a normal diet were diagnosed with an ASD, with statistical significance (fancy calculations, not instincts or anecdotal reports), and controlled for other variables that are known to be associated with an increased risk of ASD (eg, sibling/parent with ASD), then perhaps researchers can conclude that there is an association (not causation). To show causation would probably be impossible in humans (too many variables to control), but perhaps there are animal models of autism – animals that will develop autism if they are fed a normal diet (I don't know if there are such animals, just giving an example). If those animals then are fed the GFCF diet and do not develop autism, then you have evidence of causation. That is the way science/medicine has worked to develop most if not all of the advances we know and use today. Otherwise, it's like people going around telling 'baba maises' (grandma stories – in Yiddish).

    June 14, 2012 at 21:18 | Report abuse | Reply
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  47. dud

    I happen to disagree slightly with your opinion about the gfcf diet. There is no cure for autism, but so many parents of autistic children who were put on the diet report major improvement in speech, eye-contact, and socialization. Many autistic kids have severe gastrointestinal distress, and are desperate for medical attention, often meaning dietary restrictions. The gut and brain collaborate and depend on each other tremendously. If one is malfunctioning, the other will suffer.

    July 26, 2012 at 23:32 | Report abuse | Reply
  48. CO

    Perhaps the problem is that too many children are diagnosed as having autism, when in fact, they don't have autism. Perhaps it really is a sensitivity to chemicals in what the child is eating that makes them have the symptoms that mimic autism.

    January 8, 2013 at 13:33 | Report abuse | Reply
  49. zaidaq

    don't make such a poor blanket statement. gluten free casein free soy free banana free apple free diet saved my childs life. she progressed so much in the absence of those foods in a few days. that means no gluten free lotions or shampoos. probably didn't cut everything out and now take away hope for those looking for help. shame on you

    March 6, 2013 at 20:56 | Report abuse | Reply
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