Topic: The Truth About the Gluten-Free, | Autism PDD
There have been alot of great threads on this message board about the diets. Check those out!
SpectrumMom...my son never had allergy testing. He presented with allergic symtpoms later than the norm....around 18 motnhs. My ped had me clear his enviorment one step at a time. We gave our cats away, changed our cleaning products, air purifier. Saw a minor change when took away milk. Then much later....after careful consideration we instituted the GFCF and were stunned with the results.
As to the gut/autism connection, Fred posted a great article from Discover magazine back when I was still lurking.
http://discovermagazine.com/2007/apr/autism-it2019s-not-just -in-the-head
Interestingly enough, many children DXed with autism don't present with gut issues. Which is one of those things that keep gnawing at my mind, and I am unsure why.
I tried GF/CF for a week while the girl's mother was away on a trip and I thought I noticed a mild positive effect, but everyone assured me that I was imagining it, and I'm pretty sure that it was placebo, in my case. I would have continued with the diet, however, because it was just plain healthy (meats, veggies, fruits, beans, rice - good stuff! not nearly as difficult as I had imagined).
[QUOTE]
You must do the diet consistently for 6 months to a YEAR in some cases to see results. Many people think, "I don't see any difference" after a month or so and stop, but it takes gluten a long time to get out of the system.
[/QUOTE]
Well, maybe, but after six months to a year, you'd expect to see results regardless of intervention (due to maturity), so I'm not sure how you'd attribute positive developments to the diet after that length of time.
I guess you could breakfast at Waffle House and see if there's a regression.
Exactly. This is an excellent observation. I struggled with the same one after a year on the diet. Did anyone see what was on Wickipedia about it? Very interesting stuff IMO!
"There is plenty of anecdotal evidence to support biomedical intervention - most parents who try one or several therapies report some progress, and there are many anecdotal stories of children who have undergone these programs and become seemingly completely neurotypical, able to return to mainstream education, and/or made dramatic improvements in health and well-being. However, this evidence may be confounded by the dramatic improvements often seen in autistic children as they grow up, with or without such interventions."
That being said, I did notice decreased stimming with the diet, as I have mentioned before. And I do think that I will try to incoorperate more wheat-free foods and organic foods rather than processed foods, dyes, ect. It is just so hard to say about the diet.I just finished an intense 7 week feeding program for both of my Autistic boys and low and behold at the begining of the program they were tested for food allergies and they both have egg allergies, heres the catch, my 4yr old also has a milk allergy so throughout the program he had not dairy (still doesnt) and his bms are better, his speech and comunication has improved, I know it sounds cliche but I wonder if this is all related somehow, He eats gluetin,egg, and dairy free foods, no milk other than soy, so maybe there is something to all of this diet stuff. I had read about this a couple of years ago and thought about trying it but at the time he had such a limited diet I felt like I couldnt deprive him of what he was eating.[QUOTE=YepperBepper]
Interestingly enough, many children DXed with autism don't present with gut issues. Which is one of those things that keep gnawing at my mind, and I am unsure why.
[/QUOTE]
That's an easy one - there are many autisms with many causes. If there was only a true medical test of autism. For instance ASD kids MRI's are different than NT's. Will a diet cure this? I doubt it, but it may help relieve the doping affect some kids have from eating gluten, which might present itself as autism. Many of the studies that will answer these questions are under way, but will be too late for us. For instance they are doing MRI's on a group of young ASD kids, giving some ABA and the others ?(not sure who volunteers for the no services or limitted services part of the test). After some time they will repeat the MRI's and try to see if different methods actually rewire the brain. Now that is a study that will have a firm result. I think things like the diet that are relatively easy and unobtrusive should be tried. But as Fred said separating improvement due to maturity/getting help is very hard. I know my son had to be eating gluten and dairy to qualify for the study. He was watched for 6 months before we started the diet (diet, stools and school performance were all logged). During the month before the diet started, he had unprecedented improvement, a real night and day thing. My wife and I always say "can you imagine if the diet started a month earlier? we would still be on it". The diet went on for 6 months (not including phase in or phase out).
I in no way mean to say the diet doesn't help some kids, it just didn't help mine. As I said I think it's worth a try. That said, I think there are a lot of kids eating the diet for no reason, but there are worse things. I have been at meetings where about half of the parents who had kids on the diet said they weren't sure if it was helping. The diet does make the kid "not normal" in one more way. I know we had to keep my son home the day his class went to pizza hut, couldn't share at snack time...
hat on earth are gluten and casein? Can removing them from my child's diet really improve the symptoms of autism and Pervasive Developmental Disorder (PDD)?Gluten and casein are getting a lot of
attention in the autism community and from doctors in the "Defeat Autism Now!"
biomedical movement. Some parents, doctors and researchers say that children have shown
mild to dramatic improvements in speech and/or behavior after these substances were
removed from their diet. Some also report that their children have experienced fewer bouts
of diarrhea and loose stools since starting a gluten-free, casein-free (GFCF)
diet. Author Donna Williams
Gluten and gluten-like proteins are found in wheat and other grains, including oats, rye, barley, bulgar, durum, kamut and spelt, and foods made from those grains. They are also found in food starches, semolina, couscous, malt, some vinegars, soy sauce, flavorings, artificial colors and hydrolyzed vegetable proteins.
Casein is a protein found in milk and products containing milk, such as cheese, butter, yogurt, ice cream, whey and even some brands of margarine. It also may be added to non-milk products such as soy cheese and hot dogs in the form of caseinate.
The theory is that some people with autism and PDD cannot properly digest gluten and casein, which form substances that act like opiates in their bodies. This "drug" substance alters the person's behavior, perceptions, and responses to his environment, according to this theory. Research in the U.S. and Europe has found substances with opiate activity in the urine of a significant number of children with autism. A doctor can order a urinary peptide test that can tell if proteins are not being digested properly.
There is growing interest in the link between autism and gastrointestinal (GI) ailments. A study by the University of California Davis Health System found that children with autism born in the 1990s were more likely to have gastrointestinal problems, including constipation, diarrhea and vomiting, than autistic children who were born in the early 1980s. Some people use the GFCF diet mostly to treat gastrointestinal problems.
Studies are currently underway to examine the effectiveness of the GFCF diet, which has not gained widespread acceptance in the U.S. medical community. One recent study found behavioral improvements in children on a GFCF diet, while another study found no significant effects from the diet.
Allen Lewis M.D. wrote in the Autism Society of America publication, Advocate, "Controlled studies of the GFCF diet and the ketogenic diet have indicated improvement. A dietary trial is safe and the best way to determine if dietary restrictions are of benefit."
Medical tests can determine if your child has a sensitivity or an allergy to gluten, casein and other foods. Any pediatrician or a physician from the DAN! (Defeat Autism Now!) list can order these tests before you begin the diet.
Before you consider a change in your child's diet, consult with a physician and nutritionist to make sure you are providing an adequate diet and nutritional supplements, if necessary. Also, please read any of the books and web sites about the diet (listed below).
Some advocates of dietary intervention suggest removing one food from the diet at a time, so you will know which food was causing a problem. It also is helpful to ask people who do not know about the dietary change if they see any improvement after a few weeks.
It's often suggested to remove milk first because the body will clear itself of milk/casein the quickest. Gluten may be removed a month after the elimination of milk. It may take up to six months on a gluten-free diet for the body to rid itself of all gluten. That is why most advocates suggest giving the diet a trial of six months.
The diet can seem like a lot of work, at first. You must carefully read the ingredients on food packages. Beware of "hidden" casein and gluten in ingredient lists, such as curds, caseinate, lactose, bran, spices or certain types of vinegar. It may be hard to locate a substitute for the milk your child loves, although many children do adapt to the gluten-free, casein-free (GFCF) soy, potato, almond and rice milk substitutes available. (Companies listed below). Many of these substitutes are enriched with calcium and Vitamin D. In addition, many parents provide vitamin and calcium supplements to their children on the diet.
Many communities have health food stores or regular supermarkets that stock flour, bread, crackers, cookies, pretzels, waffles and pasta made of rice, potato or other gluten-free flours. There also are several online and mail-order businesses that sell GFCF foods and vitamins. Also, some web sites list commercially-available foods that are gluten-free and casein-free, such as Heinz ketchup, Bush's Baked Beans and Ore-Ida Golden Fries. Some prepared foods originally developed for people with Celiac Disease, another form of gluten intolerance, now come in casein-free varieties, too. For fun or to save money, some families choose to make their own GFCF foods using some of the cookbooks below.
Foods that CAN be eaten on a gluten-free, casein-free diet include rice, quinoa, amaranth, potato, buckwheat flour, soy, corn, fruits, vegetables, beans, tapioca, meat, poultry, fish, shellfish, teff, nuts, eggs, and sorghum, among others.
Author
Karyn Seroussi
Besides gluten and casein, some parents report that removing corn or soy led to equal or greater improvements in their children. Because soy protein is similar to gluten and casein, some diet proponents recommend removing it if the child seems sensitive.
Research into the GFCF diet continues. "Although the hypothesis may appear 'off the wall' in many respects, there are a number of pieces of evidence, which seem to support them. The ideas are compatible with virtually all the accepted biological data on autism and are therefore worthy of consideration. The dietary method must still be considered as experimental and no positive results can be promised or are claimed for every person," according to Paul Shattock and Dr. Paul Whiteley of the British Autism Research Unit at the University of Sunderland, which provides scientific information on the diet.
I did the GFCF diet for a year with no regrets..we would do it again:) It doesnt hurt your child to try it and I found it wasnt that hard to do at all. She had better awareness, bowels, and eye contact~enough to keep us honest on it..we did ABA too but the diet brought these things very quickly and ABA brought about changes slow and steady. We werent in the group that had dramatic results but happy with what it did for Sarah. We did supplements too and other biomedical things to help her brain:she had delayed myelin so she got fish oil too. Thanks for the report..straightforward..I like that:)i haven't posted for a long time, but as we intend to start gfcf diet i wanna ask you Shelley, is your girl still on diet or you stopped it and why you stopped?
my boy is 4.2 now, too much hyperlexic, and always asking questions which are already answered x times.
we did some urine tests in Paris and they showed this (last number is reference):
gluten derived opioid peptides
Gluten morphine A4 1,6 <1 moderately increased value
Gluten morphine A5 3,0 <1 moderately increased value
Gluten morphine C 1,8 <1 slightly increased value
Casein derived opioid peptides
Casomorphine 1-4 NH2 1,3 <1 moderately increased value
Casomorphine 1-8 6,9 <0,5 increased value
and Mercury is almost twice higher then reference.
You must do the diet consistently for 6 months to a YEAR in some cases to see results. Many people think, "I don't see any difference" after a month or so and stop, but it takes gluten a long time to get out of the system. I think the medical field will have trouble with this one. We were part of a study on the GFCF diet. The university only does a couple kids at a time. Data collection is painfully slow. My guess is that something like a third of ASD kids will benefit from the diet. Making a conclusion about a diet that helps only a subset of kids will take decades. I would agree with the above posters and article, that it's worth a try. My kid eats good and the diet was pretty easy to follow. He showed no improvements thru out the double blind test. Challenges are a great way to keep yourself honest, once you are rolling on the diet, slip him something with one or the other (not both) and ask his service providers how they did that day. Our challenges were double blind, meaning no one but the chef who cooks the treat knows if it has G, C or nothing. He was observed the day before, day of and day after. At the end of our study the researchers still didn't know the challenges b/c the study was still ongoing (with other kids), but b/c he did not react to any challenge or when we reintroduced dairy then gluten, we could deduce that the diet had no effect on him. IMO this is another misguided study. they use any ASD kid who does not have Celiacs disease. I would think a study starting with ASD kids who have significant gut issues would yield better results. My only problem with any of these dietary interventions is that many parents are led to believe that the interventions, in and of themselves, can "cure" autism. No such thing! Of course, if a child is allergic to anything, that can cause discomfort and poor behavior due to always feeling bad. And good nutrition is key for ALL kids. However, as Shelley pointed out, the progress that a child makes is based on educational interventions. So if a special diet is making parents neglect getting early and intense intervention, that diet is actually hurting the child by preventing the child from getting what we KNOW (through research) works. Special diets are easier nowadays since food companies have come to realize there is money in providing special foods. The only thing parents lose by giving these diets is money. Just as long as a balanced diet is followed and care is given to getting the child enough calcium, protein and carbs. Lots of people survive on gfcf diets. Some kids who have digestive difficulties improve on these diets. However, lots of people try them even if their kids don't have any plumbing problems at all. I have yet to personally know a single person whose child improved on these diets. The longest I personally know someone trying them is two years. Once she put her child back on a normal diet, she saw no changes either. Experiment with your own child and see if there are longterm improvements. If not, gfcf is not worth the $$$ and effort. However, if your child shows any improvement, continue it. It can't hurt. Both my children are on a casein and gluten free diet. We cant stop it now as they become so hyper if they eat the "wrong " food it's scarey. Also my daughter has terible diarrhoea that is relieved by a gfcf diet. My son can now express himself and if he accidentally has a milk product he tells me he can't keep still and gets quite distressed. All I know is that it makes life a lot easier for my kds and I could never take them off the diet. Liz
Copyright Autism-PDD.net