Dairy/Casein/Gluten free diets and affecting speech
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Has anyone heard of this? I'm reading a book that describes a dairy/casein/gluten free diet in helping those kids with autism and other disorders. (One of them being speech development and behavior problems with ADD, etc.)
I'm going to try this with Connor and see if he has a brain allergy to these things. Any exposure to this type of diet?
My neighbor's son is autistic and they insisted this diet did wonders for him! We have since moved so I don't know if they still follow it. He was also getting a lot of OT and speech so there was obvious improvement (even to me).
Feingold Diet
Diet never affected Robin. We tried eliminating lots of what many consider "triggers" and nothing changed at all. I will say the only thing diet wise that did affect him was a soda called Surge and it was actually a good change! (most meds for ADHD are stimulants, caffine is a stimulant and this soda has lots of caffine in it) Some people swear by the Feingold Diet. My son's doc said unless you live in the middle of nowhere and raise all your own food, it's almost impossible to follow. Good luck with whatever you try.
My DD had articulation delays. She is small for her age and not a particularly good eater. I wouldn't dream of cutting dairy from her diet because it is one of the only sources of protein and calcium for her. Three years of speech therapy remedied her speech.
Yes, I believe this diet can help some kids, but only those who have an allergy or intolerance to dairy/casein/gluten.
If he does have gluten or casein intolerance, it can definitely help. If he doesn't, it will make no difference at all.
Unfortunately, it is VERY difficult to follow a true GFCF diet, but if it's what's best for your child, it's worth the effort. Also unfortunate, it takes SIX MONTHS of no gluten at all to rid the body of its effects, and that's a long time to try a very difficult diet without even knowing if your child needs it or not.
The good news is, removing casein only takes two weeks to start seeing results, and it's a lot easier to be casein-free than gluten-free.
The recommendation we give to parents interested in trying this is to completely remove all dairy products from the child's diet, INCLUDING SOY, because the difficulty a child with lactose intolerance has in breaking down those proteins almost always has the SAME problem breaking down the proteins in soy, so sometimes the reason people try this diet and it makes no difference is because they've replaced dairy products with soy products. Anyhow, do this for three weeks, and see if there is any noticeable change in your child's behavior or skills. If there is, then you're probably onto something. If not, no loss, you've had some inconvenience for three weeks but that's not a huge deal.
Be careful and read labels during this three-week trial because milk products are in a lot of things. Look through ingredients of everything you feed Connor to be sure there's no milk or cheese at all in it.
For a milk substitute, rice milk, almond milk, and goat milk are all good alternatives that these kids can digest properly, and all are usually available in either health food stores, or in the health food section of major grocery stores. Super Wal-Marts tend to be not so great in this department, but they do usually carry Rice Dream (usually on a shelf with "diet foods" such as health food bars and shakes), and the fortified versions have the same amount of calcium and Vitamin D as regular milk. You can usually find cheese and ice creams labeled lactose-free too, but check to make sure they aren't soy-based. Rice Dream makes ice cream too, and it's rice-based so it's fine for GFCF diets.
If you do see significant results in three weeks by removing dairy, then you may want to consider trying the gluten-free aspect too for six months to see if this makes an additional difference, because often children with intolerance to one are also intolerant to the other...
If you decide to try this, good luck!! If he absolutely CRAVES milk and/or carbs, that's a sign that he may have this intolerance. The body can't break down the proteins properly and they form a chain of fatty acids that almost functions as a narcotic to the child, which is why although it's harmful to their development, they crave more and more, it is very much like an addiction.
WOW! Thanks everyone! Zoie, what you said was very insightful. I'll give it a try. He doesn't crave milk, but he certainly will drink it over water any day.
I might give it a try though.
Although...today, we were reading and he said "What's this?" and I said "Umbrella" and he said "Wain" (Rain) meaning he knew what it's used for! I was shocked. We don't even HAVE an umbrella!
Funny you should mention this. I was just reading about gluten problems and symptoms regarding DD.
Heidi, that is what is so fun about them learning to talk. They come up with words and you had no idea they had made the association, like between an umbrella and rain! I always remember looking at my kids and saying, "What?"
I would consult a pediatrician and maybe a dietician before using a dairy free diet on a youngster. I have read articles of children suffering from malnutrition because their parents were giving them rice milk as a substitute for dairy.
Has Connor been diagnosed with something? I know you were going to have an evaluation done sometime soon.
I have no knowledge of this kind of diet, but I agree with Ginny in that if you're going to cut out dairy, to consult a doc first. Good luck with whatever you decide!
I know what you mean about the words....Natalie has said some things that we're like "Where in the world did she get that one??" 
Heidi, we tried this diet when Seth was first diagnosed and it is EXTREMELY tough to follow. Unless you really firmly believe that it would help, I'd try some other more mainstream treatments since he has limited his diet so much already. We went completely CF/GF for almost 9 months as a whole family since the littlest crumb from any of us could have skewed the results and it was a miserable time for all of us to eat. DH and I ended up eating out or seperately most of the time because we just couldn't handle not eating most of our regular foods and we didn't notice any difference in any of his behaviors (except that they got worse because he was so hungry and irritable all the time). If you have a Trader Joe's or a large health food store nearby, I'd get to know the employees very well. You'll be seeing a lot of them!
Heidi, I personally would NOT recommend this. First of all, there is no such thing as a "brain allergy." That is a term coined by alternative medicine folks and it has no scientific basis. Ditto the Feingold diet. There is bo scientific, controlled research that indicates that the Feingold has any positive effects--only anecdotal evidence by parents, therapists, and doctors who are desperate for a positive outcome and/or have financial interest in a positive outcome. Furthermore, since my youngest son has severe reflux triggered by a milk protein (casein) allergy, we went the whole route of allergy testing and casein avoiding diet. The pediatric gastroenterologist (and a very well-respected one at that who writes the board certification exam) strongly told us that while we should decrease the casein intake, we could NOT go completely dairy-free because it can cause permanent damage to the growth plates of the bones during these critical childhood growth times.
Connor hasn't been diagnosed with autism, plus there are a lot of "therapies" out there that prey on concerned parents but have no unbiased scientific support, such as FastForward, Metronome Therapy, Auditory Integration Training, etc. These are all expensive things that "sound" good and do have research study support, but it is all funded by the companies who publish these therapies, so therefore very biased and not controlled.
I would just get him some good traditional language therapy and go from there. It's hard to be a good consumer when you are worried, but very important.
And yes...it's great about the umbrella-rain connection!!
Thanks, Pam. Yeah, I'm just reading into it and asking questions at this time.
My aunt is a developmental pediatrician and read the book "Unraveling the Mystery of Autism and Pervasive Developmental Disorder : A Mother's Story of Research & Recovery" by Seroussi and just recommended I read it if I'm still having trouble with his speech.
Is there a reason why there aren't any scientific studies that are conclusive? Wouldn't it be hard to do a double-blind test using children? I think that's why there aren't any scientific tests for it.
And, good thing to know about dairy. I'm going to continue with the whole milk until I feel otherwise. It does look like a difficult diet to follow.
An OT visits us tomorrow morning, so we'll see how that goes. Speech therapy starts next week.
Lack of behavioral effects from Feingold diet violations
\newurl(http://pediatrics.aappublications.org/cgi/content/abstract/62/6/975,A double blind challenge experiment)
A critical review and controlled study
10,14;journal,19,168;linkingpublicationresults,1:104757,1,Risk of nutritional deficiencies
Heidi, here are some links to a few scholarly journals on the subject. In my research for my Ph.D., I frequently use Google Scholar to locate high caliber, peer-reviewed journals, in addition to sources like Medline and my university's data bases and search engines. I would suggest looking there before accepting any ideas from books you can buy at Amazon, if you KWIM.
There are a few double-blind studies that I did cite. Most of the articles on the Feingold diet are from the 80s---not really recent. The casein/gluten-free diet articles are much more recent. I found no articles in support of either diet, many showing no effect, and a few inconclusive (and some with negative nutritional effects). The key here isn't in being double-blind per se, but ruling out confounding variables and having a good control group. For example, let's say you have a double-blind study AND a good control group, BUT the kids in the experimental groups are still attending school, involved in social activities (church groups, playgroups, T-ball, karate, scouts, etc.), and/or receiving some type of therapy. If this is the case, then how can we conclusively say that the DIET caused the improvement and not the school, therapy, activities, or even just plain old maturity?? We can't! But what parent of a autistic (in these cases) child is willing to pull their child out of school/therapy/social activities for the sake of science? Not many. Therein lies the problem.
Don't know why some of my links didn't work...but you get the idea.
One of the reasons I trusted that the CF/GF diet wasn't working was that Seth wasn't able to get any therapy services during that time and he wasn't in school or any other social activities at that time. We'd tried an intensive vitamin regimen for 6 months before that and also saw no change but I took him off that so that it wouldn't skew our ideas of how the diet was affecting his language and behaviors. We also didn't tell any of our family members so that we could get their unbiased opinions.
Heidi, the book you mentioned is very persuasive. It's why we tried the diet but all the success stories I found when researching were from family members or from people that already supported the diet. If you choose to put Conner on this, take a few weeks or a month to journal his behavior and language now so that you have a clear and objective idea of where his baseline is now, before you try to implement any changes. Looking back at my entries really helped me see just what any of the changes were.
ditto what Pam said. I can't tell you how many people have asked me if I've "tried a special diet." Ah, if it were only that easy!
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