Approximately 1 in 150 children are being diagnosed with autism each year and this number keeps growing. Only a few decades ago it was more like 1 in 10,000 children. That leap is momentous! With this disorder growing at epidemic speeds, doctors and parents alike are searching for new ways to combat and prevent autism.
Despite the fact that we hear all too often from mainstream doctors and media that autism has no cure, many parents of autistic children have found reason to hope. There are many treatments now that are bringing hope to these families and one is the gluten/casein free diet. In her book, Louder than Words, actress Jenny McCarthy talks about her son Evan, his diagnosis with autism and her search for answers. I finally got around to reading this book last night and it was incredible.
I was bawling like a baby when she described all of the events that lead to her son’s diagnosis of autism including two seizures that nearly killed him, a misdiagnosis of epilepsy, and medications that made him hallucinate. The story had some eerily familiar notes to it. Jenny was the given the diagnosis in a matter-of-fact, abrupt way and then sent away with medications to make her son more manageable. No cure was discussed, no treatments were discussed…for all she knew there was no treatment or hope for the future. Then, a fellow actress and a mom to an autistic child called her and told her that autism can be treated and cured but there was a crucial window of time and she needed to act fast. Jenny became a mom on a mission to pull her son back from the world of autism and she shares every step of the journey in this book.
One of the main things Jenny did was Jenny did was employ a gluten free diet (accompanied by medication, therapy and supplements) to help Evan overcome autism with amazingly positive results. Once communicating with only one word at a time, Evan is now fully conversational. He holds eye contact and enjoys life as a normal little boy.
How is it that a gluten/casein free diet can help children with autism? No one knows for sure, but one school of thought is that gluten (a protein found in wheat and some other grains) and casein (a protein found in dairy) act in a way that’s similar to morphine on some children. Children with autism often have permeable intestinal tracts, or “leaky guts.” The weak membranes in the intestine allow these broken-down peptides from digested gluten and casein (which act like morphine) to basically get loose in the bloodstream. It either makes them lose control, or become zombie-like. Parents of many autistic children swear by it and it has been widely touted by parents of children that suffer from ADD/ADHD too. The book that Jenny referred to often was Special Diets for Special Kids.
In Louder Than Words Jenny discusses the two different camps that mothers of autistic children seem to be drawn to. One camp has the attitude that they will do whatever it takes and try any and every treatment they can if it means there is even a tiny chance they can help their child. But the other camp resigns themselves to having a “sick” child and they hesitate to do any alternative treatments or even let themselves hope. The latter camp also seems to relegate themselves into the role of “victim” and stay there. But there’s no reason not to try it and see if it helps. Because there are good food substitutes for the food that would become off-limits, there isn’t a risk of malnourishment by eliminating gluten and casein. It is recommended, however, that no child under the age of 5 go on a cold turkey gluten and casein-free diet, because it could cause withdrawal and worsening of the symptoms of autism. Although Jenny did go cold turkey. Evan could only say a few words and only one at a time. After 3 weeks on the gluten/casein-free diet he approached her and said a four word sentence…asked to go swimming. Jenny couldn’t believe her ears and she is now a big believer in this diet.
Many parents who have incorporated a gluten/casein-free diet into their autistic child’s healthcare plan are swearing by the positive results they’re seeing. Children are communicating better, interacting more and functioning at a higher level. The medical community is looking closely at this alternative treatment option for autism and many doctors are adding it to their treatment plans for autistic patients. But it’s not a guarantee for everyone.
I was very interested in what I read in Jenny’s book about this diet and I am looking closer at it because my youngest is about to turn two in a couple weeks and he is pretty much non-verbal. He says “no”, “Daggen” which means Payton (his older brother), and “night-night”. That is pretty much it. This doesn’t really bother me but he does drink an absolute ton of milk and has been getting sick a lot lately so I am wondering if his overall health and verbal skills might improve if I get him off the dairy. I just looked online and his physical development and social and emotional development are right on track according to this site. But his intellectual development is lacking if their chart is to be believed. I am not sure I agree with their indicators though and especially calling them intelligence indicators because Parker is very intelligent. I swear he understands everything I say and he seems to understand every instruction I give him…he just doesn’t respond verbally. If I ask him if he wants to take a bath he doesn’t respond with a yes or no he just runs down the hall to the bath. If I say it is time to eat, he runs out to the kitchen and if I say “go get in your chair” he will run to his high chair and get in it. In that chart he has a problem with these:
- uses 2-3 word sentences
- says names of toys
- hums or tries to sing
- points to eyes, ears, or nose when asked (we are working on this – he knows his uhm…private parts perfectly though, LOL).
- repeats words
It would be interesting to see if a gluten/casein-free diet might improve these things. It would be nice to wean him off the milk regardless. I really hate how much of it he drinks and of course it still bothers me that he isn’t breastfeeding. :( I had to stop at 6 months when I was diagnosed with cancer.
Do you have any ideas or thoughts about the gluten/casein-free diet? Please share!
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I am one of those moms who saw the absolute “miracle” of the gluten-free diet for my autistic son. Now 2 and 1/2 a casual observer could hardly tell he has any delays. He went from an incredibly hyper, disorganized kid, to a calm, relaxed one who could participate in his therapies and SLEEP through the night… Unbeliveable difference. I am a big advocate of at least giving it a TRY. For us, it was like night and day!
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I read this through your rss, and have to reccomend Betty Hagman’s ‘Gluten-Free Gourmet’ recipe book. I was diagnosed with a ton of allergies, including gluten when I was about 27. I *love* cooking, but trying to find ways to taken gluten out of your diet when you are on a pretty tight budget is hard. I’d also say that if you *are* going to go gluten-free, don’t do the bean flour mixes. Stick with rice, amaranth, etc, and use xantham gum with them, even if it is expensive. It’s a thickener that gives the bread it’s texture and cooking bread without it gluten-free makes the bread oddly textured and bad for things like sandwiches and toast.
I have to tell you that I tried a gluten free diet for my endometriosis and it works wonders. A few years ago (3), when I was first diagnosed with endo, I attended the Int’l Endometriosis Conference in Milwaukee, a speaker that was a British nutritionist said that 75-95% of women with endo had some reaction to wheat. So, I go off wheat for 30 days and was amazed how much less pain I had. Not to mention my lifetime eczema was almost gone and my blowing my nose every morning was a thing of the past.
I have been on and off wheat for the last three years, and the minute eczema reminds me to get off wheat I get better.
Just so no one gets the idea that getting off wheat cures endo, you should know that what works best is an anti-candida diet. I find it too hard (no gluten, no dairy, no sugar). But, I did a one year treatment of Chinese Traditional medicine and I am pain free.
Also, I am constantly trying to put the least amount of toxins into my body, i.e. organic, meat and dairy, CSA vegetables, no sodas, no plastic in my kitchen (check out my business at http://www.HealthyKitchenware.com), regular exercise, no alcohol, etc. My diet is not always great, especially around this time of year, but I am trying to keep it together with pretty good results.
Good luck!
Hi, Tiffany! I agree with Meredith. Having one Celiac gene and at least one gluten intolerant gene (and having leaky gut), Betty Hagman’s books are *super*.
Also, read *every* label of food, and if you suspect your son is super sensitive to gluten, only buy from places that are dedicated to only GF ingredients in their “factory”. I recently blogged about a company that claimed they had GF crackers (found as a seasonal item @ Sam’s Club), but when I started reacting like I was exposed to gluten, I finally found a tiny asterisk that lead to a statement that small traces of gluten were added in this “GF” product!!!
Manufacturers legally can choose not to list certain ingredients if it’s less than a certain percentage, even though those with allergies/intolerances may be mislead and suffer because of this. It only takes a molecule to get some people *reacting*.
My daughter can “get away with it “and eat more gluten before it *really* gets her sick, so she thinks it doesn’t effect her even though two docs have told her that it does.
Okay–another interesting thing. Our nutritionist also believes that all three of my kids, all of whom are LD, are being effected by gluten and would do better in school if it could totally be eliminated.
It’s interesting to note that while allergy testing showed that I only have a very mild intolerance to gluten, gene testing (where I scraped the inside of my mouth for cells) proved that I *did* have a problem with gluten.
You don’t need to go through other testing like blood tests or the invasive biopsy of the villi in your intestine. The gene test is accurate and easy to do, and much more reliable than other tests. Also, if you do a very careful elimination diet (gluten is hidden in *so* many things, including medicine!) and you feel better, trust that, as well.
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A super reliable GF site that my friend spends *gobs* of time researching (she talks to many of the docs and researchers one-on-one and “picks their brains” :-) ) can be found here: http://www.glutensensitivity.net
Also, a few days ago I found an interesting article in the Dec/Jan “Natural Communities” (a freebie in NW Wisconsin) on page 9 about cell phone use and how this one doc, Joseph Mercola, believes there is a link between a caretaker’s use of a cell (and my doc also said cordless phone are included) and an infant’s health and autism.
He also cautions the use of cells by young children, fearing they will effect developing nervous systems and their thinner, skulls, making them more vulnerable to even cancer.
He also has a website that I want to check out. It’s at: http://www.mercola.com and claims to be the #1 health website in the world.
I’ve also heard that the decline in honey bees may be linked to cell phone usage.
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Oooops! Forgot to mention, but the rice noodles are *super* tasing, and my family can’t tell the difference. My hubby also likes rice flour to thicken gravy, etc, because it doesn’t lump as easily.
Unfortunately, alternative grains *are* more expensive, but they are well worth using, especially to avoid gluten. Try storing them in the fridge to extend their shelf life.
Quinoa is a grain that is in question, but I have never noticed a reaction to it when I consume it. Gluten is tricky, because you can get a reaction/have symptoms from it for up to 6 weeks.
Sooooo, if you plan on trying the “elimination” diet to see if you feel better without gluten, do it for at least 6 weeks and see how you feel then.
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Well, I guess I’ll put on the Captain Skeptic hat again.
I haven’t read Ms. McCarthy’s book, so I won’t comment on details of her case, except to say that I guess she must be happy to have shoehorned her way back into celebrity.
The long and short is that for every child who is “miracle cured” by the therapy-of-the-week, there are hundreds of others for who the “cure” makes no difference whatsoever. There are two likely possibilities, I think.
(1) Child is delayed, the problem abates as they get older, and the parent attributes the success to whatever therapy they happen to be using when they start to see improvement, or
(2) Child is legitimately allergic to casein or gluten or both, and improves markedly because they are no longer in discomfort.
Option (1) is a well understood psychological phenomenon that is a risk in any analysis based on anecdotal evidence. Option (2) is a legitimate fix to a serious problem, but not a “cure for autism”.
The fact is, anecdotal results have given us all kinds of expensive, nonfunctional therapies. Gluten-free/casein-free, trans-fat-free, chelation therapy, vitamin supplements (aka DAN), fish oil supplements, etc. ad infinitum. Why, there are all sorts of cures for autism if you’re willing to part with your money! There’s a whole industry dedicated to selling “autism recovery”.
Long story short, we’ve got a lot of kids being diagnosed with autism out there that would have been diagnosed with speech delay, apraxia, allergies or something like that a couple of decades ago. When those kids get better on a funky diet, it does not mean that every child with autism will be cured by the application of that treatment. I think it’s irresponsible to make such a claim, and even more irresponsible to take somebody’s money with promises of recovery.
OK, Captain Skeptic is done.
RR
Your youngest sounds like my son, who is just a late talker. Very, very bright, and we finally decided to get some speech therapy to encourage him to talk, which has worked wonders. In my area, the county has a free program for that.
My son would grunt and point to most things, and rarely use words. He only had a couple at age 2. By 2-1/2 he had a few more, but tended to use only one syllable of a word to get his idea across. He’ll be 3 at the end of February, and has been in speech therapy about 5 months. He still often uses word fragments, but he’s gone from only occasionally using 2 syllables to using 5 or more if needed.
As for bright, I know it. At 2-1/2, despite only doing 2 syllables at a time he knew his entire alphabet (couldn’t say ‘w’ of course), and was counting over 10. He sees his sister learning to read and is trying to do so as well. I feel quite comfortable that all we have is a speech delay.
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My son will be 2 in March and he doesn’t say many words either. It’s so hard for me because my oldest was almost talking in sentences by 18 months (also knew every letter, color, shape,etc….) so it’s been hard for me to not compare them. He too is very smart and understands what I say. The examples of the bath and getting in the chair are just like us. He understands what I tell him but won’t converse with me. I’m hoping that over the next few months he will really take off with his vocabulary. We read books every day and he gets talked to all the time! I’m so new at the “gluten” thing so I’m not even sure where to begin. About 2-3 months ago I really got on the “green” bandwagon and have since switched to all organic foods and milk, removed all plastic from our kitchen, we use Earth friendly/non-chemical house cleaners, etc…. I am interested to see what you do and if this helps your son. Please continue to post your ideas and findings! Thanks!!
Your son remined me of our youngest, too, Tiffany. Lots of people had told us that the 3rd child/youngest doesn’t *need* to speak because they are understood by their doting sibling(s). :-)
My youngest daughter, now almost 10, barely spoke a word, but we thought, as did our pediatrician, that since she was the 3rd child, she didn’t *need* to talk. (My mom had been *very* concerned.) We all knew what she wanted, and her siblings would get her things before she ever made a peep.
Once, we had told our middle son to get his slippers. He was too into what he was doing and wouldn’t get them. A few minutes later, out toddled our daughter with the slippers for him, one in each hand. :-)
Yes, all 3 of my children are LD, but our doc thinks they’d all do better without gluten in their diet, and also with fish oils that we’re *all* lacking in our diets.
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I know she also mentioned how important it was to get rid of the overgrowth of yeast (candida), too. I don’t know if that was in the book, but she talked about it in her interviews. I can atest to this with my own health and putting my 3 year old son on the diet. He wasn’t diagnosed with autism, but he was borderline aspergers. He has been in therapy for speech, sensory issues, and other things…plus on the diet…and he is doing so much better. And this isnt just about kids with extreme health problems, like autism. I wish more parents would understand the importance excellent health plays…I know I always thought I was feeding my kids healthy, but until 2007 I now see I never really was.
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I’ve had really bad brain fog for most of my life (I’m in my 40s), and candida was one thing (of many) my docs think was/is a culprit.
Candida overgrowth is *very* difficult to get rid of. I still struggle with it, but if you keep sugar out of your diet and quit feeding it, it helps. Can’t remember the medicine I took to try to get rid of it, but it was so nasty tasting, I remember once upchucking after taking it.
Taking Acidophilus will help feed the good flora in your body and help keep things in balance. I took several refidgerated forms of it, but if you plan on using yogurt, make sure its organic with as little sugar added to it as possible.
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Well I’ve read lots of the concepts behind why a wheat/ dairy free diet helps children with autism and my general belief is that autism is being misdiagnosed and that many of the children suffering from it actually have several food allergies, whether it be to soy or wheat or dairy. It would even make sense that the rates have been going up because since the introduction of GMO foods, hundreds of deaths have been reported from allergic reactions to these foods. Even organic food can often be contaminated by GMO food by accident. Many of the things associated with autism like seizures are also associated with having wheat allergies. Also once someone is allergic to something like that and continues to be exposed to it, it causes damage to their digestive system making it hard to absorb vitamins, minerals and omega three fatty acids. So basically, over time the person becomes malnourished which has a huge effect on their brain function, especially in young children and infants. I also am considering removing wheat and dairy from my daughter’s diet. She has a soy allergy and has been having hard stools since she was around 8-9 months, after she started eating solid foods including grains. I discussed this issue today with a friend at work who is allergic to an ever growing amount of things and she said that’s usually a sign of a gluten allergy or sensitivity. My daughter is also behind in her growth and seems to be struggling with things she excelled at before starting solid foods. So I am wondering if this could be the case and a diet change could benefit her.
I see you’ve had another candida/yeast comment. I just wanted to add that yeast overgrowth can play havoc with the system. I’m not sure if your son is having any intestinal, sinus, low immune system or allergy problems but if he is, I’d really investigate this option, focusing on healing his gut and replenishing with colonizing flora. Many people tout the benefits of probiotics but don’t realize two important things: the gut needs to be healed of inflammation to get the best benefit and you need to use multiple colonizing strains. Homemade kefir is great for that (not the kind with FOS, which also feeds bad bacteria). I hope you are seeing positive results from the changes.
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Tiffany,
Check out “Breaking the Vicious Cycle” (book) and http://www.pecanbread.com. The website is majoring in the successful healing taking place in the population with autism using the specific carb diet. We’ve been using it for nearly three years and I can’t tell you the amazingly positive things we’ve seen and experienced. I believe it’s also what Jenny M is using now.
Tiffany, I have to second Green SAHM’s comment. My oldest did not speak well by age 2 and we took him to a speech therapist to help him learn to speech. Many counties have programs and some insurance companies pick it up if you decide you don’t want to use the county program.
As a red flag to watch, as he continues to develop and read, it is possible that he may have dyslexia as well. I was told that speech disorders may be a precursor of dyslexia but not necessarily. Just so you keep your eyes open.
It will be more evident when he starts to read and having trouble sounding out the words. My kids (3 out of 4) had phonemic awareness issues in that they could not sound out the words when they read. It is all curable but they need to be trained on how to read with a specialist. The earlier the better with intervention.
Your son may also just be a late bloomer too. We all develop at our own time. But it is worth checking out with a therapist. Anna http://www.green-talk.com
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