Sorry, Jenny McCarthy. You don’t speak for me.
September 21, 2007 by wskrz
I don’t usually watch Oprah. And considering how pissed off I still am, I wish I hadn’t.
Jenny McCarthy was on the other day, talking about her son and the “cures” that she’s found (via Google, of all resources!) for his Autism.
Aside from the fact that we both have a son with Autism and that we have boobs (while hers are much more substantial), that’s where our similarities end.
Remember my earlier post about Autism Wars? This has made the opposing sides even further apart, rather than working together to just get all kids what they need. Way to go, Jenny. Way to go.
The GFDF diet (sorry about the weird terminology and terms. That stands for Gluten Free, Dairy Free. It’s also known as the Gluten Free, Casein Free diet. Do a search on Google and you’ll get 52,600 hits - only if you put quotations around it though) was mentioned constantly. I’ve had this diet recommended to me already so many times (remember, Alex has only been diagnosed for a week. People before his diagnosis were telling me I should put him on it.) that it’d make your head spin. I’ve been told that because Alex enjoys his bottle of milk so much, that he’s probably allergic to it. I should get him off it right away because he likes it too much!
I like chocolate chip cookies a lot too. I’d better go on the Chocolate Chip Free (CCF) Diet right away.
Okay, okay, GFCF supporters, don’t bombard me with messages and emails. I don’t want to hear it. I’ve already made up my mind. Until I see a network news broadcast where Charlie, Katie or Brian announce, “Tonight on the [insert your favorite network name here] News, a milk free and wheat free diet is scientifically found to cure Autism,” I’m not convinced.
Sure, Jenny. You’ve got tons of money behind you to get you all the help you need. Want to get the little guy on a diet? No problem. You can afford the $6 special bread and the $7 gallon of soymilk for him, not to mention the person to go out to get it for you. Don’t forget the person to cook the special meals too! You’ve got the money to have someone look after your son while you’re off gallivanting on your multi-city book tour. You’ve got the money to find the best specialists and therapists that your boy needs.
You know what the reality is for the rest of us, honey? It’s struggling to make ends meet because the health care bills are piling up. Struggling to find another speech therapist because the previous one wasn’t working out. Struggling to fill out paperwork to get more therapy, only to have to endure a 10 month wait list. Struggling to keep our jobs because we’re missing work due to yet another problem at home. We’re lucky if we can get some time to ourselves. We sure as hell don’t get to do an all expenses paid multi-city book and media tour.
And damn, your house was so clean. You should see mine. Did you pay for someone to clean your house before the camera crew came too?
It really is true. Money does buy everything.
Oh, and shame on you, Oprah, for not presenting a more balanced piece of journalism. Not that your show has had much to do with journalism lately, but you should know better than to hitch a ride to the misinformation express.
So forgive me if I’m not too receptive to your message, Jenny. Yes, I agree that autism awareness is important.
But I’d prefer it if there were a better spokesperson out there than you.
You don’t speak for me. Or my son.
People who pose nude for magazines should be thought of as scientific masterminds and their opinions should not be discounted. You’re narrow minded.
LOL! And small breasted.
I love it! You took the words right out of my mouth! My 7 year old was diagnosed over 4 years ago and it is so frustrating when someone publicizes these “cures”. My friends, family, and coworkers inevitibly ask when we are going to try these cures to ‘fix’ my son!
Hmmm, I think I’ll go buy some crystals and GFCF bread and milk today!
Not!
I know the “free” diets work for many but certainly NOT ALL and it certainly isn’t a CURE or this would have been proven long ago. I’ve watched as the number per thousands have gone to the double digits per hundreds. My Alex is autistic too. While I agree that the diet can play a role it certainly isn’t a cure.
I will continue to celebrate in the fact that those with money are getting involved and those with money can fund research and those with money can spread the word that something is going on in developed/developing countries and it is on the rise. I think about my grandkids and their grandkids and so on…let’s find the whys and hows of this ASAP.
People who pose for nude magazines should be thought of as scientific masterminds based on that fact, but neither should they be not thought of as scientific masterminds based on that fact. A person’s profession has nothing to do with how valid or invalid their opinions are. I won’t defend Jenny McCarthy, but taking shots at her just because she had a boob job or is famous or was featured in Playboy has nothing to do with it.
“A person’s profession has nothing to do with how valid or invalid their opinions are.”
This is why it doesn’t matter if you’re a doctor, a scientist or an uneducated whore, you can still bust out with “I am an indigo mom and I have a crystal child, we are more highly evolved so I’ll write a book and make millions off of you people who are just as naive as I am.”
Why do people even bother becoming physicians if their profession doesn’t influence their professional opinion?
I didn’t watch the show, but I can tell you that if it weren’t for the GFCF diet, my son wouldn’t be anywhere near where he is today. No - the diet doesn’t work for all, but for those that it does - it’s worth the $6 loaf of bread and a 1/2 gallon of rice mile is only $1.79. Milk isn’t much cheaper! It isn’t a “cure,” but it’s the closest thing I’ve come to since diagnosis 2 1/2 years ago.
I’m no millionare, nor am I famous. I have no maid to clean my house, yet it is clean and tidy. It’s sad that you won’t try EVERYTHING to help your child.
Before you go bashing something that is supported time and time again by family after family, read the facts. There is so much research out there that is supporting the GFCF diet for treating autism.
I was skeptic #1 when I first learned about it; however, my son showed all of the signs that it just might work (i.e. he was a gluten and dairy-aholic!!!) I hated thinking about how difficult it would be - when I was 100% honest with myself - what I really didn’t want to have to deal with was a change in my lifestyle. I didn’t want to have to prepare all of those special meals for him. I didn’t want to have to quit spending money elsewhere to afford groceries for him…
I’m thankful I kept reading, researching, and found the facts. I hope others do too!!!
Jenny McCarthy is in the public eye. Whether you’re an actress or a Playboy model, you’re gonna take hits from the public, good or bad.
Their profession does have everything to do with how valid or not their opinions are. Because it’s going to come back to haunt them in some way.
See the indigo and crystal stuff she subscribes to, if you want proof. Notice how her publicity machine for this tour she’s on is conveniently trying not to bring that into the open too much?
Gee thanks, itworkedforme. Thanks so much for that guilt trip of “you won’t do everything for your child, so you’re so terrible.”
See folks? This is a good example to why nothing gets done in the autism community. This is what I meant in my Autism Wars post of what pisses me off about the autism community. Instead of being interested in helping our children, we’re too busy going at each other throats.
And insulting each other at the same time.
You know nothing about my child. You have no idea what his autism is like. So making the claim that it’s “sad that I won’t do everything to help my child” because I don’t have the time or the money to do this diet is total bullshit.
And if you’d re-read my post, I’m not bashing the diet. I offered my opinion on Jenny McCarthy. And I said that she doesn’t speak for me or my son. If she speaks for you, great. My mileage varies.
Before you go bashing something that is supported time and time again by family after family, read the facts. There is so much research out there that is supporting the GFCF diet for treating autism.
I did some research on PubMed. There hasn’t been one study that had more than 10 subjects in each treatment arm. All of the internet research supporting these are antecdotal at best. Research isn’t what will convince people to try this, it’s emotion. This is not to say anything is right or wrong. It is to say we should beware of what is “fact” and what is “support” and what is a story on the internet with no confirmation of truth.
1) Pediatr Nurs. 2007 Mar-Apr;33(2):138-43
To date, there is little empirical evidence supporting the effectiveness of dietary restrictions in treating child psychiatric disorders, in particular, autism and attention deficit hyperactivity disorder (ADHD).
2) J Dev Behav Pediatr. 2006 Apr;27(2 Suppl):S162-71.
Seven trials of these diets in ASD are critically reviewed; 6 of these were uncontrolled trials and 1 used a single-blind design. All reported efficacy in reducing some autism symptoms, and 2 groups of investigators also reported improvement in nonverbal cognition. Design flaws in all of the studies weaken the confidence that can be placed in their findings.
3) J Autism Dev Disord. 2006 Apr;36(3):413-20
This study tested the efficacy of a gluten-free and casein-free (GFCF) diet in treating autism using a randomized, double blind repeated measures crossover design. The sample included 15 children aged 2-16 years with autism spectrum disorder. Group data indicated no statistically significant findings.
3) Cochrane Database Syst Rev. 2004;(2):CD003498
The one trial included reported results on four outcomes. Unsurprisingly in such a small-scale study, the results for three of these outcomes (cognitive skills, linguistic ability and motor ability) had wide confidence intervals that spanned the line of nil effect. However, the fourth outcome, reduction in autistic traits, reported a significant beneficial treatment effect for the combined gluten- and casein- free diet.
4) Nutr Neurosci. 2002 Sep;5(4):251-61.
A randomly selected diet and control group with 10 children in each group participated. Observations and tests were done before and after a period of 1 year. The development for the group of children on diet was significantly better than for the controls.
She didn’t say you’re terrible. She said “it’s sad.” You should try everything out there for your child. Try chelation therapy. Go talk to the family of the autistic child who died from it and see if they think it’s “sad you won’t try everything.”
Sad….terrible…whatever. Same thing. I should probably also try the magnetic clay therapy that a poster mentioned in my Autism Wars post.
The plural of anecdote is not data.
Until the numbers show it to be statistically significant, it’s an old wives tale.
Some people have stomach and bowel problems, some have a disease (which seems to be passed through the genes) called Celiac. The gluten harms the villus in the small intestine which causes a lack of vitamin absorbtion or none at all. This begins the cycle of malnutrition and can be linked to developmental issues, obviously.
Doctors don’t know everything about everything, that is why they are in “practice.” It benefits us all to do research and share information to help the doctors find out what is happening. An active part makes us stronger and benefits our kids and their kids and so on.
It could be that many doctors are diagnosing children with this disease as autistic and then when the diet is changed the children improve and are deemed cured. It is possible that autistic children could have a variation of this disease and that removing the gluten helps.
For more information on Celiac disease see this link or google it.
http://www.gluten.net/celiac.html
Let’s be engaged and connected so we can help doctors find out what is happening and help one another!
MY true sentiments exactly…I m very upset about Oprah doing that circus act..I even left a big long post on the message board that says exactly what you said…How about the middle income or lower income brackets OUT here suffering…i live in a small town that doesnt have money for special therapist…to come in n focus on just one child at a time SO before JM shoots her mouth off about these CURES she should be first in line to help pay for all the parents who cant afford the special foods for their children while she sits back on her 6 figure income she is now goin to make off her son…
The GFCF diet cured my son completely.
Does it matter that Jenny McCarthy endorses it? Who cares?
If it works, and you get your son back, does it matter if doctors believe in it?
If you’re not at least willing to look at the fact that doctor’s don’t yet know everything about autism, you’re not being the best advocate for your son.
Here’s an article in this weekend’s paper about our son and our story:
It’s the second story down on the page.
http://www.austinchronicle.com/gyrobase/Issue/story?oid=oid:540584
For real information, from a real medical doctor who is trained in emergency medicine, on why the GFCF diet works, look up Dr. Bryan Jepson’s book, “Changing the course of autism.”
He’s a real doctor, not an actress. He has a 60-page list in the back of the book with peer-approved medical journal articles that list the science behind why this works.
Don’t be so quick to dismiss something that might help.
And I have two kids and a husband on the diet — yes, it’s expensive. So is having an autistic child.
Meagan
Spoken like a true salesman, Meagan.
Your linked site - http://mcgovernsorganics.com/
A dozen cupcakes for $24?! $20 soup?!
And wskrz, looks like you should have taken out that loan -before- you gave birth to an autistic kid.
Hey Kathyn, you should be able to afford these prices after finding your therapist, right?
Just for the record, Meagan, my son isn’t gone or lost.
He’s right here with me. Always is. Always has been. Always will be.
So there’s no reason why I need to get him back.
I detest this terminology. With a passion.
So hate the terminology. That doesn’t mean the GFCF diet doesn’t work.
And yeah, I can afford expensive bread now. I’m not going to speech therapy three times a week anymore, because my son can talk on a normal three-year-old level.
I’m also not going to doctors or therapists. He’s just a “normal” kid, whatever that is.
I’m surprised by the level of anger here.
My kid was cured. Your kid might be helped. Maybe not. The more information you have, the better.
I’m honestly not sure where the nastiness is coming from about the website — I was trying to show you that there’s help out there to stay on the diet. I’m pretty sure you don’t live in our delivery area — I’m not trying to sell you our bread.
And I’m not a salesman — my sister, however is. She runs the business.
I’m a homeschooling mom of two kids who stays home and tries to help other moms know that for some kids, there’s something out there that helps. We teach free cooking classes to anyone who wants to learn and offer whatever help people need, for free, to stay on the diet.
And believe me, I wouldn’t still be doing this a year later if it didn’t work. Not being able to give my kids what they want to eat sucks, frankly. But it’s better than going to speech therapy three times a week for a boy who has only ten words at two and a half.
I’m sorry my terminology offended you. For me, it did feel like we were losing my son when he stopped playing and smiling and responding to his name, and now, when he talks to me and plays, it feels like we have him back.
No offense meant. Honestly.
Just keep an open mind, and even if you won’t listen to me, at least look at Dr. Jepson’s book. The medical science does back this up.
I’m not a kook. (OK, maybe I am, but not about this!)
Do you want to know what’s really sad? The divide in this county not just based on opinion, but on money.
wskrz, I totally got what your post said. It’s too bad that a lot of people aren’t getting the crux of it. I LIVE the fact that there isn’t enough money for all kids who have autism in this country. I’m a working single mom (Thank God my mother is able to take care of him so I can earn a little money to put food on the table and to barely pay the rent. No special bread or special milk or anything like that for us). My pathetic insurance coverage only pays for a lifetime maximum of $1000 of speech therapy. Yes, lifetime! My county doesn’t have enough spots for my son because it’s been full for months and will be full for over a year. Meanwhile, my son gets no therapy.
I love how Jenny can talk about how she can cure her son with all the money she’s got. OUR reality, however, and the reality of a LOT of parents in this country, is that we don’t have these luxuries available to us. I hate that you’re right, wskrz. WHen you said money buys everything, you were so right. I live that every day.
So if any of you are serious about fighting autism, stop arguing about what diet or therapy or doctor will cure our kids and start fighting for fair and equal care for ALL CHILDREN. REGARDLESS of income.
Meagan
you were making a quite reasonable case until you mentioned Jepson’s book. The first verifiable statement of fact he makes in chapter 2 is that Kanner published his seminal paper on autism in a textbook. Wrong. “The Nervous Child” was quarterly journal. The journal did not survive but Kanner’s article is still available online.
A small point? Yes. But Jepson goes on to claim that Kanner had worked as a child psychiatrist for 21 years prior to 1938 and had never seen a child with autism in all that time. This is a much bigger point. In 1917 Kanner was serving with the Austrian Army in World War I. He did not qualify as an MD until 1921. His first job in the USA in 1924 was as assistant physician at an insane asylum in South Dakota He did not start work as a child psychiatrist until 1930 when he was invited to assist in establishing the first child psychiatric ward in the USA, at John Hopkins. Kanner had to teach himself about child psychiatry. He wrote the first textbook on the subject, published in 1935.
But whether it was 21 years or 8 years is Jepson right to wonder why it took so long to see an autistic child? Jepson quotes Kanner,
“These characteristics form a unique “syndrome,” not heretofore reported, which seems to be rare enough, yet is probably more frequent than is indicated by the paucity of observed cases.”
The Jepson quote stops there. But in the original, Kanner continues,
“It is quite possible that some such children have been viewed as feebleminded or schizophrenic. In fact, several children of our group were introduced to us as idiots or imbeciles, one still resides in a state school for the feebleminded, and two had been previously considered as schizophrenic.”
And although Kanner’s unique syndrome had not been previously reported in the literature there were plenty of reports of children just like the ones in his 1943 paper. The most famous examples were published by Langdon Down, who gave us Down Syndrome. [Incidentally, does Jepson believe there were no mutations on chromosome 21 before Down decribed them?]
Here is an excerpt from Dr Treffert’s paper on Langdon Down. Remember that Down published his findings in 1887, 60 years before Kanner’s paper.
“Within this separately observed group of children, Down described two sub-groups. In one group, the early months of childhood were uneventful and ‘intelligence dawned in the accustomed way.’ But around age six or so, ‘a change took place in that the child’s look had lost its wonted brightness; it took less notice of those around it; many of its movements became rhythmical and automatic’. There was ‘cessation of increasing intelligence’, ‘lost speech’, ’suspension of mental growth’ and ‘lessened responsiveness to all the endearments of its friends.’ One boy ‘attracted no particular attention during the first six years of life,’ but then he suddenly lost speech and ‘heard everything that was said, but never replied to a question.’ When he did regain some speech, he often ’spoke of himself in the third person.’ Two brothers ‘both lost speech at the period of second dentition’. Late-onset or regressive autism? I think so.
But there was a second group of such patients, as well. These children also lacked the ‘physical aspects’ of mental retardation. They were ‘bright in their expression, often active in their movements, agile to a degree, fearless as to danger, persevering in mischief, petulant to have their own way. Their language was one of gesture only; living in a world of their own they are regardless of the ordinary circumstances around them, and yield only to the counter-fascination of music.’ Because these children do not appear retarded mothers have an ‘expectancy of speech; month after month the hopes are kept at high-tension, waiting for the prattle which never comes. How the self-contained and self-absorbed little one cares not to be entertained other than his own dream-land, and automatic movements of his fingers or rhythmical movements of his body … they have well-formed heads, finely textured skins, well chiselled mouths, sparking eyes, features when in repose leading one to augur only brightness and intelligence … He runs to you when called but makes no response in words. He returns your kiss with a bite, and runs away with agile steps, rolling his head with a horizontal swaying motion….’ Early-onset autistic disorder? I think so.”
Now you may argue that you are just a mum and how are you expected to know all this? But Dr Jepson claims to be an expert and has written a book. He ought to know this stuff. In the space of two pages he makes substantial errors of fact about Kanner’s career and then selectively quotes from Kanner to imply that nothing like the cases Kanner observed had ever been seen before.
Whatreason havewe to nelieve that the rest of his book is any more reliable?
Meagan,
you were making a reasonable case until you mentioned Jepson’s book.
On page 11 he states that Kanner’s classic paper was published in a text book. Wrong it was published in a journal.
Then he claims that, prior to 1938, Kanner had been a child psychiatrist for 21 years. In 1917 Kanner was serving in the Austrian army. He only qualified as an MD in 1921. When he came to America in 1924 he worked in an insane asylum and it was only in 1930 that he was invited to establish the first child psychiatric service at John Hopkins.
Jepson wants us to believe that there were no autistic children identified prior to 1938. He quotes Kanner to support his case.
“These characteristics form a unique “syndrome,” not heretofore reported, which seems to be rare enough, yet is probably more frequent than is indicated by the paucity of observed cases.”
But the quoted passage continues thus.
“It is quite possible that some such children have been viewed as feebleminded or schizophrenic. In fact, several children of our group were intorduced to us as idiots or imbeciles, one still resides in a state school for the feebleminded, and two had been previously considered as schizophrenic.”
Jepson omits this because Kanner contradicts his case. So we have serious errors of fact and deliberately misleading quotes to justify the false premise that autism was a new phenomenon that only emerged in the 1930s. Jepson ought to know that in 1887, 60 years before Kanner published his paper, Langdon Down, who gave us the first clinical descriptions of Downs Syndrome, was describing children remarkably similar to those in Kanner’s paper.
Dr Treffert wrote about it in his paper for the AWARES conference.
“Within this separately observed group of children, Down described two sub-groups. In one group, the early months of childhood were uneventful and ‘intelligence dawned in the accustomed way.’ But around age six or so, ‘a change took place in that the child’s look had lost its wonted brightness; it took less notice of those around it; many of its movements became rhythmical and automatic’. There was ‘cessation of increasing intelligence’, ‘lost speech’, ’suspension of mental growth’ and ‘lessened responsiveness to all the endearments of its friends.’ One boy ‘attracted no particular attention during the first six years of life,’ but then he suddenly lost speech and ‘heard everything that was said, but never replied to a question.’ When he did regain some speech, he often ’spoke of himself in the third person.’ Two brothers ‘both lost speech at the period of second dentition’. Late-onset or regressive autism? I think so.
But there was a second group of such patients, as well. These children also lacked the ‘physical aspects’ of mental retardation. They were ‘bright in their expression, often active in their movements, agile to a degree, fearless as to danger, persevering in mischief, petulant to have their own way. Their language was one of gesture only; living in a world of their own they are regardless of the ordinary circumstances around them, and yield only to the counter-fascination of music.’ Because these children do not appear retarded mothers have an ‘expectancy of speech; month after month the hopes are kept at high-tension, waiting for the prattle which never comes. How the self-contained and self-absorbed little one cares not to be entertained other than his own dream-land, and automatic movements of his fingers or rhythmical movements of his body … they have well-formed heads, finely textured skins, well chiselled mouths, sparking eyes, features when in repose leading one to augur only brightness and intelligence … He runs to you when called but makes no response in words. He returns your kiss with a bite, and runs away with agile steps, rolling his head with a horizontal swaying motion….’ Early-onset autistic disorder? I think so.”
I think so too.
OK. Again, maybe I’m wrong. Maybe Jepson’s wrong.
I only have one point, and it’s this: Even if Jenny McCarthy’s a twit, and the doctors that say the GFCF diet works are idiots who make mistakes, please listen to the thousands of mothers who have said it makes a huge difference.
This is what sold me on trying it, after months of research:
http://www.gfcfdiet.com/Successstories.htm
It’s not science. It’s not doctors. It’s just regular parents fighting for what’s best for their kids.
My son talks now. He didn’t before the diet. If he eats wheat or dairy, he stops talking and has autistic symptoms.
When I take him back off of wheat and dairy, he starts talking again.
You can disagree with everything I say, and think I have something to sell, and argue science with me (I was a reporter for a major newspaper following the science and medical beat before kids,) and that’s fine.
But here’s the thing. The GFCF diet is free, despite all of the stuff above about expensive foods.
Try this: Feed your child plain chicken, fish, veggies, fruit and potatoes for four days. Go ahead, include potato chips, french fries, everything you normally eat. Just skip the wheat and milk and cheese. Use soy milk, or almond milk, or rice milk. I’d ask for a week, but it doesn’t sound like you’re open to that.
After four days, tell me to buzz off, that I’m wrong. Maybe it won’t work for you.
I’m not selling anything to you. I don’t have a vested interest in your child getting well.
I just believe that for four days, to try something that’s free and that can’t hurt anything and that might, just might, have your son out of speech therapy and talking normally in two months, as it did mine — I think it’s worth it.
It’s one of the few times that there’s no risk, and a lot of potential gain.
Meagan
Wow it sounds like Meagan is so dedicated to the cause that she could hook you up with her sister to GIVE you enough gluten-free flour for you to try it for a week. If it works, you can pay her back. If not, at least she proved she believes enough in the cause to put herself out there. That’s awesome, Meagan. I know once you do that, Wskrz will post an update daily. Maybe after every meal. With photos.
You don’t need gluten-free flour! You don’t need gimmicks! But sure, if someone wants gluten-free bread to try the diet, I’d be happy to send it to them. I don’t think that’s the point, though.
I was upset by this in the original post:
“Until I see a network news broadcast where Charlie, Katie or Brian announce, “Tonight on the [insert your favorite network name here] News, a milk free and wheat free diet is scientifically found to cure Autism,” I’m not convinced.”
You will never see this happen.
Who’s going to sponsor the research? The anti-gluten foundation? The anti-milk league? There’s no one with any money to make in this.
There are scientific studies done that show the diet works. But it doesn’t work in every case.. And that’s why this isn’t being shouted from the rooftops — it doesn’t work for every child. And there’s no one to fund further studies to see why.
However, when it does work, it’s amazing and simple and free, and that’s why I think everyone should give it a shot. Regardless of whether Katie or Charles endorses it.
Meagan
I was upset by this in the original post:
“Until I see a network news broadcast where Charlie, Katie or Brian announce, “Tonight on the [insert your favorite network name here] News, a milk free and wheat free diet is scientifically found to cure Autism,” I’m not convinced.”
You will never see this happen.
Then if it works and scientific studies that have been done show that it works, why wouldn’t the press report it?
Don’t you think that this would be Big News, considering that autism is supposed to be so rampant in kids today (1 in 150 kids being diagnosed as on the spectrum) and is such a favorite topic of the media?
Meagan,
I do not have a big problem with the diet. But I have yet to see any convincing evidence of the mechanism whereby food allergies or intolerances can cause autism. A significant number of autistic children are verbal and mainstreamed without the diet. Then there are people like Luke Jackson. He is autistic, he has food intolerances and he follows the GF/CF diet. He even wrote a book about it. It hasn’t cured his autism. It has cured his dietary problems.
I do worry that being able to talk and attend a mainstream school is wongly equated with a cure. Autism is a developmental disorder. Children do develop and the impact of their autism can lessen over time. But it does not go away. As you get older you learn coping strategies and may pass for normal. But it is a little like learning a foreign language. Some people acquire the knack of thinking in different languages. But I always have to think in English before translating what I want to say into French.
Children who lose the more blatant signs of early childhood autism may still be running that translation machine, having to think all the time about things like social interaction that are instinctive for most people. And having mastered the rules of childhood what happens in adolescence when all the rules change and everybody expects you to know the new rules?
My real problem is with people who propose a hypothetical mechanism whereby damage to the gut translates into damage to the brain. Jepson and co are happy to drag vaccines and metals into the mix and propose all sorts of potentially dangerous and clinically unproven treatments, ranging from multivitamins, B12 injections, and RNA, through to chelation and powerful drugs that impact on the endocrine system like Lupron.
Their science is bogus. Some of them are harmless quacks. Some of them are dangerous quacks. All are making money on the backs of parental ignorance. And children are getting hurt. That is where my anger is coming from.
Here’s some of the research.
As a journalist, I know why it’s not being published: It’s not enough yet.
Discover magazine did an interesting article on it, but other than that, confusing, conflicting stories and a bunch of rapid parents who believe the doctors are wrong just isn’t enough to make mainstream news.
It’s not a great story to write, “Here’s something that parents say works, but the doctors don’t know why, and they’re sort of doing research.”
But it will get out there at some point.
http://discovermagazine.com/2007/apr/autism-it2019s-not-just-in-the-head
http://www.autismndi.com/news/display.asp?content=Resources&shownews=20040721150209
http://www.eric.ed.gov/ERICWebPortal/custom/portlets/recordDetails/detailmini.jsp?_nfpb=true&_&ERICExtSearch_SearchValue_0=EJ747841&ERICExtSearch_SearchType_0=eric_accno&accno=EJ747841
Meagan
Their science is bogus. Some of them are harmless quacks. Some of them are dangerous quacks. All are making money on the backs of parental ignorance. And children are getting hurt. That is where my anger is coming from.
Thank you, Mike. I couldn’t agree with you more.
I don’t know. I know there’s a lot of junk science out there. We deliver food to several clinics in Austin that work with children with autism. We deliver food to the doctors at Thoughtful House (where Dr. Jepson works) for them to feed their own children. Dr. Jepson has an autistic son and does believe that this works. His son’s not “cured” by any means, and I don’t think he’s in a mainstream school. Dr. Jepson is doing this because he wants to see his son get better, not because he wants to make money. Thoughtful House, for the most part, offers nutritional advice and supplements, and treats truly sick children with GI problems with traditional medical care.
That said, we deliver to another clinic in Austin that’s truly awful. As soon as you walk in the door, they offer you a chelation IV. And they say things like, “Your son’s skin is clammy. That’s a sign of mercury poisioning. He’ll have to be chelated.”
I’m not happy with what I see there. But they take insurance, and Thoughtful House doesn’t, so a lot of parents go to this other clinic. Some people have said they’ve seen amazing results in a few kids at the other clinic, but it’s not being overseen by doctors, but by some woman who claims to have come up with her own cure.
I know how bad and how scary this can be for parents. I live it, too. And you’re right. I don’t know how my son’s going to change over time, and whether certain autistic traits will come back. That’s why I’m reading everything I can, trying the things that won’t cause harm and might help, and staying away from the scary stuff.
Meagan
Wait a minute….Thoughtful House? Isn’t that where Andrew Wakefield practices? Isn’t he being investigated for medical misconduct or something?
I know the “free” diets work for many but certainly NOT ALL and it certainly isn’t a CURE or this would have been proven long ago.
There is no evidence that it works for many or for few children. All there is are anecdotes which are probably indicative of placebo effects and other forms of self-deception. Anecdotes are not data, no matter how impressive they are or how many you have. Don’t believe me? See what Michael Menkin is saying about the curative properties of the Thought Screen Helmet.
There has been a single double-blind study of the GFCF diet, albeit a small one. It found no significant group differences.
yep, Wakefield’s at Thoughtful House.
Wakefield is being investigated for breaches of research ethics - failure to declare potentialconflicts of interest, submitting children to medical procedures for which there was no obvious benefit to the child for research purposes, carrying out research without ethics comittee approval etc.
The hearings are before the General Medical Council. Personally I think that Wakefield has behaved in a reprehensible manner but I think this hearing is actually about the medical establishment seeking to purge their own guilt for allowing the whole MMR debacle to unfold as it did.
I do not think Wakefield is licensed to practice medicine in Texas. He is the Director of Thoiughtful House. The problems with Thoughtful House are reminiscent of Wakeield’s behaviour in the UK. Children are subject to unnecessary endoscopic investigations for spurious medical reasons. The biopsies are then used in research without the need for IRB approval. The parents or their insurance is paying for this research. Normally, if a child is recruited as part of a properly conducted research programme all the procedures are funded by the sponsors of the research and the child has full protection from the Office of Human Research Protections.
The doctor doing the biopsies, Dr Krigsman resigned from Lennox Hill Hospital after a failed lawsuit. He failed to get IRB approval for research involing endoscopic investigations and taking biopsies from autistic children. So he took the samples anyway, claiming clinical necessity, then did a “retrospective study.”The OHRP dropped its investigation when he left Lennox hill. Now he is up to the same tricks at Thoughtful House.
Jepson may be sincere in his desire to help his son. That does not make him right and it does not justify his distortion of the facts about Kanner and the first appearance of autism in his book. Wakefield collected nearly half a million punds sterling in expert witness fees and expenses from the British overnment for a case (MMR litigation) that never came to court. Wakefield justified this fraud on the British taxpayer by claiming that he used the money to set up an autism treatment centre in America.
But it is OK. Jepson, Wakefield and Krigsman are the good guys - but only when compared to IV chelationists. Which just goes to show how bad the chelationista really are.
Meagan,
I appreciate your civility and openness in a discussion where you seem to hold a minority opinion. We all need to practice this.
Also, I don’t really have any problem with the diet, if parents want to try that.
But I would caution you about falling for the old ‘no one will fund the research because there is no money to be made from it’ line. This is a standard excuse for many alternative therapies that have just not held up to the evidence. First and foremost, the Natl Institute of Complementary and Alternative Medicine funds precisely this type of research. Also, research is constantly being done regarding ‘unprofitable’ interventions - check out any of the nutrition, social science or psychology journals.
I don’t know what causes autism. I don’t think anyone does. My gut feeling from the research I’ve done and the people I’ve talked to is that there’s a gene that connects celiac disease, austism, Aspergers and maybe even rheumatoid arthritis and thyroid — all with a connection to gluten, problems with the gut lining and inflammation. If you look at the research being done on gluten, celiac disease, gut problems, and autism, there seems to be a common thread of auto-immune disease that are helped by a gluten-free diet.
What I do know, is that for my son, it worked. My older son, who’s seven, is celiac. Perhaps the GF diet only works when the gene for celiac disease runs in the family, and other children have other causes of autism that are not helped by a gluten-free diet.
I do know that it’s a safe, free intervention if it does work, and I’m disappointed that because there are quacks out there and people who make questionable decisions medically, parents judge the diet before trying it.
My job, as a mother, is to help my children first. And then, if I can get the word out that this diet might help other children, even only a few of them, then I’m happy.
Thoughtful House, Jepson, vaccines, Jenny McCarthy, funding for research — all worth talking about (well, maybe not Jenny…), and all worth research.
In the meantime, parents could try four or five days without wheat or dairy and see if they have something real on their hands. If it works, who cares what the science is, at least for now?
Meagan
Of course, because some of us choose not to put our kids on the diet, we’re labeled as “unaware that gluten is, indeed, poison.”
http://www.glutenfreeforum.com/index.php?s=6f738e40622337a2c99785685f970d23&showtopic=38482&view=findpost&p=345865
You know, all I would like is for you GFCF mothers to leave me alone. I respect your wishes to do what you choose with your children. As I said above, I’ve made my choice.
Don’t try to change my mind. Don’t label me as irresponsible or “sad” or whatever. I’m tired of it.
When you push someone strong enough, you will not convince them to support your cause. If anything, you’ll make them dig their heels in even more. And piss them off.
Let me reiterate - My kid is not casein intolerant. My kid is not gluten intolerant. I’ve highlighted this so everyone can see this and hopefully get it through their heads. And I’m not putting him on the GFCF diet “just because.”
Besides. My kid doesn’t even like bread.
Yet again, I guess I need to say this - this is what’s wrong with the autism community. Rather than helping kids, we’re all too busy insulting each other because we won’t all do the same thing or don’t agree with each other.
My kid has been diagnosed for only a week and the amount of bullshit I’ve seen already is staggering.
Color me unimpressed.
Maybe Meagan’s sister can sponsor the research since she stands to profit off of it.
For the record, I went gluten free for 1 month because I heard it helped with migraines. Was it a coincidence that during this period I had diarrhea 5 times and ended up in the ER for abdominal pain and now have a $7000 bill to pay off? Was it a coincidence that this went away when I started eating bread and oatmeal again? I’m sure it was, since that diet is “harmless.”
I’d love to reiterate what PJ and another said above:
[b]the plural of anecdote is not data[/b]
You’ve got it. I will happily bow out. I did not mean to, ever, label you as sad or anything else — just wanted to share what helped us and what I thought might help you.
No offense meant, not trying to profit off of anyone here, not trying to cause any hurt feelings. I hope I haven’t insulted anyone.
My best wishes for you and for your son, that you find answers and peace. May you get a break from the bullshit and find some time to process everything.
Meagan
Meagen, how would I know if GFCF worked after four days or even one week? Autism is a disorder of development, not stasis. My 12 year old makes improvements day to day without questionable diets. If he makes an improvement, do I just assume it’s the change in diet?
I do appreciate your candor and your civility. You started out stating quite confidently that there is science to back up the gut connection to autism, and you strongly recommended Jepson’s book. Then, when you learned new information from Mr. Stanton, you admitted the Jepson might not know what he’s talking about, and that the science for GFCF may not be there. That’s good - you’re open to new evidence.
I am also open to new evidence, as are a number of other commenters. You can hear our host’s open mindedness when she wrote” “Until I see a network news broadcast where Charlie, Katie or Brian announce, ‘Tonight on the [insert your favorite network name here] News, a milk free and wheat free diet is scientifically found to cure Autism,’ I’m not convinced.” She speaks for me, too.
Health care fraud is an $80 billion a year racket in the US, and the bad guys know about autism. The best way to protect yourself from being hoodwinked, and your kid from being killed, is to retain a healthy skepticism about unproven treatments, and stick with evidence-based providers.
I did not mean to, ever, label you as sad or anything else — just wanted to share what helped us and what I thought might help you.
She didn’t mean to label you as sad. She just said that you ARE sad. Duh.
Just for the record, that wasn’t me. Please check your facts before you accuse me of saying something I didn’t say.
I will happily leave well enough alone, but I never engaged in any name-calling, and the last thing I would ever call the writer of this blog is sad.
Fierce, dedicated, devoted, and of a different opinion than me, maybe.
Sad, never. I have great respect for anyone who sticks with their beliefs, stands up for their children, and does their best to keep them well by following those beliefs. I believe that the diet works for me, others don’t believe that, and that’s where it stands. Leave it alone — I honestly meant no harm.
Meagan
Do you know what pisses me off more than the GFCF cult pisses off kim? Those people who villainize doctors and accuse them of withholding treatments or saying they “don’t know everything” because they apparently can’t Google like the GFCF/mercury people since it wasn’t a course in medical school.
A lot of doctors are salaried. it doesn’t matter if they see 2 patients a day or 20, so really they’d rather see 2 and actually have the time to be thorough and spend some time with their patients. If they knew of a “cure” that would keep autistic kids and their moms out of the office, and make everyone feel better they sure as hell would do it.
Doctors who work in HMOs are often told what they can or cannot recommend as a treatment, and those are usually determined by national standard practice guidelines, not the MD. If doctors recommend some treatment that goes horribly wrong and that treatment varies from the standard guidelines, disciplinary action can be taken, the can be sued for malpractice, they can lose their licenses as happened with a number of DAN practioners. Most doctors didn’t spend decades of school and training and $200K of gov’t loans to lose their practice because they decided that a bunch of anecdotes they found online or heard about from a playboy model constitute data.
Most doctors are legally and/or ethically bound to practice evidence-based medicine (as in evidence as found in peer reviewed medical journals and have study arms of more than 10 subjects in each). Some do not feel it is ethical or within the Hippocratic Oath to recommend something which has no scientific backing. Does this mean they don’t know it’s out there? No. Does this mean they can’t Google like Titte McCarthy? No. It means they have a set of ethical standards that they are constrained to because people are trusting them.
It is also very hard to recommend treatments to people when they are not FDA regulated. Sure pretty much everyone, autistic or not, will benefit from taking fish oil or omega 3s. But there is no FDA approved formula out there and there are no standards to hold the OTC supplements to. You send people to Rite Aid to pick some up and for all you know its made from fish from a toxic waste dump. There’s no one keeping an eye on the safety.
There is a shortage of family practitioners in the US. They are exhausted and overworked. They don’t have time to work against autistic parents. They’d prefer everyone prevented illness and stayed home and healthy. There’s no money to be made from autism or withholding treatment…. unless you go into some fad therapy to create a niche for desperate patients and start practicing treatments like chelation or medical marijuana or ass implants which are not covered by insurance. Then you can make a shitload. And as seen with many DAN practitioners, they still practice medicine without a license and they still make a shitload of money. So where are the ethical guidelines there?
The more shit I read from the mercury militia and the Jenny McCarthys of the world, the more I realize that people would rather blame their medical practitioner than accept their kid has a developmental disorder.
Now if gcfcdiet.com were actually interested in science, they would have a spot on their page not only for success stories, but also failures. Unfortunately I can’t find the link for those.
Also there’s no need for a “gut feeling” that autism is related to genetics. There have been dozens of studied (legit ones) which have found 5 different chromosomal markers linked to autism. There is a decent review article here. Int J Dev Neurosci. 2007 Apr;25(2):69-85. Epub 2006 Dec 20. A review of gene linkage, association and expression studies in autism and an assessment of convergent evidence. Does that help Alex or Kim sleep better tonight? Probably not.
P.S. Those studies listed in post #26 are those listed in my post #10, but apparently we’re not reading very hard today.
finally waded my way through this,
1) I am glad I live in the UK and have free universal health care
2) I have worked with children on the autistic spectrum for over 13 years, there are lots of theories out there, a few years ago it was missing enzymes. Children are individuals, some things improve things for some children. Trying to tell parents that there is one definitive solution which they must follow is heartbreaking, parents are given too much to beat themselves up about as it is
3) thank you wskrz for sharing your family with us
If you look at the research being done on gluten, celiac disease, gut problems, and autism, there seems to be a common thread of auto-immune disease that are helped by a gluten-free diet.
Correlation is not causation. Please remember that any number of factors could cause these issues. Until there is definitive long-term research, it is all smoke.
I can easily supply numbers showing that flouride in the water supply is directly related to mental retardation. Does that make it true?
Meagan, it is great that you have found something that works for your son. Maybe it really does, maybe not. I wouldn’t know, I don’t know your son. The same way you don’t know wskrz’s son.
Bill S.
Hi Meagan,
I am confused…you say your son was “cured”, yet in your About Us story on your website, you state your son was not autistic.
What, may I ask, Was your son was “cured” from?
When parent’s with newly diagnosed children come onto the internet looking for help, they are bombarded by “cure” and “recovery” stories….in reality, what they are witnessing is a maturing child with autism.
In our home, we have 3 that have become much better to the point of “recovery”…if that is a true term…all without GFCF. Just the persaverence of 2 dedicated parent’s, teacher’s, Speech, Occupational, Play, and Physical Therapists. All covered by insurance…go figure. I would not go to a facility that did not process my insurance, that makes me skeptical…just my opinion. We were offered a “cure” from a famous facilitiy..they can say they didn’t, but I had a reporter here who heard every lie they told us.
Also, Kudos to you for making life easier for those who do need the GFCF diet….I have people in my life who suffer from celiac’s and crohn’s disease…they cannot have Gluten.
I wish you well with your business, there is a growing need for your talent.
Jeanette
Gluten IS poison…..
This is an interesting article:
http://osiris.sunderland.ac.uk/autism/pshdur96.htm
For those who can’t quite grasp that something as simple as wheat can do so much damage, need to realize that the wheat of today is so genetically modified that it is almost unrecognizable:
THE NATURAL HISTORY OF WHEAT
The Roman Empire was built on Egyptian wheat, which they called “korn”. It was Einkorn, which is the ancestor of modern wheats. (In Latin, this was the earliest form of Triticum, not to be confused with what we call “corn”, which is Zea.)
It had two sets of chromosomes like human beings and is described as 2N or diploid. There were also some naturally occurring wheat that had four sets of chromosomes, or 4N or tetraploid. This was the wheat that the Roman Emperor, Eqyptian pharoahs and Christ were eating.
But what is on our table has been selectively bred over time to increase the gluten content for baking or pasta-making. Most are hexaploid, octoploid, double hexaploid, or hexaploid-octoploid hybrids. This means that they have 6, 8, 12, or more sets of chromosomes. Some of this extra DNA is coding for amino acid sequences that human beings cannot break down, including a 33-amino acid sequence named 33-MER. This 33-MER is what is causing the problem for celiac. Our immune systems are attacking this chain as though it were an invader or parasite. But this sequence is also similar to human tissue, and this inflammation can progress into an auto-immune disease. This auto-immune phase is really damaging, and largely incurable. Control is the only treatment, and life-long gluten free diet is the only control.
Or maybe this will help convince some:
http://www.enabling.org/ia/celiac/cul-wht.html
Don’t get me wrong, as a mother of four children, my heart goes out to any mother who has to walk down this difficult road and fight tooth and nail for every little bit of help out there, but PLEASE try to learn the biology behind the argument that GF/CG diet works.
I have a friend in Kentucky who is now in a wheelchair because celiac disease has literally paralyzed her due to years of damage done to her neurological system. I now have refractory celiac sprue due to years of misdiagnosis. Research into this is indeed in it’s infancy, and we are also fighting an uphill battle because, really, the real money for research comes from pharmaceutical companies, and they want to keep this buried at all costs - after all, all the spin-off autoimmune diseases that we have to take pills for every day for the rest of our lives, would be decreased greatly and that is bad news for them.
I have a dream that someday, within my lifetime, scientific data will prove without a shadow of a doubt that gluten is indeed causing so much damage and disease and that wheat will instead be used primarily as a fuel. That way, mankind wins by getting healthier, and the environment wins by us going greener.
Celiac disease is not autism.
Correlation is not causation.
In vitro is not in vivo.
And theory is not clinical evidence.
I hate articles that justify the lack of clinical evidence by stating “Although, in an effort to ameliorate the symptoms of autism in their children, parents have been investigating the usefulness of diets devoid of gluten and casein, for many years these methods have not been accepted by many orthodox medical practitioners. This is largely because there has been no hypothesis that has been sufficiently able to combine all the relevant evidence into a single, comprehensible series of events.” If it really works and the data is there to prove it, any decent scientist/MD/biochemist could come up with a hypothesis. If the results are that astounding, journals would not reject a study showing vast improvement because of a weak hypothesis. If you look at other mental illnesses: bipolar disorder, schizophrenia, ADHD, generalized anxiety disorder - all purported mechanisms of the illness are simply theory and hypothesis. Yet thousands of studies have been done on treatment efficacy and there are loads of clinical data. Enough with the excuses.
You may have missed the part where I said “Research into this is indeed in its infancy”. Even my own family doctor, who is in her 40’s at most (certainly no old timer by any means), admits the only thing doctors learn about celiac disease in medical school is to look for it in children with distended bellies….. The medical establishment is woefully behind in the game when it comes to teaching current information on gluten intolerance.
I just think it would be sad it 10 years down the road (which my doctor believes will be the epiphany and an explosion of studies will prove beyond a doubt), that those parents who were skeptical and dismissed the emerging theories as crap will be kicking themselves in the ass that they have missed the window of opportunity to be a pioneer in the treatment and management of autism.
I just think it would be sad it 10 years down the road (which my doctor believes will be the epiphany and an explosion of studies will prove beyond a doubt), that those parents who were skeptical and dismissed the emerging theories as crap will be kicking themselves in the ass that they have missed the window of opportunity to be a pioneer in the treatment and management of autism.
I can’t help but wonder how many parents, ten years down the road, will still be grieving for children who died because of these “cures”. There is a reason why research takes time - I wouldn’t bet my kid’s life on an unproven cure, why would you?
Being a pioneer is nice, when it’s YOUR life you’re dealing with.
Dying from a gluten free/casien free diet? Are you for real? You just proved you know absolutely nothing about gluten and/or the diet.
I recovered mine and the one I adopted in less than a year. I guess its all about the choices we make. If someone tells you how, and you still don’t want to do it, well that’s your choice today.
Heidi
After my son got diagnosed with autism, I found out about GF/CF and the leaky gut theory. I was highly skeptical about the whole concept, but curious at the same time. I talked to my son’s pediatrician and he told me that if my son had any food intolerance, he’d be suffering from diarrhea and other problems. Thing is, my son is very healthy and never has bowel problems, except for the once-a-year stomach flu that goes around in his preschool. Still, we tested my son (in our regular/non-quack clinic lab) for allergies, candida, Igs etc and the results were absolutely normal and healthy. My son does not act “crazy” or in pain, his behaviors are mild, he’s a happy, sweet kid. I just didn’t see any reason to do this diet, “just because”. Maybe if he had intestinal issues I’d give it a try, but that was not the case.
I don’t have a child with autism, I don’t even know one. What I have to say is those that criticize her methods, shame on you. It’s what’s working for her son. I would think with all the obstacles you have to overcome in your life you would applaud her for getting out there and screaming for attention to autism, that you would applaud the progress she’s making with her son because progress isn’t always there with these kids. Quit attacking each other, get over whatever bitterness you have because someone else has a child that has progressed more than your, help each other. The kids need people to fight for them, she’s out there doing it. Yes, she has a lot of money but so what she still has bad days with her son, she still has days she blames herself. It’s funny people always want someone to blame for the diversity in life and here people are saying she isn’t fit to be an advocate, her methods are crazy, she has too much money, her boobs are too big, to be someone to bring attention to the cause. I applaud her for stepping out and bringing attention to this. I’m not saying you should do so, but you also don’t have to try and tear her down just because of what she did for a living, it’s about who she is. A mother with a son that has autism…..
Dying from a gluten free/casien free diet? Are you for real? You just proved you know absolutely nothing about gluten and/or the diet.
You just proved didn’t read about how my gluten free diet landed me in the hospital.
I did not see the Oprah show which featured Jenny McCarthy. I wish, though that I had. My question is, did she present a Gluten-Free diet as a “cure” for autism, or did she say that it has greatly improved her child’s life? There is a definite distinction between “curing” and “managing” a condition.
I have a condition which has undergone a multitude of names and a barrage of skepticism. Gluten Ataxia is perhaps the best to date. I was first told that I have Neurological Celiac disease, and I dismissed the condition because I had only one of the three “hallmark” Celiac antibodies elevated and my small intestine biopsy was negative. It wasn’t until my endocrinologist, of all physicians, explained to me mechanism of injury and the importance of a strict Gluten-Free lifestyle in order to control this condition.
Gluten contains a protein called Gliadin. Antigliadin antibodies are one of the “hallmark” bloodtests currently used to diagnose Celiac disease. It is not the only one, and is a very “general” test, at that. Hence, the reason why I dismissed the diagnosis. Research done in the United Kingdom, however, has established scientific evidence that antigliadin antibodies cause destruction of the cerebellum of the brain. The earliest research I can find which addresses this is in the 1960’s - I am not sure of the exact year, but can find the citation if needed. This physician / researcher was dismissed as a quack, and he chose to abandon the project. The physician in the United Kingdom was also subjected to the same criticism. He chose, however, to continue. Five years later, he published his results proving “causation” between antigliadin antibodies and Ataxia due to the destruction of the cerebellum. The cerebellum contains a high concentration of cells called Perkinje cells. These cells rely on gliosis due to a particular protein found within them. Gliadin - the protein found in gluten - so stongly mimicks these proteins that the body cannot diffentiate between the two. When this happens, the autoimmune response attacks the Perkinje cells in the cerebellum along with the Gliadin found in Barley, Rye, Oats (most types in the US) and Wheat. Through Magnetic Resonance Spectroscopy - which shows images of neurological activity vs. Magnetic Resonance Imaging which shows an overall very detailed structural film - this physician proved that the ability of the cerebellum to establish a fluid neurological flow in persons with Gluten Ataxia was markedly diminished as compared to persons who were asymptomatic and did not have elevated antigliadin antibodies.
I live a Gluten-Free lifestyle. That is very different from having a Gluten-Free diet. I had to sell in a yard sale many items which may be contaminated with Gluten. I used this money to purchase new, albeit less, items. All of my Teflon-coated pans, which may contain trace amounts of gluten within the “nicks” in the teflon were sold, and I purchased a smaller set of stainless pans. My breadmaker, toaster, even my blender all went, as well. With regard to discarding these items, I admit that I was a zealot. The possibility of further damage, however, frightens me. I went from being a strong, extremely coordinated Physical Therapist owning my own outpatient practice - treating children, no less - to someone with so much neurological damage that I am in a wheelchair. Me - the “strong one” in the family! I use Gladware or Ziploc disposable containers for my food, and I also have two or three Rubbermaid containers that are marked -in permanent ink - “GLUTEN-FREE”. I do not have wooden spoons, nor do I have a wooden cutting board. It was painful to abandon my Pampered Chef wooden spoons - one of the few things I could afford from them! I am a consummate label-reader, and I had to work to educate myself with regard to potential “hidden” sources of gluten. I can tell you that in my experience, it tooks months and months before I became adjusted to this lifestyle. I cannot afford $6 a loaf bread, but I CAN afford Bob’s Red Mill mixes, and I don’t have to make the entire package at once. My family cannot tell the difference AT ALL between Gluten-Free pancakes and “regular” ones - the same goes with brownies, muffins, breads that I make and pasta. For me, it all boiled down to being doggedly determined to control this awful condition I developed, and to adhere to a strict Gluten-Free LIFESTYLE.
With regard to a Gluten-Free or a Gluten-Free / Casein Free lifestyle “curing” autism? I am very skeptical. I don’t believe that there is a currently a cure. With regard to “controlling” it? I have seen the results in the children I used to treat. When a GF or a GFCF lifestyle was in its infancy as a control for autism, I was the world’s biggest skeptic. I CERTAINLY was not a proponent. When parents would question me with regard to it, I would tell them that I saw no scientific evidence proving its efficacy. After witnessing the difference in child after child whose parents strictly adhered to this lifestyle, my cynicism began to wane. Have I seen scientific evidence that this “cures” autism? NO. I have yet to see that anything “cures” it. Have I seen scientific evidence that it “controls” it? I’d say that it is limited. Have I seen the positive effects in children that strict adherence to the GF or GFCF LIFESTYLE - not just alleviating bread and milk - causes? Beyond a shadow of a doubt.
Living a GF lifestyle is not easy. I will be the first to tell you that. It is remarkably inconvenient, particularly within the first six months. The learning curve is a pain in the butt. As I continue, however, it has become such the “norm” for me that it is remarkably easier. Not fun, but easier. It never will be fun, and in my opinion, it will always be inconvenient. For parents placing their children on this lifestyle, I believe that it is excruciatingly difficult in the beginning. I have seen that. The desire for tangible results to occur more quickly than they do is very high - and understandably so. In my clinical experience, I saw that it took 6-8 weeks of a diligent GF or GFCF lifestyle before results began appearing. The results after 3 months - then 6 months, however, were remarkable. It was difficult for me to believe that I was treating the same child. Their ability to accept verbal cueing was greatly improved. Their socialization skills began emerging, and I was able to connect with this beautiful soul that I KNEW was in there on an entirely different plane. Sequencing was improved ten-fold. Perseverance was unbelievably diminished. Most began talking, and all began communicating - even in sign language! If I hadn’t seen it for myself - and experienced it clinically - I would STILL not believe what I have just written.
Are these lifestyles going to have a positive effect on every child with autism? Absolutely not. There is no panacea for controlling this condition. Is it worth the investment to educate yourself on living the LIFESTYLE, not just restricting milk and bread, then trying it for 6 months? I believe so. That decision is up to each parent. There is no guarantee it will work. Without diligence with regard to label-reading and preparation, it will fail. Period. It does not have to be exhorbitant financially, but the educational investment is outrageously high. It is not to be entered into lightly. It requires continued updating, phone calls to pharmaceutical companies to ensure that medications are Gluten-Free and a whole host of other educational investigations. Fortunately, there are resources readily available - at no charge - through the internet and through other organizations. These make the transition period and the continued educational necessity much less difficult.
My heart goes out to parents who have children this condition. I reluctantly use the word “horrible”, but in my PERSONAL experience I have found that to be the case. My neice and nephew both have autism. One is profoundly affected, the other moderate-to-severely affected. A GFCF lifestyle has positively impacted their lives. If it had not, I would have suggested that their parents discontinue it. The amount of work, time, attention and dedication to these children that their parents display makes me dizzy. I cannot imagine the effort involved in raising a child with autism. The amount of love involved? I have witnessed that throughout the spectrum. My hope for parents who try a GF or GFCF lifestyle is that they experience positive results. It may be much like Lorenzo’s Oil - we don’t know why it works, we just know that in some instances, it works.
Your argument is terribly flawed. You seem to be saying that you are too busy concerning yourself with therapy and traditional methods to consider alternative methods. If you do not have faith in the diet that McCarthy endorses, I can respect that. We don’t need to believe every crackpot theory that appears on the internet. But it seems that you think it works, but that you can’t buy the $6.00 milk to support the diet.
This is your child’s health. If you think this diet will work, get a paper route for extra money. Sell your computer, invest the proceeds, and use that money to buy the expensive milk. It seems like you are just angry that McCarthy has more money than you. We all wish we had more money. But we should try to do the best with what we have.
Good luck with your child.
I’m not saying you should do so, but you also don’t have to try and tear her down just because of what she did for a living, it’s about who she is. A mother with a son that has autism….
I think you missed Kim’s point entirely. Maybe you should read it again.
good lord these gluten people are like alien pod people, they just keep coming. talk about being blinded by one’s own paradigm.
But it seems that you think it works, but that you can’t buy the $6.00 milk to support the diet. This is your child’s health. If you think this diet will work, get a paper route for extra money. Sell your computer, invest the proceeds, and use that money to buy the expensive milk. It seems like you are just angry that McCarthy has more money than you. We all wish we had more money. But we should try to do the best with what we have.
HAHAHAAHAHAHAHAHA.
HAHAHAHAHAHAHAHAHAHAHAHAHAHAHA.
She’s not jealous about the money, she’s jealous about the boobs.
boob? you mean those hollywood airbags?…i thought they were personal safety devices, but i stand corrected
I don’t believe that my opinion nor reply is blinded by my own paradigm. I stated irrevocably that if a GF of GFCF lifestyle does not help your child, discontinue it. I also stated that I do not believe that it will help every child with autism.
As for being an alien pod person? The jury is still out.
Wait, is there casein in Jenny McCarthy’s boobs? That changes everything!
And when did this become a discussion board for celiac disease? Yup, if you’ve got that, you should avoid wheat and all, but that’s not where this discussion started. And you’re wasting space at a bunch of people who don’t give a shit about it. DIFFERENT DISORDER.
We can play the causation/corrolation game all day:
Example:
Jenny did an ad for Weight Watchers. I also know a woman who’s son is autistic and who’s mother is in Weight Watchers. Holy shit! They’re spreading autism at WW meetings! Call the press! Start a website to educate the masses!
I’m just here to find out how Alex is doing. Say “hi” to the little guy for me.
“You just proved didn’t read about how my gluten free diet landed me in the hospital.”
Oh I read it. Just as you are skeptical about the diet, I am skeptical about how exactly did this diet land you in the hospital. I would love to be enlightened….. This diet is one hell of a pain in the ass, I don’t wish it on anyone, but one thing this diet is NOT is dangerous……
As I re-read my post, I also hope that you gathered the one of the intents of my message: it HAS been established, and scientifically proven, the gluten causes neurological damage. Perhaps there are more neurological symptoms that gluten causes that have not been discovered or there have been studies have been dismissed by the medical community as “quackery” and therefore have been abandoned, as well. It may be that neurological transmission in children with Autism is affected by either gluten or casein. It may not be. My hope is that continued funding to find ANY help for children with autism will become a priority.
I don’t believe that this has become a discussion board for Celiac disease. It’s parent topic, however, lends discussion with regard to a gluten-free lifestyle.
I guess the point I am trying to get across is that we are all fully aware that celiac disease is NOT autism. No brainer there.
But:
Celiac disease is directly linked to gluten intolerance.
It is also becoming more and more apparent that autism is also linked to gluten intolerance. Is GF/CF a cure? Of course not. Is it a piece of the puzzle? I think that is being proven more and more each day. Maybe it is a whole series of events strung together that throws people into the world of autism. Vaccines/mercury causing leaky gut for those predisposed, gluten intolerance causing leaky gut, either way, gliadin is getting into the nervous system of these children.
Celiac disease is really only one small, tiny piece of the puzzle with regards to gluten intolerance. It’s the iceberg theory - those properly diagnosed are just the tip of the iceberg. The huge mass underneath the surface are those that not undiagnosed and have a myriad of diseases to show for it.
I also think that attacking Jenny McCarthy for coming out and trying to be an advocate for children with autism is totally counter-productive. The fact that she is a former Playboy bunny has absolutely NO relevance whatsoever. All it shows me is that there is so much anger in the autism world it really astounds me that one parent living with autism could be so condescending to another parent dealing with the same issue.
I don’t have a child with autism, I don’t even know one. What I have to say is those that criticize her methods, shame on you.
Teresa, until you know what you’re talking about you should quit talking.
No-one criticized HER METHODS, she was criticized for making the claim that her methods were A UNIVERSAL TREATMENT. Sheesh, what the hell is the problem in this country today where people can’t even READ and COMPREHEND?
Dying from a gluten free/casien free diet? Are you for real? You just proved you know absolutely nothing about gluten and/or the diet.
convinced, I’m thoroughly convinced that you are out of your element. Many of us here are parents with challenged kids, some are even medical professionals. So, I guess you know more than all of us combined, right? ANYONE can die from an improper diet, especially one that may have adverse effects on digestion. Get your head out of your ass, please. THEN you will truly see the light.
but one thing this diet is NOT is dangerous……
OOPS! sorry, just read your last comment. Too late for you. Where the hell is your justification for suggesting it isn’t dangerous? Let’s see your clinical trials, your data analysis. WHAT? You don’t HAVE ANY??? OK - then STFU.
I also think that attacking Jenny McCarthy for coming out and trying to be an advocate for children with autism is totally counter-productive.
Oh, shit. I’m sorry, you are really too far around the bend at this point. This woman merely stated that Jenny was not a spokesperson for HER son. As I would state as well. Jenny is a mother with an autistic child. Do ANY of you know how severe that child’s autism is/was? What the treatments were? Yet you want to compare the two and mark them same? Please, please - stop being a naive ass. Kim cares more for her son than herself - of this I have NO DOUBT. Just because she doesn’t buy into the GFCF diet theory (because THAT’S ALL IT IS RIGHT NOW PEOPLE - A THEORY) doesn’t mean she doesn’t care about her kid. It ISN’T about money, and is ISN’T about propoganda. It is about safeguarding your child from all of the bullshit that gets passed around these days as “treatment”. And this woman has EVERY RIGHT TO DECIDE WHAT IS BEST FOR HER CHILD AND HER FAMILY - so get off her back.
Bill S.
I am horrified to read that pioneerPT sold IN A YARDSALE items INFECTED WITH GLUTEN to UNSUSPECTING INNOCENTS.
What a creep.
Actually, no, I didn’t sell items infected with gluten to unsuspecting innocents. I placed labels on each item that indicated why I was selling them. They all stated that they had gluten-containing foods cooked in them.
Before diving into name-calling, perhaps it would be more kind to ask for clarification.
I sincerely hope nothing but the best for your children. The amount of venom here is poisonous. Obviously, those diagnosed with celiac disease are far ahead of the average person in regards to studies of gluten and the damage that it does. If you do not wish to benefit from the years of knowledge that we have had no choice but to acquire, then so be it.
For the sake of your children though, I sincerely pray that the people here on this site are not indicative of parents of autistic children in general. If that’s the case, then autism is destined to remain a disease of mystery. Closed minds will get you nowhere.
Right. Gluten is poison. But only to people with celiac disease. Peanuts are “poison” to some people, too.
Once more, with feeeling: Autism is not celiac disease.
For the sake of your children though, I sincerely pray that the people here on this site are not indicative of parents of autistic children in general. If that’s the case, then autism is destined to remain a disease of mystery.
Where oh where is there ANYTHING but anecdotal evidence to suggest the connection YOU are making?
Please - point it out to us, give us a link. Anything where there is rock-solid proof of the connection between celiac disease and autism, or a verifiable connection between autism and gluten/ciasen.
That’s all we’re waiting for - and if you can’t provide that, then you should stop insisting there is a connection. I mean, why isn’t it vaccines? Or flouride? They are as plausible as the tripe you are trotting out. Show us the FACTS, verifiable and repeatable.
Bill S.
[...] Sorry Jenny McCarthy, you don’t speak for me (MommyHood) [...]
Tried to attach links to medical articles. You must have me blocked out.
Okay, that went through, will try again. (Have to gather them together again!)
I am REALLY surprised that anyone who has a child with autism wouldn’t be open to at least trying something that certainly won’t hurt their child, and may possibly help. Something that is incredibly simple and non-invasive.
GFCF does not have to be expensive…….it’s just a healthy diet with meat, veggies and a few substitutions. Why make it sound so incredibly hard?
Here is by far the best link I have:
http://www.autismndi.com/news/display.asp?content=Resources&shownews=20040721150209
I’m searching for a cure for Indigoism (also known as Smurfjunctivitis).
Holy shit, people. I lose my Internet for a day and find out you all have been using my blog for a pissing contest for your cause(s) while I’ve been gone.
I’m half tempted to tell most of you to go take your arguments and yourselves to another corner of the Internet and argue amongst yourselves elsewhere.
The other half of me is tempted to just let you all continue to make asses of yourselves. You’re all doing a bang up job already.
Tip number 347 for people who want to get hits on their blog - write about autism.
Even better, write about autism and “cures.”
Now I’ve gotta play catchup….
PS - Karen in Toronto, or “convinced” - I don’t have a problem with your gluten-free diet. If you’ve got issues that cause you to be on that diet, then that’s your private matter.
I would expect you to have the courtesy to have the same for me and what I choose for my family.
If you continue to bombard my site here with messages as you have today, I will delete them.
This is my site. If you don’t like it, you can take your hockey puck and go home.
And apparently, I have to say this again. And it’s getting time to be nasty, as I’m losing patience with those who are hijacking my blog for their arguments.
I’ll put this in bold so you all get it. I’m seeing that reading comprehension is very poor today:
This post was not about the Gluten Free diet. It was about Jenny McCarthy. You have all made this into YOUR issue. I stated my OPINION like so many other people on the Internet have and do on a regular basis.
I’m getting really pissed off with the number of people that are faulting ME with not even wanting to try the diet. Get off your high horses and mind your own fucking business. If the diet works for you, hooray. I’m thrilled.
Now, I’ll say it again.
GFCFers, leave me and my blog the hell alone. Go hang out in your little corner of the Internet and stay away from mine here.
I really, truly, wish both you and your children well and sincerely hope that major developments come your way, just as they have slowly but surely in the celiac world. Celiacs have had to (unfortunately) accumulate a vast knowledge of gluten and the damage it can cause, because it is the primary source of our auto-immune disease. I am not trying to be smart by saying that we have delved much deeper into the gluten connection to other various diseases since we tend to get “clusters” of auto-immune diseases as a result of gluten.
If, by attempting to share that knowledge, I have offended anyone in any way, please accept my sincere apologies. It truly was an attempt to enlighten parents in the autism world as to the possibility of a connection. I offered the links that Bill so eloquently asked for (the last one is by far the best compilation of published medical articles), so if any of this information has helped at least one parent decide there is a possibility of a connection, and as a result tries it, then I am happy.
And yes, Mal. I am jealous about the boobs.
It’s all about the boobs.
“Let food be your medicine and medicine be your food.”
Hippocrates (c.460 - 400 BC)
p.s. I’m jealous of the boobs too! After four children (last pregnancy being twin boys, mine are hurtin’!
Good Bye and God Bless!
Boobs? Is Peejay here?
Yes indeeily she is!
http://wskrz.wordpress.com/2007/09/21/sorry-jenny-mccarthy-you-dont-speak-for-me/#comment-1547
Honestly, some people’ll just pop their boobs out at the slightest opportunity.
Wow, I didn’t know Jenny McCarthy’s child had autism.
“Instead of being interested in helping our children, we’re too busy going at each other throats.
And insulting each other at the same time.”
But that is exactly what you did!
Jenny did not claim to speak for you or your child. She just came on national television to say “Hey this works for us, it may work for you too”.
Who cares about her past and her profession, she is simply a mom struggling with an ill child and wants to contribute to helping other families going through the same thing. God Bless her for it.
No, she came on TV to talk about her child AND her book. Which is why she’s been on every single talk show. She has a publicity machine and that’s what’s got her all over the press right now.
When she comes on months before her book is released and says, “I am coming back in a few months with this book, and I am planning on using my big, giant, controversial mouth to blow the lid off a lot of things related to autism to give moms hope,” is that promoting the cause of autism or her book? Really?
It’s spin. Old fashioned publicity spin. It got people talking. After she was on Oprah, it got people talking (and yelling) more. Just look at my (and many others) blog hits and the accompanying shitstorms for proof of that.
I believe someone about a million comments back said it right - Jenny is in the public eye. If she wants to make comments about a cause out in the public as well, she’s wide open to remarks from the public too. Ask Tom Cruise. I’m sure he can tell you all about that.
I’d also bet that Jenny’s not wanting to be a “victim” as I’ve seen so many people have placed in the position of (”Oh, poor me! My child has autism! Feel sorry for me!”). Who is the true victim of autism here - her or her kid?
And I’m sure her new business is doing great since Oprah.
[...] other than a community and more like a battlezone. I’d like to thank all of you for the warm welcome you gave me after my son’s diagnosis just the other [...]
wskrz,
I spent 1 1/2 hours on the phone yesterday with a man I have never met. No, I am not a phone sex operator, but a mother with 5 Autistic children.
He yelled in my ear for about an hour of the phone conversation. He was