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« Autism and the Gut: Houston Study | Main | Harris Coulter Was a Brave Visionary »

Autism and Gut Issues: But Dr. Nancy Said There's No Connection!

Wrong-Answer By Anne Dachel

In Aug. 2009, I wrote the story, Autism Experts Only Seem to Know "What Doesn't Work" .
That was about the news coming out at the time about a Mayo Clinic study on gastrointestinal problems in autistic children.  Contrary to what many parents were dealing with, experts couldn't find any significant gut issues in autistic children.
 
At the time, a lot of top news sources made up a chorus all saying the same thing:
KIDS WITH AUTISM HAVE NO MORE GASTROINTESTINAL PROBLEMS THAN TYPICALLY DEVELOPING CHILDREN DO.  
 
It's hard to challenge sources like Pediatrics, the journal of the American Academy of Pediatrics, the New York Times, WebMD, and NBC's the Today Show.
 
I remember Dr. Nancy Snyderman on the Today Show telling us: 

"The findings are important because they really dismiss that link between the gut and these neurological problems that we see in autism.  And primarily they were looking for problems like mal-absorption and inflammation. These findings are very conclusive: There is no link between illness in the gut and the signs and symptoms we see in autism."
 
And in Oct. 2009, WIRED ran the story, An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All .  In an amazingly one-sided article, Amy Wallace raised Dr. Paul Offit to new heights of expertise and vilified anyone daring to challenge him, all the while blindly ignoring the disaster called autism:

"In August, for example, Pediatrics published an investigation of a popular hypothesis that children with autism have a higher incidence of gastrointestinal problems, which some allege are caused by injected viruses traveling to the intestines. Jenny McCarthy's foundation posits that autism stems from these bacteria, as well as heavy metals and live viruses present in some vaccines. Healing your child, therefore, is a matter of clearing out the 'environmental toxins' with, among other things, special diets. The Pediatrics paper found that while autistic kids suffered more from constipation, the cause was likely behavioral, not organic; there was no significant association between autism and GI symptoms. Moreover, gluten- and dairy-free diets did not appear to improve autism and sometimes caused nutritional deficiencies. "

Suddenly however, it seems the medical/scientific community hasn't closed the door on the possibility of a relationship between GI problems and autism

CALL DR NANCY!



On Mar 29, 2010 ABC13 in Houston had the story, New autism study in Houston (SEE VIDEO HERE) .  The story started off saying, "Doctors have suspected a link between autism and digestive problems for years. Now Houston researchers are testing a drug with such potential, that the Food and Drug Administration has fast-tracked it. Scientists believe it may improve autistic behaviors."

"Doctors have suspected" and the FDA is fast-tracking it?  This got my attention right off.  Wasn't this supposed to be a dead issue?  Hadn't the entire medical community already lined up against this? 

On ABC13, we're told about Zoe, a five year old autistic girl who wasn't very verbal but now is "so different."  She's talking after taking part in trials for an experimental autism drug that helps digest food.  Or as ABC13 put it, "Doctors believe many children with autism can't digest protein, which would cause them to lack amino acids that are critical in producing neurotransmitters for the brain. They believe resolving the digestion problem may help the autism."

And they're testing this drug all over.  ABC13 reported, "Houston is one of 12 study sites and the study involves collecting stool samples from the children. In early studies of almost 500 children, few had side effects. Results will take about a year. But [Zoe's mother] believes she's seeing results already, and she hopes the study helps other children."
Mar 4, 2010 Science Daily tried to make believe that all this is related to genetics.  In Gene Variant Associated With Both Autism And Gastrointestinal Dysfunction HERE, we read, "A study led by researchers at the University of Southern California (USC) and Vanderbilt University have identified a specific gene variant that links increased genetic risk for autism with gastrointestinal (GI) conditions."  

So autism may be related to GI problems, but it's all of course genetic.  I love the line, "While gastrointestinal conditions are common among individuals with autism, researchers have long debated whether co-occurring GI dysfunction represents a unique autism subgroup." 

Suddenly GI problems are common?   Science Daily went on to quote principal investigator Pat Levitt who said, "Gastrointestinal disorders don't cause autism. Autism is a disorder of brain development.  However, our study is the first to bring together genetic risk for autism and co-occurring GI disorders in a way that provides a biologically plausible explanation for why they are seen together so often."  "Co-occurring"?  Does that mean that there are two genetic disorders that just happen to hit kids at the same time?  So have there always been autistic kids around who also had chronic diarrhea/constipation/food allergies?  Have doctors been missing these sick kids all these years?  

Without ever using the word environmental, Science Daily said, "The study brings researchers closer to understanding the complex genetic risks for autism. However, further research is needed, as different combinations of genes are likely to result in different types of autism features."

Here's what Lisa Jo Rudy had to say about Science Daily. On her blog, Autism About she wrote, "If I'm understanding this finding correctly, on the one hand it validates claims by many members of the autism community that there really is a correlation between autism and GI disorders. On the other hand, though, it tends to invalidate some of the theories for WHY such a correlation exists. While many have insisted that the correlation relates to measles virus left in the gut after the MMR vaccine, this study suggests that the correlation is purely genetic."

So no matter what researchers discover about autism, it's all just defective genes.  While the link between autism and GI issues is finally being taken seriously by researchers, it's no reason to worry.   But  somehow I don't think it's going to fly.  We've been told that autism has always been around, just misdiagnosed.  Now are we to believe that these kids have also had gut problems that doctors failed to recognize? 
 
You'd never know that there was a Mayo study disproving all of this. 
 
 The new product to treat GI distress in autism, Curemark, is being tested on kids all over the country.  (HERE)   Their site said that research has shown that 70% of all autistic kids along with children with PDD could benefit from their new drug to treat stomach problems.  I read, "Curemark has identified a series of biomarkers that determine which children with autism and PDD  may have digestive deficiencies underlying or as a major component of their disease. Curemark has carried out an extensive clinical analysis to identify the role of secretory malfunctions of the pancreas and/or gastrointestinal tract as they may be linked to the severe behaviors seen in children with autism."
 
The trials on the new autism-GI drug Curemark are being conducted at top universities.  And if you scroll down on the trial information, (HERE) you'll find among the publications cited:
 
Enterocolitis in children with developmental disorders.
http://www.ncbi.nlm.nih.gov/pubmed/11007230?dopt=Abstract
Authors listed: Wakefield AJ, Anthony A, Murch SH, Thomson M, Montgomery SM, Davies S, O'Leary JJ, Berelowitz M, Walker-Smith JA.
 
Does any of this make sense?  Andrew Wakefield is lead author?
 
Suddenly, a doctor recently denounced by the medical establishment is named as a key player in autism research.   Obviously health experts hope that the trusting public has a very short memory.
 
Maybe a recent piece in BusinessWeek says it all.  They published the story,
The Hunt for an Autism Drug in Jan. First-off we were told, "Armed with fresh medical insights, drug companies are redoubling their efforts to address the disease's complex causes."
 
I'm sure BusinessWeek covered this because of the great profit potential for any drug that could be used to treat hundreds of thousands of American children:

"From a drug-industry standpoint, the demographics of the disease are also compelling. Diagnoses among children jumped 57% from 2002 to 2006, according to the Centers for Disease Control & Prevention in Atlanta. Roughly 1 in 110 8-year-olds in the U.S. is on the autism spectrum. Just as interesting to drugmakers is the fast-growing population of adult autistics who can't be helped by the kind of intensive behavioral therapy that sometimes works on children, because their brains lack the same plasticity. One decade from now there will be seven times as many autistics entering the adult-services sector as there are today. The disorder already costs the U.S. about $35 billion per year for special education, medical care, and assisted living. If the drug industry can devise better treatments, families and society will find a way to pay."

It's hard to reconcile this imagine of an exploding epidemic of autism as shown by BusinessWeek with the dismissive attitude of officials at the Centers for Disease Control and Prevention who've never once used the word "crisis" when talking about autism and waste millions on autism gene studies.  Maybe the incentive of a blockbuster drug to trreat autistic kids is the real issue.

BusinessWeek makes it clear that there's a real pressing reason to finally get serious about autism: We're about to be flooded with a population of autistic young adults we are totally unprepared for. 

Their article had these graphs (click to enlarge):

Businessweek graph 
Maybe the market will determine the future for autism research.  Countless studies telling us NOTHING will lose their credibility when research that really addresses autism provides help for children.  This may be a real turning point.  It sounds like someone is actually able to do something to improve the health of autistic children.  It's hard to imagine that it's really happening.
 
Are we to simply accept that the medical/scientific community suddenly recognizes that autism is related to GI disorders, despite having previously denied a link?
 
Will anyone go back to the experts who denied all of this and ask them for their reaction?
 
What are the chances that when the evidence overwhelms them, officials will do the same about-face concerning the link between vaccines and autism?
 
 Do any of these people have any shame?
--
Anne Dachel is Media Editor of Age of Autism.
 

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I heard something on Fox News today April 11/2010 that took me back to this article.

Izzey Rosenfeld (why I continue to listen to him every Sunday since he is so pro - vaccine, I do not understand - I guess I need to start going back to church)

But this Sunday morning he said that Accutane a drug for severe acne -medical studies have found Accutane can cause severe gut disease including Crohn's and several other known inflammatory gut diseaes - in people that have had no signs of these gut diseases before taking it.

Accutane can do this but of course a MMR vaccine could not possibly do this.

"I do not believe that his issues have anything to do with the MMR vaccine, however, b/c he has had zero childhood vaccines."

Another mom with an unvaccinated autistic child! (waves)

I'm curious to know if you used Tylenol (or any other drug that contains acetaminophen)at anytime during pregnancy or while lactating, or if your son was ever given Tylenol for pain or fever suppression.

There is emerging science that suggests a link between fever suppression/analgesic use and autism.

This story validates Adriana Gamondes Py=PxY.

Amy,
I had the MMR in the 90's too. I have had autoimmune issues ever since. The doctors told me it had nothing to do with the vaccine and I believed them. Did you have any reactions to it yourself?

My 3 1/2 y/o son was diagnosed with moderate level autism in May of last year. He has oral aversions, failure to thrive, and gut issues (malabsorption, pain with certain foods, etc.).

I do not believe that his issues have anything to do with the MMR vaccine, however, b/c he has had zero childhood vaccines. I had the MMR in 1993, but we conceived my son in November of 2005, so I do not think the measles virus in his gut would be a problem.

I did have the Rhogam shot at 28 weeks PG and was induced with pitocin (15 hours). I had a failed induction which ended in a non-emergency c/s. I believe these things, especially the Rhogam shot, could have led to his overall health issues. He has had GI issues, but not neuro issues (i.e. autism), since birth.

So now that Big Pharma thinks they MIGHT have a new magic bullet for the gut in autism, "researchers have known for years that there is a tie between the gut and autism," Dr. Wakefield is trashed as a villain because of a study that never concluded that the MMR vaccine caused autism, on the eve of his study that included damning evidence about the Hepatitis B vaccine...Easy to figure out, it makes perfect sense. Follow the money.

Sorry, no magic bullet, no big news here - just another possibility of a new side-effect laden drug, sold by the powers that be as a magic bullet. I wouldn't get suckered into looking down the barrel of any Big Pharma gun for a magic bullet. And I'd look at what happened when we all bellied up to the vaccine bar.

Fabulously written article. Thank you.

Awesome article!! Thank you! Without this forum our voice would not be as loud.

This truely may be the begining of the road to full recovery for us all!!

Love the article! I've been using digestive enzymes for my PDD NOS 14 year old for about four months now. I began looking for help for him when he was diangosed at about age 8, a relatively late diagnosis but his symptoms were not "classical autism". I ended up turning my back on the doctors and pharmacological measures when he was prescribed Strattera and became suicidal by age 10. I turned to diet instead, trying something called a FAILSAFE diet by a lady in Australia called Sue Dengate. It advocates cutting out salicylates, amines, artificial colours, flavours and preservatives, as well as flavour enhancers. This brought about a rapid, sustained improvement in his behaviour and we learned that his big trigger seemed to be an inability to absorb salicylates in food, followed by moderate amines. A small bowl of fruit salad or even an apple would cause the classic "autistic meltdown" that would last for days. Before I heard about enzymes, we were sticking to purely dietary exclusion of foods that seemed to trigger his meltdowns. Even with an increased body mass and adult size, his tolerance did not improve as he grew. I ended up trying enzymes on a whim, to see if it would make any difference. I bought basic over-the-counter digestive enzymes (we've tried three different brands now and all seem to work) from the local chemist and started giving them to him with meals and introducing foods that were previously known to cause behavioural consequences. I could not believe the results myself! He went from a quite restricted diet to being able to consume anything he likes, without any behavioural consequences!!! Four months in, my son is 95% normal functioning and no one would be able to tell that he is diagnosed on the spectrum. It is more obvious to our family as we can pick up on his little traits but to everyone else, he finally looks, talks and behaves like any other kid in school and even his school work and social life have become near normal. I'm not saying it's a miracle cure but for my son, it worked wonders. I can't believe it's taken the "establishment" so long to consider and act on the enzyme issue sooner. I wish I had known when my son was younger. It would have saved him and us so much heartache!

It looks like the MET gene is being looked at in its relationship to ethyl mercury-


http://74.125.95.132/search?q=cache:q3FNQMdoxdgJ:www.autismspeaks.org/science/research/grants/research_we_have_funded_environmental_2008.php+met+gene+mercury&cd=12&hl=en&ct=clnk&gl=us
Judy Van De Water, Ph.D.
University of California at Davis
$659,100 over 3 years

Etiology of Autism Risk Involving MET Gene and the Environment

Two independent lines of evidence indicate that the maternal immune system and a functional genetic variant contribute to autism spectrum disorder (ASD) risk. Here, in a unique collaborative effort, the Van De Water lab will parter with scientists at Vanderbilt University to examine whether these two seemingly unrelated contributions may converge to define a unique ASD susceptibility. Preliminary evidence collected by the Van De Water lab indicates an association between the MET gene ‘C' type, which reduces MET protein expression, and the presence of specific maternal anti-fetal brain autoantibodies. This relationship suggests that this as a pathway for production of the maternal autoantibodies, leading to a gene x environment interaction underlying ASD susceptibility. The next line of experiments will examine the relationship in an even larger sample, and assess the functional effect of the MET gene polymorphism on immune cell activity, and to further examine the impact of environmental toxins (including ethyl mercury) on the gene expression-dependent function of maternal immune cells.

What this means for people with autism: This proposal thus brings together two initially unrelated findings (associations of the MET gene and maternal autoantibodies with ASD), and further tests specific functional hypotheses concerning gene-environment interactions, that may converge to define a unique cause of autism in some children.

Will they never stop trying to put a pharmacutical bandage over our kids physical illnesses?! I'm SICK of the stupidity allready!!!!

Joanna, I think you are on to something. But I don't believe they will ever give up the vaccines. If they find something they can sell to counteract the trouble vaccines cause, they profit twice.

Another possibility is that we will find out that there was no difference in the placebo group, it was all a "coincidence," and it will once again be another study to validate their original position that there is no link.

On the other hand, maybe we are being thrown a bone, to throw us off. If they can take credit for finding a link, they hope we will suddenly shift our belief back over to medicine and away from people who believe vaccines are the original cause. We will believe they are "doing something" and stop asking them to "do something" then suddenly there will be a vaccine for autism.

Age of Autism community, we must not stop all our education efforts now. Isn't the timing a bit too curious to trust this?

The founder and CEO of the company "Curemark" once had the following article in Med Hypotheses. So, I'd put her in the category of people that are trying with an open mind to help (although this is all I know about her). So, I don't know that just because she has a pharmaceutical company she's any different from Devin Houston who also profits from his work as good as it is (by the way Devin, thanks to No-Phenol my kids can eat their favorite berries again so we're big fans). I don't know that it is fair to call Devin a hero and her an evil profit-monger.


Med Hypotheses. 2005;64(2):312-5.

Could one of the most widely prescribed antibiotics amoxicillin/clavulanate "augmentin" be a risk factor for autism?
Fallon J.

joanfallon@aol.com

Comment in:

Med Hypotheses. 2006;66(3):678.

Autism is an ever increasing problem in the United States. Characterized by multiple deficits in the areas of communication, development, and behavior; autistic children are found in every community in this country and abroad. Recent findings point to a significant increase in autism which can not be accounted for by means such as misclassification. The state of California recently reported a 273% increase in the number of cases between 1987 and 1998. Many possible causes have been proposed which range from genetics to environment, with a combination of the two most likely. Since the introduction of clavulanate/amoxicillin in the 1980s there has been the increase in numbers of cases of autism. In this study 206 children under the age of three years with autism were screened by means of a detailed case history. A significant commonality was discerned and that being the level of chronic otitis media. These children were found to have a mean number 9.96 bouts of otitis media (with a standard error of the mean of +/-1.83). This represents a sum total for all 206 children of 2052 bouts of otitis media. These children received a mean number of 12.04 courses of antibiotics (standard error of the mean of +/-.125). The sum total number of courses of antibiotics given to all 206 children was 2480. Of those 893 courses were Augmentin. with 362 of these Augmentin courses administered under the age of one year. A proposed mechanism whereby the production of clavulanate may yield high levels of urea/ammonia in the child is presented. Further an examination of this mechanism needs to be undertaken to determine if a subset of children are at risk for neurotoxicity from the use of clavulanic acid in pharmaceutical preparations.

Great points, Anne. The idea of helping so many kids with GI issues and autism is great BUT the fact that they are using research, treatments and biomedical concepts that have been used in our community for years as well as Wakefield's research feels a bit "plagiaristic," especially as they have kicked him aside.

The other big issue is that the connection to environmental/vaccine insults is again getting swept under the rug. Curemark's MET gene theory is the piece they want to advertise as "the cause" http://www.cure-mark.com/news/genesandgiconditions.html...
but as we all know, there are pieces with a much better fit.

From the Curemark/ClinicalTrials.gov page:
http://clinicaltrials.gov/ct2/show/NCT00881452?term=NCT00881452&rank=1

Detailed Description:

Autism is currently a significant cause of disability in the pediatric population. CM-AT is based upon the observation that many children with autism do not digest protein. CM-AT is a proprietary enzyme that is designed as a powder taken three times a day. It is formulated to be released in the small intestine to enhance protein digestion thus increasing the availability of essential amino acids.

Now check that out with the correlation to the below research - a better fit than MET genes.

http://article.pubs.nrc-cnrc.gc.ca/ppv/RPViewDoc?issn=1480-3291&volume=46&issue=16&startPage=2685

"Interference with cellular metabolism by inhibition of certain enzyme systems has been shown to be the property of various organo-mercury compounds (1). Mercury has also been reported to combine with ligands of physio-logical importance such as
phosphoryl, carboxyl,amido, and amino groups."


Bull Environ Contam Toxicol. 1978 Dec;20(6):729-35.
In vitro inhibition of digestive enzymes by heavy metals and their reversal by chelating agent: Part I. Mercuric chloride intoxication.

Sastry KV, Gupta PK.

The effect of mercury on alkaline phosphatase, lipase, aminotripeptidase and glycylglycine dipeptidase in the liver and digestive tract of Channa punctatus is investigated in vitro. Mercury inhibits the activities of all these enzymes and the degree of inhibition increases with the increase in the concentration of the metal. Addition of EDTA, a chelating agent, restored the mercury inhibited enzyme activity and the degree of restoration was related to the concentration of the chelating agent.


Journal of Environmental Science and Health, Part B, Volume 15, Issue 1 1980 , pages 109 - 119
Subjects: Environmental Health; Pesticides;

The results indicate that the activities of all the enzymes examined are inhibited in intestine and pyloric caeca and digestion of proteins and lipids may be more affected by mercury than the digestion of some carbohydrates.

Bet Dr. Nancy came to that peanutty conclusion in a Jif! Damn Skippy!

This just in from the Dr. Fancy research center for children.

A medical phone survey/study has determined that there is no such thing as a "peanut butter allergy." The survey involved nearly 75 phone calls, three universities, nine Phd's, calls to several states, at a cost of 1.3 million dollars.

"Anti-peanut butter groups" have been harming their children long enough and it is now safe to make a PBJ for the whole family at any time.

Those who are behind on their sandwiches should make "catch up" sandwiches.

From the sense of what has been written by parents and professionals that have had the sense to see these gi issues as related it to their autism it seems almost certain that there is a greater genetic susceptibility to the chain of events being set off in those who end up with gi related autism. But, many of this group would not have gotten autism if certain conditions that start the process were absent. I compare it to hurricanes in an enviroment{each individual childs systen} where artifical means are the only way water temperatures are raised above 80 degrees and some of these enviroments absorb heat better than others. If the conditions are right no genetic susceptibility is needed to have a hurricane, but is much less likely to occur. In addition if these artifical means and conditions are at a high enough threshold all of us could become autistic.

Schwartz wrote, "Where there's a pill there's a way."

LOVE IT!

I personally think that they are studying all of the biomedical treatments. Then, when everything blows up on BigParma and the vaccine program is destroyed, they won't go bankrupt - they'll market their own chelation meds, special antivirals, Rx vitamin supplements, etc. - all of the stuff we've been doing for years. Then it will just cost us more, they'll get rich off of it, familes who listened to their peds and called us foolish for spending our money on biomed will start using it because it will be mainstream, and the CDC and AAP will proclaim themselves heroes for saving the day with autism. Just wait.

Thanks Anne.

I took my son to Stanford (LPCH) for GI treatment. I told them there's a link between autism and GI and they looked at me as if I was an alien. They told me not to waste my time on this and there's no cure. Although we still don't understand what autism is, I do believe there's a link between vaccines, GI, and autism. My son was injured by MMR directly. He is recovering very well with a GFCF diet and special supplements. I am glad that I didn't listen to them.

"Curemark has carried out an extensive clinical analysis to identify the role of secretory malfunctions of the pancreas and/or gastrointestinal tract as they may be linked to the severe behaviors seen in children with autism..." So Secretin for autism, roundly condemned as hogwash and disproven by the anti-biomedical folks, may play a beneficial roll for some people after all? Maybe the parents and practitioners who saw improvements in some kids on Secretin (such as 6 months of progress in speech in two weeks) weren't delusional after all? Oh, but maybe Secretin has been around too long to be under a patent, so never mind.

"Bring back Thalidomide! Having flippers instead of arms is just another way of being. We call it appendagediversity. "

See --

http://www.amazon.com/Geek-Love-Novel-Katherine-Dunn/dp/0375713344

You can't make this stuff up--unreal!

Great piece, Anne.

Bring back Thalidomide! Having flippers instead of arms is just another way of being. We call it appendagediversity.

Yes, someone call Dr. Nancy! People like her need to be asked to retract what they say. Or they are just allowed to go on and on with their fibs of favor. Won't someone from AoA give her a call and ask for an interview.

THey need a retraction of the retraction of Wakefield's study.
I also believe that duplicity is genetic.
Great article, Anne.
maurine

Let's hope that Dr. Nancy can find some epidemiology that finds no problem with Thalidomide so that fine product can come back on the market.

For Dr. Nancy, medical research is done with telephone surveys, the first survey is done to determine who to call back on the second survey to reach the conclusion she wants to broadcast on NBC... which she then call "science."

There is "no link" to whatever the hell Dr. Nancy says and the actual damn truth of anything related to Autism.

Where there's a pill there's a way.

Did I read that correctly, a drug to help people with autism and gastrointestinal problems is in testing, the FDA is fast-tracking it, and it is using Andy Wakefield's research as a reference point?

What will they think of next? A study of vaccinated kids vs. unvaccinated kids?

It's really very, very simple.

When there was no medication to treat the GI problems, there were no GI problems associated with autism. Hence the Mayo clinic study proving that there is no link.

Now big pharma has a new, brand name, profitable drug to sell us, and lo and behold, as we all know, there is a link between GI problems and autism.

But big pharma can't admit that maybe, just maybe, us anti-vaccine nazis are correct about the rest of it, too. It HAS to have a genetic cause.

Money.
If they can find a pharmaceutical pill that is profitable --they will be on our side.

If they could create a pill that reversed vaccine damage they would suddenly be admitting to the vaccine damage, "but it's all good, just take this pill"

I am not against medicine that helps our kids... I am just tired of being pissed on and told it's rain.

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