Autism, leaky bowels and exclusion diets

The so called leaky gut theory is that vaccines like MMR damage the gut wall, causing increased levels of peptides which can be detected in urine; it is claimed these raised peptide levels in the blood affect the brain and cause autism.
Proponents of this theory have inflicted all sorts of bizarre exclusion diets on autistic children. It is understandable that any parent of a child with a serious medical problem will seek advice from many sources, often from "Dr" Google. Trouble is, "Dr" Google is a purveyor of unfiltered information. Sooner or later, parents will arrive at the Autism Research Institute from where lots of happy smiling people proclaim that autism is "curable". The various "cures" range from diet to control so-called "leaky guts" to potentially lethal chelation therapies. They are summarised by James B. Adams PhD, who has one piece of sensible advice that Dr Crippen would strongly support:
This summary is not intended as individual medical advice, and people should consult their physician for how to best treat their individual child.When looking for an experienced paediatric physician, Great Ormond Street Hospital in London is always a good starting place and it is from there that an important piece of research has just emerged:
The so called leaky gut theory is that vaccines like MMR damage the gut wall, causing increased levels of peptides which can be detected in urine; it is claimed these raised peptide levels in the blood affect the brain and cause autism. This study shows that children with autism do not produce higher levels of peptides in urine, and throws doubt on earlier studies which claimed that they did, but which used more rudimentary biochemical techniques. A number of other studies have also failed to find peptides in children with autism, but this is the largest study and the first which properly compared children with autism with a control group.There is a problem with respectable scientists. By nature they are cautious. They do not make claims that they cannot substantiate.
Dr Hilary Cass, Great Ormond Street Hospital, and Dr Paul Gringas, Guy’s and St Thomas’s Hospital said "It is very distressing to have a diagnosis of autism, a lifelong condition. Many families are driven to try out interventions which currently have no scientific basis. For example, advocates of the leaky gut hypothesis offer children a casein and gluten free diet which as yet lacks an evidence base. Our research throws serious doubt on the putative scientific basis of that diet and indicates that further work is needed to understand the role and outcomes of dietary intervention."The Autism Research Institute may take refuge in the phrase "further work" is needed. More likely they will ignore this important paper altogether. Their current list of research papers does not mention it is as yet and still, despite all the contrary evidence, promotes thimerasal theories.
Archives Diseases in Childhood 12 March 2008
I would stick with Great Ormond Street.
Labels: Andrew Wakefield, autism, exclusion diets, leaky bowels









22 Comments:
Now there's a REAL quacktitioner.
Should be strung up by their innards for propogating such nonsense.
Them and the "28 units per week" brigade...
Let's hope The Daily Mail will be next with a grovelling apology, to the thousands of parents it deliberately scared, to the thousands of children denied protection and the thousands of children who have had measles unnecessarily and may pay the price for the rest of their lives, and to the unborn congenital rubella babies who will arrive in 15 - 20 years time.
Good for you with this post. This autism-vaccine theory has done so much damage by causing parents not to immunise their children, on spurious grounds.
Hear hear. Say it loud, John.
Did you notice that if you watch the flashy animated banner on the site for long enough, Andrew Wakefield appears? Spooky.
The "Triggers" section of the ARI site frontpage is the real giveaway to the true nature of what the ARI / DAN ("Defeat Autism Now") lot are about.
Can't see Melanie Phillips and the Daily Mail apologising, though...
i have been suffering from autism from 2 months....I hope it is also called Aspergers.
I agree withMaxine,autism-vaccine theory have caused some real dameage..
keep up the good work,
james
Note however that the American government has paid out on a vaccine-autism case. The child had an underlying condition: mitochondrial disease. The report can be found here:
http://www.huffingtonpost.com/david-kirby/government-concedes-vacci_b_88323.html
http://www.huffingtonpost.com/david-kirby/the-vaccineautism-court-_b_88558.html
Beautiful piece of blogging Dr John Crippen but the picture at the top gives it all away.
Its got as much truth in it as the picture which depicts that ducks need the protection of a man made vessel to allow them to be safe on the water.
The truth being bizarrely that they manage very well without MAN MADE medical or other intervention.
Curiously the most powerful vaccine against illness is provided by cord blood and injection of mercury containing toxic chemicals at age ONE DAY kills or maims either staraight away or over a slow time period.
If NHS actually treated these children parents would not be pushed to what you call quackery. My child with Autism had chronic explosive diarrhoea for over a year, NHS would not treat. The diet sorted it out in a matter of days - he is not cured but is a hell of a lot healthier on the diet. ARI want to help these kids - the NHS does not.
anonymous 7.59, if you take the hunffington post (which is rapidly anti-vaccine and has printed mountains of incredible tripe about MMR) as a news source, you are going to get a helping of rubbish every time.
In this case the child had an underlying mitochondrial disorder, which is recognised as one of the reasons for a vaccine damage pay-out and can also cause autisms like developmental problems. It is the anti-vaccine "industry" (including the ARI / DAN) who are frantically "framing" this as "payout on vaccine caused autism".
For a less biased take on the case try the New Scientist here
Dr Andrew Wakefield, Dr Simon Murch and Dr John Walker Smith are all honest men using and talking from their real names.
The cost of this is the ten year chase to destroy them.
Dr Wakefield already driven both from his job and his country of birth is widely acclaimed all over the world and has published more than 100 articles.
His work stands the test of time and even if faulty is not the basis for Witch Finding.
Using this yardstick we would ERASE 95 per cent of published "scientific work" and a similar number of over-paid researchers would lose their jobs and salaries often paid out of the common mans hard earned money believing that this research is efficient and factual.
All progress is painfully slow but persecuting those that bring unpleasant truths to our sight is not science, not civilised and has its basis in the Wild West and Lynchings.
Charles Richet Nobel Prize winner got it right back in 1902 and Dr Andrew Wakefield is just repeating the work done more than 100 years ago.
Those that are not familiar with such men and the descendents in careful scientific investigation may be party to false inquisitions and in the long term 1 in 50 people with autism may seem like the GOOD OLD DAYS.
Armaggedon HERE WE COME!
How tediously predictable that the first anti-vaccine troll / "Mercury Militia" loon ("Quicksilver") should already have shown up. Just wait and see if anti-vaccine uber-loon John Stone joins him ... like the last time we went down this road.
PhD scientist: Huffington Post may be an unreliable news source but what I am referring to is the link to the judegement of the Federal claims courts which concludes with the following statement:
"In sum, DVIC has concluded that the facts of this case meet the statutory criteria for demonstrating that the vaccinations CHILD received on July 19, 2000, significantly aggravated an underlying mitochondrial disorder, which predisposed her to deficits in cellular energy metabolism, and manifested as a regressive encephalopathy with features of autism spectrum disorder. Therefore, respondent recommends that compensation be awarded to petitioners in accordance with 42 U.S.C. § 300aa-11(c)(1)(C)(ii)."
Thus the reliability or unreliability of the Huffington post is not the issue.
If you read the statement above it does not say that the vaccine caused the autism or autism like disorder, it merely aggravated the mitochondrial disorder. This is the reason why they are paying out.
I normally dont comment on blog posts but I did so in this case because if what they say is true, and there is a small possibility that it may be true then doctors should perhaps consider whether children suffering from this disorder should be given the vaccine.
Should we just discard any information we may glean from this court judgement?
Even the New Scientist said "the government's decision says nothing about whether vaccines cause autism. Instead, government lawyers concluded only that vaccines aggravated a pre-existing cellular disorder in the child, causing brain damage that included features of autism"
Quite frankly if I were a parent with a child who had mitochondrial disease I would think twice about giving the vaccine. However, if my child were normal then I would have no hesitation. I think we should look at the data and assese what is the right thing to do rather than condemn the source of the information which in this case is a Federal court decision and the decision of the government which I am sure was not made lightly
Anon 12.37:
I wasn't condemning the US federal Govt's decision; note that I wrote:
"In this case the child had an underlying mitochondrial disorder"
..known to be able to cause mitochondrial encephalopathy.
For a view on what the US court judgement really means from an actual neurologist, try here.
What I was commenting on was the way the anti-vaccine mob, and the Huffpost, were using this SINGLE case to try to make wider points (In effect: "This PROVES it - Vaccines cause autism! We have been LIED TO!") that the case didn't imply at all.
The Huffpost pieces are not "reportage". They are anti-vaccine advocacy, written by David Kirby, whose anti-vaccine agenda and disregard for science is well-described in the Scientific blogosphere.
Quicksilver: Just a point, I have never yet met an 'overpaid' scientific researcher. Chronically underpaid more like!
In addition, I don't think that trying to discredit Dr Wakefield's work means that we should "ERASE 95% of published "scientific work"" (why the quotes around "scientific work" btw?) I remember reading (can't remember where unfortunately) evidence from an ex-member of Dr Wakefield's research group who had refused to put his name to their papers, even though he had done some of the work, as he was so unconvinced that the data backed up the (very unusual) claims that were being made. As far as I remember, it was something to do with the sensitive PCR methods used amplifying random bits of DNA, which will happen very easily if samples are contaminated for example. These false positives were then taken as 'results' by Wakefield.
I don't know if I'm putting my point across very well, but in my experience researchers make damn sure that their raw data backs up their arguments before they even think about publishing; any shaky submissions will rapidly be rejected, at least by 'hard' science journals such as PNAS and Nature. I hope The Lancet also has similarly rigorous refereeing requirements?
The BMJ published a study in 2000indicating that childhood diseases (measles, for example) helps train the immune system ... at the very least those who had been exposed to pathogens of varying descriptions were three times less likely to develop allergies later: BMJ, 2000; 320: 412-7
There are other studies suggesting this.
I know childhood diseases are unpleasant, but ...
Fx
Hiya all - a comment from a scientifically-impaired(!) parent of an autistic child:
I have no opinion about vaccinations as a rule - my 'normal' children had no adverse effects. Unfortunately, my 15 year-old son did. Possibly he had an underlying, maybe genetic, problem, which caused his extreme reaction to the MMR (back in the days when mercury was still added). Note: was the the GOS research based on younger children having the MMR without the thimerosal?
I don't really know how or why he was so ill after having the vaccination - all I know is that he reacted hugely to it and it seemed to damage him permanently. Oh, and he had measles afterwards anyway!
Now we are left trying to cope with the problems that come with a profoundly autistic child/young man/adult.
I do find the diet helps him enormously - give him a piece of wheat-based bread and we all run for the hills! He literally can't control himself.
Again, I don't know the ins and outs of it all. All I know is the way that my son is affected and what seemed to be the triggers.
I think what is the most frustrating for the 'anti-vaccine mob' is that, as parents of children affected, they are faced with a brickwall of denial. This had knock-on affects with regard to treatment, education and schooling, funding etc etc.
Again, perhaps vaccinations are safe for the vast majority of the population - but it seems that the parents of the small minority that were affected are being made out to be over-reacting zealots for trying to get a contributing factor to their children's autism recognised.
Lastly, does it seem that all the severely affected autistics are older individuals? It may just be me, but I could swear that the younger children seem to be more high-functioning.
angela-a
Yes, I met a child years ago who had been adversely affected by MMR. Heartbreaking.
The younger ones are more high functioning because there is much more research now, plus a great deal of trial and error approaches by parents like yourself - sharing information about what works, that kind of thing.
Just my 2p
Fx
Ph D scientist: My point is that there is a possibility that children with mitochondrial disease are susceptible to a vaccine induced reaction.
This requires further study. Is the "mutation" referred to always associated with mt disease? Not just an SNP? What is the incidence? Is it always assoc with mt disease?
I agree with the neuro blog that there are 4 possibilities which can only be eliminated with further study.
I know all too well the various kooks which come out of the woodwork whenever there is any hint of controversy. see the HIV AIDS situation and the people denying causation.
I am currently a lone voice grappling with opposing forces which support private cord blood banks, another area which is full of financial possibilities.
Legally, tort claims only require the standard of "balance of probabilities". In criminal cases the standard is "beyond reasonable doubt". In science "beyond reasonable doubt" would be dogma and "balance of probabilities" would be :can be investigated further. I dont see the difference between scientific and legal standards of proof. In this case the US govt has decided to settle. If you sent this to a journal, they would probably require further studies to accept this.
In any case if my children were having medical problems (eg mt disease) I would err on the side of caution and decline the vaccine. However please note that my children have had all their vaccinations but I only took them when I was satisifed they didnt have any current infection.
HOw can one know if your child has a mitchondrial disorder. The American child showed no symptoms before vaccination. Screening before vaccination would be required. There is little data on the prevalence of mitochondrial disorders in the general population let alone the ASD population(some say 7% others 38% for latter population)....more research needed? Yes, in the meantime is it acceptable that 1 in 100 children affected because medical/scientific community wants to tick all it's boxes before reverting to a perfectly adequate vaccine schdule which existed before MMR introduction.
ONe could almost stomach the herd health arguement if those affected received decent medical care - they do not which is morally repugnant.
Wakefield and co. treated sick kids and happened to notice a pattern amongst the kids with autism - voicing concern about that pattern cost him his job and life in the UK. If the GMC is interested in a real witch hunt perhaps they should ask why there were insufficient safety checks when MMR introduced a fact buried inside the Cochrane report.
Bizarre exclusion diets on autistic children that actually work that is.. Gluten and caseinfree-diet gives some of these children a new life. They connect with their parents. Calmes down. Bowelproblems goes away. Start talking. And so on.
What you are saying good doctor is to just accept that your child is a lost case, and that is unforgivable when something as simple as changing foodhabits actually makes a difference.
As a father of an autistic child, diet does help, but it doesn't cure autism. Contrary to recent media hype and an increasingly expanding definition of autism, autism is a complex, life long disorder. Yet, more and more we find misdiagnosed children who are allegedly healed by some quick fix. Don't be fooled. This is a very serious disorder. It requires years of care and treatment. Anyone who peddles a quick or simple fix is throwing a red herring into the autism mix. Worse, they are motivated by the love of money and ego. For instance, Jenny McCarthy's child is not autistic, and she probably knows it, but her publishers who made millions off her celebrity status and the child's unfortunate bogus diagnosis don't give a rip. Nor does her agent, who by the time her child was five years old, had Jenny hopping on talk shows, interviewing with magazines, giving speeches and is now working a movie about autism! Amazing how this same McCarthy claims to have her "butt kicked" by autism, when the reality is she had only spent three short years getting her feet wet in this diagnosis, which turns out to be a false diagnosis. Her child is most likely developmentally delayed for reasons unknown, but certainly, by the way he's described and the fact he interviews with the media, he's NOT autistic in the real sense of autism. We must stop the constant evolution of this diagnosis or we will never find proper treatment for the truly autistic. Autism has become a billion dollar industry and that alone should tell us all where this insanity is coming from. "Love of money is the root of all evil."
You made a good point, although some commentators seem to have missed the wood for the trees a bit.Your life is so wonderful,Reading your article is a kind of enjoyment.Thank you.
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