IMPORTANT NOTICE ABOUT COMMENTS

COMMENTS HAVE BEEN DISABLED

Because of spam, I personally moderate all comments left on my blog. However, because of health issues, I will not be able to do so in the future.

If you have a personal question about LI or any related topic you can send me an email at stevecarper@cs.com. I will try to respond.

Otherwise, this blog is now a legacy site, meaning that I am not updating it any longer. The basic information about LI is still sound. However, product information and weblinks may be out of date.

In addition, my old website, Planet Lactose, has been taken down because of the age of the information. Unfortunately, that means links to the site on this blog will no longer work.

For quick offline reference, you can purchase Planet Lactose: The Best of the Blog as an ebook on Amazon.com or BarnesandNoble.com. Almost 100,000 words on LI, allergies, milk products, milk-free products, and the genetics of intolerance, along with large helpings of the weirdness that is the Net.

Showing posts with label GFCF Diet. Show all posts
Showing posts with label GFCF Diet. Show all posts

Monday, October 18, 2010

FDA Crackdown on Chelators

Sadly for the hopes of many parents, the GFCF (gluten-free, dairy-free) diet has not passed any medical testing as a cure for autism. The claims made by the people who tout the diet are suspect anyway, because they try many different things at once. This is quite natural and understandable, but it makes nonsense of any chance of separating out what works from what doesn't.

The evidence suggests that not much works, which makes piling pills upon the other attempts even more problematical.

Here's a quick rule that should work in almost every situation. If someone says you need to "detoxify," put your hand on your wallet and run in the other direction.

Chelators are powerful chemicals that are designed to remove heavy metals from the body. They work for the few individuals who really do have heavy metal buildup. There is not the slightest evidence that autistic children do or that their bodies have to be detoxified of them.

That doesn't prevent unscrupulous companies from selling chelators to parents to give to their children. The FDA has stepped in to put a stop to the quackery. The article by Deborah Huso on AOL Health said:

[Thursday, October 15, 2010] the U.S. Food and Drug Administration cracked down on eight companies marketing purportedly dangerous over-the-counter treatments for autism. The companies sell products, known as chelators, touting them as effective in the treatment of autism as well as heart disease, Parkinson's disease, Alzheimer's disease and macular degeneration.

The FDA warned eight companies, including World Health Products, LLC, and Evenbetternow, LLC, to correct violations that misled consumers into believing unproven treatments for autism and other diseases are safe and effective. One of the companies cited for violations, Artery Health Institute, LLC, claims on its website that its oral chelation product can reverse atherosclerosis. ...

"The companies advertising these products claim that these diseases are the result of heavy metal contamination in the body and that chelators will 'detoxify' them," FDA spokesperson Siobhan DeLancey told AOL Health. "There is no proof that 'detoxification' using these products is effective to prevent or treat any of these conditions."

DeLancey warns any consumers currently making use of these drugs to treat themselves or their children to cease their use and consult a physician immediately. The use of chelators can lead to dangerous dehydration, kidney failure and even death.


Please do not use these pills for any purposes for which they are not intended by prescription. Dump them out of your medicine cabinets if you already have them. Trying anything is not always better than trying nothing. Some things are truly dangerous.

Bookmark and Share

Wednesday, May 26, 2010

Andrew Wakefield Banned in Britain

Dr. Andrew Wakefield, the doctor whose bad science, false experimentation, and faked results led to the death of children from the hysterical conclusion that autism might be caused by the MMR vaccine, was banned from medical practice in Britain.

This is a self-congratulatory pat on the back by a medical establishment that let him and his acolytes get away with literal murder for too long. Wakefield will not suffer from this ban. He's not even in England. He is - what else? - working at an alternative medicine facility in - where else? - Texas.

As I wrote last year:

Wakefield has been practically elevated into a god by the fringe nutgroups that regularly attack all mainstream medicine. The leader of the nut groups is Age of Autism, who awarded Wakefield their first, and I believe only, Galileo Award as a persecuted Man of Science. You won't be too surprised that autism diet-fad activist Jenny McCarthy and her husband Jim Carrey were Age of Autism's 2008 Couple of the Year.

And who is supporting Wakefield today? You guessed it. From Age of Autism's front page of May 26, 2010.
Meet Dr. Andrew Wakefield at The American Rally for Personal Choice Today

Join us TODAY in Chicago to show our support for vaccination choice and parental consent. Please join us live and meet Dr. Andrew Wakefield, or you can participate via satellite, or with balloons to represent all those who cannot attend but want to have their family counted.

Balloons!

It gets worse. Wakefield will present his side of the affair in a book called - I cannot make this up - Callous Disregard, possibly the most ironic book title of all history. The book has a foreword by - I'm still not making this up - Jenny McCarthy.

There is still no proof that vaccines cause autism, just as there is no proof that the GFCF diet, which just failed another test, can help to cure them.

Children do die of measles from not being vaccinated, though. In today's world that is the equivalent of deliberate murder. Tragedies all around.

Bookmark and Share

Thursday, May 20, 2010

GFCF Diet Does Not Help Autistic Children

Next year is finally here. It's hard to believe that it was all back in 2007 that I wrote:

Researchers at the University of Rochester are in the middle of a five-year study on the GFCF diet. Results are expected to be announced next year.

The study results were finally announced. The headline from the UofR's press release is not encouraging, Popular Autism Diet Does Not Demonstrate Behavioral Improvement: Tightly controlled study saw no benefits for sleep, attention and bowel function

This is not the long-term wide-ranging study that was expected. These results are based on a small sample of only 14 children, whose diet was changed for only 18 weeks. Specifically, they were put onto a strict gluten-free, casein-free (GFCF) diet. After a month of complete avoidance, once a week they were given a snack that contained wheat or dairy or neither on a random basis. Their behavior was carefully scrutinized both the days before and after the snack to try to determine whether adding these supposed risk factors to their diets changed anything. They did not. They "had no change in attention, activity, sleep or frequency or quality of bowel habits."

As usual, the scientists involved were cautious in their conclusions.
"It would have been wonderful for children with autism and their families if we found that the GFCF diet could really help, but this small study didn't show significant benefits," said Susan Hyman, M.D., associate professor of Pediatrics at Golisano Children's Hospital at the University of Rochester Medical Center (URMC) and principal investigator of the study which will be presented Saturday (May 22) at the International Meeting for Autism Research in Philadelphia. "However, the study didn't include children with significant gastrointestinal disease. It's possible those children and other specific groups might see a benefit."

Belief in the GFCF diet is essentially a religious belief at this point. If it "helps," it's because you see the results that you want to see, read into it the cure that you want to happen. There is no scientific or medical backing for such a belief. That may change in the future with a larger and deeper study. Certainly the researchers would have loved to announce a positive result. They couldn't.

Can we please stop giving any credence to Jenny McCarthy about anything that comes out of her mouth? She hurts children rather than helps them. Nonsense is not healthy for anybody. As I've said before, stupidity kills. Let's act from wisdom instead.

Bookmark and Share

Saturday, February 27, 2010

Three Strikes And Out For Jenny McCarthy

Jenny McCarthy, the anti-vaccine, give-your-Autistic-kids-any-treatment-no-matter-how-crazy activist is backing off some of her claims.

No, not because she's seen the light and realized that science might have more insight into these issues than she does. The real reason is so horrifying that it's difficult to put down in words. Her son may never have been autistic in the first place.

I emphasize the word "may." But in a long interview with Time magazine, the possibility emerges that she - or her doctors - misdiagnosed Evan. There's no question that at one time his autism was pronounced "conclusive." The article suggests that the passage of time may require a second look at this pronouncement.

Or is this the truth? There are dark murmurings from scientists and doctors asking, Was her son ever really autistic? Evan's symptoms — heavy seizures, followed by marked improvement once the seizures were brought under control — are similar to those of Landau-Kleffner syndrome, a rare childhood neurological disorder that can also result in speech impairment and possible long-term neurological damage. Or, as other pediatricians have suggested, perhaps the miracle I have beheld is the quotidian miracle of childhood development: a delayed 2-year-old catching up by the time he is 7, a commonplace, routine occurrence, nothing more surprising than a short boy growing tall. It is enraging to the mother to hear that nothing was wrong with her boy — she held him during his seizures, saw his eyes roll up after he received his vaccines — and how can you say that she doesn't know what she knows?

The author of the article, Karl Taro Greenfeld, wrote Boy Alone: A Brother's Memoir, an account of his family's struggle with autism. As the above sentence proves, he is completely sympathetic to family concerns and the feelings both of helplessness and the overpowering urge to do something. Yet he is also aware that doing something may lead to more harm than good.

Though close to 80% of American children receive the standard battery of vaccinations, skepticism about their safety remains widespread, in part because of the antiscientific clamor of the McCarthy camp. Enough parents are refusing to vaccinate that some long-dormant maladies, like measles and meningitis, have re-emerged. Nonvaccination rates among kindergartners in some California counties have been reported at 10%. To McCarthy's opponents, from the public-health officials at the Centers for Disease Control and Prevention (CDC) to the pediatricians of the American Academy of Pediatrics, this makes McCarthy much worse than a crank: she's a menace to public health.

Yes, she is. That's the real pity. I'm sure every one of us has had the feeling that our doctors were not paying us close enough attention, not listening clearly to our concerns, not helping nearly enough. Jumping from there to a national campaign against a true cure, a campaign that has lead to the death of children from diseases we thought almost eradicated, cannot be excused. That McCarthy is backing off her rhetoric is too little, too late. She needs to bow out of the public eye entirely.

Science isn't always right, and too often it knows way too little. When it is right, mindless opposition kills people. Literally so. It's too high a price to pay.

Bookmark and Share

Tuesday, February 02, 2010

Two Strikes Against Jenny McCarthy

Jenny McCarthy is the actress/model who gained fame from posing for Playboy, acting goofy on television, and marrying Jim Carrey. It's a fine career. But she used that as a springboard into national attention as a self-proclaimed warrior mom, saying that she's cured her autistic son by diet, a gluten-free, dairy-free diet, which it's why of concern to us.

That would be fine too, if she kept it to herself or even if she didn't believe that she knows better than all medical science.

Medical science, however, doesn't care about her individual claims or anecdotes. And several major blows to her case have been issued in recent weeks.

First there was the blockbuster article from the journal Pediatrics, Evaluation, Diagnosis, and Treatment of Gastrointestinal Disorders in Individuals With ASDs: A Consensus Report, by Timothy Buie et al., Vol. 125 Supplement January 2010, pp. S1-S18 (doi:10.1542/peds.2009-1878C). The full text of the article can be read at this site.

The report consisted of a number of Statements, the most relevant to us including:

Statement 2
Gastrointestinal conditions that are reported to be common in individuals without ASDs are also encountered in individuals with ASDs.

Statement 3
The prevalence of gastrointestinal abnormalities in individuals with ASDs is incompletely understood.

Statement 4
The existence of a gastrointestinal disturbance specific to persons with ASDs (eg, "autistic enterocolitis") has not been established.

Statement 12
Available research data do not support the use of a casein-free diet, a gluten-free diet, or combined gluten-free, casein-free (GFCF) diet as a primary treatment for individuals with ASDs.

That last statement is the crucial one. There is no medical evidence that the GFCF diet helps. To be fair, there has been only one proper double-blind placebo-controlled study published, and that one is too small to be meaningful. The gluten-free, casein-free diet in autism: results of a preliminary double blind clinical trial. by J. H. Elder et al. J Autism Dev Disord. 2006 Apr;36(3):413-20.

Much of the nonsense on autism was sparked by a paper published by Dr. Andrew Wakefield in the premier British medical journal The Lancet in 1998. Today the journal retracted that article in full.
Retraction—Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children

The Lancet, Early Online Publication, 2 February 2010
doi:10.1016/S0140-6736(10)60175-7

Following the judgment of the UK General Medical Council's Fitness to Practise Panel on Jan 28, 2010, it has become clear that several elements of the 1998 paper by Wakefield et al are incorrect, contrary to the findings of an earlier investigation. In particular, the claims in the original paper that children were "consecutively referred" and that investigations were "approved" by the local ethics committee have been proven to be false. Therefore we fully retract this paper

A guest blog post by Liane Kupferberg Carter on The New York Times website goes after McCarthy.
It’s distressing and hurtful to hear McCarthy say her son is cured because she “was willing to do what it took.” McCarthy, who describes herself as one of a tribe of “warrior moms,” seems to imply that if our kids are unrecovered, it’s because we didn’t do the diet right, weren’t willing to let doctors inject our children with unproven drugs or somehow just didn’t love our children enough.

I’ve heard McCarthy say on national TV, “Evan is my science.” I’m sorry, one little boy is not “science.” Warm and fuzzy anecdotes don’t do it for me. Give me hard science any day, with its double blind studies and rigorous peer review.

I don’t doubt that McCarthy loves her son. But the vast majority of our kids are not going to be cured. It’s time for the media to stop giving airtime to celebrities with no medical credentials who peddle unrealistic hopes to families dealing with a devastating diagnosis.

McCarthy has declared that anecdotal evidence is better than science.
"We're the ones seeing the real results. And until doctors start listening to our anecdotal evidence, which is, 'This is working, it's going to take so many more years for these kids to get better.' Every parent will tell you something different that helped their child." she said to ABC News.

I wish science had all the answers. I wish they had even some answers. They don't, not yet at any rate. That doesn't allow you to substitute anecdotes for evidence. That doesn't allow you to claim that following a GFCF diet is the cure, especially when you are simultaneously doing dozens of other treatments. That doesn't allow you to give false hopes to parents so desperate that they grasp at any hope, however slim.

How desperate are these parents? That one double-blind study I mentioned, the one that found no evidence of any help from a GFCF diet, was done on 15 patients. This is what the Consensus Study had to say:
Nevertheless, after being informed of the results, 9 parents wanted to continue the diet and reported positive subjective clinical changes while their child was on the GFCF diet.

Subjective positive changes. Of course that's what every parent wants to see in a sick child. It's heartbreaking to tell parents that what they see isn't really there. It's despicable to tell parents that what isn't there is really happening nevertheless. Yet that's what McCarthy does. And what ABC News and others give her the platform to do.

I hope we find some answers tomorrow. I even hope that despite all sense McCarthy is right and that something as simple as a GFCF diet can be a cure. My brain tells me that both hopes will be dashed. I'm sorry. I'm more sorry that the McCarthys of the world are always wrong.

Bookmark and Share

Tuesday, August 25, 2009

Science Doesn't Know. And That's a Good Thing.

A major review study was just published in the Journal of Paediatrics and Child Health, Management of cow's milk protein allergy in infants and young children: An expert panel perspective by Katrina J. Allen et al.

ABSTRACT
Cow's milk protein allergy is a condition commonly managed by general practitioners and paediatricians. The diagnosis is usually made in the first 12 months of life. Management of immediate allergic reactions and anaphylaxis includes the prevention of accidental food ingestion and provision of an adrenaline autoinjector, if appropriate. By contrast, the clinical course of delayed food-allergic manifestations is characterised by chronicity, and is often associated with nutritional or behavioural sequelae. Correct diagnosis of these non-IgE-mediated conditions may be delayed due to a lack of reliable diagnostic markers. This review aims to guide clinicians in the: (i) diagnostic evaluation (skin prick testing or measurement of food-specific serum IgE levels; indications for diagnostic challenges for suspected IgE- and non-IgE-mediated food allergy), (ii) dietary treatment, (iii) assessment of response to treatment, (iv) differential diagnosis and further diagnostic work-up in non-responders, (v) follow-up assessment of tolerance development and (vi) recommendations for further referral.

In short, while true food allergies, those mediates by the IgE antibody, can be relatively easily identified by testing and managed by removing the offending food, a different and assorted set of reactions that use pathways in the body other than IgE are much harder to pin down. The symptoms come late and are hard to match up with particular foods, the tests are uncertain, removal of the food doesn't always give immediate relief.

An article on the study by Michael Woodhead also says that "is still controversy about the role of cow’s milk in infant colic and constipation."

This is part of the reality of scientific medicine. Cause and effect are hard to put together. What happens in one person is not a reliable guide to what happens in another. Large numbers of reactions are needed to put together correlations, and even when that is accomplished the problem of what is occurring in a specific individual may still not be resolvable.

Understandably, most people don't want to hear this. They want certainty. They want a doctor to tell them what is wrong and how to fix it. This anxiety multiplies when children are the ones with conditions, children who cannot properly describe their symptoms and lack any understanding about their bodies.

Often, these parents go nuts.

Like parents of autistic children. They are the current poster children, to use an unfortunate but apt metaphor, for not getting it. I wrote last month about a new study of autistic children that found that they didn't have more gastroenterological problems then other children.

I didn't begin to suggest that this study settled the issue. On the contrary, I wrote:
This is just another medical point against the need for the [GFCF] diet. Medicine is like that. One single study is not enough. Like a jigsaw puzzle, it's the cumulative picture painted by many pieces, many studies that reveals the direction medicine moves in. That picture is not yet complete.

Like every medical study of food and disease, this study had its flaws. I said every and I meant every. No study is ever large enough, representative enough, thorough enough, detailed enough. That's why a consensus must be formed from a sufficient number of studies to patch over all those holes to make a smooth road toward an answer.

Anne Dachel at Age of Autism doesn't appear to understand this. In an article Autism Experts Only Seem to Know "What Doesn't Work" she lambastes the insufficiencies of the study and the media reports that cited it.
Suddenly however, thanks to one small study in the U.S., we can forget about all this research. Rather than conclude that these new findings challenge many previous studies and more research is needed on this important issue, it seems that, in the word of Nancy Snyderman, "the findings are very conclusive."

I did find an article that mentioned the limitations of the Mayo Clinic study. In the Medpage Today story, Most GI Problems Are Not More Common in Autism (HERE), it was reported, "The study authors acknowledged some limitations of the study, including the retrospective design, use of an almost all-white population, and the failure to assess the duration, severity, and recurrence of GI symptoms."

A couple of points must be made. First and most important, new studies are found to contradict older studies all the time. That's the point of continuing the do studies. If any one study isn't sufficient and complete, more studies need to be done. And often - very, very often - the new studies show the older ones to be wrong. Your personal emotional investment in the older studies is not considered.

Second, this one new study does not end the discussion, despite what Dachel implies. Research is ongoing. Not only will other studies compare gastrointestinal problems among other groups of children, but long-term studies are taking place at this moment that will more directly look at the effectiveness of the GFCF diet.

Was this study a significant one, for all its flaws? Apparently so. Several doctors involved used it and a second study released at the same time in England to state categorically that no evidence existed that the food cures that these parents tout so heavily truly improves autistic children.

Dr. Nancy Snyderman: "The findings are very conclusive: There is no link between illness in the gut and the signs and symptoms we see in autism."

Dr. Samar H. Ibrahim: "There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism."

Dr. Alan Edmonds: "The bowel habits of young children with autistic spectrum disorder, in general, are no different from the rest of population."

Yet Dachel concludes her piece with an unthinking attack on the medical community:
There are thousands of parents who report that their kids were typical healthy children until they regressed into autism and developed gastrointestinal problems. Why wasn't there a study done looking at this particular group?

And why isn't anyone interested in looking at the kids who were severely autistic but who've make incredible gains after being on a regimen of diet and supplements?

And what about all those doctors everywhere treating autistic kids for their concomitant bowel disease? Are we to believe that they're seeing these patients for imaginary illnesses?

Thousands of anecdotal reports are not evidence. Concerned parents do not treat their children like animals in controlled laboratory conditions. They do everything in their power to help them to improve. How can they say the diet was the specific activity that helped? What about the supplements? What about the care and attention they were given? What about mere aging and development? On the flip side, what bowel disease did they have? Did the group really have an unusually high number? Were their other contributing factors? What happened in their lives, their environments, their genetics?

The best studies can barely touch on these issues because it is impossible to slice a human life into neat and non-intersecting causes. Individual cases are meaningful only to the individual. Groups often tell different stories, results that are not as certain or as favorable as the one the parent tells.

And yet, a dozen negatives may all prove to be wrong if a better positive result appears. Possibly the big studies that are awaiting completion will confirm Dasher's opinions and suspicions. Progress is certainly slower than she hopes and I emphasize with her frustration. (Remember that no studies at all on lactose intolerance are ongoing that would help explain the dozens of questions about life without lactase we still have no answers to.) I will be disappointed if those studies remain negative and her attitude does not change. At some point railing against all conventional medicine puts you in with the cranks and that route is hopeless.

The proper answer to many questions is medicine is "we don't know." Despite all the advances, the insights into genetics, the new ways to look into the body, the more delicate and sensitive tests, we still just don't know so very much. Pretending that an answer is already available but remains unseen by the legions of experts dedicating large chunks of time and effort to the problem is disheartening and dangerous. Human, though. Sad, but human.

Bookmark and Share

Monday, July 27, 2009

Autistic Children Don't Have More Gastroenterologist Problems

The huge controversy in the autism community over whether the use of GFCF (gluten-free, casein-free) diets can help autistic children rages on. A new study in the journal Pediatrics, "Incidence of Gastrointestinal Symptoms in Children With Autism: A Population-Based Study," by Samar H. Ibrahim et al. won't stop it. You have to look at the study carefully to see that it really doesn't address whether a GFCF diet works. Instead it looks at the issue from the reverse angle. Do children with autism have more gastroenterological problems than children who don't.

The study got a good summary from Trine Tsouderos in the Chicago Tribune.

The study subjects were 121 autistic children and 242 other children. All were residents of Olmsted County, Minn., home to the Mayo Clinic. Comparing the cumulative incidence of gastrointestinal problems from birth until the late teens showed that the only significant differences were in constipation and feeding issues.

In addition, few specific conditions were diagnosed in the autistic children than in the control group, as reported by Roni Caryn Rabin in the New York Times.
[V]ery few of the autistic children had a specific diagnosis of a gastrointestinal disease. Only one autistic child had Crohn’s disease, and one had intestinal disaccharidase deficiency and lacked enzymes necessary to digest certain carbohydrates. None suffered from celiac disease, which some reports have linked to autism.

Two of the non-autistic children in the comparison group suffered from lactose intolerance, and one had a milk allergy.

Dr. Ibrahim suggested that the loss of appetite and difficulty gaining weight in autistic children may be related to the use of stimulant medications, which are often prescribed for the condition, and that the constipation may be due to children not consuming enough fiber or drinking enough water.

Dr. Ibrahim herself had no good words for followers of the GFCF diet.
"There is actually no trial that has proven so far that a gluten-free and casein-free diet improves autism," she said. "The diets are not easy to follow and can sometimes cause nutritional deficiencies."

This isn't the big study that will address the issue directly. There are studies ongoing that are testing the GFCF diet directly, but they haven't reported yet. This is just another medical point against the need for the diet. Medicine is like that. One single study is not enough. Like a jigsaw puzzle, it's the cumulative picture painted by many pieces, many studies that reveals the direction medicine moves in. That picture is not yet complete.

Bookmark and Share

Monday, February 09, 2009

Junk Science Exposed Too Late for Some

The MMR (measles, mumps, and rubella) triple vaccine does not cause autism.

That's not a terribly original or controversial statement. The consensus of virtually all mainstream doctors was that vaccination was critical for children and that no link could be found between MMR and autism.

The American Academy of Pediatricians (AAP) said so as far back in 2001 when they published AAP panel finds no link between ASD, MMR vaccine.

The report concludes, "The available evidence does not support the hypothesis that MMR vaccine causes autism or associated disorders or IBD" (Pediatrics. 2001;107:e84). It also says pediatricians need to work with families to ensure children are protected from these preventable diseases.

"Pediatricians should feel comfortable using MMR vaccine and recommending it for their patients," said Neal A. Halsey, M.D., FAAP, co-chair of the panel that wrote the 64-page report.

With all the available medical evidence om one side, you wouldn't think this would become a major issue. Yet it's not merely major but tragic.

It all stems from an article in the prestigious British medical journal, The Lancet.

Ileal-lymphoid-nodular hyperplasia, non-specific colitis,
and pervasive developmental disorder in children
A J Wakefield, S H Murch, A Anthony, J Linnell, D M Casson, M Malik, M Berelowitz, A P Dhillon,
M A Thomson, P Harvey, A Valentine, S E Davies, J A Walker-Smith
The Lancet, Volume 351, Number 9103 28 February 1998

Summary
Background We investigated a consecutive series of children with chronic enterocolitis and regressive developmental disorder.

Methods 12 children (mean age 6 years [range 3-10], 11 boys) were referred to a paediatric gastroenterology unit with a history of normal development followed by loss of acquired skills, including language, together with diarrhoea and abdominal pain. Children underwent gastroenterological, neurological, and developmental assessment and review of developmental records. Ileocolonoscopy and biopsy sampling, magnetic-resonance imaging (MRI), electroencephalography (EEG), and lumbar puncture were done under sedation. Barium follow-through radiography was done where possible. Biochemical, haematological, and immunological profiles were examined.

Findings Onset of behavioural symptoms was associated, by the parents, with measles, mumps, and rubella vaccination in eight of the 12 children, with measles infection in one child, and otitis media in another. All 12 children had intestinal abnormalities, ranging from lymphoid nodular hyperplasia to aphthoid ulceration. Histology showed patchy chronic inflammation in the colon in 11 children and reactive ileal lymphoid hyperplasia in seven, but no granulomas. Behavioural disorders included autism (nine), disintegrative psychosis (one), and possible postviral or vaccinal encephalitis (two). There were no focal neurological abnormalities and MRI and EEG tests were normal. Abnormal laboratory results were significantly raised urinary methylmalonic acid compared with age-matched controls (p=0·003), low haemoglobin in four children, and a low serum IgA in four children.

Interpretation We identified associated gastrointestinal disease and developmental regression in a group of previously normal children, which was generally associated in time with possible environmental triggers.

Discussion
We describe a pattern of colitis and ileal-lymphoid-nodular hyperplasia in children with developmental disorders. Intestinal and behavioural pathologies may have occurred together by chance, reflecting a selection bias in a self-referred group; however, the uniformity of the intestinal pathological changes and the fact that previous studies have found intestinal dysfunction in children with autistic-spectrum disorders, suggests that the connection is real and reflects a unique disease process.

We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described. Virological studies are underway that may help to resolve this issue.

If there is a causal link between measles, mumps, and rubella vaccine and this syndrome, a rising incidence might be anticipated after the introduction of this vaccine in the UK in 1988. Published evidence is inadequate to show whether there is a change in incidence or a link with measles, mumps, and rubella vaccine.

Doesn't sound like much, does it? A study of a mere dozen children. Carefully worded findings. No evidence of a connection. More study is needed.

Yet, this study by itself caused the hysteria over vaccination over the past decade. Even though no link was made between MMR and autism, use of the MMR vaccine declined sharply, especially in Britain, and even the single disease vaccines that showed no connection whatsoever dropped in popularity.

The result is predictable and inevitable. Children died.
After its publication, rates of inoculation fell from 92% to below 80%. Populations acquire "herd immunity" from measles when more than 95% of people have been vaccinated.

Last week official figures showed that 1,348 confirmed cases of measles in England and Wales were reported last year, compared with 56 in 1998. Two children have died of the disease.

That's from an article by Brian Ross of The Times of London. His actual accusations are much worse than causing hysteria. He says that the original article was fraudulent.
It claimed that the families of eight out of 12 children attending a routine clinic at the hospital had blamed MMR for their autism, and said that problems came on within days of the jab. The team also claimed to have discovered a new inflammatory bowel disease underlying the children’s conditions.

However, our investigation, confirmed by evidence presented to the General Medical Council (GMC), reveals that: In most of the 12 cases, the children’s ailments as described in The Lancet were different from their hospital and GP records. Although the research paper claimed that problems came on within days of the jab, in only one case did medical records suggest this was true, and in many of the cases medical concerns had been raised before the children were vaccinated. Hospital pathologists, looking for inflammatory bowel disease, reported in the majority of cases that the gut was normal. This was then reviewed and the Lancet paper showed them as abnormal.

To be fair, here is a .pdf of Dr. Wakefield's response.

Wakefield has been practically elevated into a god by the fringe nutgroups that regularly attack all mainstream medicine. The leader of the nut groups is Age of Autism, who awarded Wakefield their first, and I believe only, Galileo Award as a persecuted Man of Science. You won't be too surprised that autism diet-fad activist Jenny McCarthy and her husband Jim Carrey were Age of Autism's 2008 Couple of the Year.

The fact that many autism activists advocate a casein-free, gluten-free diet for their children, despite the lack of any solid medical evidence for its effectiveness, gives me the tie to write about this autism junk science. In truth, I would have written about it anyway. It displays, in unmistakable, deadly terms, the dangers of junk science, pseudoscience, and the war against mainsteam science that I have to write about all too often.

My lessons are simple. Science and medicine are consensus disciplines. One paper - especially a paper with a small number of subjects, without double-blind testing, without confirmation - is not science. Even if it makes newspaper headlines, one paper means nothing by itself. That's true for all science, all medicine, all nutrition. In a few, rare instances a huge, multi-year, carefully monitored study may reveal a danger that is so severe that you need to change your life in response. An after-the-fact study of a dozen people that states in so many words that no link was made is not one of these instances.

Wakefield was not ignored, or ridiculed, or prosecuted or persecuted by other doctors. The medical community checked out his claim and found there was nothing to it. That should have buried his work, like a thousand other preliminary articles that never get confirmation. The British government and its medical arms, along with the British press, apparently botched the response. The American press hasn't been much better. They reported the controversy rather than the science.

That's not good enough. Controversy sells, but conspiracies of the entire medical community don't exist. (The conspiracies are usually on the other side. Wakefield has been accused of taking large sums of money from lawyers who wanted to sue the vaccine manufacturers.)

The medical community is not always right. There are huge amounts we don't know yet. Those daring mavericks and loners who are opposed to the consensus? They're almost always wrong. They're almost always out to take your money. Some of them are real medical doctors. More have no expertise at all except for their ability to scare you and fool you.

This is why I do this blog. I hope that by reading it you can look at the fraudsters and tell them to go to hell at first sight, before they can do their damage.

Children are dying of measles in the U.K. They are dying because of ignorance and fear. While cases of measles have shown a slight rise in the U.S. because of parents not vaccinating their children, deaths are still rare. Worldwide, however, measles is still deadly, killing an estimated 197,000 children in 2007. Massive as that number is, it's still a 74% decline from 2000. Why? More vaccinations. Measles vaccinations worldwide pushed over 80% in 2007. That's right. There are now more parents vaccinations their children in the third world than in Britain.

The junk science brigade is trying to turn Britain into a third world country. Maybe now they have less chance to succeed. Let's hope more children don't have to die to prove them wrong.

UPDATE: News broke today that U.S. courts will deny accusations that the MMR vaccine caused autism.
A special U.S. court ruled against three families on Thursday who claimed vaccines caused their children's autism.

The Vaccine Court Omnibus Autism Proceeding ruled against the parents of Michelle Cedillo, Colten Snyder and William Yates Hazlehurst, who had claimed that a measles, mumps and rubella vaccines had combined with other vaccine ingredients to damage the three children.

"I conclude that the petitioners have not demonstrated that they are entitled to an award on Michelle's behalf," Special Master George Hastings, a former tax claims expert at the Department of Justice, wrote in the Cedillo ruling.

They also declared that the vaccines with the mercury-containing preservative called thimerosal did not cause autism symptms.

Bookmark and Share

Thursday, November 06, 2008

Parents Need to be Cautious About CFGF Diet

There is still no new news on the medical front about the effectiveness of using a casein-free, gluten-free (CFGF) diet to help children with autism. The big report that is scheduled to be released by the University of Rochester Medical School has not yet appeared.

The CFGF diet, though, continues to receive more than its share of attention in the popular press, mostly due to the widely publicized efforts of actress Jenny McCarthy, who has published books on helping her children with the diet. See my post Gluten-Free, Casein-Free Diet for Autistic Children Still Controversial for more details.

Doctors are having to respond to parents' questions and demands because of this, no matter how little they may think of the diet from a medical perspective. Tralee Pearce wrote a fascinating article on this issue for the Toronto Globe and Mail.

A few years ago, when Vancouver autism specialist Vikram Dua faced a parent's query about a trendy alternative therapy for a child, he wasn't the best listener.

"I used to rail against it or argue with parents," he recalls of the discussions about restricted diets or the use of supplements.

The result: He tended not to see those families again. "And it didn't help the kids very much."

Now, Dr. Dua is less combative. He explains that of the more than 1,000 treatments out there, one or two might, indeed, work. He just doesn't know which ones work and for which kids.

...

In her practice, [Wendy Roberts, a developmental pediatrician who specializes in autism at Toronto's Hospital for Sick Children and at Bloorview Kids Rehab] warns parents that she's never seen diet make a difference in a child who is not among the 20 per cent of autistic children with stomach and digestion issues. And she says the link between these issues and brain function remains unknown.

If parents do want to forge ahead, she advises a very gradual approach, with a huge amount of documentation to chart any changes. And, like most doctors in the field, Dr. Roberts says, she will also emphasize continuing with behavioural therapy.

Some doctors embrace alternative medicine more than others, of course. And these doctors are encouraging the GFCF diet. Even here, though, the good ones use a very careful and cautious approach, with lots of caveats.
Chatham, Ont., pediatrician Wendy Edwards, who has experienced some success with a gluten- and dairy-free diet for her 8-year-old son, says parents considering the diet seek her out or are referred by other doctors who are open to the idea. "Doctors are starting to realize this is becoming huge and you can't just brush it off any more."

But she finds herself managing the expectations of parents thrilled to have found an ally. She is careful to tell parents that their child may not improve on the diet. And like her more conservative peers, she is a firm opponent of chelation therapy (a metal-detoxification process) and oxygen chambers.

And Dr. Edwards warns that temporary improvement doesn't mean a cure. The next developmental stage may trigger a new round of symptoms.

I strongly advise any parents who are considering the GFCF diet to work very closely with their doctors, to chart symptoms and behaviors before as well as after the start of the diet, to be as objective as possible and not see any change as a potential cure, and to expect that time will be needed before any positive effect can be said to be lasting, assuming any appear.

Bookmark and Share

Monday, February 04, 2008

Don't Neglect Calcium on GFCF Diet

Many parents of autistic children have tried removing the wheat protein gluten and the dairy protein casein from their food, known as the GFCF (gluten-free, casein-free) Diet. Whether the positive results are anecdotal, real, or false hopes are not yet known, as I wrote about in Gluten-Free, Casein-Free Diet for Autistic Children Still Controversial. The results of a major five-year study on the GFCF Diet should be out later this year.

In the meantime, the National Institutes of Health (NIH) has also been conducting a major study, along with the Cincinnati Children's Hospital Medical Center. A preliminary finding is so serious that the NIH announced early results even before the full study is released. Thin Bones Seen In Boys with Autism and Autism Spectrum Disorder.

The researchers believe that boys with autism and ASD are at risk for poor bone development for a number of reasons. These factors are lack of exercise, a reluctance to eat a varied diet, lack of vitamin D, digestive problems, and diets that exclude casein, a protein found in milk and milk products. Dairy products provide a significant source of calcium and vitamin D. Casein-free diets are a controversial treatment thought by some to lessen the symptoms of autism. ...

"Our results suggest that children with autism and autism spectrum disorder may be at risk for calcium and vitamin D deficiencies," Dr. Hediger said. "Parents of these children may wish to include a dietitian in their children's health care team, to ensure that they receive a balanced diet."

It's important to note that only nine boys were part of this study. Too few girls have autism to provide any good candidates for it.

Parents of children with autism know that their children are often picky eaters at the best of times, so getting them to eat calcium-rich foods that don't contain dairy may be a continuing issue. Digestive problems also are common in autistic children and that may play a role in the non-absorption of calcium.
The researchers do not know for certain why the boys had thinner than normal bones. A possible explanation is lack of calcium and vitamin D in their diets. Dr. Hediger explained that a deficiency of these important nutrients in the boys' diets could result from a variety of causes. Many children with autism, she said, have aversions to certain foods. Some will insist on eating the same foods nearly every day, to the exclusion of other foods. So while they may consume enough calories to meet their needs — or even more calories than they need — they may lack certain nutrients, like calcium and vitamin D.

Other children with autism may have digestive problems which interfere with the absorption of nutrients. Moreover, many children with autism remain indoors because they require supervision during outdoor activity. Lack of exercise hinders proper bone development, she said. Similarly, if children remain indoors and are not exposed to sunlight, they may not make enough vitamin D, which is needed to process calcium into bones.

Parents should not simply remove foods from a child's diet without working with a physician, nutritionist, or dietitian to ensure that the remaining foods give a full spectrum of all essential nutrients.

General information about autism may be found on the site of the National Institute of Child Health and Human Development.

Bookmark and Share

Wednesday, January 23, 2008

New GFCF Resources on About.com

While we're waiting for the results of a huge five-year study of a gluten-free, casein-free (GFCF) diet to come out of The University of Rochester Medical School (possibly as soon as May, but I can't be sure), parents will want to check into the resources currently available.

Lisa Jo Rudy's Autism blog on About.com announced New Resources on GFCF (Wheat and Dairy-Free) Diets on the Autism.About.Com Website.

A brand new section of the site, Wheat and Dairy Free Recipes and Tips for Children with Autism, includes articles from around About.com focusing on what's, where's and how's of shopping and cooking for kids who can't eat wheat or dairy.

Bookmark and Share