The Lactose Intolerance Clearinghouse Has Moved.

My old website can be found at www.stevecarper.com/li I am no longer updating the site, so there will be dead links. The static information provided by me is still sound.

For quick offline reference, you can purchase Planet Lactose: The Best of the Blog as an ebook on Smashwords.com or Amazon.com or BarnesandNoble.com or a whole lot of other places that Smashwords is suppose to distribute the book to. 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.

I suffer the universal malady of spam and adbots, so I moderate comments here. That may mean you'll see a long lag before I remember to check the site and approve them. Despite the gap, you'll always get your say. I read every single one, and every legitimate one gets posted.


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.

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