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.