The diet only worked on my elder b/c he had diahhrea, nightmares/terrors and it was only dairy that worked... months later we added gluten for nearly a year and it didn't help.

Dairy made huge changes instantly. Nightmares/terrors/diahhrea (which was all daily) gone. Also gone was the constant tripping/falling and the leaning when he sat.

I've posted the story more than once but we did give him some later and had 24hrs of nightmare behaviour that ended with him calm as calm slamming his head off the porch step (concrete) giving himself a bruise and swelling on the middle of his forehead.

Is it a cure... NO. Does it help... Yes. If you feel crappy all the time how easy is it for you to learn anything new?? If these Dr's were expecting "magic changes"... then they found none... if they were looking for happier children that were able to learn more/faster... then maybe they should have changed the terms of their paper.

What they just did was say "some autistic kids are like that" and allow Dr's to ignore the gastronmic issues once more in autistic children... whereas they would have dealt with them in "NORMAL" children.

Hello friends -

This is so sad to me because it will do exactly that the mainstream medical community is so afraid of; drive more parents of children with autism to alternative practioners.  How many parents will seek out the internet for help when their regular pediatrician tells them to ignore the 24/7 reality of their childs condition based on a small epidemiology study from children born as long as thirty years ago?

My son had chronic problems with alternating diarehhea and constipation, but never got a diagnosis on it.  In fact, I'd be amazed if it warranted a scribble in his folder by his pediatrician.  If he were included in this study, he would show up in the 'no' group, but the reality of his situation wouldn't change. 

We have a large array of clinical evidence that tells us that the children with autism generate an immune response to proteins in wheat and dairy at much more robust levels than their non diagnosed peers.   I'm not certain that diagnostic code based chart reviews of a different generation of children is sufficient to rethink the findings from applied research.

- pD

72% of the *control group* had problems? There's something wrong with that.

Stimulant medications are not the only common medications for autistic children that can cause constipation.  Some anti-depressants and all neuroleptics can do it too.

Very very intresting indeed.

My older girl would be comparable to someone of that control group who would have a history GI problems, and perhaps we are particularly blessed with conscientious physicians, but she had careful chart and medication reviews, tests of elimination diets, food diaries, medication trials, and also put through that battery of tests as noted by the NYTimes [an intense experience], so I did not observe in our instance any particular negligence in taking GI issues seriously by the medical profession. As it turns out, the root source was stress and irregular eating patterns, but her doctors certainly went through the process of checking for celiac, crohn's, irritable bowel, neural dyscoordination, etc., etc.

One recent development (which may turn out to be something real or another of the multitudinous news stories) was that report of a possible genetic variant that may result in GI complications and autistic behaviors, so I wouldn't say the jury is entirely out, but I believe care needs to be taken not to extrapolate or assume as a given a particular side ailment to every child. It seems to me that the outcome for the control group highlights that what seems to be a high rate of a particular medical problem may be as much a matter of being human and that humans sometimes get sick, rather than an assumed comorbidity with any particular diagnosis. Our anecdotal experience, with some medical corroboration is that most of the time my daughter with autism's digestion is fine; sometimes it's not, but usually the source can be traced relatively easily. Given human diversity, it may be different for another child with that same DSM diagnosis. My other daughter's digestion and related is much worse - she is not diagnosed with autism.

My understanding is that the GFCF study at Rochester is still in the works...I make inquiries from time to time but it's not clear whether that's been written up and submitted for publication yet.

The problem with people not getting actual GI issues diagnosed by general practitioners is (A) the crackpots pushing diets (dr immediately assumes parent is responding to that) and (B) the fact that the parents insist it's part of the autism.

It took me repeatedly telling my son's dr that he had frequent diarrhea and because he has a desire to eat so often an elimination diet to determine the cause was not feasible. Often things aren't diagnosed because parents go look, not eating this makes it better, and nothing is researched further, because, well, who wants to have invasive procedures done on their child? The pediatrician doesn't want to do unnecessary procedures, either. There was also the problem of my son growing typically. Actually atypically, he's in the 95 percentile for height and weight. He's lean and tall.

I'm pretty sure we should have had tests done when he dipped on the scales at 9 months, but adding milk helped, so we didn't. Again, no one wants to do unnecessary invasive testing on an infant (he was full time breastfeeding, full time formula feeding, and eating solids)

When we finally got the testing done, we learned he has disaccharidase deficiency. It was interesting. A friend suggested we try no dairy for a week. I got milk substitutes. He got worse. Now I know it's because milk substitutes still have sugar in them.

Lactose intolerance is a form of disaccharidase deficiency. My son, has about every form of disaccharidase deficiency. He has 10% of the lactase but only 3% of the sucrase he should have. Milk is also easier for him to digest because of the protein.

Before they gave me the exact diagnosis, they'd given my husband a diet and a layman's description over the phone. I searched and the closest thing I'd found was sugar malabsorption (the kind of disaccharidase deficiency he has is extremely rare, so it didn't come up when I searched explanation that he could only digest 3-10% of sugars). 

In my search I found that malabsorption is often mistaken for lactose intolerance in infants, and if it is not treated, it can cause mental retardation (in malabsorption, the child cannot process galactose, a monosaccharide, either). That got me wondering, if maybe whatever Tristan has exacerbated his deficits. I'll never know.

I know we were giving Tristan more of what he couldn't process properly to make him grow, at a very young age. (lactose, not casein).

The thing is, mine is a rare case. It's probably not a good idea to go giving every kid that dips on the charts an EGD, considering the risks involved in anesthesia. The risk is not worth it.

My wife reacts poorly to lactose, onions, garlic, and several other things. 

I, on the other hand, can eat and do eat everything. I am constantly amazed by how many people I meet with serious allergies to various foods. 

Parents and advocates often ask, "Don't you have problems with some foods?" They're almost disappointed when I say "Not in the least."

I'm missing all the proper checkboxes for someone with autism -- except the HFA diagnosis and symptoms as a child. Oh, well. Why be normal, even within the abnormal?

My poor wife's family, it seems everyone has dietary issues, diabetes is common, and they can't all enjoy chocolate as much as I do. What a horrible fate. 

The N.Y. Times article says about this study, "The study found that the vast majority of both autistic and non-autistic children suffered from bouts of common gastrointestinal problems like constipation, diarrhea, abdominal bloating, reflux or vomiting.  Feeding issues and picky eating were also common.  Some 77 percent of autistic children and 72 percent of non-autistic children were affected by one or more of these complaints over the 18-year period."

I'm wondering whether this study differentiated between chronic severe problems and sporadic or mild problems.  Everyone occasionally suffers from diarrhea due to stomach bugs or food poisoning.  Many people have mild constipation from low fiber diets etc.  But these are not the same as the severe GI issues that affect some people with autism, such as chronic diarrhea or severe constipation, often with severe pain, discomfort, maldigestion.

When my son was first diagnosed with autism and I went to a meeting of a local autism support group (which was not biomedically oriented), I was amazed at how many parents talked about feeding issues and gastrointestinal issues in their kids.  I had no idea that those were often associated with autism.  Nowhere near as many of the parents I know with non-autistic kids report these kinds of issues.

I find it difficult to believe that 72 percent of non-autistic children have more than sporadic or mild gastrointestinal issues.

Kristina says, "The study suggests that 'special diets'---in particular the gluten-free casein-free diet, which many families have placed their autistic children---are not warranted as treatments for autism. As noted in the July 27th New York Times placing an autistic child on a restrictive child should only be done 'after having appropriate diagnostic tests done.'"

In the first place, there is no diagnositc test to predict whether a person with autism will benefit from this diet.  The only way to know is by trying it.

In the second place, while many parents report that this diet helps their children's digestion, that is not the only reason for this diet.  Parents such as authors Lisa Lewis and Karen DeFelice reported that their sons did not have obvious digestive issues, yet the GFCF diet helped tremendously with behavior, mood, cognition, and communication.

Kristina, you said that allowing some wheat in Charlie's diet has not had an affect.  Yet you have also written recently that he has had an increase in behavioral issues and meltdowns.  You attributed this to his recent growth.  You also mentioned that these meltdowns sometimes occurred after an enjoyable meal out (hamburgers w. wheat buns?)  Makes me wonder...