The GFCF Diet Loses its Legs
March 22nd, 2008
Spring is here, according to the calendar, although the fresh snow on the ground would seem to contradict that idea. At any rate, the Winter quarter is over, the tests have been graded and the final grades submitted to the Registrar and I finally have time to attend to my much-neglected ‘blog.
A lot has happened in the autism world since my last post. The VICP has agreed to pay damages to the family of a young girl whose mitochondrial dysfunction was possibly worsened by her reaction to vaccines. I say “possibly” because it is not at all clear what mitochondrial dysfunction she has, and so it is impossible to assess the biological plausibility of the claim.
This same restraint has not been shown by many in the vaccines-cause-autism camp, who are trumpeting this “victory” to the skies. They are apparently unaware that even if her autism were caused by the interaction of a mitochondrial dysfunction and vaccines, it is unlikely that a significant portion of autism is caused in this way. Again, not that I haven’t conceded that the vaccines were the “trigger” for this young girl’s autism – that has yet to be shown.
It has been fascinating (“appalling” might be a better word) to watch the many “autism advocates” rush to get on the new vaccines-and-mitochondrial-dysfunction-cause-autism bandwagon. I am reminded of a whale-watching trip I took, where most of the passengers kept rushing from starboard rail to port rail, following the cries of “There’s one!” ignoring the naturalist who was trying (largely in vain) to point out the real whales (instead of whitecaps and kelp).
In the midst of all the hoopla about mitochondria, two pieces of real research were published that should have a major impact on the way the followers of DAN! are treating their children.
In this study, Cass et al examined the urine of 65 boys with autism and 158 boys without autism (controls). They used HPLC (high-pressure liquid chromatography) to identify potential opioid peptides in the urine and then further examined these with MALDI-TOF MS (matrix-assisted laser desorbtion ionisation-time of flight mass spectroscopy).
Their results?
“There were no significant differences between the HPLC urinary profiles of the children affected by autism and the typically developing controls. In those cases where HPLC showed peaks in the locations at which opioid peptides might be expected to be found, MALDI-TOF established that these peaks did not, in fact, represent opioid peptides at all.”
This study confirms the finding of Hunter et al (Opioid peptides and dipeptidyl peptidase in autism. Dev Med Child Neurol. 2003 Feb;45(2):121-8.), whose study found that:
“Opioid peptides were not detected in either the urine of children with autism (10 children; nine males, one female; age range 2 years 6 months to 10 years 1 month) or their siblings (10 children; seven males, three females; age range 2 years 3 months to 12 years 7 months) using liquid chromatography-ultraviolet-mass spectrometric analysis (LC-UV-MS).”
Of course, the Cass et al study has more subjects and uses much more sophisticated, sensitive and accurate instrumentation, but it had the same findings. One wonders what it was that Dr. Reichelt was finding in the urine of autistic children. Whatever it was, it apparently wasn’t an opioid peptide.
For those who are new to controversies in autism, the “opioid peptide hypothesis” was the driving force behind the gluten- and casein-free (GFCF) diet.
It was postulated, by Karl Reichelt and others, that the proteins gluten (found in many grains, esp. wheat) and casein (found in milk, including human milk) were being broken down to shorter oligopeptides (proteins consisting of only a few amino acids) that were mimicking the endogenous opioid peptide (endorphins and enkephalins) in the brain.
It was further postulated that these “opioid peptides” were being absorbed through the “leaky gut” of autistic children (more on this later) and causing many or all of the symptoms of autism.
Now that it has been shown – twice – that there are no opioid peptides in the urine of autistic (or non-autistic) children (as there would be if they had been absorbed into the bloodstream), the primary hypothesis supporting the GFCF diet has been disproven. All that’s left is the rather pathetic argument “But it works!” – pathetic because the studies done to date (Knivsberg et al 2002, Sponheim 1991 and Elder et al 2006) have been mixed. Actually, only the study that included Karl Reichelt as an investigator (Knivsberg et al 2002) showed any improvement on the diet – the others showed no difference between the diet and control groups.
The other significant recent study looked at the other “leg” supporting the GFCF diet – the “leaky gut” hypothesis.
This study looked at the intestinal permeability and glucagon-like peptide-2 (GLP-2) response to feeding, both of which have been claimed to be abnormal in autistic children. They used the lactulose:mannitol sugar permeability test for intestinal permeability.
This was a pilot study, with 14 autistic children and 15 controls (7 developmentally normal siblings of the autistic subjects and 8 unrelated developmentally normal children).
The results?
“Our study did not detect differences in these measures of gastrointestinal function in a group of children with autism.”
Of course, this is just a pilot study and will – I hope – lead to a larger study with great predictive power. Another recent study of 23 children with PDD (Kemperman et al 2008) also showed no abnormal intestinal permeability. This calls into question the one study (D’Euphemia et al 1996) that found altered intestinal permeability in 9 out of 20 autistic subjects (and 0 of 40 controls).
Now, I’m not naïve enough to think that either of these studies will have the slightest impact on the people who have their children on the GFCF diet. It wasn’t the data that convinced them to start the diet, so data won’t convince them to stop the diet. No, what I hope is that parents who are contemplating the GFCF diet will read these studies and think about it.
I also anticipate a number of impassioned stories about how the GFCF diet “recovered” their autistic child. I have no doubt that the people who write them are going to be very sincere, telling the “truth” as they see it. I also expect that I won’t be hearing from the parents who tried the GFCF diet and saw no results.
That’s the nature of things – the people who try it (whatever “it” might be) and experience improvement will attribute that improvement to whatever they tried. They will have become true believers and will be eager to share their discovery. The parents who try the GFCF diet and saw no improvement will not be nearly as eager to talk about their experiences. Especially given the hostility their story will generate among the “true believers”.
So, for those of you who still have open minds, the data has been laid before you. Enjoy!
For the rest of you – just pretend that I’m in the pay of “Big Pharma” or whatever fever-dream conspiracy is trying to suppress the “truth” about the GFCF diet. It will help with the cognitive dissonance.
Prometheus
Filed under: Autism Science, Autism Treatments, Critical Thinking
March 22nd, 2008 at 3:21 pm
This is a troublesome matter that won’t go away, though I wish it would go and join secretin as yesterday’s fad.
For whilst I think it is Bollox, unfortunately (in my opinion) many on the spectrum do not think it is.
Now my observation of that phenomenon can be couched in terms of false consciosness and having allowed oneself to create one self conception of autism in terms given to one from outside within the pervasive cultural medical model stereotype.
Be that as it may be, it does become a rights and respects issue, in that to deny any true believer in the diet, there right to it would be to significantly discount there life story and throw me open to accusations of deciding what autism is and what isn’t just like the curebies do.
To ignore the fact that so many of us, who are otherwise advocates of autistic rights, have bought into this is to do such people disrespect.
Well you see this is where post modernism allows a get out, and why as a philosophy it is not inimical to liberation theologies.
As I have always said, science is not the be all and the end all. I know that drinking is bad for me, but I still do it, so who am I to deny someone else a dietary practice that is not harming me. It’s like being Kosher really, no logic to it, but people do it anyway.
March 22nd, 2008 at 5:31 pm
Next to the phrase “Autism - isn’t that caused by vaccines/mercury in vaccines/mercury??,” the second most common phrase I am likely to hear from supposedly well-meaning uninformed people when I mention that my son is autistic is “OH, shouldn’t you have him on a no wheat and no dairy diet?” Where the heck are these people getting their information? When I say that I’m not putting my kid on “the diet,” they seem to think that I’m a terrible mother because I’m not even willing to try. In the case of my son, little that he eats would be permitted on the GFCF diet. He’d be miserable, the rest of the family would be miserable, and I’m not doing it.
Recently my mother called me to say that a friend of hers who is a celiac told her that the GFCF diet works miracles for autistic children. “You should try it,” she said. I explained that I’m not about to do it, and that she should talk to my sister (whose children have severe allergies to dairy, among other things) about the cost and disruption involved in special diets and think about whether she thinks I should put us through that. “Well, this friend of mine is great, and seems to know a lot, and I just thought it might be helpul, and why not try it.”
ARRRGGGGHHHHH. Of course, it did no good to scientifically disprove that vaccinations cause autism, so I expect it will do no good to scientifically disprove that the GFCF diet “cures” autism. But a girl can dream.
March 22nd, 2008 at 8:44 pm
In a randomized controlled trial of the CG-GF diet, there was no significant effect of this diet. (Elder et al, 2006)
March 22nd, 2008 at 9:36 pm
The GFCF stuff drives me batty. I’ve got celiac and it drives me batty. It wasnt found with an opiod test, it was found the old fashioned way. Thrilled as I am that now I can go to any grocery store and find noodles or cookies, if I can’t get grownup food soon I’m going to die of infantilization.
That is, of course, assuming I don’t kill the next person who asks me if I shouldn’t also be off dairy because, “you know, milk is bad for your autism”. GAAAAAH.
March 23rd, 2008 at 3:00 am
[...] discussed about autism in the past two weeks—-below are posts about genetics, the special diet, Hannah Poling, vaccines, music, education, Ashley X, diagnosis, special education, mitochondrial [...]
March 23rd, 2008 at 11:15 am
Some people think that excluding dairy and wheat from the diet can prevent bothersome diarreah - which autistic people can supposedly be more sensitive to because of sensory issues.
In Norway people seems to be convinced about the diet, and when this study came up they just modified the theory to the infalsifiable.
March 23rd, 2008 at 6:26 pm
I want to be absolutely clear that there are some very good reasons - scientific, evidence-based reasons - to be on a gluten-free and/or casein-free diet. Celiac disease is an excellent reason to be on a gluten-free diet, with lots of studies showing significant improvement.
Likewise, people with real milk allergies (as opposed to the more common “presumptive” diagnoses) may also be sensitive to casein.
However, the GFCF diet - as a treatment for autism - is not well-supported by the available scientific literature. This does not mean that it doesn’t work or that it can’t work, just that nobody has yet shown that it does work.
I’m an open-minded person: if someone shows me legitimate data showing that the GFCF diet is effective for autism, I will post an article to that effect right here on this ‘blog. I am willing to be convinced, but nobody seems to be willing to bring me the data - which I have repeatedly been assured is “out there” (see: “X-files”).
As usual, anecdotes, stories and narratives are not substitutes for data.
Prometheus
March 23rd, 2008 at 7:03 pm
We tried “the diet” with our autistic son with no results. We tried it for about three weeks; advocates may say we should have stuck with it longer. He has never had any digestive or intestinal issues (e.g. chronic diarrhea) — it was just something we decided to try because we’d heard a lot about it, and had a “can’t hurt, might help” attitude toward it. But, honestly, it was a pain in the ass, with no payoff. Our son’s school (VBA-based) has a GFCF policy. We are okay with that — it’s just lunch, after all. So far the fact that we are non-believers (in the diet [at least for our son] and in the vaccine theory) hasn’t caused any problems, but we avoid any “ideological” discussions about it. It’s kind of like being in the closet. Maybe we need some kind of secret handshake…?
March 23rd, 2008 at 7:27 pm
Rebecca,
When I was a child, I was told that there were three things that “polite” people did not discuss in mixed company (define “mixed” in any way you like): politics, sex and religion. I suppose we have to add “autism remedies” to that list.
I know how you feel - it’s a bit like being an atheist in a devoutly religious community. I poked my nose “out of the closet” a few years ago and received such a hostile reply that I’ve only discussed my non-belief under a pseudonym since then.
I like the idea of a secret handshake. Maybe just a pinch of flour on the palm…
Prometheus
March 24th, 2008 at 3:51 pm
At least the time the biomed mamas spend policing their kids’ GFCF diets is time they can’t spend polluting the internet with their screeds.
But even this doesn’t make it right to baselessly prevent a kid from having a slice of real pizza now and then.
March 25th, 2008 at 8:48 am
I have to admit that we started the GFCF diet for my son with skepticism back in October. We decided to try it mostly because as Rebecca said it “can’t hurt, might help”, and also as she mentioned, my son had never had gut problems, so did he even need it?
Surprisingly, we and his teachers think the diet has helped moderate my son’s overall intensity a good bit, so I’m no longer risking a broken nose everytime he hugs me. Of course, the fact that we have IBS and lactose-intolerance in the family may be a reason why it’s helped. We tried to be a bit scientific about it, in that we didn’t change anything else in his program around the time when we started the diet, and still haven’t changed anything else. We wanted try and track if this particular strategy was worth the effort and so far, it is.
The diet is a pain in the rear in a lot of ways, but it has made me feed him a little better in general since fast or convenience food isn’t an easy option. I’m definitely NOT a biomed mama - my son is mostly vacc’d with omissions due to shortages. But for my particular child at this particular time, the diet is a useful tool, just like Floortime, moderate ABA, speech therapy, OT, and gymnastics. I never expected a “recovery miracle”, since simply having my son was miracle enough!
March 25th, 2008 at 3:00 pm
As you can see, my prognosticative abilities rival those of the great Edgar Cayce. Actually, they’re better, since one of my predictions came true!
“I also anticipate a number of impassioned stories about how the GFCF diet “recovered” their autistic child. I have no doubt that the people who write them are going to be very sincere, telling the “truth” as they see it.”
Please understand my position on this - I am not trying to ridicule or humiliate parents and I certainly am not calling them “liars” (as I have often been accused).
However, testimonials, stories and narratives of how a child (or a group of children) improved on the GFCF diet (or any other treatment) need to be balanced by the number of children who were treated with the diet and didn’t improve.
And, it is also important that we know how many children improved with no treatment at all. As I’ve said before, that number is far larger than many “alternative autism therapy” advocates are willing to admit.
Melanie, thank you for your story and I am happy that your son is doing better.
Prometheus
March 26th, 2008 at 3:08 am
Funny thing about the “gluten-free/casein-free diet”, it’s all about the really young kids. Ever hear of an autistic teenager on the “diet”? I doubt it. Having been in the club for a while, I’ve noticed that the families mostly quit the GFCF by 3rd grade or so. When you ask them why? They rationalize: Well, his gut “healed” or “matured” so we don’t need to do it any more.
Families need to come to terms with the diagnosis, rationalize it (even in an odd way), take action, and notice improvement…. which almost always comes with or without any weird diet.
March 26th, 2008 at 2:22 pm
Hi Prometheus -
“It will help with the cognitive dissonance.”
“Please understand my position on this - I am not trying to ridicule or humiliate parents.”
LOL! Speaking of cognitive dissonance!
- pD
March 27th, 2008 at 2:11 pm
pD,
If discussion of cognitive dissonance causes you to break out in nervous laughter, perhaps that’s because you are experiencing it yourself. People with firmly closed minds are often put in the position of having to deny or ignore what is in plain sight in order to maintain their “beliefs”. This is cognitive dissonance - when what you believe contradicts what you percieve.
I am certainly not trying to ridicule or humiliate parents who find themselves using an unproven “therapy” that now has had its only supporting hypotheses firmly disproven.
This is a crisis point for most people - when they have to decide whether to keep doing what they thought (or were told) was working - even though the data doesn’t support it - or to face up to the fact that what they believed simply wasn’t true.
I have a great deal of sympathy for people in this situation, since I was faced with the same sort of “crisis” myself, some years ago. I, too, was convinced that what I was doing was having a significant impact on my child’s condition, but had to face (after much soul-searching and false starts) the fact that the improvement was not because of the treatment, but despite it.
On the other hand, many people are not (yet) in the position to take this sort of step. They are not (yet) ready to admit that they were fooled - mostly by their own wish for success - and that they were wrong. Some of these people may never be ready for that step, but most will eventually come to it.
For those people who are not yet ready (or will never be ready), I anticipate that they will use one of a number of “ego defences” (as my old psychology professor called them):
[1] They will tell themselves (and others) that I am part of a conspiracy to “cover up” non-drug treatments for autism.
I mentioned this in my posting because it is currently the most common. There are others, but this one is the most obviously false. Despite that, it seems to come up most often.
[2] They will say that I am “embittered” or “disillusioned” because the GFCF diet (or whatever other treatment I discuss) didn’t work for my child.
I will certainly admit to be “disillusioned” in the sense that I have “lost the illusion” - I thought that the treatment was working and was surprised, shocked, embarrassed and humiliated to find that it was nothing more than a placebo.
[3] They will say that I do not care for the children or their parents - that I want to keep people from trying a “useful” treatment, like the GFCF diet.
In fact, it is my concern for the parents and the children that causes me to write and post this information. I would like to prevent - if possible - other parents from going through what I (and countless others) have gone through. They don’t need to try something because “everybody” tells them that they need to do it. “Everybody”, in this case, turns out to be a small but vocal minority and their “scientific evidence” is - as it turns out - non-existent.
If nothing else, I want them to know that they are not alone in feeling confused or embarrassed when the GFCF diet doesn’t “work” for their child. It’s not because they weren’t diligent enough or persistent enough - it’s probably because the GFCF diet just doesn’t work. At the very least, it hasn’t been shown to work.
Prometheus
March 31st, 2008 at 1:12 pm
Nice post on the two lines of research related to dietary intervention for autism. I’m aware of a current trial that will end within the next year that is a blinded comparison that used blinded and unblinded challenges. I expect the outcome will be more informative than the Elder et al. (2006, JADD), which is the best study on the topic to date. We should have some answers but data will not sway those that don’t care about them. We still have the notion that sugar intake is related to hyperactivity in children floating around even though there are numerous studies showing that this is unlikely. My favorite was conducted by Hoover and Milich (1994; Journal of Abnormal Child Psychology). Abstract below:
Effects of sugar ingestion expectancies on mother-child interactions.Hoover DW, Milich R.
Menninger Clinic Children’s Division, Topeka, Kansas, 66601.
This study tested the hypothesis that commonly reported negative effects of sugar on children’s behavior may be due to parental expectancies. A challenge study design was employed, in which thirty-five 5- to 7-year-old boys reported by their mothers to be behaviorally “sugar sensitive,” and their mothers, were randomly assigned to experimental and control groups. In the experimental group, mothers were told their children had received a large dose of sugar, whereas in the control condition mothers were told their sons received a placebo; all children actually received the placebo (aspartame). Mothers and sons were videotaped while interacting together and each mother was then questioned about the interaction. Mothers in the sugar expectancy condition rated their children as significantly more hyperactive. Behavioral observations revealed these mothers exercised more control by maintaining physical closeness, as well as showing trends to criticize, look at, and talk to their sons more than did control mothers. For several variables, the expectancy effect was stronger for cognitively rigid mothers.
PMID: 7963081 [PubMed - indexed for MEDLINE]
March 31st, 2008 at 3:59 pm
You write:
========
I also anticipate a number of impassioned stories about how the GFCF diet “recovered” their autistic child. I have no doubt that the people who write them are going to be very sincere, telling the “truth” as they see it. I also expect that I won’t be hearing from the parents who tried the GFCF diet and saw no results.
========
Why do you express such frustration with parents eager to share what worked for them? As you well know, the study in question did not prove they were wrong in their particular case. It certainly suggests that the mechanisms are not understood. The larger body of research appears to suggest that GFCF
You appear to vacillate between tolerance and disdain for those whose first-hand experience is not in accord with research results. Your efforts toward the former are laudable.
Your tendency toward the latter suggests that you believe that if you had a child who had autism symptoms that abated shortly after a diet change, you would come to a different conclusion as to what was going on in their case. I’m not a regular reader of this blog, so perhaps you have tipped your hand. If not, pray do tell!
March 31st, 2008 at 5:22 pm
Brad,
I have nothing but sympathy for parents who are trying to make sense of all the contradictory information that is thrust upon them by (mostly) well-intentioned people. If you read back through my ‘blog, you’ll see that I have covered the reasons why “…what works for them…” can be misleading.
You may not have been in the “autism community” ‘way back in the late 1990’s when secretin was claimed by many parents and practitioners to be “effective” (i.e. “it worked”) for up to 70% of children with autism. When it was finally studied - by a company that stood to make a bundle if it “worked” for autism - it was found to be no better than placebo (i.e. it didn’t work).
You might also be interested to know that there are still parents and practitioners who believe that secretin “works” for autism. I have a great deal of “tolerance” - and even sympathy - for the parents and a great deal of disdain for the practitioners (who should know better).
It is extremely hard to keep from fooling yourself about cause and effect in medical research - it is doubly so when you are either a parent of an affected child (not an objective observer) and/or you haven’t bothered to take the necessary precautions (i.e. placebo, blinding the evaluators, etc.).
I wish I could say that I would have come to a different conclusion were I to have a child who “responded” to the GFCF diet, but I know better. I have fooled myself into thinking that the improvements (and setbacks) I saw were due to things that, in the end, really had no effect at all.
My hope is that by sharing my experiences with self-deception and group-think and by showing the “other side” of currently popular “therapies”, I might save at least a few families from going through what my family had to go through - the frantic pursuit of the latest, newest, “hottest” treatment; the enormous waste of time, effort and money; the anxiety and confusion over why this worked last week and not today and why that worked for another child but not for mine.
Brad, I also have a great deal of tolerance for those who want to know more - who want to learn. We all have our areas of expertise and our areas of ingorance - the key is, as the great philosopher said, knowing your own limitations.
On the other hand, I have little tolerance for those who have closed minds - who already know the “truth”. Part - a big part - of being open-minded is being willing to recognize when a hypothesis - a “belief”, if you will - is wrong and needs to be discarded.
I hope that has “tipped my hand” enough for you.
Prometheus
April 13th, 2008 at 9:15 am
I like that you question and research everything. It is something that is lacking in many parents of children on the autism spectrum. But I’m inclined to agree with Brad that you leave little room for an informed parent to attempt things without being a victim of “group think.”
Every child with autism is different, just like every child without autism. As you pointed out earlier there are some very good and valid reasons for being on a GFCF diet.
Although I agree that the diet is not any more of a “cure” than secretin was, I can see the value of using this diet if the child does have sensitivites to gluten and/or casein.
The study you site has only marginally proven that the peptide theory is false. The new study will probably concur. But that doesn’t mean that some children won’t benefit from a GFCF diet.
I’m not talking about autism symptoms. I’m talking about physical symptoms that exacerbate autism symptoms. A woman in another comment talked about a history of IBS in the family. You seemingly relegated her to your prophetic vision of a defensive parent. She was conceding that the physical benefit might be helping a concurrent condition. But you relegated her to a position of defensiveness.
GFCF as a cure is highly unlikely. GFCF as part of a comprehensive plan to improve overall health and comfort for some individuals on the autism spectrum may be helpful.
I agree that it doesn’t cause autism, any more than MMR vaccinations do. I disagree that it is useless for people on the spectrum. If other conditions exacerbated by gluten or casein exist, than it is only logical to try to quiet those conditions.
April 14th, 2008 at 8:19 am
It isn’t my child who is a low-functioning autistic with retardation — it’s one of my brothers-in-law, my husband’s brother. We take an interest, and not just because it will most likely fall to me and my husband to oversee his care when his parents die.
He demonstrated behavioral abnormalities and a lack of responsiveness from when he was an infant, long before he had most vaccines. He has never been on the GFCF diet. He has also had a number of up-and-down periods, mostly related to how stressed or not he was by the daily routine (or lack thereof, in some cases). With time and growth and behavioural therapy, he has made some great improvements from when he was a small boy; at age 18, now, he is better about eye contact, responsiveness to others, controlling his hitting, and regular sleeping patterns; he has also acquired about a 400-word vocabulary in sign language and even a few spoken words, which we didn’t think would ever be the case. The one dietary intervention which has had a real effect, is cutting down on the amount of sugar he ate — which was quite a lot, as his mum had an unfortunate tendency to feed him a lot of sweeties because he liked them so much.
When other people talk about seeing improvements in their autistic child at one age or another, when they tried one “therapy” or another….I have to admit, we saw improvements and plateaus at roughly the same ages, having tried no therapies whatsoever aside from gentle behavior mods. I strongly suspect that it has more to do with brain growth and development than anything else, as well as (as with any growing kid) the fluctuations of hormones.
I cannot say that I have ever seen evidence of his having “sucked the soul” out of the family, as I’ve seen described some places; the family has had to adapt around him, but it has, and there is hardly any less love for having done so. I think that care of him has actually become very much a bond between certain of his siblings. And he, himself, is definitely a person; a deeply damaged person at times, and a difficult person to deal with at times, but I’ve also never been in doubt as to his personhood. He is a very real and complex being in his own right, not some paper construct dreamt up in the mind of someone with a belief to justify, and we have always had more success with him by paying close attention to his own behavior and attempts to interact with his environment, than by subscribing to one or the other fad attempt to provide an overarching explanation.
I can very much sympathise with people who want — or NEED — to find a cure for autism, especially for people with low-functioning autistics in the family. I can also sympathise with high-functioning autistics who get very pissed off at being described as irreparably damaged, or in some cases as “non-people”. It’s not possible to say that my BIL’s life _wouldn’t_ be a lot better and a lot easier if he were made neurotypical, even though we can’t exactly ask his opinion on the matter. But for people who CAN express their opinion on themselves, to blow off their perceptions of themselves and perceptions of their own needs is unforgiveable.
At the end of the day, everyone has to find their own way to deal with it, anyway, but the thing that I think scares me most about some families, is the amount of real damage they are willing to do to their autistic children in an attempt to “cure”. Chelation isn’t harmless, for example; experiments with rats have demonstrated that chelating a creature which *doesn’t* have heavy metal poisoning does brain damage by itself. This hasn’t been done in controlled trials of humans because, given the rat studies, it would be unethical — but I have no reason to believe it would work differently. We don’t feed antibiotics to people without infections, or antipsychotics to people who aren’t psychotic, precisely because treating a condition which does not exist is frequently harmful. It would be harder to do damage with a GFCF diet, at least, as long as the kids are getting proper nutrition — though I would worry about things like calcium deficiencies.
On a side note, for those who haven’t read it, I would suggest reading Speed of Dark, by Elizabeth Moon. She, too, has an autistic child — and she did an awful lot of talking to autistics in writing it. It *is* a science-fiction novel, but the relationship between autistics and neurotypicals is still the heart of the story, and she does it as well as I’ve ever seen it done.
Sorry about the lengthy ramble. This is really the first time I’ve weighed in on this subject in public and I had a bit to get off my chest.
April 26th, 2008 at 8:23 am
Thank you for this great update on the medical literature!
When my son was first diagnosed we were encouraged to try the GF/CF diet. I talked to a friend who is a HR OB specialist who has a husband and daughter with Celiac Dz, and her description of how she has to cook and bake and never go out to eat and be so careful with school lunches was enlightening on the time and energy it would take. We also wanted to follow a medical model. My son had severe diarrhea and other GI symptoms since birth. So after being dismissed by the “top pediatric GI” specialist in our state with “he doesn’t have a problem, non-specific diarrhea of childhood”, I found Dr. Timothy Buie. We ended up having our son scoped (2.5yrs) and receiving the diagnoses of inflammatory colitis (severe acute and chronic), severe gastritis, and partial pancreatic insufficiency. It took months for all the medications to work, but when they finally did, he slept through the night and wasn’t leaking out on all his clothing all day long! His behavior decreased, stimming decreased, and language increased!
The GF/CF diet won’t help those with inflammatory colitis/gastritis and we would have wasted precious time and resources “giving the GF/CF diet a try”. I highly recommend those children with any GI symptoms to consult with a GI specialist first, as there are many conditions the diet will not help. And as you mentioned, there are very specific diagnoses where the CF or GF diets are necessary, and it is, in my opinion, better to know what you are treating specifically.
April 27th, 2008 at 12:04 pm
Storkdoc,
What more can I say - you’ve said it all. I have to wonder how many parents of autistic children are “home-doctoring” their kids and missing real pathology.
I have had the experience of taking my child to a medical specialist and being told that their physical complaints were due to their developmental disorder. A subsequent visit to a different specialist in the same field revealed that my child had a correctable problem that is also seen in a number of normally-developing children.
Bottom line: doctors are human - some of them get hung up on the “label” and attribute anything they can’t readily explain to “behavioral issues” or other such non-specific nonsense. The trick is to realize that - like other humans - doctors are all different. If you don’t get a satisfactory answer from one, try another.
On the other hand, it is equally important to not have a specific answer in mind when “shopping around”. I see this all to often in parents of disabled children - they “know” what the problem is and they keep “doctor shopping” until they find one that agrees with them.
No matter what the parent thinks that the problem is - gluten/casein, mercury, Lyme disease or alien implants - they can find a “doctor” who will agree with them if they look long enough. This usually ends up being no more than a shared delusion - the parent is happy because they finally found a doctor “who knows what they’re doing”, the doctor is happy because they are making money and have a satisfied customer (the parent), but the child is often left with unaddressed needs.
Prometheus
April 30th, 2008 at 5:04 pm
Prometheus. So astute.
I wonder how it is that you have drawn such conspicuously wrong conclusions about the connection between ASDs and mitochondria dysfunction.
Quote: I say “possibly” because it is not at all clear what mitochondrial dysfunction she has….
It is not all that clear “what mitochondria dysfunction she has” because she does not have a clinically defined diagnosable disorder. If you had bothered to read Jon Poling, who is, after all, a Neurologist with John Hopkins, not a DAN Homeopath, then you might have picked up on the illness progression documented in this child.
First, there were biological markers of a sub-clinical mitochondria dysfunction that would not have been identified in a routine medical exam.
What may we surmise from this fact? Perhaps we may surmise that your assumption that this case is “exceedingly rare” is ill-founded. There is no evidence that any child with the biological markers of mitochondria dysfunction Hannah displayed during her regression would be identifiable by the average pediatrician.
Second, Dr. Polings states recently that Hannah no longer displays any of the abnormal biological markers identified during her regression. After her neurological regression had stabilized, the clinical evidence of mitochondria dysfunction disappeared.
What may we surmise from this? The only clear thing that we can surmise is that to write off the biological event that occurred in Hannah at the age of 1 evidenced in biological markers of mitochondria dysfunction and culminating in encephalopathy as “unrelated” to any other cases of autistic regression would be irresponsibly premature and illogical. We don’t know why Hannah began a decline into encephalopathy. However, the doctors employed by HHS concluded there was sufficient evidence to surmise the chain of events was triggered by an immune reaction to vaccines.
We don’t know whether a subset of autistic regressions are precipitated by either a spontaneous or environmentally-initiated decline in cellular energy production. If some cases are environmentally-initiated, we have not identified what the clear dangers are. We don’t know, based on the evidence at hand, whether or not we can say with confidence that vaccines are not potentially harmful to some children.
Quote: “it is unlikely that a significant portion of autism is caused in this way”
How, pray tell, have you come to this conclusion? You make this statement without evidence, while hypocritically criticizing those who make lifestyle choices without evidence you have deemed sufficient.
There is not the slightest shred of evidence that Hannah’s genetic predisposition to encephalopathy was rare. There is no basis to make any such statement. And yet, how confident you are.
You must be aware that there is a very new but growing body of empirical evidence of mitochondria dysfunction in a subset of children with autism. There is also an interesting link between mitochondria dysfunction and bipolar disorder, seizure disorder, migraines, and the neurodegenerative disorders of old age.
I would like to leave you with one tiny, itsy bitsy fact. I think it’s really, really interesting given your implication that there is no connection between autism and GI dysfunction. The fact is that mitochondria dysfunction is associated with severe constipation.
It’s one thing to discuss the stupidity of the opiod-peptide theory, but it is quite another to dismiss all relevant information. Apparently, in your gifted mind, anytime a woman with a child opens their mouth, all that comes out is hysterics. There is no relevant information in any of the stories of improvement, and there are no alternative theories that may account for improvement in a sub-set of children on these diets that has nothing to do with bizarre fungi or popcorn heroin, or whatever inane theory abounds.
You, in your zeal to show the world how brilliant you are, have over-looked quite a bit of what is going to become very, very relevant information.
April 30th, 2008 at 8:19 pm
I cant help but feel a little sad reading your blog. You sound like an intellegent individual, but very bitter.
I know you dont blame parents for wanting to try and cure their children, but how can you ignore the thousands of testimonials from parents reporting dramatic changes in their autisitic children on the GF/CF diet. Are these people lying or do you think they have great imaginations.
Who cares about the research, all i care about is the fact that in 3-weeks my son is improving dramatically. I know it’s the diet - my childs improvements in 3-weeks could not be explained by just normal development.
The diet is a harmless way to try and reduce autisitic symptoms and when your child is diagnosed with a life long disorder anything is worth a try.
Rachael
May 1st, 2008 at 12:29 pm
M,
Feel free to point out any data that would support your assertions. I’ve looked through the medical and scientific literature and found that those studies that find a higher prevalence of “mitochondrial dysfunction” in autism tend to be small and rather incomplete.
I eagerly await the deluge of studies that is sure to follow the Poling case. As I’ve said many, many times, I am willing - in fact, eager - to change my mind when presented with adequate data. However, as the data stands now, it doesn’t look like a significant percentage of autism is caused by mitochondrial dysfunction.
For that reason, I propose that parents of autistic children not set themselves up for disappointment and/or exploitation by expecting “mitochondrial dysfunction” (now abbreviated as “mito” on the autism lists) to be anything more than the next mercury.
Again, I am willing to admit that I am wrong, if the data warrants it.
I wonder how these various explanations fit the known biology of mitochondria, however. Mitochondria have the ability to replicate, even in cells that do not divide. Damaged mitochondria are replaced by new ones. Only a genetic mutation can cause long-lasting (i.e. permanent) “dysfunction”.
Some people have opined that “toxins” (not otherwise specified) cause mitochondria to become “dysfunctional” - there is certainly plenty of data to support that part of the explanation. However, once the “toxin” is removed, the mitochondria will either recover or be replaced (assuming that the cell survives).
I have no problem with the concept that (ala Hannah Poling) mutant mitochondria overwhelmed at a developmentally critical time by some “exposure” can lead to a developmental delay. People in this situation will be susceptible to a number of “exposures”, not just vaccines, mercury or toxins-NOS. Even a bad cold or a vaccine-preventable illness could “tip them over the edge”.
What I do have trouble seeing - and maybe it’s because I’m a molecular biologist - is how a “toxic exposure” could cause long-term mitochondrial dysfunction, unless the “toxic exposure” is ongoing. Maybe “M” can explain that - with citations, please.
Rachael,
You needn’t feel sad - I’m generally a happy person, not bitter in the least. I do have to admit to being a bit short with people who - even with the best intentions - push pseudoscience.
You have fallen into the usual trap of believing that I think that the “…thousands of testimonials…” are either lies or delusions. You’ve missed an important third option.
There are “…thousands of testimonials…” about the efficacy of horse-back riding in the treatment of autism, about how homeopathy (which is a placebo, by definition) can “work” and - to get right down to it - how secretin “helped” 70% of autistic children who received it. For that matter, there were “…thousands of testimonials…” about the effectiveness of bleeding, purging, cupping and blistering back as recently as the early 19th century.
I don’t think that these people were lying and I don’t think that they were delusional (or, as you put it, “…have great imaginations.”). They saw improvement and attributed it to whatever they were “doing” at the time.
I have a couple of “testimonials” for you to chew on. I know - personally - of three autistic boys who followed the “regressive” pattern of autism onset. All three became non-verbal and unresponsive. All three eventually “recovered” and are now in school without assistance. And all three had no “therapies” apart from speech therapy in the school system. So, when someone tells me that improvement “…could not be explained by just normal development.”, I’ve got a testimonial for them.
The secretin “episode” showed - I think pretty dramatically - that a kids with autism can sometimes improve dramatically even when they’re getting a placebo (or a drug that turned out to be no more effective than placebo). This should be a cautionary tale for anyone embarking on an “alternative” (i.e. unproven or disproven) therapy. Unfortunately, it isn’t - hence my frustration, which you interpreted as “bitterness”.
Also, as it turns out, “the diet” isn’t as harmless as you might have been led to believe. Reduced bone density has been associated with “the diet”, probably due to inadequate calcium. In addition, the time, effort and expense of “the diet” are not without consequences.
Even with all that, I’d be 100% behind “the diet” if there was a shred of data supporting its effectiveness. Those “…thousands of testimonials…” mean nothing unless we know how many children were on “the diet” without improvement and how many would have improved without “the diet”.
Rachael, my ‘blog isn’t directed at you - it’s not meant to make people feel “stupid” or “ignorant” because they are using therapies that have not been shown to work. It’s meant to help those parents who are still searching and are receptive to new ideas. Sadly, it’s become a “new idea” to subject the claims of “alternative” therapies to the same scrutiny that we give to “mainstream” medicine.
Prometheus
May 19th, 2008 at 7:00 pm
Sorry to be poking in here so late.
I find it funny that sooo many seem to have missed the point that I thought was being expressed, its the lack of evidence for the Opioid Peptide hypothesis that was being honored with this funeral, not the application of the diet for those who truly have gluten or casein intolerances. (I hope I got that right.)
May 20th, 2008 at 12:08 pm
Patrick,
Thank you! The gluten- and/or casein-free diets are absolutely appropriate for those with sensitivity or intolerance to either gluten or casein (or both).Celiac sprue is an excellent example of a disorder which is KNOWN to respond to elimination of gluten from the diet.
I often wonder if some of the autistic children who improve on a gluten- and casein-free diet have gluten or casein sensitivities UNRELATED to their autism. After all, autism doesn’t PREVENT people from having other disorders.
And relieving ANYONE of cramping, bloating, nausea and diarrhea would improve their behavior and might even improve their language skills. I know that I am more irritable, less sociable and use more rudimentary (and occasionally more livid) language skills when I am suffering from any of those symptoms.
So, reducing or eliminating gastrointestinal symptoms may very well have a positive effect on autistic children, but that is a long way from saying that gluten or casein CAUSE (or contribute to) autism. And now that one of the major hypotheses of how gluten and/or casein might lead to autism has been disproven, it seems even less likely.
Prometheus
June 14th, 2008 at 5:28 pm
As the only parent at a social skills playgroup who doesn’t do “The diet”, I’m constantly bombarded with “you should try it”, “just give it three months”, and “don’t you want to try everything you can?” Yes, but we have limited funds and I want to spend those funds on options that are medically proven to work.
My cheeks hurt from smiling and my tongue is killing me from biting it. But what can I do, I’m outnumbered by GFCF fanatics. Now, mostly because of a childish defiance, I refuse to do “The Diet”. By the way, that’s how I see it in my mind, in caps and quotes. These parents have put GFCF up on a pedestal so high it trumps ABA, OT, PT and any of the other excepted therapies. Constantly spouting Jennyisms, I can’t help but wonder how these mother’s who are doing what they feel is best for their child can listen to a former Playmate over their doctors.
Come on, Jenny had her child in one of the best schools in the country, hours of ABA in her home and she even had the Mormons bless him. But those aren’t what helped her child it was the “The Diet”.
I think tomorrow I’m going to take a page out of your book and tell these mothers to bring me proof. Not parent testimonials, but fact based, scientific studies that show that this is medically proven to work. Not just some website wanting to sell their overpriced pasta and supplements.
Thanks Prometheus. I may be an outcast a social skills group but maybe they’ll will stop bombarding me with “The Diet”.
Rachael
June 16th, 2008 at 10:45 pm
Just to clarify, I’m a different Rachael than the one a few posts above. I’m completely against putting my child on “the Diet” at least until there is proof that denying my son those nutrients is what will help his autism.
Rachael W.
July 2nd, 2008 at 4:06 am
“We still have the notion that sugar intake is related to hyperactivity in children floating around even though there are numerous studies showing that this is unlikely. My favorite was conducted by Hoover and Milich (1994; Journal of Abnormal Child Psychology).”
Actually, this study shows nothing of the kind. How could it, at no time was any subject of the study actually given any sugar as part of the trial.
This trial showed that mothers who had a strong expectation that their children would react to sugar perceived a reaction even when no sugar had been given. This in no way disproves the hypothesis that actually giving the child sugar could provoke hyperactive behaviour.
July 2nd, 2008 at 3:40 pm
Andrew,
You are absolutely correct that the Hoover and Milch study did not administer sugar to the children. They did, however, observe that “sugar-induced hyperactivity” was reported by the parents when - as you noted - none of the children received sugar.
This is my favorite study, not because it definitively proves that sugar doesn’t cause “hyperactivity”, but because it shows at least one alternative explanation for the oft-repeated parental complaint that sugar causes their little ones to be “hyper” (hint: it’s not the the sugar).
Fortunately, there are a number of good studies that have shown that “sugar-induced hyperactivity” is non-existent and is probably the result of parents observing objectionably “hyper” behavior and mistakenly attributing it to sugar intake. This has several interesting parallels in autism “therapies”.
Prometheus
July 8th, 2008 at 12:17 pm
Somehow, I expected better from Scientific American.
http://www.sciam.com/article.cfm?id=investigating-environmental-origins-of-autism
July 8th, 2008 at 11:38 pm
forgive the double post, please just use this last post….
(corrected, “cleaned up” version)
Prometheus:
Let me first start by saying I am skeptical of GFCFDF (DF=dairy free, maybe dairy-free is part of a GFCF diet I never checked, I just knew it was one of the things we were supposed to remove) diets as well.
I am hoping for a study that has at least 50 documented case studies, which show a patient in their normal daily activies, and once the GFCFDF diet is implemented, over a period of 3 months, with no other therapies, there is a marked improvement. Why isn’t this being done by DANs, if they are so sure?
My daughter was recently diagnosed with Autism.
She turns 3 in September.
She was healthy, happy and had begun to use several words. Then she regressed.
She didn’t like being held down, would not look you in the eye, and was very self-involved.
We thought she was just being precocious.
She stopped counting on my fingers, she stopped saying mommy, and very infrequently would say daddy.
Her symptoms seem much better than other kids’ stories.
She doesn’t do the arm shaking, nor severe tantrums (as long as when she gets upset, you immediately address it, saying, “yes, sweetie, I know, I understand, it’s ok”).
She plays somewhat with her older, neurotypical, gentle brother. She gives us a lot more eye focus lately, and is very affectionate.
However, she still does not really play with other children and sometimes “zones out”. She makes grunts, throat-clearing, and ‘diggy-diggy-diggy’ speech, instead of using words.
She has only said Mommy once, in the past few months (we think that is what she said), and that was very recent. She also never points to anything, except for the first time, in a long time, last Saturday, she was looking over a counter-top staring.
I said, “what are you doing girlie, what do you want?”. She pointed to the tea pot and I was very excited.
We started the GFCFDF a few weeks ago. The “mommy” statement and pointing have bothed occurred since the start of the diet.
At first, we didn’t think it was really doing anything, and so we started letting her have a little of this and that, but almost zero cow milk (only fortified chocolate soy milk-she loves it). The only cow milk she gets is a bite of chocolate now and again, or an accidental bit in some food she eats. She used to consume a half-gallon of milk a day, lucky charm cereal, occasionally gerber’s hawaiian delight, and the occasional piece of apple and never more than 2 bites of normal food, no matter how hard you tried.
When we first started the GFCFDF (very strict the first two weeks), she was noticeably more hyper.
I am not sure it has helped, yet I am not so sure it hasn’t. I am not obvlivious to the fact that we have implemented other indirect therapies (more play time, more instructional play, less TV, more focus on reacting to her needs, etc). I realize these could be the reason for the improvement, as small as it is.
Sometimes I worry she isn’t autistic, but some other PDD that I don’t know of. Why? You didn’t ask? Because, she does play sometimes with her brother, and she gives you eye contact, most of the time. She responds if you clap and raise your voice, she is affectionate and great at task/problem solving during normal play.
I just wish I could be given a clear diagnosis, that I trust, and what is her prognosis. Where will we be in 3 years!?!?
Also, regarding research…are they doing studies to see if parents of children with autism, have a higher than normal percentage of using Seratonin-increasing Anti-Depressants?
I used Paxil for years, for anxiety. How many other parents did? Don’t worry, I don’t have guilt, I just want think it needs to be invesitaged.
I have heard that these kids have higher Serotonin-levels. Serotonin increasing Anti-Depressants (Paxil, Zoloft, Prozac, etc) starting becoming really popular in this country, about the same timeframe as the increase in Autism.
Also, as far-fetched as it sounds, parents setting their kids in front of Elmo DVDs for hours, and other hypnotic programs has become much more common. Could there be a correlation? The use of VHS and DVDs to do facilitate this Television-nanny, coincides with the Autism increase timeframe.
When I say this, I realize that not all children will be susceptible. I am saying some have a genetic “weak link” that might cause this PDD.
In fact, even more far-fetched, the increase of Autism happened slowly from the 1940s and then began to progress faster and faster. What started about the same time and progressively became more widely used, in the same time frame? Television. What studies have been done to identify any possible correlation of heavy exposure to Television and Autism cases?
Or how many of the children came from parents with heavy use of Television in their past.
It is far-fetched, but the visual stimuli is so important to these kids, and they are calmed by Television, almost all of them. It seems almost plausible.
And as a scientist, you should be able to see how the brain could become somewhat flawed, from generations of Television abuse and it’s affect on the brain of the parents, and that it could cause a mutation that is passed on to the children and then activated when they are exposed to high concentrations of Television viewing.
These type of “outside the box” theories and hypothesis should all be evaluated.
Thoughts? Is there any research you know about, whether through hereditary or environmental affect?
Thanks for letting me rant. Sorry for the long entry.
July 9th, 2008 at 12:23 pm
Tracy,
Since the “CF” in the “GFCF diet” is for “casein-free”, that essentially eliminates all dairy products, since all of them will contain some amount of casein.
As for why the DAN! dox haven’t studied the GFCF diet and published their results, the answer I keep getting is, “We’re too busy saving lives to publish our results!” Mind you, they’re NOT too busy saving lives to spend several days at a time lecturing to parents (potential customers) at DAN! conferences. Still, it’s a better excuse than “The mainstream medical journals won’t publish out results!”, which has been definitively disproven by the writings of Bernard et al, Holmes et al and Geier & Geier.
The real issue about the diet is NOT whether autistic children show improvement while they are on the diet; it is whether the diet is the CAUSE of that improvement. This seems to be an intellectual hurdle too high for the folks advocating the diet to negotiate. “Case reports” cannot distinguish between spontaneous improvement and improvement caused by the therapy.
In short, ALL autistic children improve over time. If they DON’T improve, they don’t have autism, since autism (as I’ve said over and over) is a syndrome of developmental DELAY, not developmental STASIS. Attributing ALL improvement to the therapy de jour is as wrong-headed as attributing all deterioration to whatever was happening at the time.
This leads nicely into your concerns about television. While I worry about the influence of television on the mental and moral development of our youth, I doubt that it is capable of causing autism. If it were, the “Howdy Doody” generation - of which I am the tag end - would be wall-to-wall autism. Despite much interest in finding psychological and/or social damage from extensive television viewing, the results of such research have been generally inconclusive.
Your idea of a heritable “flaw” in the brain caused by television recalls the hypotheses of the late Jean-Baptiste Lamarck (1744-1829), who thought that acquired traits, such as the strong arms of the blacksmith, could be passed on to subsequent generations. Unfortunately, that hypothesis has been disproven.
Finally, while there has been no research I am aware of showing that taking anti-depressants during pregnancy can cause autism, there IS a large body of data showing that autism is more prevalent in families with a history of mental illness. I don’t recall if depression has been singled out as being more likely in families with autistic members, but depression is probably the fastest-growing psychiatric diagnosis in the Western world.
I am all for evaluating “out of the box” hypotheses, but I am not sure that we (as a community) should be spending our limited resources (research money, research facilities and researchers’ time) on “low-probability” hypotheses. If someone wants to self-fund a research project (it wouldn’t be too expensive) to look into these questions, they are welcome to do so.
The biggest problem with the “There ought to be a study…!” response is that the people interested in such a study are usually not able to formulate, carry out or fund such a study. Therefore, they have to convince somebody else (usually “the government”) to fund it and then convince yet another somebody to DO the research.
And therein lies the problem: none of the good psychological and neurological researchers want to waste their time doing studies that they are pretty sure won’t yield any meaningful results. In addition, none of the major funding agencies want to FUND research that has a significant chance of yielding no meaningful results. So, it’s up to the people who “believe” in these hypotheses to generate some preliminary data showing that their hypothesis is plausible.
This requirement is not limited solely to “alternative” autism research; I’ve had to do the same thing (generate preliminary data - not “anecdotes”; not “testimonials”; not “narratives” but real DATA) in order to get funding for some of MY “out of the box” ideas. Why should autism research be treated any differently?
Thanks for your thought-provoking comments.
Prometheus
July 28th, 2008 at 8:45 am
I guess you have the same opinion of the Specific Carbo diet?
While we have seen improvement, all of that aside, my daughter now eats stuff that would make any parent jealous. Snacks on green beans and carrots as snacks! She loves vegetables now and is eating healthier than anyone I know.
Have we imagined improvements? If so, fine with me, I’ll take it however I can get it.
FJH
July 28th, 2008 at 1:44 pm
Mr. Hurst,
There are few published studies on the “specific carbohydrate diet” and all that I can find deal with celiac disease, not autism. For that reason, my opinion of that diet’s effectiveness in autism is “not demonstrated”.
You might want to look at my recent post, “A Layperson’s Guide to the Scientific Literature - Part 3″, to see my thoughts on parental observations. I am glad that you are happy with your daughter’s progress, no matter what caused it.
Prometheus
August 13th, 2008 at 5:19 pm
I put my son on the diet just to see if it helped. I am not sure. He has a genetic disorder which causes his autism Asperger’s and behavior conduct disorder nos. We have been on it a little over a month. The diet is a pain. He is having a lot of diarrhea since starting the diet. His biting is down since starting the diet.
August 18th, 2008 at 3:34 am
Hi…I can see I’m late to the party but I just came across this blog while Googling.
The author states that no parent will come forward to say that the diet *didn’t* work for his or her child. Oh ye of little faith.
I am a former curebee mom (never crossed the line to anything injectible or to chelation, though) who did in fact try the GFCF diet. Our little boy was two years old at the time…going on three. We tried for two weeks. He was a horror. We were told, “Oh, no, you actually need to give it four weeks. Just so his ‘withdrawal’ will finish up.”
After four weeks I returned to the person pushing the diet on–oh, pardon me, continuously suggesting the diet to–me. The only change was for the worse. Our son seemed to actually regress on the diet. Weird. Guess what she told me this time? “For some children, it takes up to six weeks. It’s the casein that takes so long to get out of the system, don’t you know.”
After EIGHT weeks I returned to say we were officially quitting the diet. “Oh, but you actually need to give it twelve…” she tried to insist.
“NO WITHDRAWAL on EARTH lasts twelve weeks,” I interrupted her. “Heroin withdrawal doesn’t last twelve weeks!”
The punchline, if you can call it that: Once we stopped GFCF, our son’s regression overturned and he got back the six words he had lost during GFCF.
The GFCF proponent’s explanation? “Oh, that’s because the diet was finally kicking in. Even though you reintroduced the ‘poisonous’ foods to his ‘leaky gut,’ all the time spent on GFCF had begun to heal his gut enough for him to get some words back.”
Did I say punchline? I’m not actually laughing…My son will never be “cured”. He’ll never be “normal”. THANK GOD. I mean look at the lunacy some of the world’s presumably most “normal” people generate.
Whew. It felt so good to get all that off my chest.
August 18th, 2008 at 12:12 pm
Melanie,
Thanks for sharing your story - not many parents are willing to risk the wrath of the mindless minions of DAN! orthodoxy by saying that the Emperor has no clothes.
Your story parallels those of many parents I have spoken to and corresponded with - the lack of success is “explained” and “rationalized” until the parents finally either convince themselves that they see improvement (”Yes, I finally DO see the Emperor’s new clothes!”) or quietly slip away.
It is also interesting to note that chelation was initially “curing” autistic children in a matter of weeks, then months, then “a couple of years - three at most” and now there are a number of chelation “believers” who have been treating their children for over five years.
Prometheus
August 18th, 2008 at 2:43 pm
This particular Emperor remained quite naked indeed.
But then again, I’m no stranger to seeing naked Emperors as regards autism. Such as the old “Einstein didn’t talk until he was…” gambit. When your child is one and a half, “Einstein didn’t talk until he was two!” When your child turns two and is still nonverbal, it’s “Einstein didn’t talk until he was three!” When your child is three, Albie didn’t talk until he was four…and so on. My husband and I used to ask each other whether, when our son was fifteen, we’d still be being told that Einstein didn’t talk until grad school.
I found my naked Emperor through Einstein family eyewitness accounts and for the record, Einstein spoke at two years, nine months (ruling out, BTW, the whole “Einstein was an Aspie!” idiocy, since AFAIK, the major criterion separating Aspies from “low functioning” (arghhhhh) autism is, well, no speech delay…but then again, that’s a whole ‘nother Emperor).
Anyway, thanks for posting this blog, because even today I still wonder whether we should have stuck out GFCF just one more month, or two, or ten. Or, well…even yesterday I did. Until I saw this data.
Can’t thank you enough, and keep blogging.
August 19th, 2008 at 12:08 am
Yeh, Melanie!!! I also hate the “Einstein did not talk until … whatever”. The family account is him being told he could play with his new baby sister, but he replied “But where are the wheels?”
He is a bit over two years old and nine months older than his sister. This is documented a couple of biographies including “The Private Lives of Albert Einstein” by Roger Highfield and Paul Carter, 1993 and “Albert Einstein” by Albrecht Folsing, 1997, translated from German by Ewald Osers.
When my son was three years old his entire spoken vocabulary was a dozen monosyllabic approximations. It would have been wonderful if he could have asked where the wheels were on his little brother!
August 19th, 2008 at 2:44 pm
I had this paper on my “to-do” list, but you have done such a good job I’ll just refer people over here.
August 21st, 2008 at 2:03 pm
My dd has had GI issues and autism from birth. Around nine months though, both medically and behaviorally she regressed pretty severely over the course of four months, losing all words and most other social and emotional skills (sleeping and eating as well). After she turned two, I read about the GFCF diet and thought it might help with the GI issues (as a side note, my mother has major GI issues and has been eliminating various foods from her diet for years to find what works and what hurts).
In four weeks, my dd began speaking in full sentences, reciting childhood poems and songs I had been saying and singing to her since birth. Then, the “effect” pretty much plateaued and we didn’t notice any other effects, including medically. After almost seven months of concentrated effort, our dd had almost stopped eating completely (who could blame her with all the GFCF foods) and one of the benefits was supposedly that the child with ASD would have an increase in foods eaten because they weren’t in pain anymore or something like that. We did not see this benefit and in fact saw the opposite. We were also finally able to seek out some genuine medical help from specialists after moving to a new city and so we stopped the diet and started looking to medical professionals and occupational therapy.
Our dd eats whatever she wants to now (which is ridiculously little still) and has not been in therapy (ot, speech, etc) for eight months. She has actually never been better (excluding the ongoing medical concerns that are being blamed on the ASD dx of course since the medical community is stumped). TV (preschool shows) has actually taught her a lot about play, emotions, imagination, social skills, self-help skills etc.
Our biggest challenges remain: sleeping, eating, sensory and social skills. Her communication skills have improved drastically completely outside of the GFCF diet and any therapy of any kind.
I don’t think there was any actual harm aside from financially to trying the diet for as long as we did. However, I wish I had known that a possible side effect would have been a considerable limit to the foods my dd would accept and that the diet could actually backfire in that way. I now know after a nutritionist stepped in three separate times (to up her calories and nutrient intake through hidden foods inside favorite foods) in the past few years, that if you mess even slightly with my dd’s food in any way, she will absolutely refuse to eat for weeks. She will not trust the food you give her and would rather not eat.
August 21st, 2008 at 2:23 pm
Ellie,
Thank you for your story.
Although anecdotal evidence - such as your story - isn’t data, it DOES help show that the “narratives” supporting the GFCF diet are balanced by those of parents - like yourself - who have tried the diet and seen it fail.
Prometheus
September 6th, 2008 at 1:56 pm
I have also tried the gfcf diet for my 4 year old son. He started having constipation issues around the time we were trying to potty train him. I thought that the diet might help with his GI issue. We removed casein first and he seemed to settle down a bit. We decided to remove the gluten 6 weeks later. He never went through the so-called withdrawal phase. We never saw any additional improvement. We kept up with the diet for 14 weeks. After consulting with a GI specialist, we put him on a laxative and a high-fiber diet. This ended our gluten-free run. Now, I am happy to say, he is doing really well with the potty training, his bowel movements appear normal (for the first time in months) and he is sleeping through the night. He has had gluten in his diet for 3 weeks now and we are not noticing any regression. Our Dan doctor said that it can take up to 6 weeks to see any regression, so we are going to wait a while before reintroducing the casein. It seems that the only thing the gluten-free diet did for my son was cause him to lose weight (which he didn’t need to lose).
Now, the only question I am left with is what is all of this talk I am hearing about “silent damage” to the gut if we give our autistic kids gluten? I can understand if a child has true allergies or celiac disease, but I don’t see how this applies to every autistic child. I’ve seen parents and doctors on you-tube trying to plead to parents that if your child is autistic then you have to stay on a gfcf diet. Is it just me, or does that seem rather strange. Especially when there is no scientific evidence to back up the gfcf diet as a treatment for autism.
I think most of my worrying comes from all of the gfcf diet websites out there that are filled with stories of how much the diet helped with their child’s autistic behavior and language and there are very few stories from those parents who have tried the diet and it did nothing.
One final thought, now I am reading that you should keep your child on a gfcf diet for 6 months to a year to see improvements. Is it just me, or can a lot of autistic children make great improvements over the course of a year without being on a special diet?
October 26th, 2008 at 9:39 pm
I have two autistic sons and am being pressured to try this diet. I’ve seen the results of studies both for and against the diet and it is all very confusing. The one thing I did notice in parental testimonials is that the majority of them not only immplemented the diet but also put their child on a probiotic to rid them of candida overgrowth. Could that possibly be the reason for the success? What is your stance on that topic? I have been trying to research it but seems all I ever get is a website to order probiotics so the information on these websites is obviously biased. Any information would be greatly appreciated.
October 27th, 2008 at 12:40 pm
Erin,
The diet may or may not “work” for a variety of reasons. Currently, the best data suggests that it “works” by giving the parents something complex and time-consuming to do while their child improves at his or her own pace.
That said, there are certainly autistic children with milk intolerance, milk allergy or celiac disease who will benefit from the GFCF diet. It won’t change their autism, but it will make their bowels feel better - and we all behave and learn better when we’re not hurting.
I’d be much more inclined to attribute benefit to the use of probiotics for “candida overgrowth” if anyone had ever shown candida overgrowth was common in autistic children.
There has been a lot of money spent on “tests” (urine, stool, etc.) for “candida overgrowth”, but nobody has ever shown that these tests actually detect candida or other “yeast”. The best that has been done is that the labs have shown that finding compound X or a certain ratio of compound Z to compound Y might point to a “yeast overgrowth”.
As far as the probiotics, remember that this is a very lucrative business. The companies that make these products (and the doctors and other “healers” who promote them) like to disparage “Big Pharma”, but the fact is that “Little Pharma” and the “Nutraceutical Industry” are just as profit-driven as their big brother.
The only difference is that “Little Pharma” and the “Nutraceutical Industry” have gotten Congress (in the US) to give them a loophole in FDA monitoring. They don’t have to show that their products are effective, or even safe, so long as they label them as a “nutritional supplement”.
They also don’t have to perform any post-marketing surveillance, so they (and, of course, we) have no idea if anyone is being hurt by these products.
I’d love to be able to give you better information, but the bottom line is that there isn’t any good data about probiotics and autism, just a lot of “stories” collected and presented by the people who prescribe and sell these products.
Prometheus
November 12th, 2008 at 3:41 pm
We tried a GFCF diet for my son, at the advice of his doctor, with no effect. The doctor recommended 6 weeks, we tried 10. He was a bit better on some things, a bit worse on one or two — but overall he didn’t improve any more than in other 10-week period.
Coincidence is odd, though. My son had some new GI issues that started a few days before he began the diet and some behavioral issues that started two weeks before he ended the diet. Neither set of issues was related to the diet. The initial GI issues began before we started the diet, and I find it unbelievable that the behavioral issues would be due to a diet we’d started eight weeks before that (or that they were anticipating the end of the diet in two weeks).
But: if we had started and ended the diet two weeks earlier, we would be convinced that starting the diet caused the GI issues, and that ending the diet caused the behavioral issues.
November 16th, 2008 at 7:15 pm
Not so fast…
Resurrecting this post on account of Paul Shattock and the ARU in Sunderland are busily waterboarding the data from a two year study into GFCF and are to publish shortly with positive results…
Please be aware that some serious quack-busting is going to be needed in the next couple of months.
February 4th, 2009 at 10:13 pm
I am glad I found this article/posting. It does not attack as much as some others I have read. It gives a lot of studies and evidence-based information. THis is what I have been looking for.
I have a 4 year old son with autism. We’ve tried the GFCF diet 3 different times (last year for 9 months!) and we don’t think it works. But I have felt so guilty because of all the “recovered” children and this always seems to be a component in the improvement of the child. “We removed dairy, and he started talking in full sentences a week later” - those type of statements.
So, it seems there are lovers of the biomed treatments and there are haters. It’s hard to find anyone neutral. We have spent so much money on various urine and fecal tests and we are no further ahead. I am so confused. I’m not sure what works.
I do think our ABA Verbal Behavior program has helped our son more than anything else we’ve tried, but we were doing lots of floortime therapy at the same time, so it’s hard to give full credit to any one therapy. All in all I find this disease to be SO frustrating, because of the pressure to be a “mother warrior” and so many parents claiming reversal of autism.
Every time I start to feel ok and think we are doing everything we can for our son, I read about another “recovery” and I feel so guilty that I am not doing enough for my son. I haven’t chelated, or tried HBOT, or done enough supplements. I should never give up on the various biomed until I find the right combination that is going to flick on my son’s switch and turn off the autism. Something that’s going to fix his DNA. I find it all overwhelming and so frustrating.
I love my son and I am grateful for who he is, but sometimes I almost wish he had a diagnosis like down’s syndrome, so I could start to accept him the way he is, and not be constantly on a quest to “cure” him. The poor guy probably feels that he’s not accepted for who he is. Ahh! Sorry for the rant!
April 5th, 2009 at 12:57 am
Prometheus, thanks for posting these studies. The GFCF diet was the first thing we tried 6 years ago. It didn’t help. I believe some people that say it helps their kids, but I’ve never believed really in the “leaky gut” or “peptide” theories. The way I looked at it was that the diet provided some type of benefit, just like the vitamin therapies do. Like for instance, giving your child with autism B6 might help their speech, but doesn’t mean that lack of B6 caused their speech deficiencies. I look at the GFCF the same way, that it sometimes it provides some benefit for some reason, but gluten and casein are not the cause of the autism. They treat some symptoms that cause some behavior problems, but are not a cure.
What I am so SICK of is all the people who keep saying that the biomedical therapies cure autism. I believe that they can help in some way, and for children who have mild autism they may help alot, but for a child who was born autistic, like mine, no amount of GFCF is going to bring back those lost years when he was a baby and a toddler and he wasn’t making the neural connections critical to his development. When I hear the advocates, I end up second guessing myself . Did I do the GFCF long enough? Should I try it again? Is there some pill I’m missing that could fix him? And I always feel guilty. I feel like I’m being told I can find the cure, as long as I figure out this puzzle first. I must be too stupid to figure out the puzzle, because my son is still very autistic.
People like Jenny McCarthy can cure their children, why can’t I do that? It’s a truly horrible, heartwrenching feeling. So I appreciate your different perspective and your willingness to say “this is bogus”.
April 13th, 2009 at 2:09 am
My now 5 year old was diagnosed at 3 and wanting to try anything that may help, but still negotiating the maze of early intervention, we decided to give the GFCF diet a go, with the encouragement of some friends who had seen some ‘dramatic’ improvements in their own daughter. We trialled the diet for three months, and saw no improvement in our son whatsoever, and a significant weight loss (in a child already on the 25th percentile for weight).
In the last twelve months, by doing speech therapy, occupational therapy and a special needs pre-school programme, our son is like a different child, often indistinguishable from his neuro-typical peers ( i would not for one minute say he is ‘cured’ but just want to state that it is possible for ASD children to progress this much without all the ‘quack’ interventions, i guess as parents we just quietly rejoice rather than shout from the rooftops about a ‘cure’) My point is that, had we started to see any improvement while trialing the diet, i’m certain we too would have put it down to the diet, and not to the other therapies we embarked upon, as well as natural progression. Thanks for posting the studies, there is no doubt in my mind that when parents see their progression in their children while on this diet, they would have seen them progress without it.
April 16th, 2009 at 7:00 pm
just curious….why are your opinions so strong about this? do you have an autistic child or relative or are you just studying autism in some college class?
April 17th, 2009 at 11:10 am
Ashley, Prom has an autistic child and has a PhD level science background. You might try reading some more of this blog. I’ve followed it for a while,and have learned lots (I have an adult child on the spectrum).
April 17th, 2009 at 7:41 pm
i always try to be open minded and read a little bit of every opinion….its hard to find truth on the internet though..alot of people gripe just to gripe and say things just to get a rise outta ppl. so..you said nobody would say the diet doesnt work… we just took my son off of the gfcf diet..we thought at first we may have noticed a difference (i think most parents hope so much that their vision may be somewhat clouded.) but we couldnt be sure it was the diet and not just coincedence…connor (my son)has been working very hard so i would hate to give the diet credit for all the works hes done. the reason we took him off of it was because he was CONSTANTLY sick. im not a doctor and i dont know if the diet made him sick or what but i knew i wasnt gonna watch my child feel miserable. we had the “it can’t hurt” attitude just like many others. sometimes its very hard being a parent of an autistic child. alot of these doctors just dont know enough about autistic children. i think thats the whole problem. parents arent getting answers or help from many doctors so they seek information and answers through the internet(which can be horribly misinformative) i agree with many opinions on this page and i disagree with several as well but i think the bigger picture is that everyone just wants the best for their children…the decisions they make are decisions that THEY have to live with. my opinion is that autism is grossly underfunded and there isnt enough being done. the numbers keep getting bigger…whens it gonna be enough to DO something about it. (that being said i know there ARE people who dedicate their lives to autism and autism research and to those people i feel forever grateful)
May 5th, 2009 at 9:23 pm
I read “There were no significant differences between the HPLC urinary profiles of the children affected by autism and the typically developing controls”. Translation: There is a differents between the HPLC but not significant. HHHmmm another question. What would this NT consider significant? I read.”In those cases where HPLC showed peaks in the locations at which opioid peptides might be expected to be found”. Translate: Where there was a difference we looked only where we thought we would find opioid peptides and found nothing. So where back to there is a difference in hplc between AS and NT’s like originaly thought. It was a complete waste of money to run a test and not cover every small detail. unless that was the intention. Sorry i didnt spend more time trying to find out what molecules where used on this specific test like, 2,5-dihydroxy benzoic acid, 3,5-dimethoxy-4-hydroxycinnamic acid, ext ext ext, im sure that would have made a difference that would not have been so easily manipulated to such a bios result. Excuse my adderall that i have to take increase my attention span is loosing it’s effect. Since i dont have the attention span to get a higher education or social skill to get higher in my job. I have to use the next dose for so i wont get fired for spending company time in my mind.. Imagine what i could do if was able to use my IQ 24/7. what was i saying. WEll hope it made sence….. taa taa
May 5th, 2009 at 9:36 pm
Hey doctor lady is do you know if there is any studies on gluten and it’s effects on the production on acetylcholine. I think that would be a good one. OH look at the sun, its time to go..
May 7th, 2009 at 11:35 am
“Logic Mind”,
The statement “there were no significant differences” means - as you surmised - that there were differences but they were not large enough to reach statistical significance. Biology is a “messy” science - there are always differences from one organism to another. What this study found was that the differences within each group (autistic; not autistic) were large enough that the differences between the groups can be explained by random chance.
Molecules run out on a chromatograph - like HPLC - show up at predictictable times/places. That’s what makes chromatography a useful analytical technique. If nothing showed up at the time/place where opioid peptides should be, then there were no opioid peptides. There is very little point in looking for opioid peptides in places where they won’t be, much as there is little point in looking for tigers in the Antarctic.
As for the effect of gluten on acetylcholine production, I cannot find any studies. There has been at least one looking at acetylcholine release from the intestines in response to gluten (http://ajpgi.physiology.org/cgi/content/full/294/1/G217), but I can find none that looked at production.
Prometheus
May 15th, 2009 at 1:50 pm
I have tried the GFCF diet for my autistic child. I tell you what at first she did incredible! The same week we tried it she started saying words, and understanding things, etc. … Well then I heard that this was all just bolognie so I thought, okay was it really the diet or was it just the fact that I prayed to God every night that it would work. To this day I don’t know, but I one day just said whatever I am going to give her regular milk, then I gave her a cookie , then I let her have mac & cheese etc…. all on the same day! Well my DAN! DR. had told me to never let her have one single try of these things or else she would lose everything she has learned up to now. She also told me I would pay for it if I do because that they need these children to prove all these clams. Well guess what? I have still been giving her regular food for 2 weeks and she is still doing good! Nothing happened to her digestive system, her tummy is fine and she has continued to make big progress! So for anyone thinking of trying the diet I say it is only your faith and commitment to your child that will help them!
July 20th, 2009 at 5:49 am
Hi,
I just I thought share our personal experience with our son who has PDD-NOS. Like many, we thought that we would try the GFCF diet as we thought it couldn’t hurt. Unfortunately, that was not the case for him. As soon as he started the diet and for the 10 days that he was on it he developed chronic constipation. He had no bowel movement for 10 days while he was on it. We tried everything including enemas but nothing helped. His intestines had become so distended and he had a fecal impaction. They had to put him under general anaethesia so that they could remove it. After that our son had to be on medication for 1 1/2 years before he would have a regular bowel movement. Now, he is finally off the medication and has a regular bowel movement every day. I can’t speak for the families who have seen the improvement in their children and I am glad for them, but I can speak of our own experience. So, when someone says it cannot hurt - well in our situation it did.
July 20th, 2009 at 10:18 pm
As a mother with a child diagnosed as PDD-NOS I want to do what is right for my son without causing harm. As a medical professional (pharmacist) I feel the need to do as much research as I am able on whatever the “next step” might be. My husband and I have been considering doing the urine peptide test on our 5 year old son to see if GFCF might help him, and have even gone so far as to order it. His behavior has deteriorated significantly in recent weeks and we can’t figure it out. Is he mimicking, Stimming, frustrated? He’s become very angry, volatile, and is using phrases such as “I hate…” and told his father he wants to “cut you into pieces”. He stims by repeating and reinacting, mimicking. His TSS & BSS are concerned it is the combination of an inexperienced teacher at the daycare he attends two days/week and a very aggressive bullying new child at said daycare. We struggle with chronic & sometimes severe constipation. His diet is limited as is between sensory issues and his refusal to try ANYTHING new. This is really the first site I have found that has spoken openly and critically and not sung the GFCF praise, and while I am grateful, I am more confused than ever. I have been praying to find the answers I seek and i don’t know if the previous post about constipation was it. All I do know is that I don’t necessarily seek to “cure” my son, some of the idoiosyncricies (sp?) of his disorder are what makes him so special and unique and wonderful and I wouldn’t trade that for ANYTHING, normal or not normal. Right now I just want to find what is making him so NOT HIM. If it is pulling him out of the Daycare program we love, then so be it, we just want to do what is RIGHT. And we are so scared we are going to do WRONG. Thank you for giving me another view to consider. And thank you for listening.
July 21st, 2009 at 12:59 am
Shelle,
The reality is that the GFCF diet appears to be a placebo in most cases.
There are probably a few kids with actual gluten sensitivity (e.g. celiac sprue) and probably a lot more who are “allergic” to milk (I include those with early-onset lactase deficiency in that group). Those kids may account for some of the dramatic “success stories” you sometimes hear about with the GFCF diet, but they are most certainly the minority.
In most cases, the GFCF “responders” are kids who had a spontaneous improvement that coincided (roughly) with the start of the GFCF diet. Since many of the “alternative” autism practitioners (and the “lay” promoters of the GFCF diet) have broadened the window of “success” to include any improvement in behavior, attention, language, bowel habits, etc. that occurs after starting the GFCF diet (sometimes claiming that improvement seen years after starting the GFCF diet is a GFCF “success”), it is hard to know what to make of the claimed GFCF “successes”.
Strangely enough, the GFCF promoters don’t seem to think that any deterioration in behavior, attention, …. seen after starting the GFCF diet can be attributable to the diet. Or, if they do, they try to explain it away as “withdrawal” (yes, I’ve heard that one a lot) or “the toxins coming out” or other such rot. Apparently, the GFCF diet can only do “good”, not “evil” - a feature it has in common with most fantasy-based medical therapies.
For a lighter look at the GFCF diet, try this:
http://www.youtube.com/watch?v=SavsJYXWgm8
I don’t claim to have any insight into what might have made your son worse or what might make him “better”. Unfortunately, as you may have already discovered, there are lots of people (practitioners and parents) out there who are just as clueless but not nearly as honest about it. Beware people - doctors included - who claim to know exactly what the problem is and what to do about it.
With a history of severe constipation, my “gut feeling” (pun most definitely intended) would be to have him see a legitimate pediatric gastroenterologist. People with autism are no less bothered by problems with their tripes than their neurotypical peers. I know that a stomach ache makes me “regress” dramatically - I can only assume that it would have the same effect on someone who is autistic.
While I am not one of the people who thinks that autism is a “brain-gut” issue, I do think that it is important to treat any co-existing medical condition. I have seen my own child’s behavior improve markedly when a medical condition - that he could not effectively communicate to us - was discovered and treated. Perhaps the same is true with your son.
Best of luck.
Prometheus
July 22nd, 2009 at 11:36 pm
I have 3 children.My older 2 have been diagnosed with Asperger’s and my youngest has been diagnosed with ASD.My oldest is the mildest, my youngest the most severe.I tried the GFCF diet with my oldest for approx 3 months and stopped because there was absolutely no change in his behaviour or symptoms.I did alot more research, and found that the diet,on such a picky eater, would do far more harm to him than good.This was about 2 yrs ago.
My ex-husband’s new wife has recently found this brilliant cure for my youngest son (as her and my ex are in denial about the other 2 being on the spectrum) and put my son on this diet without my consent or knowledge.I agree that my youngest does display gastrointestinal difficulties, and these do seem to be aggrivated by dairy,not necessarily casein.I refuse to follow this diet as a means to cure his autism.I have insisted on testing for allergies and have firmly stated I will not put him on this diet unless he has a proven allergy or sensitivity.
My ex and his wife have accused me of being a bad mother and actually wanting to have an autistic child when I could help “fix” him.I am still waiting for my youngest to see a pediatrician to have the allergy testing done.Our allergist feels my son is too young for his tests.My ex and his wife have taken my son to a well respected developmental pediatrician who specializes in autism and teaches at a well respected university.This doctor recommended the gfcf diet and is currently testing my son for leaky gut syndrome.This mystifies me completely!He has made no hint at testing him for any actual allergies.
Given recent research, I can’t beleive such a qualified and respected doctor would take such approach.I was able to get my older two children tested and very interesting to note, my oldest displayed only minor seasonal allergies, while my middle child diplayed a moderate allergy to wheat and milk.These are true allergies, not intolerances.Other interesting note is that she displays or is unable to recognize any typical symptoms associated with these allergies.Her symptoms present as behavioural.She becomes hyperactive,irritable, and has mood swings.The allergist suggests that this is due to the fact that she is probably experiencing some degree of physical symptoms but is unable to recognize or identify them.Also interesting is that she is moderately anemic and has had to be on supplements since she was about 3yrs old.Anemia also manifests itself behaviourally in children (irritable,difficulty focusing etc).
My youngest was also diagnosed as severely anemic about 2 months ago.Since he has been on supplements and been on ABA for 2hrs per week we have seen significant improvement in my son’s behaviour and communication.My ex and his wife are attributing these changes to his diet(he has been on it for 1 month now) and use this to furthur their case that I am a bad mother.I believe it is possible that my son does have an allergy to wheat and dairy, like his sister,but that has absolutely no bearing on his autism.
I think that parents are just very confused or misinformed about what exactly true autism is and how different disorders mimic symptoms that are currently attributed to autism.I’m a firm believer that if changing my child’s diet to gfcf cures his autism, then he was never autistic in the first place, he was misdiagnosed.
July 23rd, 2009 at 12:09 am
I always make a point of telling people that my son ( who is autistic and has celiac and a milk allergy) is allergic to those two things. I never refer to it as a GFCF diet because then all the crazy biomed moms think I am one of them.
I will say that he is much mellower now that he is not uncomfortable all of time. But… I think we will be waiting a long time if we relied on removing those foods to “cure” him.
Very rarely do parents of NT children begin to create medical treatments for disorders they do not know their child has. Why do parents of children with autism think that they should.
There are REAL tests to determine a gluten or milk allergy. If the test shows up they are allergic, treat them… if not leave them be.
July 24th, 2009 at 4:14 am
I would go with the IgA stool tests before going to all the trouble of the diet as they are much more sensitive than the blood tests for antibodies (the board certified, well published GI who has developed these is having a heck of a time getting his study on these published, but that’s another issue). I believe his stool tests are also popular with parents with autistic children, and they surely are with parents of celiac kids for follow-up testing once diagnosed — they hate needles. Maybe I read that at the old BrainTalk Neuro board a while back — can’t remember.
Yes, I know from my own disease (microscopic colitis)that we often use the term “allergy” when we really mean “sensitivity” to avoid confusing people — especially wait staff. Ha!
I don’t consider “intolerance” to be an accurate description as these reactions are different that the more immediate reaction of a true allergy or a true sensitivity (still an immune reaction, however).
The reaction times are different for everyone with these “delayed” food reactions — for me, it’s almost exactly 24 hours after I ingest something I’m sensitive to, that I have a reaction.
The lactose intolerance (just because the areas in my gut are damaged from eating gluten all these years)is pretty much a moot point for me at this time (it would come within a couple of hours after an ingestion of dairy, so stopped when I stopped all casein sources, obviously.)
I don’t think allergists even do IgA testing,and if they do, they do it on blood which will rarely show anything in most people with M.C., and probably a lot with less than gold standard flat villi in the small bowel used to diagnose classic celiac disease.
You can forget GI’s (even the good ones who do the biopsies and give you the correct diagnosis) for treating M.C. with an elimination diet.
Most of my support group members have had to find this out for themselves — among the hundreds of people with M.C that I know, very few of them do not respond to a diet free of several common allergens, usually gluten being the most aggregious of them all. I cannot eat gluten, dairy casein, eggs, soy, or baker’s yeast which is the same yeast as brewer’s yeast. A smaller percentage of our group cannot have a few other foods. Yet, many of us eat healthier than we ever did before. Trick is to avoid all the gf junk foods advertised ($$$), and just eat quality vegetables, meats, fowl, red salmon (canned is fine if no additives), and pork if you eat pork normally. (I get migraines from the usual additives/preservatives) in meats or from MSG.
I just have rice and I’m lucky in that I can have gf corn tortillas or other corn products in place of bread. I wouldn’t touch a yeast free allergen-free bread! Yuck! Trick is to make everything taste good in the first place. My brother in law eats the same stuff my sister and I do with no complaints.
But hey, if you don’t test positive on the stool tests, I would just let the children enjoy wholesome foods like we all SHOULD be eating in the first place. I hear the corn test is finally going to be available soon.
There was a study done in Europe that used the same technique as the doctor in Dallas uses and had similar results which are published. The German study used the same method as the blood tests, but in Dallas, they changed a couple of things, like the dilutions of that test with obviously good results.
I’m fortunate in that I got a quick, obvious response by each elimination of a food — some take longer, but most of us can tell in maybe three days as the lining of our guts heal. If one is a “silent celiac” that makes it much more difficult to convince someone that their gut is healing, but these are well established and biopsy proven. Unfortunately, some small bowel damage only shows up in electron microscopy, and these are the ones being missed, so we’re back to trial and error.
Just thought you might want to hear from someone with a problem that responds to diet without research being published, or well accepted among the medical community, although that is rapidly changing here.
Good luck to the subset of you that turn out to have food sensitive children with autistic symptoms, and don’t be discouraged if you don’t have a child that’s that doesn’t produce the typical IgA antibodies to foods in the stool tests. There are other ways to make things better. No one should feel guilty if doing their best.
Luce
August 6th, 2009 at 11:16 pm
Wow! First off, I would like to say that I have learned a lot from, not only from the orginal blog, but also from everyone’s response.
Great stuff!
Originally I was going to write a cause and effect essay titled ‘Benefits of a Gluten/Casein-Free Diet’, and came across this website during my research. My beliefs on how effective this diet actually is are now in question. I keep my son on a gfcf diet at home, but his daycare does not impliment it as they recieve their meals from a catering company. Aswell, I am unable to afford to pack all of his meals gfcf for daycare everyday since I am a single mother and currently a college student. Money is sparce.
Now I am going to have to find a diffent topic to write about, and my carrer objectives are also eing re-thought(was considering R.N.DAN, specialized dietician, if there even is such a thing).
I am still learning what possibilities of career outlooks there are revolved around working with children whom have autism. I must say that I would ‘think’ that I was seeing improvements in his behaviour, but it could be numerous possibilities contributing to this. He started speech therapy last fall, sugar intake was reduced, he began daycare again, he has been taking fish oil, and a mineral oil to help him with his bowel movements. He is not fully on the gfcf diet, so it is not at all conclusive in our case if it works or not. Obviously.
However, I believe that where I have seen improvements in speech, communcation, initiation, eye-contact, less tantrums, may have improved simply because I have become more involved with my son in everything. Taking to him more, respecting more, looking at him as a equal person with needs, that needs to be loved unconditionally. Just all around more involved in every aspect. I have heard some good things involving creative therapy. Do you happen to know any information with that?
BTW, I give you koodo’s for putting up with some really rude responses, they clearly do not have an open mind.
Cioa, thanks
-confused Mommy
August 6th, 2009 at 11:22 pm
Im just going to love my son and stop stressing if ‘I’m doing it right’, because heavens knows there are so many theoriesas to what works, what doesn’t or what in inconclusive. It’s very tiring. I am just going to rela, and do the best I can. HAPPY MOMMY, HAPPY CHILDREN!!! am i right or am i right?…
btw. thanks
August 9th, 2009 at 10:40 pm
What good are you trying to do? Any? There have been supporting studies done, if you look for them. If this could help, why wouldn’t you at least want to try?
The diet worked for ME
I do not fit the diagnostic criteria any more because of it. Please don’t discourage people from potentially getting better, from progressing throughout life. Its the worst thing you could do as a person.
August 10th, 2009 at 2:34 pm
Lindsey,
I will address the “supporting studies” in a future article, if there is sufficient interest. Until then, allow me to summarize.
A small group of authors have claimed to find “opioid peptides” in the urine of autistic children. They have hypothesised that the presence of these “opioid peptides” in the urine is the result of abnormal metabolism or abnormal gut permeability and that these “opioid peptides” are derived from gluten and/or casein.
They further hypothesise that these “opioid peptides” are a/the cause of autism and that eliminating gluten and casein from the diet will “cure” or “recover” autistic children.
Does this sound familiar?
In support of these hypotheses, the authors present analyses of urine from autistic and non-autistic children showing the presence of the “opioid peptides” in the former and absence in the latter.
If you read my post, you will have seen that Cass et al (2008) - using state-of-the-art equipment failed to find these “opioid peptides” and showed that the HPLC peak where Reichelt and others claimed the “opioid peptides” resided was - in fact - not a peptide. That this confirms an earlier study (Hunter et al, 2003) further discredits the “opioid peptide hypothesis” of autism.
In fact, Lindsey, I am trying to help. I
m helping by pointing out that one of the key claims supporting the use of a GFCF diet in autism has been shown to be false. Don’t you think that telling people the truth is a form of helping?
You are absolutely right when you say “If this could help, why wouldn’t you at least want to try?”. Well, it looks like it doesn’t work, so why shouldn’t I tell people to save their time and effort?
I would never discourage people from “potentially getting better” - as you put it - but I do inform people of the relevant scientific data that may affect their choices. If they choose to ignore it, they are at least making an informed choice. If, as you seem to suggest, the information is kept from them, how is that an informed choice?
Prometheus
August 12th, 2009 at 11:58 am
This was a very interesting thread to read “backwards” in time, since I hadn’t been interested in autism (and as such aware of the blog) when it started. I got lucky, as the dreaded “developmental delay” diagnosis of my one year old had disappeared by the time she finally got a specialist appointment a couple of months later (helped by frantic parents working daily on the “diagnostic” deficits she was exhibiting). It turns out that she’s just having a more pronounced plateau-spurt development than most kids, going from three-months of no progress to fully caught up a month later.
What surprised me most in the autism-cure debate is that, while everybody has their own cure (and often a related theory to cause) they all insist that only the one cure and the one cause exist for autism - even if they are mutually exclusive. And that parents are willing to overlook glaring discrepancies in their own statements to justify a shotgun approach to “cure”, as in “the mercury in the vaccine caused the measles infection which lead to a leaky gut that leads to opiod release that I treat with GFCF”. Actually, I’m surprised no one is putting their kids on naltrexone yet.
August 12th, 2009 at 10:13 pm
Mu,
You’re a bit late - people have been giving naltrexone to autistic children for over 20 years. The results have been…..mixed.
(for a good review, see: http://www.theannals.com/cgi/content/abstract/40/6/1086)
About the only good thing that can be said about naltrexone therapy is that it is relatively safe. It does not appear to be repeatably effective. One of my favorite statements on naltrexone is from one of the few double-blind, placebo-controlled studies - Kolmen et al (1997):
Prometheus
August 13th, 2009 at 11:10 am
Damn, and I was only taking a shot in the dark because I played around with opioid peptides as a post-doc, and naltrexone was the no-effect control in the model.
August 29th, 2009 at 8:23 pm
My son did improve dramatically on the diet and had a diagnosis of PDD - NOS; However, I want to state I don’t believe he ever had PDD. He was actually diagnosed (sadly not until age 9) with gluten sensitivity. We also recently learned that members of my family have Celiac’s Disease. So, given that the studies do not seem to document a true gluten-sensitivity - maybe that is why it did not help the children with Autism in the study. A more accurate study should be done to include children with a proven diagnosis of gluten sensitivity who are also diagnosed with ASD. I am more prone to believe that gluten-sensitivity may mimic symptoms of Autism. Perhaps this is why the diet helps some diagnosed with Autism and not others.
We had our son tested through DNA testing (yes it is available and - no DAN! doctors do not do these tests - which I believe they should). I feel that any parent considering this diet should have their child tested for true gluten sensitivity before attempting the diet. My prayers go out to all the parents out there who are struggling to find answers. It is easy to get our hopes up - we all want to help our children. I can only pray they find the answers.
As for me - I do not discourage the GFCF diet - BUT - I do believe a gluten-sensitivity should be clearly diagnosed before undergoing such dietary changes.
August 29th, 2009 at 9:08 pm
Sorry, I only wanted to add the following research and resulting hypothesis that I found. It only further emphasizes why this diet may work for some and not others - gluten sensitivity must actually be a problem and diagnosed. I do not believe that the GFCF diet cures Autism. I do believe that it will address neurological side affects that are directly related to a true gluten sensitivity. I hope this is helpful to someone out there. For more info visit Enterolab’s website regarding tests (iGA stool and DNA tests). The following is from a Celiac.com.
Celiac.com 08/13/2009 - In the latest issue of the journal Medical Hypotheses, Dr. Rodney Philip Kinvig Ford of the Children’s Gastroenterology and Allergy Clinic in Christchurch, New Zealand, offers up a compelling hypothesis regarding celiac disease and gluten sensitivity, which asserts that the broad array of associated symptoms are more fully explained using a neurological perspective, than using a digestive/nutritional perspective.
For Dr. Ford, the idea that celiac disease is exclusively an auto-immune condition, and that nutritional mal-absorption is the main cause of related problems, is simply not borne out by the body of clinical data.
Dr. Ford accepts that celiac disease may itself be largely an auto-immune disorder. However, he believes that the broad array of problems associated with gluten intolerance are best explained by looking at the neurological aspects of intolerance to gluten, indeed, treating it as a neurological condition.
That’s because gluten intolerance can affect up to up to 10% of the population, and that intolerance to gluten has largely neurological manifestations. That is, up to 10% of the population tests positive for elevated antibodies for gluten, even with no bowel damage.
Under Dr. Ford’s hypothesis, neurological causes, rather than gut damage and nutritional deficiency, best explain
the myriad symptoms experienced by sufferers of celiac disease and gluten-sensitivity.
Under Dr. Ford hypothesis, if gluten is the assumed cause of harm, then exposure to gluten in sensitive individuals may cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity.
It’s certainly true that a number of celiac patients experience neurological symptoms, often associated with autonomic nervous system malfunction.
Such neurological symptoms can even show up in celiac patients who are otherwise well nourished. Moreover, gluten-sensitivity can be associated with neurological symptoms in patients who have no mucosal gut damage–that is, patients who are clinically free of celiac disease.
Dr. Ford argues that gluten exposure can cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dis-regulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache. He calls such neurologically-driven sensitivity to gluten ‘‘The Gluten Syndrome.”
Hypothesis: Gluten causes symptoms, in both celiac disease and non-celiac gluten-sensitivity, by its adverse actions on the nervous system.
Many celiac patients experience neurological symptoms, frequently associated with malfunction of the autonomic nervous system. These neurological symptoms can present in celiac patients who are well nourished. The crucial point, however, is that gluten-sensitivity can also be associated with neurological symptoms in patients who do not have any mucosal gut damage (that is, without celiac disease).
Gluten can cause neurological harm through a combination of cross-reacting antibodies, immune complex disease and direct toxicity. These nervous system affects include: dis-regulation of the autonomic nervous system, cerebella ataxia, hypotonia, developmental delay, learning disorders, depression, migraine, and headache.
If gluten is the putative harmful agent, then there is no requirement to invoke gut damage and nutritional deficiency to explain the myriad symptoms experienced by sufferers of celiac disease and
gluten-sensitivity. This he calls: ‘‘The Gluten Syndrome.”
To support his hypothesis, Dr. Ford cites a study of 921 children carried out at his gastroenterology and allergy clinic. All children were screened for celiac disease via IgG-gliadinantibody (InovaDiagnostics) and tissue trans-glutaminase (tTG); and 190 had a small bowel biopsy. Results showed 724 with high IgG-gliadin levels (>14 units): mean age 5.3 years, s.d. 3.8.
In a key part of the, all children, whatever the biopsy results, were offered a gluten-free diet.
Results fell into three distinct categories:
(a) Definite celiac disease was revealed in 31 patients (4.3%), via histologic diagnosis. 94% of these patients reported improvement on a gluten-free diet.
(b) Possible celiac was revealed in 48 patients (6.6%), who had elevated tTG antibodies, but normal gut histology: 75% of these patients reported improvement on a gluten-free diet.
(c) Not-celiacs, n=644 (89.1%), with normal tTG antibodies and no evidence of gut damage: 53% reported improvement gluten-free.
Note that last category: More than half of people without celiac disease reported improvement on a gluten-free diet. What’s up with that? Well, those are the people Dr. Ford suspects suffer from “gluten syndrome.”
The parents of apparently ‘‘asymptomatic” children were interviewed as part of a population study to identify those with celiac disease. They found many children who had positive tests for gliadin antibodies also had irritability, lethargy, abdominal distension, gas, and poor weight gains. A high proportion of children with gastro-intestinal, allergy, and neurological conditions have elevated IgG-gliadin antibodies.
The three groups all shared similar clinical features. In the respective groups, 71%, 65%, and 51% of patients reported behavior issues, such as tiredness, lethargy, irritability, sleep disturbance, while 16%, 15%, and 24% reported gastric reflux. Dr. Ford believes these symptoms are likely to be neurologically driven by gluten-sensitivity.
Celiac patients completed a questionnaire regarding the presence of neurological symptoms. Those reporting any neurological manifestations were compared with a control group: celiac patients had more neurological disorders (51.4%) in comparison with controls (19.9%). These conditions included: hypotonia, developmental delay, learning disorders, attention deficit hyperactivity disorder, migraine, headache, and cerebella ataxia.
For Dr. Ford, not only is it significant that such high numbers of people with celiac disease report neurological issues, but it is also significant that the majority of ‘non-celiac’ patients report improvement on a gluten-free diet.
These patients are likely candidates for what he calls ‘gluten syndrome.’ These children can likely be spotted via screening for high IgG-gliadin levels.
Dr. Ford believes the next step is to test this hypothesis in a double-blind study.
Certainly, the idea that a whole category of non-celiac gluten-sensitivity exists is intriguing, as is the idea that a neurological take on celiac-disease and gluten-sensitivty might might provide a better or improved understanding of those who suffer from these conditions.
Medical Hypotheses 73 (2009) 438–440
September 1st, 2009 at 4:44 pm
Alicia,
The “gluten-free” part of the GFCF diet has been used as the cornerstone of treating celiac sprue for decades. As for Dr. Ford’s hypothesis about a more widespread “gluten syndrome” … well, I wouldn’t put much weight on anything printed in Medical Hypostheses.
Still, I am convinced that there are autistic people (and non-autistic people) who experience improvement in their behavior on a gluten-free diet because they have celiac sprue. Being autistic does not protect you from having celiac sprue. Studies suggest that up to 1% of people may have some degree of celiac sprue.
There are also studies showing that some people with celiac sprue may manifest primarily with neurological symptoms and so might not be as readily diagnosed.
None of this, however, shows any direct connection between autism and gluten (or casein), as suggested by the GFCF diet supporters. Given the known prevalences of both autism and celiac sprue, it should be relatively common to find the two together. And, given the vague and protean criteria used by various practitioners to dignose autism, it would also not be surprising to find some children (or even adults) diagnosed with autism who actually have a variety of celiac sprue.
Prometheus
October 29th, 2009 at 11:07 am
I’m a recent new comer to the autism community as I’ve recently accepted that my daughter of 3 displays strong autistic symptoms. The amount of information is overwhelming and I must say I’m a bit baffled by some of the responses on this blog. I am in the biotechnology field and see the advancement that the pharmaceutical industry is making by recognizing the need for personalized therapies. Take cancer as an example, the causes of breast cancer are varied and therefore therapies are varied. So taking a population of people with breast cancer and saying that a therapy doesn’t work because it doesn’t work in >30% of the population is misleading and results in erroneous conclusions if we don’t dive more into understanding the population that does benefit from the drug. We now know that there are niches in the population that respond to certain types of therapies and those same therapies are completely ineffective in another type of population - all on a poulation with very similar symptoms.
The same appears true of the autism spectrum - the spectrum is large, therfore the causes are likely large and the therapies that work will be large and based on population niches of autism. Food allergies and toxin sensitivies can cause all sorts of different symptoms so I’m shocked that there would be any discounting of a parents tetimonial that they feel they observed improvements when trying certain therapies. The scientific studies are obviously so far behind in understanding the basic biology that well controlled studies can not possibly be conducted. Measuring peptide levels in urine in “autistic group” versus control group showing no difference means nothing if a small population of autistic disorders are sensitive to these normal peptides levels. I think the science demonstrating that there may be a link based on the peptide theory to GFCF diet is equally as flawed. Since much of the science will continue to lag as we better understand this disorder it is imperative that we keep the dialogue open with people who have experiences with what worked and what didn’t work for themselves or their autistic children.
I will try the GFCF diet for my daughter and the whole family because I know there is no harm in trying. Also, food and toxin allergies are very prevalent in our family history. I look forward to reporting back my objective observations and hope for an open and non judgemental reception.
Warm regards,
Katie
October 29th, 2009 at 6:14 pm
Katie,
You are absolutely correct about autism being too broad a diagnosis to allow treatments to be effectively evaluated. This is one of the biggest problems in autism research and the one that makes most “successful” treatments seem so suspect.
Here’s the problem as it relates to the GFCF diet:
Early reports - based on parental “narratives” - suggested that the GFCF diet would be helpful for a large percentage of autistic children. There was a lot of early hypothesizing about how the diet might help (opioid peptides, etc.), but few studies showing if it worked (cited above).
Later on, the reports from parents about the GFCF diet became more “mixed” - we hear a lot about the “successes”, but the failures are a lot more prevalent. Unfortunately, success get more press than failure, so the perception is that the diet “works” when, in fact, there is no data showing that it is any better than placebo, when studied properly.
That said, there is still a chance that it “works” on a small subset of autistic children. There is even a better chance that it “works” on children with milk allergies and celiac disease, reducing their intestinal discomfort and thus improving their behavior.
The problem with a “dialogue” with “people who have experiences with what worked and what didn’t work” is that we can’t distinguish “placebo effect” from real effect that way. Don’t forget - for hundreds of years, people thought that bleeding was an effective treatment for fever. This, too, was based on the experience of people who “knew that worked and what didn’t work”.
As for the “there is no harm in trying” aspect - I suggest you look at the findings of Hediger et al “Reduced bone cortical thickness in boys with autism or autism spectrum disorder.” (J Autism Dev Disord. 2008 May;38(5):848-56.)
Prometheus
November 20th, 2009 at 11:50 pm
Dear Prometheus,
Thanks a lot for the relief and peace you brought to my mind. My son was diagnosed with autism when he was 2 year-old. He is 6 now. He has been on the very strict GFCF diet for 2 years and half. At some point, we thought it worked but NOW we believe this diet does more harm than good. My son has a calcium deficiency now. With all my respect to the parents who believe in this diet, I am going to stop it because it is just a crap!!!
Regards,
Nicole
February 4th, 2010 at 10:26 pm
Prometheus,
I have had my son on the diet for over a year. I went through every detail. Even used separate dishes, sponges, etc. Made sure no gluten or casein could contaminate his food. Bought his foods from health food stores which ensured us they were not cross contaminated during manufacturing. Put him on all the expensive supplements. We have seen no real noticeable results. So far all we have seen is our son lose weight and throw tantrums. I suppose all children are different, but there is definitely placebo going on in some of these stories. I do believe that vaccines and toxic overload lead to his Autism though, but do not at the moment have time to type the very long story here. Anyone interested in the details can E-mail me at Tmccormick216@aol.com
March 11th, 2010 at 10:41 am
I love the idea of scientific evidence but some of us can’t afford testing costs. We did try the diet on our son. He started at 2 yrs old and already seriously limited in foods he would accept. We didn’t notice any difference until he had an infraction. He skimmed his forehead along he floor laughing hysterically. It was enough for us to continue.
I don’t think his improvements were due to his diet. I do think we worked our butts off to understand how to reach and teach him. I do think being on the diet increased our awareness of what he was eating and prompted us to improve his diet as much as possible. It was hard work. I do encourage others to look at diet for the kids but not GFCF. I encourage them to look at what is your kid eating and find a way to make it a more natural nutritious diet. I’m not a zealot over it but do shake my head over friends who’s kids walk around with a bag of chips and refuse decent nutritious foods.
Lately I have had some of my children tested for sensitivity to food and have 2 that showed up needing a GFCF diet. Neither is autistic. I’m not actually sure a test for sensitivity is accurate but one child does a throat clearly hack type cough when he eats something not on his diet. I am going to have my autistic son tested soon.
So, I do the diet with him but do not attribute his progress, which is amazing to all, to being on the diet but rather to my awareness of a need to enlarge his food choices to more nutrient dense foods. I’d prefer to be off the diet for all my family. It is a huge pain and I find most who go on the diet fill their kids with GFCF junk food. How can that help?
March 12th, 2010 at 11:28 am
Prometheus,
Our son has been on the diet for almost 2 months and we have seen changes in him since we started the diet. While my husband was ready to start the diet much earlier, I was very skeptical. I didn’t want to do it because I knew what it would mean for our son. I didn’t want him to not be able to eat what he wanted. He would have to give up so many of his favorite foods: cheese, pizza, icecream, etc. I knew it would be difficult to maintain the diet and very expensive. I also had concerns that he would loose weight and end up with calcium deficiency. I have to say that I have seen a change in my son since the diet. My son suffered from constipation and averaged every 3/5 days. We tried everything to get him regular - more fiber, children’s benefiber, miralax, flax, etc. Nothing seemed to work. Since this diet, our son goes EVERY DAY! He also has less/no tantrums. This is a child who would have at least 4/5 big tantrums a day that lasted up to 20 minutes each. His ABA therapist at school also noted the change she saw in our son and asked what changes we made. She is a good judge because she is with him 40 hours/week. This may not seem like a huge deal to some but the time spent on having the tantrums and getting through them are now spent on more positive activities like playing with other children, spending time with his sister and learning. We are not stressed about going to public places or family functions anymore. My son was not a huge fan of milk either but now he drinks it all the time. We discovered the wonderful world of Almond milk and he loves it. I compared the calcium and vitamin D to 2% milk and it’s the same. Almond milk also has a lot of other vitamins that regular milk does not have. I recently learned that some of the expenses for the GFCF foods fall under Medical Expense Deductions- so hold on to those grocery receipts!
I also made sure not to make any other changes along with the diet. I was all prepared to quickly take my son off the diet once it was proved that it didn’t work but I was wrong. I’m not saying that it would work for everyone but I have seen these changes in my son. I also can’t say if these changes are long term but for now I’m sticking with the diet.
March 12th, 2010 at 2:54 pm
To Kathy and L. Rivera:
To begin with, the “testing” for gluten and casein “sensitivity” done by most “DAN!” or “biomedical” practitioners is - to put it bluntly - bogus. Real testing for celiac disease or milk sensitivity (lactose intolerance or casein allergy) is much more straightforward and usually much cheaper. I find it curious that people complain about the cost of legitimate testing when it is far less than the cost of the “panels” of tests ordered by most of the “alternative” practitioners (and it is probably covered by your health insurance).
Autistic children can also have celiac disease, the symptoms of which can be varied and seemingly unrelated to the gut. Below is a partial list of possible symptoms, provided by the Celiac Disease Foundation:
Since there are other medical problems associated with celiac disease, it makes sense - is, in fact, imperative - that a good diagnosis be made. It isn’t a good idea to just start a gluten-free diet, since the diagnostic testing is often negative if it is done after starting a gluten-free diet.
Milk intolerance is also seen in autistic children, as it is in non-autistic children. Either a milk allergy or lactose intolerance (lactase deficiency) can be the root cause. There are simple, well-validated (and reasonably-priced) tests for both conditions.
Interestingly, untreated celiac disease can cause lactose intolerance (temporary or permanent), which may explain those cases where maximal improvement wasn’t seen until both gluten and milk were removed from the diet.
If “sticking with the diet” makes you feel less anxious or more in control of the situation, I certainly wouldn’t want to interfere (not that I could, even if I wanted to). It is no worse than a ball-player’s “lucky socks” or a gambler’s rabbit foot. However, if you really want to know if your children have a problem with gluten and/or milk, there are simple tests you can have done that will end the guessing.
There are definitely some autistic children whose behavior has improved (and whose gut issues have improved) on the GFCF diet. I (and a number of pediatric gastroenterologists) suspect that they have either celiac disease or milk intolerance (or both) and - like most people, autistic or no - their behaviors improved because their bellies stopped hurting, not because the GFCF diet had any impact on their underlying autism.
If an autistic child had a thorn in their foot, the fact that their behavior improved (less screaming, crying, limping) after removing the thorn would not implicate thorns as a cause of autism. Likewise, the fact that some autistic children show improvement in the GFCF diet does not change the fact - as shown above - that gluten and/or casein have not been shown to cause autism.
Let me emphasise this point - I am not saying that parents aren’t seeing improvement, just that the improvemment may not be for the reason(s) they think. The “opioid peptide theory” of autism is dead - unless someone comes up with much better data to support it - so parents using the GFCF diet should re-think their reasons for doing it.
March 12th, 2010 at 5:27 pm
Prometheus,
My son has been seen by a pediatric gastroenterologis and he was the person that gave us the Miralax. My son does not have milk allergy, lactose intolerance or celiac disease. I am not suggesting that these foods cause autism but I do believe that they have an effect on some of his autistic behaviors. My son would tantrum because he had a problem with transition. He would tantrum because he did not like changes in his routine. If these tantrums were just associated with his gut then why so specific? These have both decreased since we started him on the diet. I don’t think it is difficult to believe that certain foods can help decrease or somewhat eliminate behaviors/feelings associated with medical issues. I suffer from anxiety and this would cause me to have occasional panic attacks. I now know that certain things,including caffeinated beverages would cause me to get extremely hyper and anxious. I eliminated caffeine from my diet and I no longer have panic attacks. Did caffeine cause my anxiety? No. Do I still suffer from anxiety? Yes and I probably always will. Am I cured? No, but I haven’t had a panic attack in over 6 years.
March 12th, 2010 at 5:45 pm
L. Rivera,
There are several reasons why your child’s behavior might have improved after starting the GFCF diet, none of which require gluten and/or casein having a direct effect on behavior. Let’s not forget that removing gluten and casein from the diet is not a simple matter like forgoing added sugar. I imagine that your child’s entire diet was altered when you started the GFCF diet.
Although you mention that the gatroenterologist prescribed Miralax, you didn’t mention if your child was specifically tested for celiac disease and/or lactase deficiency. Even so, there are food allergies beyond milk and wheat.
Your analogy with yourself and caffeine is very telling. So far as you know, caffeine (a phosphodiesterase inhibitor) does not cause your anxiety disorder. However, by raising the basal level of catecholamines and other stimulatory neurotransmitters and neurohormones, caffeine could very easily put your brain close enough to the “panic attack threshold” that a modest push (figuratively speaking) could trigger an attack.
Likewise, chronic intestinal discomfort - due to constipation, gas, etc. - may not, in itself, trigger tantrums but very easily could raise your child’s basal “tantrum tendency” to the point where everyday stress or frustrations can trigger a tantrum. Relieving this discomfort would “raise the bar” for stressors to trigger a tantrum.
Most adults know this from personal experience - when you have a headache or a stomachache or are hungry or tired, events that normally wouldn’t be a problem can trigger anger or frustration. Why would autistic children be so different?
Again, it is not my purpose to tell people that the GFCF diet can’t make their child feel (and act) better. The purpose of this post is to point out that the “opioid peptide theory” has finally been laid to rest and with it the rationale for trying all autistic children on the GFCF diet.
I would also hope that information might help some parents who are wondering whether they should start (or stop) the GFCF diet.
Nobody can argue with something that “works”, although it is useful to question whether it works. All too often, we humans fool ourselves into believing what we want to rather than what the evidence supports.
Prometheus
April 4th, 2010 at 9:37 pm
I read with interest your article and agree on testing affects of GFCF diet on asd kids.
Parents who take away Gluten and Casein also take away preservatives which also occupy the processed ingredients of a food product. Therefore, children are probably consuming more nutrients from non-processed vegetables meats and fruits.
I don’t have autism and i’m on the GFCF diet for one month (April 2010). I’m recording basic measurements of well being (not samples etc.)and how the diet is affecting my health. My decision was to try the diet before changing my asd son’s diet.
April 4th, 2010 at 10:08 pm
Stephen,
You claim that taking away gluten and casein will “also take away preservatives which also occupy the processed ingredients of a food product.” I suppose this could be true, if they avoided “processed food”.
Of course, the same would happen if they avoided “processed food” and didn’t do a gluten- and casein-free diet.
Your assertion that children in the GFCF diet are “consuming more nutrients from non-processed vegetables meats and fruits” remains to be demonstrated. The few studies done to date seem to indicate that this is not the case. Would you agree that seeing reduced bone density in young boys on the GFCF diet is not a ringing endorsement of the nutritional value of the GFCF diet?
I do applaud your decision to try the diet on yourself before imposing it on your child. I hope that your measures of “well being” are more objective than simply how you “feel”.
Also, your nutritional needs are different than those of a child. A diet that is perfectly adequate for you could be seriously deficient in several nutrients children need for proper development. Thus, you are not a good test subject for determining how the GFCF diet will affect your child.
Prometheus
May 12th, 2010 at 8:19 pm
I think you are doing a fine job prometheus. keep it up.
June 27th, 2010 at 1:58 pm
As a mother to a now teenage child with multiple disabilities including cognitive and Autism not to mention sensory and a host of other issues I have learned to take a lot of everything with a grain of salt.
I’ve seen the same improvement in my daughter that those who are on the GFCF diet claim and approximately at the same time frame and I just call it her growing spurt just like they used to say about when a kid shot up 2-3 inches over the summer. 
What I have found is that for us (not speaking for anyone but ourselves) what seems to make the biggest difference for my child is communication and education. The more ways she is given to communicate the more we learn not only about her thoughts but about how she feels so we can better be able to understand why she might be upset or why she is crying. Just teaching a child to say hurt doesn’t really give you the information you need to find and hopefully be able to resolve what the issue might be. Think about how you would feel if your ear was hurting but you had no way of telling someone. So you might cry, have a tantrum, scream, kick and still no relieve in sight but what you might get is, the child is acting out just to get attention so ignore their behavior or you might get you need to break down the steps to what they are learning even more to the point it becomes boring and then causes other issues.
So MY theory is that communication plays a huge part in our lives and even those who may “verbalize” well may not be able to explain how they are feeling inside and then frustration takes over. This of course is just coming from a mom who does’t have fancy words to write or any initials behind my name nor any kind of degree and only the 18 years of experience of raising my child with special needs. My thinking is for those who the diet helped it could be it was correcting an imbalance of sorts in their bodies and maybe by doing that eliminated either pain or discomfort.
Having a child with both Autism and Down Syndrome you can imagine I have been doing lots of studies and talking to other parents and have finally come to the conclusion that some people go to extremes in either direction and I have found the middle road to be the best place for us right now. What I have learned is that often what works today may not tomorrow and what works for some may not work for others. So what do you do? You stop stressing out, you stop trying to cure and you start learning about your child and what your child’s needs are and not worry about what other’s think or suggest. If you feel the diet is for your child then try it (but I would use some caution as you don’t to “fix” one thing only to cause another problem), if you don’t feel the diet is for you then don’t do it and for those who keep shoving it at you, tell them you won’t try to convince them to stop the diet if they won’t try to force you to start the diet.
Agree to disagree.
The one thing I hear a lot is that “my” child must not be as severe because she makes progress alibi slowly but steadily because if she truly had Autism then she would only improve by putting her on the diet. Over the years I have seen her peaks, her plateaus, her stability and the funny part is she was doing them roughly at or around the same time others who did the alternative methods were doing but she seemed to have less medical issues.
August 26th, 2010 at 4:02 pm
I just have a quick question, as I am the mother of a boy with autism who is a completely different child on a GFCF diet. His improvement is attributed to the fact that, as you put it, he “feels better” with gluten and casein out of his system because allergy testing has shown that he is truly intolerant to gluten and casein, among many other things. My question is this: if gluten and casein do NOT act like “drugs” to his brain, why when he ingests even small amounts of it does he act like he’s drugged and then withdrawls afterward? (I’m a nurse, I know what this looks like) This goes on for a week after even a small infraction. That does not sound like just an intolerance.
August 27th, 2010 at 4:42 pm
D’s Mom,
To begin with, it’s not necessary to know what causes something to know that certain things don’t cause it. The “opioid peptide” hypothesis of autism has been shown - pretty definitively - to be false.
Secondly, there are disorders which involve gluten that are not causes of autism but can cause the behaviors you describe. I refer you to two recent reviews of celiac disease:
There may be other explanations, as well. While I can’t explain your son’s responses to gluten and casein, the data still indicate that gluten and/or casein do not cause autism.
Let me summarise the positions I take in this post:
[1] The opioid peptide hypothesis of autism has been disproven - twice.
[2] The intestinal permeability hypothesis of autism is looking very shaky.
Now, this doesn’t mean that some people with autism don’t have sensitivity to gluten and/or casein; it also doesn’t mean that some people with autism don’t have increased intestinal permeability. What it does mean is that these conditions do not cause autism.
It is also entirely possible - given what we know about celiac disease - that some people with primarily neurological manifestations of celiac disease may be misdiagnosed as autistic.
The bottom line is that the data speak against having all autistic people treated with a GFCF diet. In fact, removing gluten from the diet prior to testing for celiac disease greatly increases the chance of a false-negative test (both blood tests and endoscopy). Given the other health risks that attend celiac disease - some of which (e.g. cancer) are not modified by a gluten-free diet - missing the daignosis is a serious problem.
Prometheus