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Study claims gluten free diet leads to higher levels of heavy metals like mercury

6 Mar

One of the purported treatments for autism is the Gluten-Free/Casein-Free (GFCF) diet. Studies have failed to find a benefit, but the idea persists. Especially among those who believe that autism is a vaccine injury (it isn’t) and that mercury in vaccines contributed to the rise in autism rates (it didn’t).

So there is a huge irony in the possibility, as a recent study suggests, that people on a gluten-free diet have higher levels of mercury and other heavy metals

The study is The Unintended Consequences of a Gluten-Free Diet.

The full study doesn’t appear to be available. This looks like a conference abstract.

That said, check out this table:


Total mercury in the blood is 1.7 times higher in people in the gluten-free diet group than in the overall population.

Now, it looks like the units in the table are ng/l, so a total mercury level of 1.3ng/l (that in the gluten-free group) is still well within the normal range (<10ng/l).

Of course it is also worth mentioning that those who promote the gluten-free diet for autistics often have the attitude that no mercury level is safe (which is tough, since there is mercury at some level in just about everything).

So, yeah, ironic but not dangerous. By pushing the gluten-free diet, people may have pushed autistic kids into higher levels of mercury in their blood.

Do we expect Robert Kennedy, SafeMinds, Mark Blaxill, JB Handley, Generation Rescue or any of the others in what was once called the “mercury militia” to inform their groups about this? Sure, if they are really about autism and not about attacking vaccines.

Which is to say, I doubt it.

By Matt Carey

Another study on the gluten free/casein free diet and autism. This time focusing on kids with a sign of “leaky gut”

9 Sep

I recently wrote about a study of the gluten free/casein free (GF/CF) diet and autistic kids. The kids in that study were put on the diet and then given snacks with gluten and/or casein and their behavior was monitored. And nothing happened. Breaking the diet did not cause increases in autistic behaviors. But people complained that the study size was small (valid complaint, but not a killer) and that the kids in the study didn’t have GI disease (again, not a killer for the study. The GF/CF diet is marketed as a very general autism “therapy”).

But I wrote the previous article knowing that another study had just come out. A study focused on kids with “severe maladaptive behavior” and a sign of the so-called “leaky gut” syndrome. Gluten and casein supplementation does not increase symptoms in children with autism spectrum disorder.

The abstract is below. The researchers looked at 74 kids with “increased urinary I-FABP” I-FABP is intestinal fatty acid binding protein. And this is considered a “marker of gut wall integrity“. The study team found this marker elevated in a number of their subjects from a previous study.

While it isn’t clear in the abstract, the autistics in the study were on a GF/CF diet

To our knowledge, our study is the first randomised controlled trial to study the behavioural effects of adding gluten and casein to the diets of children with ASD who were already on a GFCF diet.

So, they had autistic kids who were on the GF/CF diet and they gave some of them gluten and casein snacks and the others GF/CF snacks. For a week. And they looked at the changes in behavior.

Both groups–those given gluten and casein and those who weren’t–saw improvements on measures of behavior. But there was no difference between the two groups on the measures of behavior.

There was no regression. No children made more autistic by gluten and casein.

In other words, no indication that the diet was doing these kids any good.

Here’s the abstract.

A gluten- and casein-free diet is often given to children with autism spectrum disorder (ASD). We aimed to determine the effect of gluten and casein supplementation on maladaptive behaviour, gastrointestinal symptom severity and intestinal fatty acids binding protein (I-FABP) excretion in children with ASD.

A randomised, controlled, double-blind trial was performed on 74 children with ASD with severe maladaptive behaviour and increased urinary I-FABP. Subjects were randomised to receive gluten-casein or a placebo for seven days. We evaluated maladaptive behaviour before and after supplementation, using I-FABP excretion, the approach withdrawal problem composite subtest of the Pervasive Developmental Disorder Behavior Inventory and the Gastrointestinal Symptom Severity Index.

The mean approach withdrawal problem composite score was significantly higher before supplementation than after, both in the placebo and in the gluten-casein group. However, the mean difference was not significant and may have been caused by additional therapy. There was no significant difference in gastrointestinal symptoms and urinary I-FABP excretion.

Administrating gluten-casein to children with ASD for one week did not increase maladaptive behaviour, gastrointestinal symptom severity or urinary I-FABP excretion. The effect of prolonged administration or other mechanisms of enterocyte damage in ASD should be explored.

©2015 Foundation Acta Paediatrica. Published by John Wiley & Sons Ltd.

Autism spectrum disorder; Casein-free diet; Gluten-free; Intestinal fatty acids binding protein; Maladaptive behaviour

There are a lot of limitations with this study, and the authors do discuss them. But, frankly, if the GF/CF diet were as good as people claim, this study would have shown at least some benefit.

By Matt Carey

Gluten Free/Casein Free diet and autism studied…and no sign of a benefit

9 Sep

Perhaps one of the more common alternative medical approach to treating autism is the gluten free/casein free diet. And alternative means–not demonstrated to be beneficial and, very often, not even well founded on sound reasoning. And by common, it appears that about 17% of parents have opted for some form of special diet, so GF/CF in particular is likely less than that.

The GF/CF diet (as it is often known) was first proposed based on the “opiod excess” theory and the “leaky gut” theory. Neither theory has shown itself to be valid.

A previous review found that “Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.” The clinical trial just published appears to be based on a study presented at IMFAR a few years ago.

The study was fairly simple–they put children on a GF/CF diet. They then gave the children snacks. Some contained gluten and/or casein. Some did not. The parents didn’t know which snacks were which. The behavior of the children was recorded and correlated against the inclusion of gluten or casein. And no benefit was observed. Here’s the study:

The Gluten-Free/Casein-Free Diet: A Double-Blind Challenge Trial in Children with Autism.

and abstract:

To obtain information on the safety and efficacy of the gluten-free/casein-free (GFCF) diet, we placed 14 children with autism, age 3-5 years, on the diet for 4-6 weeks and then conducted a double-blind, placebo-controlled challenge study for 12 weeks while continuing the diet, with a 12-week follow-up. Dietary challenges were delivered via weekly snacks that contained gluten, casein, gluten and casein, or placebo. With nutritional counseling, the diet was safe and well-tolerated. However, dietary challenges did not have statistically significant effects on measures of physiologic functioning, behavior problems, or autism symptoms. Although these findings must be interpreted with caution because of the small sample size, the study does not provide evidence to support general use of the GFCF diet

The study group is small, so it is possible they missed some benefit. But if the parent survey often quoted were correct and 69% of children showed a benefit, this study should have picked that up.

There are, of course, people who are sensitive to various foods. People both autistic and not. So some fraction of the population will benefit from elimination diets. But the idea that many promote of elimination diets as the first thing to try, no matter what (and there are people who do), is flawed at best.

By Matt Carey

Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism.

24 May

Perhaps the most commonly cited alternative therapy approach for autism is the gluten free/casein free diet. The idea was promoted largely based on the “leaky gut” and “opiod excess” idea of autism. The basic idea was that the intestines of autistics are for some reason “leaky” and incompletely digested proteins from gluten (grains) and casein (milk) enter the bloodstream and act much like an opiod (drug) causing (somehow) autism. Multiple research teams have looked for evidence of these “opiods” without success. But the idea that eliminating gluten and/or casein as an autism treatment.

Timothy Buie is perhaps one of the most respected gastroenterologists in the autism communities. He has recently written a literature review on the topic: The relationship of autism and gluten.

Here is the abstract:


Autism is now a common condition with a prevalence of 1 in 88 children. There is no known etiology. Speculation about possible treatments for autism or autism spectrum disorders (ASD) has included the use of various dietary interventions, including a gluten-free diet.


The goal of this article was to review the literature available evaluating the use of gluten-free diets in patients with autism to determine if diet should be instituted as a treatment.


A literature review was performed, identifying previously published studies in which a gluten-free diet was instituted as an autism treatment. These studies were not limited to randomized controlled trials because only 1 article was available that used a double-blind crossover design. Most publish reports were unblinded, observational studies.


In the only double-blind, crossover study, no benefit of a gluten-free diet was identified. Several other studies did report benefit from gluten-free diet. Controlling for observer bias and what may have represented unrelated progress over time in these studies is not possible. There are many barriers to evaluating treatment benefits for patients with autism. Gluten sensitivity may present in a variety of ways, including gastrointestinal and neurologic symptoms. Although making a diagnosis of celiac disease is easier with new serology and genetic testing, a large number of gluten-sensitive patients do not have celiac disease. Testing to confirm non-celiac gluten sensitivity is not available.


A variety of symptoms may be present with gluten sensitivity. Currently, there is insufficient evidence to support instituting a gluten-free diet as a treatment for autism. There may be a subgroup of patients who might benefit from a gluten-free diet, but the symptom or testing profile of these candidates remains unclear.

To paraphrase the conclusions: The evidence is not there for eliminating gluten from the diets of autistics. Perhaps some minority has a gluten sensitivity but so far there is no good test for this possible subgroup.

By Matt Carey

U. Rochester researchers discuss diet-autism trial

20 May

We’ve already blogged this story a couple of times on LeftBrainRightBrain. The GFCF diet is not effective as an autism treatment. When I found these videos on the University of Rochester website, I thought they would be interesting to many readers.

Obviously, the Rochester team knew this study would be getting publicity

They discuss the methodology and show pictures of some of the snacks. They discuss how the GFCF diet is non trivial to implement. They recommend (strongly) working with a good nutritionist.

Clinical Trial of the GFCF diet in children with GI disorders

19 May

The gluten free, casein free diet is not beneficial to all autistics. Not even most. But the question remains, how about a small subset? What about autistics with gastrointestinal (GI) conditions?

A Study to Assess the Role of a Gluten Free-dairy Free (GFCF) Diet in the Dietary Management of Autism Associated Gastrointestinal Disorders

I find the phrasing “Autism Associated Gastrointestinal Disorders” a bit odd. Are they trying to say that the GI disorders are linked to the autism? Since there is no group as yet shown to have GI disorders linked to autism, this would seem a tricky criteria to implement. How will they, for example, chose those who have GI disorders “associated” with autism vs. those who have autism and GI disorders which are not associated?

Ah well, best not to get tied up in those details.

Here are the inclusion criteria:

Inclusion Criteria:

* Informed consent / Assent, as applicable must be signed prior to executing any study related procedure
* Children, male or female, 2 to 17 years old (inclusive)

Confirmed diagnosis of ASD according to the diagnostic measures:
o DSM-IV Symptom Checklist
o Autism Diagnostic Observation Schedule(ADOS)&/or Autism Diagnostic Interview Revised(ADI-R)within 18 months prior to entry into the study
* Able to consume at least 2 cartons of the study drink daily

Subjects must present with a current history of at least two of the following persistent GI symptoms as confirmed by the study physician:
o Diarrhea, as characterised by three or more loose stools a day for at least 8 out of 14 days
o Constipation as characterised by less than 3 bowel movements per week, for at least a 2-week period
o Esophageal reflux, as characterised by 3 or more episodes of regurgitation per day on 10 out of 14 days
o Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days
o Suspected food allergy which is confirmed by a physician, as characterized as a recurrent reaction or association with specific foods

I think that last one is key–suspected food allergy with recurrent reactions to specific foods. Of course such conditions should be treated, and would likely respond to changes in diet.

I also question “Abdominal pain manifested as pain after eating or self injurious behavior on at least 8 out of 14 days”. How is self-injurious behavior a manifistation of abdominal pain? Yes, I can see how a child with abdominal pain could be self injurious, but I can also see that many children with self injurious behaviors could have them as a result of other conditions.

Here are the exclusion criteria:

Exclusion Criteria:

* Children with a history of anaphylaxis to dietary milk and wheat proteins
* Children with severe concurrent illness
* Children who are prescribed systemic steroids
* Children currently receiving chelation therapy, hyperbaric or antifungal treatment within 1 month of entry into the study and during the study period.
* Children with a confirmed diagnosis of celiac disease
* Subjects who have previously tried dietary elimination of casein and gluten for at least 1 month period and failed to demonstrate a response by parent perception
* Children who are unable to consume at least 2 cartons of the study drink daily

It strikes me a bit odd that children who have been on “The Diet” in the past but didn’t respond would be excluded while those whose parents who tried “The Diet” and perceive benefit would be included. But, I guess this is a treatment study, not a “demonstrate that GI complaints exist in autistic children” so that selection bias may be OK. It will be interesting to see to what level parents’ perceptions are accurate in these cases.

The real question I have is, why? Why do this study? Why focus on autistics? If a person, child or adult, autistic or not, has a food allergy and reacts to those foods, of course take them out of the diet.

But, not all of the children in this study will have suspected food allergies. Any two of the criteria above are required for inclusion in the study. But, I’m still stuck with “why autistics”. Why not study children, any children, who have GI complaints and see if they respond to the GFCF diet? Or, why not study both autistics and non-autistics and shed some light on the assertion that GI disorders are associated with autism?

The study is being conducted at Massachusetts General Hospital with Dr. Tim Buie as the investigator. Anyone interested in participating can find the contact information on the Clinical Trials announcement.

Blogging IMFAR: Opening Press Conference and GFCF Diet Trial Results

19 May

After air traffic/weather delays, I arrived in Philadelphia late last night. By the time I made my way downtown to the hotel, and had a chance to catch up on some required work e-mail, I was was pretty well ready for bed. Having had a very busy past couple of weeks at work did not leave me much time to preview the IMFAR program materials, so before turning in, I’d figured I’d better look through it thoroughly.

And that’s when the pure size of IMFAR finally sunk into my brain. To cover this, from one blogger’s perspective, is going to be a huge challenge. There is absolutely no way for one human to assign attention to all that is here in the field of autism research – a great deal of the presentations occur simultaneously in separate meeting rooms.

For me, IMFAR started with this afternoon’s press conference. Organized by INSAR, and following a brief introduction by Dr. David Amaral (INSAR’s president), Dr. David Mandell (the IMFAR Scientific Program Committee Chair) spoke briefly about just how large IMFAR has become – from couple of hundred abstracts and a few hundred attendees nine years ago, to closer to a thousand accepted abstracts and a couple thousand attendees this year.

Dr. Mandell shared what he thought were two imporant themes from this year’s scientific program, the first being the volume of good research that seems to be emerging. Although Dr. Mandell pointed to progress in animal models and gene research (and its subsequent relevance in gene-brain imaging/brain functioning research), he seemed to ascribe importance to pointing out a second theme, in that reasearch is also beginning to focus on more pragmatic things – or to paraphrase his words, research is beginning to look at things that can effect “real and positive change”.

For many in the autism community, this is bound to raise ethics questions about “treatment” for autism in general, but put aside debate over social vs. medical model of autism, if only for the moment. There’s another important aspect, and Dr. Mandell did not miss this. Studying treatments has the potential to effect real and positive change, because many treatments and “alternative medicine” in use by families on children are simply untested, and some even have the potential to be dangerous.

As an example of a treatment study that has the potential to encourage parents to take a closer look at the science, Dr. Susan Hyman from the University of Rochester presented her team’s findings from their GFCF study (this is the randomized, double-blind, placebo-controlled that began in 2003). I’ll spare the gory details, as they are well-documented in the previous post GFCF of no benefit. Suffice it to say that what started with anecdotal reports of specific benefits for autistic children from a GFCF diet, is not supported by scientific data when studied with good research methodology. While it’s important to note that this small study has more rigorous methodology than any previous study on the use of the GFCF diet with autistic children, it’s also important to note that these are pre-publication results shared with the press and at IMFAR. Additionally, when asked about any real scientific basis for the GFCF diet for autism, and after acknowledging the historical [but not necessarily scientifically founded] aspect of a “leaky gut and opioid excess hypothesis”, Dr. Hyman was careful to point out that there may be other complex areas in nutrition that are relevant for learning and behavior in autistic children.

Even with what are essentially negative results for this study, it appears that “nutrition and autism” research will continue at the University of Rochester. I suspect that this University of Rochester GFCF RCT will dominate autism news for the next couple of days, as it seems to have that appeal of a topic of popularity. It also wouldn’t surprise me if this story is a headline for some of the mainstream media tomorrow.

Next up: More on Autism and Divorce Debunked! Plus a little more about some of the other abstracts from the press conference. I’ll also share a little about the pieces of the program I plan to attend, so anyone wishing to, can follow along in the published program, as I attend and report back here.

(Disclosure: my attendance at IMFAR was funded in part, by a travel grant from the Autism Science Foundation.)