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?
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 dailySubjects 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.
Left Brain Right Brain 
My thoughts on why they are conducting this study on autistic children is the long held belief that the GI disorder has something to do with the autism and if you fix one, you will fix or improve the other.
Hi Sullivan –
Well, not specifically tied to diet, at least one abstract at IMFAR gives us evidence that GI problems in autistics may be qualitatively different than GI problems outside of that arena.
Intestinal Inflammation, Impaired Carbohydrate Metabolism and Transport, and Microbial Dysbiosis in Autism
The official narrative has always been along the lines that ‘kids with autism sometimes have GI problems’; implying that there isn’t anything special about these problems in our population of interest. These findings argue that the GI environment in autism is qualitatively different than GI problems in other children. Given that, we may have reasons for studying autism specifically
– pD
pD-
I saw that abstract. I would correct you that if that research is correct, there is a quantitative difference between autistics (or some subgroup of autistics) and non autistics in terms of their GI problems.
Why not screen for autistics with these markers in this research?
The study raises interesting questions. Assume 50% of autistics have a syndrome including GI complaints (taking numbers from the. Shouldn’t there be twice the prevalence of GI complaints in autistics?
I don’t know where “official narratives” are kept. I think that so far most people would say that there is no evidence for a different type of GI complaint in autistics. In particular, the “leaky gut” and Wakefield models have no substantive data to support them.
I’ve read prevalence estimates for GI complaints that claim (a) there is no more GI complaint for autistics, (b) there is a higher prevalence for autistics, but it is comparable for other developmental disabilities and (c) there is a higher prevalence for autistics.
I would think that applying the diet to autistics, those with other developmental disabilities and non DD controls would make some sense.
One question is whether the GI is associated with autism, or associated with autistics. Major difference.
Hi Sullivan –
I guess I would classify differential expression of genes involving inflammation, carbohydrate metabolism, and dysbosis qualitative measures. The authors state that they observed a ‘distinctive syndrome’ in the autism population, that doesn’t speak towards quantities, it speaks towards uniqueness; i.e., quality. (?) What type of measurements would you consider a qualitative difference of gastrointestinal dysfunction if these findings do not qualify?
I’m not sure we are talking about the same abstract. My take would be, among the subset of children with autism that have GI dysfunction so severe that biopsy was warranted, there appear to be distinctive differences in how that dysfunction is manifested physiologically; specifically in terms of gene expression for genes known to influence inflammation, carbohydrate metabolism, and dysbosis. As far as twice the prevelance of GI complaints, this is a difficult thing to measure accurately, and as you state, there seem to be studies in all directions.
Hehe. In any case, the abstract I posted above, wherein the authors describe a distinctive syndrome is exactly this type of evidence. What does a distinctive syndrome indicate, if not a different type? There was, if I recall correctly, a negative paper regarding leaky guy and microbial translocation at IMFAR, and the measles theory seems increasingly unlikely.
I’ve read similar things.
Hm. Well, OK. But look at what the authors report; distinct differences in carbohydrate metabolism in the autism group only. There are some children with autism that are on a very restrictive diet, SCD, which removes all complex carbohydrates. We tried it for several months with our son with (to our eyes), amazing results. His profile looked a lot like the results of tihs paper, severe dysbosis, chronic loose stools, and highly skewed bacterial populations. When we removed complex carbohydrates, his behavior, cognition, and bowel movements improved drastically. What a curious coincidence!
One question is whether the GI is associated with autism, or associated with autistics. Major difference.
I’m not sure I follow this precisely. Can you restate it?
– pD