DIY biomedical intervention

[Neveradullday]

My ds (3) has recently been dx as asd. It is considered mild and we have therapy lined up. I have looked into the biomedical intervention and recently started him on a gfcf diet. Problem is we live in a place where we do not have access to the right practitioners to assist us with this. I noticed the gfcf diet seem to be having some kind of effect (he is more with it, less echolalia and less hyperactivity) so I am thinking of doing this properly. He is already on vitamins, omega 3-6, and calcium supplements. I am looking to introduce probiotics and enzymes (unfortunately I am still trying to navigate the whole birthday party/playdate treats). Has anyone started a similar intervention with their toddler on a self starter basis, and if so what worked for you? I don't want to screw this up or give him the wrong supplements. Many many thanks.

[Jasonandyawegunorts]

Good to know Jason. All the best.

what a strange reply.

[ouryve]

I should market DS2's diet. Ham sandwiches, sausage rolls, fried ovals eggs, cake, hot cross buns, yoghurt and crap & chips.

The progress he's made in the past year has been quite astonishing.

[Bilberry]

reams of scientific papers available

There may be reams of papers written but actually there is very very little quality research. Once you start looking only at unbiased research you will find no or very very limited evidence of effectiveness (eg trials with only 10 people in each arm and no recording of harmful effects). For example, if you look at Cochrane reviews for a variety of dietry interventions/supplementation they all say there is no evidence to support any of those interventions or to say they are safe.

'Evidence' such as that for the Ouvyre ham sandwich diet or the Polter marmite diet is (I'm sorry ladies) not worth the paper/screen it is written on. Maybe they do work but there is no scientific evidence to back up this assertion.

[ouryve]

We have a sort of overlap there, then, zzzzz. DS2 also eats cookies (though not chocolate ones as we don't like scraping them off his bedroom floor at midnight)

We can market the cookie and fig roll diet, based on a sample of 3.

[Neveradullday]

Lol very funny. I was just sharing the results of my trial, hardly an aggressive intervention. If people choose to give it a miss based on research disproving any link (bearing in mind there is just as much research proving it), it is a shame, but I respect it. For those who do want to give it a try, I have shared my sources.

[Bilberry]

That is it - there isn't any quality research proving a link (double-blind RCTs also taking into account harms). Of course this doesn't prevent you observing a strong correlation in your child though this would not qualify as a 'trial' just an observational case study with a sample size of 1 with strong confounding factors.

By the way 'E numbers' are not automatically 'bad' eg you would really struggle to survive without E948 and I'd fancy quite a lot of E175 though I wouldn't eat it; your supplements will contain E numbers (though probably given their full name).

[VioletBumble]

My feeling is that there are a lot of research dots that need to be joined up with regard to allergies, auto-immune disease, gut dysfunction, malnutrition, opiates, developmental delay, psychiatric disorders like anxiety and depression, and sensory dysfunction (that's just in my immediate family lol).

It's obviously not as simple as 'gluten/casein causes autism' but there's a lot worth investigating imo.

I have no axe to grind here, I'd prefer it if no association was proved as it would be near impossible to get DD to give up her beloved diet of Cheerios, pasta, cheese and crackers.

This 2012 review is interesting and certainly doesn't dismiss a connection:

www.ncbi.nlm.nih.gov/pmc/articles/PMC3641836/
"Neurologic and Psychiatric Manifestations of Celiac Disease and Gluten Sensitivity: This review focuses on neurologic and psychiatric manifestations implicated with gluten sensitivity, reviews the emergence of gluten sensitivity distinct from celiac disease, and summarizes the potential mechanisms related to this immune reaction. ... Conclusion: Converging and accumulating evidence suggests that the gluten-mediated immune response is frequently associated with neurological and psychiatric manifestations, and GS [gluten sensitivity] represents a unique condition with a potentially different mechanism and different manifestations than celiac disease. More research is needed to help disentangle CD from GS and to understand the mechanisms of gluten-associated neurologic and psychiatric complications. These central nervous system effects of GS and CD are not trivial. Therefore, given the under-diagnosis and potential health consequences, this suggests the value of developing better ways of detecting and preventing the potential complications of these disorders."

[Bilberry]

Violet that is a very poor review - more of a narrative. The authors have not systematically searched the literature, stated what their criteria is for including studies or done any sort of quality analysis of their included studies. We have no way of knowing what studies they have ignored or how they have tried to addressed bias. I think all that can be concluded is that more research is needed. Note, I am not saying there is not a link only that there is no robust scientific evidence to assess the benefits and harms of such a diet on ASD

[VioletBumble]

Okay, that is interesting. So you're saying that there is no definitive proof either way?

It's a shame it has been beyond the wit of scientists to do decent stand-up research on this so far. Autism and anxiety research seems to be a very active field, especially in the USA (if the media is to be believed), so why no conclusions either way?

[Bilberry]

Doing randomised controlled trials is very expensive especially if there isn't a drug at the end of it which would attract big pharma to do the research. It is also difficult ethically to do research in children or others lacking capacity. However, this would seem to be an ideal candidate to do such research as there is uncertainty about the outcomes (if you are fairly sure which treatment is best it would be unethical to provide an alternative treatment). It would take a good number of years to conduct such a trial and even then there would be arguments about its generalisability.

[ouryve]

And trials independent of drug companies, along the lines of this sort of thing, have to rely on pretty small pots of funding from the likes of NIHR. Some pretty impressive research proposals have funding turned down, simply because there have been even better ones and resources are extremely limited.

The better proposals, whatever their subject, are based on work that has gone before and look to develop and/or consolidate something that shows promise. When there is no body of good quality evidence behind the work, then the chance of funding is already pretty slim.