Autism linked to digestive problems?

[Lauree]

I found this while I was ramdomly searching for a cure for my mouth ulcers.

I'm not recommending it or otherwise - I just thought some of you might be interested...

gutdoctor.com

There is a very interesting book on this by a Dr Natasha Campbell McBride a gp with an autistic son who reccomends dietary changes and probiotics (and other stuff like ABA!). She quoted lots of medical evidence and reports but i'm not qualified to say how thorough they are. must say i found it quite convincing and once we've had some health issues checked out for ds am tempted to give it a good try.

I don't think this is what causes autism but i'm now convinced that in some cases autistic children are more susceptible to having gut/immune problems which then in turn has an impact on their ability to interact/learn. A vicious circle.

Derrick mcfabe has done/is doing a lot of work on gut flora imbalance & autism.

Hmm. From that website, "As one mother of an Autistic child indicated "this is the first real genertion of kids whose mothers used antibiotics on a regular basis, so we have less good bacteria to pass on to our babies."

Well, the rate of autism is the same at every age range, even the ones before general use of antibiotics, so I'm not quite sure what science that represents.

My view remains that autism is a brain design difference. Gut problems can make us cranky as hell and horrible to be with, but I have found no realistic evidence that it makes us autistic or non-autistic. It's like alleging that eating the right stuff would make your leg regrow if you're an amputee: It might make you feel better, but the leg's still going to be missing.

Related: Big metastudy just reported in Communication magazine from the National Autistic Society on gluten-free diets etc and autism - no proper evidence to support any difference, and potential big problems with nutritional deficiency if parents muck about with diet.

We'll wait to see what further science emerges.

Autism lots of different things though Amber and there are huge discussions as to whether the rate is rising. It has risen massively in ds1's school - you can see it. The older classes have very few kids with autism - lira of children with general LD's. ds1's class is all autistic ( no other dx in the kids). Talking to someone whose child is now in their 30's at the time her child went to the school there were only a few autistic kids in the whole school. She said to me 'there are classes full now- where are they all coming from'.

These are children who need 24 hour care and ds1's school is the one that has been dealing with that population for the last 30+ years.

The NAS has always been anti gluten free diets. There is other evidence that shows they can be beneficial.

I don't know why the NAS doesn't just come clean and state that it's a neurodiversity organisation.

You could be right. But I think autism is one thing - a difference in brain design. The differences in how it is expressed and how it appears come from which bit of the brain got connected to which other bits in which way, I believe. Bit like one of those kaliedoscopes, where wiggling it a bit makes it come out with all sorts of different designs and colours...but the underlying mechanism is the same and it's one kaleidoscope.

I hold to Prof Anthony Bailey's findings on dissection and fMRI scanning, which shows that the brain's layers don't stop growing in autism, and the structures relate differently according to which bits of it end up where and connect to where. Hence the variation in how it looks and whether it also relates to speech and language, or to epilepsy, or to major sensory issues or any of the other co-morbids.

I think autism has had the same prevalence throughout, but the way we run society now is so utterly anti-what-we-can-handle that more and more of us are becoming visible. Example? I know that I used to be able to get through a school day OK, but I can't now - just so much chaos, the lighting is now so flickery, the extra noise from computer units and overhead projectors and whiteboards, the constant chaos of different groups all chatting....it's like a tidal wave of incoming stuff. Pushes me way, way over what I can cope with. Put me in an 'old fashioned' classroom and I can cope just fine.

It's an interesting debate, for sure. And you and I will both look forward to a definitive answer.

I'm sure that for some kids diet can have an effect, but I really can't see it in our family. OK, so DD is not classic ASD, but frankly, I've hardly ever had antibiotics in my life. She's had them once. DH has hardly ever had them. We all of us have extremely robust digestion, never sick, no sign of any immune deficiency in the family, etc. etc.
BUT I know people to whom gluten-free diet has made HUGE difference...so I really don't know.

The single best study on this issue is here, with a related commentary here.

The take home message seems to be that children/young adults with ASD have no greater rates of gastrointestinal symptoms, such as diarrhea, gastroesophageal reflux and vomiting or abdominal discomfort and irritability.

Children/young adults with ASD had a higher incidence of constipation and feeding issues/food selectivity.
This seems likely to be caused by two factors:

"The ritualistic tendencies, need for routine, and insistence on sameness that are characteristic of children with autism may lead these children to choose and demand stereotyped diets that may result in an inadequate intake of fiber, fluids, and other food constituents."

And

Effects on appetite are known adverse effect of medications commonly used to manage some ASD related symptoms.

There are sub groups for which this does apply, females with Rett Syndrome for example but in general, there seems little reason to think digestive problems are more common in people with ASD.

Re: Derrick MacFabe

His group certainly have a hypothesis related to ASD and the gut.

But his published work to date has all been injecting rat brains with high levels of dietary acids and thus recording neurological symptoms, some of which (not all), are ASD like.

Considering how well the liver gets rid of these things, add in the blood-brain barrier and you don't have much to run with.

Brioche- that's the point - autism is so many different things.

I'm not sure why you would say that was the best study DBennett - it doesn't even identify subgroups. No-one expects to see gastro-intestinal symptoms in all autistic children.

I've spoken to Derrick McFabe at length - yes his published work involved injecting metabolic products - but these are substances that arise from having an unhealthy gut bacteria, rather than dietary acids as such - they're gut bacterial metabolites -specifically if I remember correctly metabolites from Clostridia. very accessible video here for anyone interested.

There's been a lot of suggestion that the blood-brain barrier may be compromised in (some cases of) autism.

I'm interested in your link to autism DBennett - you appear on a lot of autism threads but don't seem to have any hands on experience? (not that you need to, but am interested in why you are interested/your background).

This recent Pediatrics paper is (imo) a very interesting read on gastrointestinal symptoms and autism - not least because they've considered severe autism as well. They do discuss the rate of gastrointestinal symptoms and concluded this: "Most of these studies had 1 or more methodologic limitations, in particular a lack of appropriate (nonrelated) control groups. Despite the limitations in type and quality of available evidence, the preponderance of data were consistent with the likelihood of a high prevalence of gastrointestinal symptoms and disorders associated with ASDs." They go on to say more research is needed.

~Although reading that again I am once again struck with the need to properly identify subgroups. Research into autism and biomedical issues is utter nonsense until this is done.

Re Derrick MacFabe

Propanoic Acid is a product of a group of skin bacteria.
But it is mainly found in preserved foods.
Certainly not consistent with a "unhealthy gut bacteria " hypothesis.

And I'm not sure that I'd say there has been a "lot of suggestion that the blood-brain barrier may be compromised in (some cases of) autism.".

Theoharides is the one I think of when this idea is raised and he portrays it as a fan of mast cells (which is not unusual for him).
Again, quite a lot of smoke for not much light.

As to the best study, it is a large scale, well controlled cohort study using age, gender and length of follow up matched controls.
This is better than anyone has managed before.

And the researchers , plus the commenter's, were clear that this finding does not apply to certain sub-groups.
But to to call it "utter nonsense" because the paper does not sub divide into statistically un-useful groups is to take an extremely partisan view in the "groupers vs splitters" debate.

I happen to think the lack of identification of sub groups is a huge issue on autism research. I think it's the biggest issue. It's certainly talked about by pretty much everyone working in autism research (except sbc but yo be honest he'd pass out if he met ds1 - and no-one with severe autism can currently take part in autism research at Cambridge - although this isn't recognised by Cambridge - and that to me is a huge issue - anyway I digress).

However, people have mortgages to pay and they're not going to stop publishing until subgroups are sorted even if it weakens their arguments. In terms of the paper you linked to I do think lack of identification makes it a nonsence. I need to re-read the paper properly to work out how they found their samples - but here for example if you examined the children coming out of the CDC (where ds1 was dxed) you would probably find quite a high number of children with digestive problems. If you took the children coming out of cahms then you will have lots of aspies and a lower % of digestive problems. Crude but broadly true - and reflected in my real life experience.

The most interesting issue raises in the paper was food selectivity. Especially when you put it in context. People make a huge fuss about parents trying a gfcf diet - as if that will starve a child of nutrients. In fact gfcf food is often very healthy as you have to make most things from scratch - and meat and 2 veg fulfills the diet nicely. There's nothing wrong with a gluten free diet. Parents can try it and see for themselves. Ime you see pretty quickly whether it's helping. Of course it does mean professionals then have to believe parents if they say it helps their children - something they often find difficult. I took photos of the bruising caused by foods but some still struggled. Tbh I couldn't care less - I wasn't having to scrape my child off the pavement.

Far more of a problem in terms of diet ime is food selectivity. For a number of years ds1 ate no meat, no fish, no cheese (unless hidden), no fruit and no veg. This restriction started before he went gluten free - the only difference the diet made was that we started making our own bread (instead of white sliced which was all he would touch) so could hide extras in it. Of course there is no help out there for families in this situation. We were very very lucky that when ds1
moved to an sld school his teacher decided to work on this - In a way I couldn't with a toddler and baby to
feed as well. It took him a year but it eventually worked and he now eats very healthily. He's no longer gluten free and he no longer has gut problems (our treatment of choice was to work on gut bacteria -esp given tge number of antibs he'd had and in his case it worked well. No more overflow to clear up). His diet is actually less healthy now he's not gluten free as I tend to grab food when we're out and about where previously I would have taken a packed lunch or more likely eaten at home.

You still haven't explained your interest in autism dbennett. Just curious.

I think you need to read mcfabes work btw for his reasoning on ppa.

Incidentally I work on severe autism and have made no attempt to identify subgroups because there's no easy way to do it - but for my work it doesn't really matter. If you're going to start saying 'all autism is this' or proclaim about the use of interventions such as diets it's essential though. It would be equally troubling if diets were proclaimed to be useful for all - they're very clearly not.

If you are talking about whether interventions help - especially biomedical ones - you have to identify subgroups. There is (imo) no getting round this.

Saying that as as a researcher AND more importantly someone who spends every day with people with autism - and knows many people with autism and thus recognises the huge enormous diversity of the condition.

if someone was given 100,000 gut samples (50,000 NT and 50,000 Autistic), would he or she be able to identify the autistic ones at a rate higher than chance ? I think until this can be done, it will never be possible to that there is a link that is not just a subjective interpretation.

But willow - there's no such thing as 'autism' so that would be pointless anyway. What would be more interesting is whether within the autistic sample there were subgroups - so for example particular patterns of gut problem relating to say particular behaviours or particular regressions.

We put ds1 on a gluten free diet when he was 2. We saw a very rapid obvious change which lasted for 3 weeks. After 3 weeks the positive changes disappeared and after a terrible day I realised all the behaviours that had improved were back. I sarand sobbed at the lost hope. I wandered back into the kitchen and picked up an aia newsletter or book and started flicking despondently through it until I came across an article on baking powder. I then realised that in my latest batch of buns I'd used the wrong baking powder - I'd picked up one that contained flour. Chucked the baking powder away, made more buns and away went the behaviours again. That's about as blind as you'll get with a parent but it was enough for me - and far more relevant than a distant study about 'autism' when I don't even know whether the participants had the same autism as ds1.

Later food difficulties were easy to spot as ds1's diet was so limited. It did take me a long time and a lit of bruising to ds1's head to spot problems with peanuts partly because I've never heard of anyone else having a problem with them and partly because it was tge one good protein he was eating. At the time he was eating
fewer that 10 different items of food - the 2 months he had peanuts he was hitting his head repeatedly and on concrete up to 50 times a day. My walls still have dents in them from the bashing he was giving his head and the bruising was extreme. We removed peanuts and three days later the behaviour had gone. We could go outside and not have to peel him off the pavement for the first time in 2 months. Reintroduction of peanuts later had the same effect. I don't care that I don't understand the mechanism or what was going on there - just happy to have my happy boy back.

You can download data sheets from the Internet that allow you to score behaviours - can be helpful if you're trying to assess whether a particular food is a problem.

I don't think it's a problem if someone wants to try GF as long as it's healthy and GF seems to be. It does not matter what you do really , there is always someone disapproving - I take DS to McDonalds a lot and another mother (of autistic child) tried to convince me that the fries oil and the juice additives would make his autism worse but it hasn't, he can ask for more of their menu now

I always heard mcd's were good as their chips were guaranteed gluten free! I rejoiced when ds1 started eating chips as it meant there was a food we could buy when out and about (I hate making packed lunches).

I do tend to ignore anyone who talks in absolutes iykwim. Nowadays i take a very individual approach to autism and to ds1. It's hard to do that in the early years though - which is partly why I'd love to seeore done to identify subgroups.

I want a mcd's now :o

"I think you need to read mcfabes work btw for his reasoning on ppa."

Why would you assume I hadn't?

I think, but obviously can't be sure, that I've read everything that his group has published.

And, as I said, it's not that impressive.
And as no-one else is rushing to repeat the work so I don't think I'm the only one who thinks so.

I don't believe that the paper or commentary discuss diet.
The findings do cast doubt on the plausibility of such interventions but no more that that.

There is some experimental data which would cast doubt on the efficacy of dietary intervention but this is limited (although sub-groups based on clinical characteristics are the norm here).

As for my connection with ASD, I agree with you.
It doesn't matter.

But, in the spirit of openness.

I have no immediate family with ASD.
I have extended family with ASD.
I have a professional interest in a related area.
I have a recreational interest in the misuse of science.

Just a point on the gut flora vs immunology vs behaviours .... I don't really know the relevant biology, but know just enough to be able to say that they could all well interact in feedback-loop kinds of way.

So what you feed your kid may well have a close causal relationship on the nervous system, via immune modulation. The links aren't direct, and are very complex, but I think most cell biologists/ immunologists/ neurologists would now agree that they exist.

This is the special needs section, where we tend to share a lot of sensitive information- it's an area that's respected as a little less open season than the rest of the board by the majority of posters. If you're on here just to represent the Bad Science Forum or something like that I would respectfully request that you kept those discussions to another part of the board. In this part of the board we do tend to share our backgrounds. Plenty of professionals post (and are welcomed- and their help very gratefully received) - but it is usual in this section to be open about that. That's why I asked, it is unusual to exchange a lot of posts with someone in SN and not know their background or interests. I am aware anyone can post whatever they like wherever they like on an open board. This is just a polite request to be sensitive when you are posting in special needs. It's probably not the part of the board to cast doubt on parent observations for example (not saying you have done this on this thread).

As for Derrick MacFabe I mentioned him because his team is looking at gut bacteria and autism which is what this discussion is/was about. Apologies if you have read his paper, I assumed you hadn't because he explains very clearly in his publications that his team are looking at PPA because it's a metabolite produced by gut bacteria- especially those associated with antibiotic use. Natasha Campbell McBride who was mentioned earlier is a practitioner who has a lot to say about gut bacteria as well. She's a practitioner rather than researcher but I find her ideas interesting as well.

I didn't say the paper discussed diet - I said it mentioned food selectivity. My point was professionals often get funny about gfcf diets -saying how terribly unbalanced they are (tell the Japanese that!) but pay no attention to the far bigger problem of food selectivity. AFAIK there's one clinic (at GOSH) in the whole country that deals with this issue- which means a lot of parents struggling and a lot of children with poor diet. Not caused by mad parents blindly following gfcf diets- but caused by sensory issues that make eating so difficult for many children (and presumably adults) on the spectrum.

massive - if you have any links would love to follow them, have followed a few in this area, but prob not as much as I should.

We had an appointment last year with a neurologist and paediatrician. I was very interested that they started mentioning diet (I didn't, they brought it up) and we discussed what was known currently (not a lot) and what might be worth trying on account of being relatively easy to give it a go or test for and unlikely to do any harm.

Huge change from the time ds1 was diagnosed in 2002.

massive -thanks again - found this link which looks a good place to start. Sharing for anyone interested.

I have no particular problem with gfcf diets.

I don't think the evidence is that good for them but they're safe and (relatively} cheap.

And even if any improvement seen is non-specific to the intervention, it might be all that can be offered.

However, there is a danger whenever we lower the evidence barrier for an intervention.

For one we encourage expensive and improbable interventions like that linked to in the OP.

And, perhaps more seriously, it leads a community open towards more risky and implausible behaviours and beliefs.

As an aside, I appreciate your candour.
If it helps, I'm not a member of the Bad Science forum.
I try to keep an eye on a number of forums of which I have some knowledge to see if it can be of use to more people than I get to see in working week.