Is GFCF the right way for ASD DS who has no obvious bowel probs ?

[Missisdoyle]

I am in a quandary about whether to put DS, 5, on GFCF diet. He is a very fussy eater & you've guessed it, he survives on a G/C filled diet ! P'butter & j sandwiches,yoghurt,porridge,cereal & fruit are staples. He has recently started to eat cucumber,corn & carrot /potato waffles -but that's it...
I realise that this desire to eat only G/C foods could indicate a intolerance to them & possibly lead to a leaky gut.

He was born via CSection (BF solely up until 6 months) & I have since read that this can adversely affect the gut flora of the child. I, myself have had candida problems in the past, but took a probiotic when preg with him ( & did so years before he came along). He was a very colicky baby,with a lot of reflux & a terrible sleeper. I am currently trying to read up on the gut ASD connection & wonder if it would be relevant to my DS, who has regular, healthy bowel movements, no probs with wind ( although he does hiccup, after laughing a lot !). He has a bit of mild eczema, which I gather is gut related.

Apart from his sensory issues, anxiety,pragmatic speech delay, he is , thank God, a healthy, thriving boy, with bags of energy (he occasionally has his off days).He has not yet been diagnosed,I have a feeling that they will not diagnose him as he is what the meds would classify as high functioning.

I have also been reading up about the health benefits of A2 milk & Raw milk, with regards to healthy gut flora. I am extremely dubious about feeding my precious (raw milk)anything that could potentially harm him. I asked my GP , but they seem to be very against GFCf, so I again turn to my kind & knowledgable friends at Mumsnet.

Sorry for the essay !!

Apparently Home Bargains is selling big bags of epsom salts for about £2.50 at the moment, btw.

I do actually have some for me to use and will be putting some in the boys' baths. If nothing else, it seems to act as a very nice water softener!

An I've been trying to research "leaky gut" syndrome and have yet to come up with anything that isn't on a website that is ultimately marketing supplements. I want to know what "leaky gut" actually means, physiologically and have found nothing that I trust.

I think leaky gut is the theory that some people can't break down casein (milk protein) or gluten properly in the gut. Instead of breaking down into purely 'food' components, opioid peptides are produced as a by-product, which then act on the body in a similar way to other opioid drugs such as morphine and heroin.

en.wikipedia.org/wiki/Opioid_peptide
"Opioid peptides are short sequences of amino acids that bind to opioid receptors in the brain; opiates and opioids mimic the effect of these peptides. Such peptides may be produced by the body itself, for example endorphins. The effects of these peptides vary, but they all resemble those of opiates. Brain opioid peptide systems are known to play an important role in motivation, emotion, attachment behaviour, the response to stress and pain, and the control of food intake."

(My bolding above.)

The 'leaky' part is to do with the gut being damaged and inflamed by sensitivity/allergy to casein/gluten (in a similar way to external skin being damaged by eczema-triggering substances), and hence absorbing opioids more readily than a healthy gut would.

That's interesting Polter. The reason for my curiosity about this subject is that my DD had a casein allergy as a baby (failure to thrive, diagnosed by paed) and was put on a casein-free diet. On paed's advice we reintroduced casein gradually after the age of 2, which is around the time that she developed obvious anxiety and sensory issues. I have never been comfortable about the dairy thing since and have wondered whether it would be worth going dairy-free for a period to see if the anxiety improves, haven't ever done it though, partly because as with the OP, she doesn't have any obvious gut issues.

On googling opiate addiction and withdrawal, it seems that anxiety and sensory issues are associated, but that's the extent of my experience and knowledge.

It's true that there is a lack of definitive proof of a connection, but there seems to be a lot of anecdotal evidence around gfcf diets helping with ASD symptoms. I imagine it's a very difficult thing to research - finding suitable subjects in sufficient numbers, having total control over the subject's diets, objective measures of 'success', knowing how long to do the diet for, etc etc. It's probably just one of those things that won't help every ASD child, but might help some, and if you can find a way to try it whilst ensuring your child is well-nourished then why not. I doubt whether you will find a GP who recommends epsom salt baths, for example, but if they work for your child then that's all good.

Perhaps I wasn't being specific enough again. By 'leaky gut', I meant Gastrointestinal problems e.g. difficulty in absorbing nutrients, bloating, wind, bowel trouble etc. There is much scientific evidence to support a gut - psychology connection. Hence GAPS diet.

Well, I will go against most of the responses on your thread, OP, and say that a diet change could be worthwhile. But I would give careful thought to what/how you make the changes.

I have two coeliac children, so we are now a GF household, and also oat-free. Not dairy-free though, and I think the combination of GF and another restriction would be harder.

I think my DC have a pretty healthy diet. My eldest was an unbelievably fussy eater before going GF and is now an excellent eater of everything except fruit - but since he eats a wide range of vegetables, that's not a problem, and is in fact (according to our dietician) a very healthy thing - we should all have a lot more veg than fruit!

I think the key is to have a very 'natural foods' approach, rather than using a lot of processed specialist GF foods. So, lots of meat, fish, vegetables.

Personally, I think that the Paleo approach to eating is probably the healthiest for anyone. The Mark's Daily Apple website is good.

Gluten is basically a component of processed foods (bread, biscuits, cereal, cake etc.) which are just not as healthy as meals made up of natural foods.

Regarding the comment about the third world, I also thought that lack of diagnosis would have played a large role,but, that particular study was made in Cambodia. A doctor who specialised in autism observed that his patients were living in an environment full of parasites, yet autism was non existent,as well as inflammation based problems.
Apparently our in sanitised western world we are more likely to suffer from inflammation in our bodies, which in turn causes immune dysregulation. And it could be that the lack of microbes & parasites in our environment ( like those living in the third world ) are detrimental to our health & why auto immune disorders are on the rise.
The other piece about Amish people supports the previous theory. The idea is that Amish people drink raw milk & apparently have virtually no cases of autism or allergies. Apparently pasteurisation also destroys the good bacteria & natural probiotics that makes the milk easier to digest.
I am not advocating that any one should feed their DC's raw milk, I'm just passing on what I found interesting.

Yes, JonSnow', another one of the reasons I thought it would be a healthier move was to help DS broaden his narrow diet. However, the healthy swaps that I have made (Buckwheat/corn wraps for wheat, whole earth cornflakes instead of shop bought etc..) hasn't been going well ! After 2 days of just one replacement at mealtimes he says he isn't hungry & hasn't eaten much as a result.He has refused meat,fish & eggs since turning 2. It panics him even to talk about trying them.The only way I can get him to eat eggs are in pancakes. He hates veg. I do worry about it.
Good to know it has helped your family though. I was beginning to think I had dreamt all those articles up !

Apparently Apparently Apparently ....

By 'leaky gut', I meant Gastrointestinal problems e.g. difficulty in absorbing nutrients, bloating, wind, bowel trouble etc.

You said your child had none of this.

Too many apparentlys, allegedlys & could be s !!!
He doesn't have many GI problems,apart from his babyhood.
He is a very fussy eater, he does have eczema, which I gather could be a symptom of GI problems & I have asked for advice about whether GFCF could help his other ASD symptoms. I agree that I went off on a tangent, regarding parasites !!
I just meant to make the connection with the GAPS diet & healthy bacteria.( I also thought it was worth sharing !)
I wanted to help him ( here we go again) improve his speech/communication,eye contact, meltdowns, general terror of every day life & I was originally asking did anyone have experience of the diet helping these symptoms, without the DC suffering obvious GI problems ...

My desire is to improve his diet. As I've read various posts on here saying that GFCf helped their ASD DC with calming down & with broadening their diets & improving their nutrition in the long term, I thought it might be worth a try.

I just thought I would ask in case anyone had tried it.

Missisdoyle - have you seen the Tinsley House threads? Most of the posters there will have tried dietary interventions (though not always gfcf) so they are probably worth a read through and maybe post if you want to ask specific questions.
www.mumsnet.com/Talk/special_needs/1882021-Tinsley-House-Support-Thread-Part-4

Polter - thanks, yes I hadn't considered that about DD not necessarily feeling/noticing symptoms - since she does get feelings of sickness and tummy ache (which seem to be anxiety-related not 'illness' related) it's all a bit complicated!

Missisdoyle, I started the probiotic blindly because it was recommended on a local ASD facebook page I'm a member of. I didn't particularly think it through though! It was only afterwards that a friend of mine who is a nutritionist, recommended I investigate leaky gut etc and referred me to nutritionists in the USA who could oversee blood tests/supplements etc to reduce symptoms.

The reason I haven't gone any further is because, like you, I did a little test drive with gluten free products and they were all rejected. None of those hard core American nutritionists would even treat us until we had been dairy and gluten free for at least 3 months. I have a natural scepticism of anything promising to cure autism and seem to get the impression that the US is very much into a cure or at least making autistic people blend in as much as possible. Whereas I don't hold that much value in normal and don't see it particularly as a ticket to success, love or happiness. But like you, I would like my child to be generally less terrified and her ticket to happiness is almost certainly in learning to communicate effectively.

I also have some vague thoughts bouncing around in my head linked to her having reflux and an intolerance to normal formula when she was a baby. She's only just stopped reflux meds at 4 years old. But I don't know if that means anything.

Anyhow, the probiotic is Optibac. The same Facebook group are all into Arctic Sea Capsules which is a Forever Living product, and even I draw the line at that! Quite possibly, the key to all our problems is long term, effective and very time consuming therapies and well thought out techniques, not a pill.

Thanks for that MabelBee, it's kind of you to recommended that probiotic. I think that any way of getting maximum nutrition into your DC is a good step & probiotics make sense. As I said before, before my DS's were born, I took supplements & probiotics were part of that. I was satisfied with how they settled my dodgy guts. I've neglected to take them since ( I've been doing low carb & it helps a lot), but I have more confidence in giving them to DS now, after your helpful advice.

GnomePhone, I've not seen those threads, but will endeavour to give them a look. Many thanks. I have always been fascinated by nutrition & believe that it is the best preventative medicine.

DS doesn't really have Autism, but I tell the majority of people that he has it as it basically sums up all his difficulties. DS is on the GFCF diet, but only because of allergies. If I must say, I have seen a huge difference to his behaviour.

Like the Epsom Salts, I think they can't harm. So worth a punt. We also do Kindervital vitamins for children every day. I'm no expert at anything, but it makes sense to me that your body runs better when you fuel it with better nutrition. I don't know what that means in terms of diet thought. I have thought that when she is older and hopefully more able to communicate, that we can trial things like GF and she can report feeling better or worse herself. We did dairy free for 4 months with a dietician as part of our original raft of referrals, so did it properly, watching all the coded additives and e numbers on the backs of the packs, and then did a slow reintroduction in phases. And during the dairy free period she got worse. To the point of only eating toast. So I know for us that dairy isn't an issue.

Again, don't take my word for it, but I don't believe that dairy or gluten are necessary nutritionally. There are other ways to get the same vitamins. I'm more of a eat a bit of everything kind of person though. Or eat a lot. Whatever.

Mabel - just a thought about your DD's dairy thing, according to the 'theory' (and I'm not for a minute asserting that it's true) IF she also has a problem with gluten (as well as dairy) then that would potentially explain the narrowing of the diet to gluten rich foods when you withdraw dairy, as the body is still trying to get its opioid 'hit'.

Some nutritionists seem to advocate a tapering off rather than cold turkey with gfcf, there is (of course!) plenty available if you google gluten / casein withdrawal symptoms.