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

(90 Posts)
Missisdoyle Wed 06-Jan-16 14:21:11

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 !!

zzzzz Wed 06-Jan-16 14:33:05

I don't believe further restricting the diet of a child with an already restricted diet against Drs advice is likely to do anything but make you both miserable.
My own take on things is about maximising nutrition, so, if he has normal bowel movements and is active I would assume he is digesting well and could absorb supplements. So I would give him the standard recommended vitamin supplements for his age group (personally I would give Epsom Salt baths too but that's just because they DO help mine) and not do any gfcf stuff.

GnomePhone Wed 06-Jan-16 17:05:08

You could try a slow and gradual elimination of either dairy or gluten first to see if it has any effect. Dairy is the more likely culprit with eczema I believe so may be worth trying that first.

There is a tolerance 'ladder' of dairy products (you can find this by googling) with milk being the most allergenic, then yoghurts and soft cheeses, then hard cheeses, then cooked products made with milk protein such as biscuits. If he drinks milk then this could be slowly removed or replaced first, keeping protein levels up via meat/pulses etc. Then if this seems to be workable and not restricting diet too much, remove/replace products further down the ladder, keeping a diary of any changes or improvements.

Missisdoyle Wed 06-Jan-16 23:22:48

Thanks Zzzzz, yes I do actually give him Juice plus & Epsom salt baths every 3 days. I was wondering about also adding probiotics & Omega 3s. I am reluctant to give him things without consulting a health professional, but our doc seems clueless about the gut -autism link !!
Thanks GnomePhone, I did not realise that eczema was a reaction to dairy. I am going to try him with A2 milk, to see how that goes. I'm wary of giving him soya milk, as I have read that it could be detrimental to a boy's fertility, later on. He hates almond milk & I am still trying to convince him with coconut milk !
I am currently experimenting with some gf/cf version of his staples. He's not convinced though ! At teatime I swapped his wheat wrap for a GF one & he moaned that it had "yucky brown stripes" on it !! AArrghh -"they are gridle marks", I replied, through gritted teeth...blaah blaah !
I had to laugh at the thought of him drinking camel milk, though ! I actually googled " What does camel milk taste of ?" & the obvious reply was "of camel" !! Bleurrgghh...

zzzzz Thu 07-Jan-16 07:09:59

SOME eczema is a reaction to dairy. There isn't a proved gut-autism link for all autistics so your Dr may be less clueless and more sceptical, either way if he/she doesn't suit you, you probably should look for a new Dr rather than just guess yourself.
What are you attempting to "fix" with diet change?

GnomePhone Thu 07-Jan-16 10:17:27

Re milk replacements, it might be simpler to just not give milk as a drink (or with cereal) at all as it's not a necessary part of a five year old's diet. Or you could try slowly replacing some of the cow's milk (10% at first) with coconut milk, then build up to 100% if that goes well.

Eczema can of course be caused by all sorts of things, internal and external, but cow's milk is one of the most common food triggers along with eggs, soya, wheat, fish and nuts.

Missisdoyle Thu 07-Jan-16 11:10:20

I am not attempting to fix my son's autism, if that's the implication.I have got pulled up on that a few times on Mumsnet !
I would like to alleviate his anxieties, meltdowns, addiction to wheat based/casein based foods ( like many ASD kids, his comfort food is bread & butter) & most of all I would like to help him with his expressive language & conversation ( as at present, he finds the lack of it hugely frustrating).
I realise if he continues to survive on a limited diet, it could impair his health in the future.
I do not want to take risks with his health, I wish to improve it as best as I possibly can.
My doctor was simply regurgitating NHS policy on GFCF,so I would imagine if I sought advice of another NHS doc, they would reiterate that advice.
Thanks GnomeP', I will try that milk 'trick'.

zzzzz Thu 07-Jan-16 14:29:35

There was no "implication", but it does seem curious to make such drastic changes to the diet of a child you describe

who has regular, healthy bowel movements, no probs with wind

he is , thank God, a healthy, thriving boy, with bags of energy

so I was trying to understand what you were trying to achieve. If you really feel that your Dr is SO limited and just spouts propaganda rather than having any medical skill or knowledge then why see him/her?

Are you seeking to improve nutrition or to use diet as medication?

Jasonandyawegunorts Thu 07-Jan-16 16:05:20

I have got pulled up on that a few times on Mumsnet !

Probably becuase tampering and removing massive sections of a childs diet based on guess work is rather silly.

Jasonandyawegunorts Thu 07-Jan-16 16:05:36

not to mention outright dangerous.

Jasonandyawegunorts Thu 07-Jan-16 16:06:58

My doctor was simply regurgitating NHS policy on GFCF,so I would imagine if I sought advice of another NHS doc, they would reiterate that advice.

And yet if you give your child rikets or other health problems from this you will be the first one to use the service.

Missisdoyle Thu 07-Jan-16 17:10:38

Bloomin' Nora ! I was just asking for advice on how to help my son's speech problems, meltdowns, sensory problems & general terror of every day life ! Now I'm giving him rickets ! Naughty mummy ! Next time I won't bother posting for advice on Mumsnet. If I wanted to be judged in such a sneering & haughty way, I'd have consulted my in laws !!

Missisdoyle Thu 07-Jan-16 17:15:22

BTW the fore mentioned "guess work" of GFCF is backed by numerous medical studies, just not by the NHS. I am not anti NHS. I am eternally grateful to them for all that they have done for me. I did not use th words clueless, either.

Jasonandyawegunorts Thu 07-Jan-16 18:10:50

BTW the fore mentioned "guess work" of GFCF is backed by numerous medical studie

And even Jim Laidler, who did those early studies and conferences no longer believes it. He has since gone on to debunk many Autism cures.

zzzzz Thu 07-Jan-16 18:20:02

I can't imagine why you think gfcf will help speech (do you mean language or speech?)problems. I'd be interested in reading the research that you talk about because I too have a child with significant difficulties in this area.

I'm really not sure why you are so defensive about your ideas, surely they came from somewhere and you can just link without getting het up?

You must see that it is a rather odd idea? The fact that you don't think Drs in the uk will endorse the path you are taking does concern me, but I think it would be odd if it didn't. We have a medical history and practice here in the uk that is the envy of the world. that doesn't mean you are "wrong" to go gfcf just that people are bound to be a bit confusedhmm and ask for more information.

If you are genuinely interested in discussing ways of supporting children with language, sensory and anxiety difficulties you are highly unlikely to find a better site to do so on. What you can't expect is that everyone will agree with you or that they won't question you. That is how we learn and grow as parents and therapist for our children and is the main strength of this board.

There are others who favour dietary intervention, lots who supplement and those who have considerable experience helping children to talk more freely and interact more comfortably. We have parents who push academics and those who are focused on happiness, we have parents who HE, who use private and state schools, parents with children in special schools and those in ms. Some of our children go off to university and get jobs some to residential settings and some will live at home. We don't have to agree on any path, we can explore ideas and share experiences without flouncing and attacking.

MabelBee Thu 07-Jan-16 19:56:45

I'm not 100% sure, but the brief stuff I have skimmed over seems to suggest that food intolerance and deficient gut flora in people with ASD leads to leaky gut, which in turn leads to tissue inflammation in the body. Is that right? And that this inflammation affects brain tissue too, so 'correcting' the diet reduces inflammation and the brain then works more efficiently, so symptoms of ASD are reduced. And then are you thinking that disordered language is a symptom which can be affected in this way? I have no idea what I'm on about really. So not quite sure why I'm posting at all.

I did, however, notice a very obvious alertness and definite calmness when I started my daughter on probiotics. Which is along similar lines. But not at all sure about whether I would go further down that road and restrict her diet.

zzzzz Thu 07-Jan-16 20:00:04

I did, however, notice a very obvious alertness and definite calmness when I started my daughter on probiotics

This our experience of magnesium supplements (Epsom salt baths).

zzzzz Thu 07-Jan-16 20:01:06

This is blush

MabelBee Thu 07-Jan-16 20:20:25

Ooooh. What's that all about then? I've had a quick Google. How do you know how often or how much?

zzzzz Thu 07-Jan-16 20:55:40

my ds has quite a restricted diet (severe language disorder/ASD) so it may be more pronounced in him. A pot of Epsom salts only cost a £1 ish at Boots, stick half of it in a bath and see what happens. It's absorbed through the skin but benign (athletes used to soak aching muscles in it). We do it about once a week. Talk to your pharmacist. Magnesium deficiency is the norm now here in UK. I will try and find some links but not tonight....I am shattered.

Jasonandyawegunorts Fri 08-Jan-16 00:04:57

MabelBee Whatever you do stay away from Polly and Jonathan Toomey and their Autism clinic (Or autism file, or whatever it is now) stuff. They are well known con artists types who have made a lot of money with snake oil, but stay in a very grey area that is 100% legal, skewing the research and results then charging hundreds of pounds for a bottle of multi vitamins and the like. Nothing is acutally proven about leaky gut for example, but they use it as science.

Basically anything that charges you an abundent amount of money or reqiures you to scoot around actual doctors advice should send out alarm bells.

Other than that there are loads of things out there that may help with regards to deficiencies that cause autism like

Missisdoyle Fri 08-Jan-16 09:32:28

....flounces back...
It's been a tricky week, what with DS starting his second term at reception.
I apologise if you thought I was on the "attack".
I did, however, find the tone of Zzzzz's posts condescending & a touch hostile.
I am clearly no scientist, merely a mum trying to explore every avenue to improve my son's health.
I was asking for advice, not advocating a ricket inducing diet...

The article that I read was in Science,

"GFCF may help some children with autism,research suggests".

"experts have suggested that g & c derived peptides cause an immune response in kids with ASD...peptides could trigger GI symptoms & behavioural probs...

parents noted ...increases in their kidssocial behaviours, such as language production" etc
This piece was from FEb 29,2012. If you google the topic, you can find many other reputable articles on the topic.

zzzzz Fri 08-Jan-16 09:54:26

I'm sorry you found my posts condescending and hostile. shock How horrid for you to receive and for me to hear.
Generally people on this board are kind and quite gentle with each other. We all have rather more on our plates than most and try to prop each other up.

I can't do a big Google/research on your diet because I don't have time so probably am pretty useless as far as that goes. Good luck.

Missisdoyle Fri 08-Jan-16 10:06:26

BTW Zzzzz, did you know you can get big tubs of Epsom salts on Amazon. Cheaper than Boots, as far as I know.

Thank you Maybelbee, yes, perhaps if I put my case as clearly as your post,I would have got further !
That was pretty much what I meant (I too,clearly,suffer from foggy thinking !) Also gut problems, or inflammation( as Maybelbee rightly put it) ,apparently can be passed down to the child,in utero, leading to conditions such as ASD.

Apparently ASD is an epidemic only in the western world,in the third world it is scarce. The studies have suggested that inflammation is a 'disease' that only afflicts rich, westerners.
The reason could be that we lead an excessively sterilised life in west & we donot have enough healthy parasites in our system.
Sorry, I am rubbish with computers & can't do links, but here are 2 articles that support this claim,
'The New York Times',"An Immune Disorder at the Root of Autism",
'', " why does Autism continue to evade the Amish community",

I was thinking if I could reduce inflammation in my son, through his diet, then that would improve his cognitive skills, expressive language, social interaction being just 2 areas that could improve...

Missisdoyle Fri 08-Jan-16 10:27:41

MaybelBee, thanks, you mention your DC improved on probiotics.
What brand do you recommend, please ?
But you also mention that you would not go so far as to do the GFCF diet. That's interesting.
I would love to know did your DC have leaky gut symptoms before you decided to go with the probiotics?
I am merely considering the GFCf at present.
I have bought some GFCF breads, pancakes & wraps, but my son was not impressed !!
I have also read that doing GFCF can often help to broaden a child's limited diet. That also appealed. I don't want him to get stuck in a rut, but I certainly don't want him to starve & defo no rickets !!!

I am thinking now, that I will ask Paed when we see her next month ( step 2 of diagnoses route).I have since discovered 'Allergy Induced Autism' & will contact them, regarding the diet & my son's inflammation with eczema. They may be able to help.

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