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 !!

Phil there is no way to rule out placebo, regression to mean, reporting bias etc. That is not to say it isn't working for you but neither can you conclusively say it is. On the other hand if it is a placebo effect then why not make use of it.

I can say conclusively that gf/cf works for my dd. As I mentioned above, I have 'known' about times she has been given the wrong foods before I was told, due to her behaviours.

She also cannot tolerate artificial sweeteners. When she has those, she loses continence. Anecdotal, yes, because it is me talking about my dd. But absolutely factual and measurable (nothing else has ever had the same effect on her, and she has not ever had an accident otherwise since she was toilet trained. Oh, she did once, but she was ill (diarrhoea))

Gluten increases dd1's anxiety (as reported by other people, not just my observations), and also generally makes her prone to biting - not a behaviour she has ever exhibited otherwise. Again, quite conclusive, with no reporting bias.

Given that before the gf/cf diet she had little language, no pain response and no temperature recognition, and afterwards she began talking clearly, and had appropriate pain and temperature recognition and response (and a lapse in those areas when she had a diet infringement), I would say gf/cf has had far more than a placebo effect. There is also the fact that her bowel movements were unhealthy in the extreme, and cleared up post diet change (and same backwards steps with any infringement).

I did, Polter. Although there was a lot less written about it 9 years ago than now. But what I could read (on here, there were some very wise MNers around, plus a couple of links and a couple of books) convinced me it was worth a go.

As I said above, just shoving in shop bought gf replacements would not be adequate - it is great that so many are available now, but they are highly processed and full of far too much crap. As well as the shop stuff being available, it is now much easier to get flour alternatives (inc nut flours if possible) and also good milk alternatives (when dd first started the diet, the choices were soya or rice milk (both full of sugar) or a powdered form of potato!) so there is no reason to not do it yourself - much healthier. Lots more recipes too.

We totally approached it with a raised eyebrow, and thought it would be a 3 month thing at best. We did worry about how fixed dd was on certain foods. But as a lot of the info says, the fixation can be likened to an addiction, and once that is broken, the cravings are not the same. Dd accepted just about every alternative we have her, apart from anything containing soya. She wouldn't touch those, no matter how sugary or flavoured. And at one point pre-diet, she was down to eating 5 different things only.

I have never advocated rushing into gf/cf (and in fact, the Sunderland protocol is much bigger than that, with all sweeteners, flavourings (even natural) and colourings (ditto) also removed, as well as preservatives. Dd1 also could not have any citrus or apples. Not something to enter into lightly) and always suggest reading up on it. I can't do more than that - people will take from my posts what they will, and will act in the way they choose. I cannot not mention our success with dd1 and diet/biomed if I see a query - it has had such an enormous impact on her life. There is no way that the toddler she was would have grown up to take part in a sport at a national level, for eg. or play 2 musical instruments, or (in all probability) read and write. Even ABA (which as you know I also rate highly given our experiences) would not have taken her that far without the diet stuff. The diet stuff gave her the headspace to learn, the ABA taught her in the right way to be able to learn.

Panda - interested in what you're saying about continence. My 4.5 yr old DD has continence issues (bladder, not bowel) - she seems unable to 'feel' when she needs a wee, and wets herself at least a couple of times a day, often more. She also seems sometimes to not empty her bladder completely (will do a wee in the loo, then wet herself 10 mins later).

Can you tell me more about your experience of diet affecting continence? DD is already GF, by the way, due to coeliac disease.

This article popped up on FB today!

www.standard.co.uk/lifestyle/foodanddrink/cheese-triggers-the-same-part-of-the-brain-as-hard-drugs-say-scientists-a3141936.html

JonSnow, it can be a long road, toilet training.

It took dd a long time to 'get' it. She struggled with recognising when she needed to go, and ale also struggled with knowing how to relax and let go when she needed to. It was very complex for her, as her nursery stated potty training her at 2 (against my wishes) and really screwed her up. She restricted fluids so as not to need to wee, which made it very difficult to train her, as she could hold on forever (and did, due to the disastrous early attempt to train where she got really confused, and cou,d only hold on) and restrict her drinking even more. But she did get it eventually - we used behavioural rewards, and many months of patience.

The continence issues she has had have been directly related to artificial sweeteners. It happened a good year after she finally was dry in the day - we were on a day out in the summertime,mane it was hotter than expected. Dd1 actually asked for a drink, which given the years she had gone by then restricting fluids, was an amazing miracle. Unfortunately, the only thing we could buy her (she wouldn't drink water, or fizzy drinks) at that point contained artificial sweeteners, which was against her diet. Later that afternoon, she has several wee accidents, and continued to do so for 2 or 3 days. About a month later, out of curiosity, I repeated the experiment (in case it has just been one of those things) using a different sweetener-containing drink. Again she had several wee accidents over the course of a few days, and also a poo accident (had never had one of those before!). That sealed it for me, and we went back to avoiding artificial sweeteners, as per the Sunderland protocol.

Hi Missis
We went gf/cf about 9 months ago around the time DS 3 was diagnosed with ASD
We have seen some really drastic improvements in lots of areas
Concentration
Reduction in meltdowns/aggression
Sleep, particularly going to bed-DS now says "I want to go to bed, I'm tired"-this is a huge leap
He will ask to try or help himself to new foods now, a year ago his diet was becoming more and more narrow due to him only eating a few things
He is less anxious
Sensory abnormalities have improved dramatically

It was as if a storm was constantly raging in DS's brain before we went gf. He's made exponential progress over the months, I am so glad we did it

Oh and we also do the probiotic thing-we built up to extra strength (20 billion) Optibac and also give s boulardii

Bimuno powder is good for growing "good" bacteria in the gut

www.bimuno.com is website for the latter

Haven't been paying attention for past few days, sorry...
Thanks Artichokes', that's useful & great to hear that your DS is also thriving on GFCF. Can I ask if he displayed symptoms of GI upset before embarking on the diet ? I'm assuming that's why you chose the GFCF path. My OP was would it be worth doing the diet if there were no apparent signs of GI upset. I am completely confused at the moment as to what to do to best help my son, it seems like I am maybe looking in the wrong area.

Shelia Graber Emailed me...

sorry, wrong thread.

He did Missis
However, I would have done the gf/cf diet regardless of gut problems, but that was because rightly or wrongly I felt I needed to pursue it given the other difficulties DS had if there was a chance it might help, and because I had a friend whose son made dramatic progress on it. Also I felt it would do no harm. We don't need gluten in our diet after all.
GUT by Giulia Enders is a good read if you want a balanced view on how the gut affects the rest of our body/mind., it might help you decide

www.mumsnet.com/Talk/special_needs/1517988-Gluten-casein-free-diet

here's an old thread I found quite useful ages ago