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 !!

Intriguing!

You mention 'western diets' and Amish people - Japan has a similar incidence of autism and given a lot of autism is genetic it is perhaps not surprising that a genetically distinct group (Amish) with a historically low incidence of reported autism continue to display this trend. Though I think identification is probably the main reason for difference in reported incidence around the world.

You seem quite quick to dismiss NHS evidence; where research is done into treatments this is often carried out by a team of 6 to 10 researchers who systematically research all available over the course of six to nine months. They consider only high quality research lacking in bias. NHS evidence is amongst the best in the world though it is hard for GPs to keep up to date with all developments.

I am just trying to find something to alleviate my ds's anxiety etc. NHS, I think, are wonderful, but with my DS's current experience, we feel like we are not getting anywhere. My GP raised his eyebrows & told me "he looks fine ", when I relayed how ED Psych, nursery & school had used the term HFA ,when describing him -this was when I went to get a referral letter. I know we are not alone in being on a long waiting list,but 10 months down the line we are still waiting for SALT & OT. It's just so frustrating for all of us. I have asked my GP for advice, help etc, but as none is imminent, I thought that I could do something to help DS in short term. I have great admiration for doctors, but I think it important to investigate every avenue, as I realise time is of the essense. I will seek advicee of another GP. We are new to area , so hopefully I will get a more helpful one next time.

I can see that most messages on here seem dubious of GFCF, so that has also made me think it an unwise choice.

Wouldn't it be better to get a load of books, for example "The child out of sync", and educate yourself on what you can actaully do to help him, Putting routines and things in place and so on.

Instead of rushing in to changing his diet.

It's strange that your first step is this.

I can see that most messages on here seem dubious of GFCF, so that has also made me think it an unwise choice.

If you don't mind me saying, you are going about this the wrong way. You are looking for a way to magically get rid of his autism. You'll never do this.

You need to learn about it, and find strategies that work which will all go towards managing his anxiety and sensory issues.

Ah, I see now that you are still waiting for referrals. As said above, you really do need strategies in place. This mincing about with gluten should be secondary. SALT has been slow going for us - tiny, tiny steps forward. But OT has been amazing, huge leaps forward! I learned early on that waiting for referrals was a big old waste of time. A year we waited for SALT and then 4 measly, half arsed sessions. We use DLA money now to fund all assessments and weekly therapies privately. If you can do that, I highly suggest that you do. I know that's not an option for everyone though.

I am honestly not trying to rid him of his autism ! I would not wish to change his personality - to me he is perfect , its just that he finds every day life so troubling. My dad is on the spectrum (undiagnosed) , & my nephew. It is not something that I want to cure. We are currently funding a SALT to come into DS's school x 2 times a month , when we can afford it. This has really helped DS & us to help him. Its really the anxiety I want to help him with. I have just started reading 'Neurotribes'. I will forget about the diet, now !

Thanks, I will look up those books, Poltergoose & Jason'. I also have just finished a Webster Stratten course at my CC. It has helped abit, with routines. Some of it unsuitable for a neuro diverse child, though e.g ignoring a meltdown !!!

I am not sure if the ladies that ran the course grasped the difference between a meltdown & a tantrum. When I asked them what should I do when DS has one, they said "we'll cover that next time " !!

He also has 5 hours a week one on one with a TA, which is helping. She is wonderful with him.

As a general dietary supplement, have you considered Marigold Engevita Nutritional Yeast Flakes? there are two types, one for vegans has added B12 too.
Nutritional Information per 100g:
Energy 1500kJ/357kcal, Protein 45g, Carbohydrates 33g (of which sugars 1g), Fat 5g (of which saturates 2.5g), Dietary Fibre 20g, Sodium 1g,
, Phosphorus 1200mg, Magnesium 180mg, Iron 4.5mg, Thiamin (Vitamin B1) 15mg, Riboflavin (vitamin B2) 25mg, Niacin (Nicotinic Acid) 150mg, Pyridoxine HCl (Vitamin B6) 1.8mg, Folic Acid 23pg, pantothenic acid 1.3mg .

There is another aspect of gluten which no-one's mentioned so far, jnnp.bmj.com/content/74/9/1221.full

If anyone else is interested in trying GFCF, there's a book written by Luke Jackson available in pdf form online, search around A-User-Guide-to-the-GfCf-Diet-For-Autism-Asperger-Syndrome-and-AdHd-1(2).pdf
Luke Jackson has AS, he is a published author about living with AS and in his family of 7 siblings, five are on the spectrum.

I've not read it so have no bias But I remember the documentary made about the family and she said GFCF worked for some of her kids, but not all.

Contents
Foreword by Marilyn Le Breton 9
Acknowledgements 13
1 The Autistic Spectrum and the Diet
by Jacqui Jackson 15
2 Introduction to Moi 17
3 The Diet in a Nutshell 21
A bit of basic biology
Gluten and Casein
Foods to avoid
Monosodium glutamate and aspartame
4 So What’s in It for Me?
(Or Your Child of Course!) 29
Is it really worth the bother?
What changes?
5 Starting Out – The Journey Begins 35
First things first – clearing the decks
Does everyone have to do it?
How and when?
Withdrawals – the storm before the calm
Coping with withdrawals – a few helpful hints
Helpful hints for all
Tips for parents of smaller or less able autistic kids
For those with AS or parents of kids with AS
Tips for parents of AD/HD kids
6 Getting into the Diet – The Fog Begins
to Lift 51
And now the good bit: the storm passes
Routine and change
Sound sensitivities
Eye contact and facial expressions
Textures and sensitivities
Taste and smell
7 Accidents Will Happen! Watch Out
for Icebergs 63
8 A Few Added Extras – Sailing
into Foreign Ports! 69
Other intolerances
Candida
The Feingold diet
9 Frequently Asked Questions 75
Epilogue 79
Appendices
1 IMPLEMENTING THE DIET – A WORD FROM MUM 83
2 RECIPES 89
3 A WEEK IN THE LIFE – OUR FOOD DIARY 121
4 PACKED LUNCHES 131
5 DOS AND DON’TS OF THE DIET 135
6 PRESCRIPTION LIST FOR UK USERS 139
7 UK SUPPLIERS 145
8 NORTH AMERICAN SUPPLIERS 153
9 USEFUL INFORMATION AND WEBSITES 161
10 FURTHER READING 165
AN EXTRA NOTE… 167
LIST OF ILLUSTRATIONS 169

Missisdoyle re anxiety, try and be more observant than usual and identify the triggers for his anxiety. Is it for a few examples transitions, loud noises, touch, the unexpected, strangers, crowds, dogs, birds, vehicles on tickover. The more triggers you can identify, the more of the general overwhelm you can unpick, the more strategies you can put into place to help him cope. It's a long process, there are no overnight results, but keep at it slowly and steadily and you will see change. I'm over 20 years down the road you're on and I'm still trying new things and still seeing dd able to cope much better in a lot of situations.

Thanks so much, I really appreciate your knowledge & advice on this. My head is buzzing at the mo. I am worried about going to see Paed in feb. Step 2 to diagnosis, or not. My DS is highly intelligent & able I many areas ( but is obviously very behind in others). I wonder if he will get a diagnosis. Its all so confusing. WE are blessed that he went to an excellent nursery & school, now, with dedicated,talented & kind staff.

Good Lord, that all kicked off a bit, didn't it?

OP, if you think God/cf might be worth a go, then do read up on it. It had enormous benefits for my dd, and was the single most important thing we have done for her. Without changing her diet, she would not be where she is today.

We changed her diet when she was 2, after a lot of research. Dd1 fitted the checklist of stmptoms pointing to gf/cf issues, and so we thought it worth a trial. Within a month her meltdowns had drastically reduced, she had started to have appropriate pain and temperature responses, her speech became clearer, and her social exchanges became more consistent and appropriate. She has gone from strength to strength since then. We did have her tested by Sunderland (now ESPA, I believe), which showed a strong indication that she was having difficulty with gluten and casein. I used to be able to tell when dd1 had had a diet infringement due to the deterioration of her behaviour, and the increase in her anxiety (at one time she was at a school incapable of sticking to her diet properly despite me sending in food for her, who also neglected to tell me if she had had gluten or casein. I always knew)

As long as it is approached carefully, there is no reason not to trial a gf/cf diet. Gluten is not a necessary foodgroup. I would caution against just replacing standard foods with gluten free shop bought alternatives, and they are mostly full of rubbish. But planning a diet around a gluten free approach, ensuring a balanced diet, is not harmful. Dairy free is trickier, in health terms, but possible too.

Just read those fact files, PolterGoose. The Bilateral Integration page will be of great help, thanks.
Blankmind, thanks for that info. I have never heard of that before. It's interesting to see that there is a skin/gut connection. My dad, who is on the spectrum, has very sensitive, allergic skin. He has a pretty identical diet to my DS, actually ! Perhaps, subconsciously, that's why I thought GFCF could help my DS.

'Kicked off a bit !! ' - I know ! Ha ! Pandas' do you mean me getting the wrong end of the stick !! I was just being honest. I didn't mean to upset anyone, honestly .
I will read up a bit more TBH, on GFCF. Good to hear your DD is thriving with the diet changes ,though & I will look up ESPA, also, thanks. for that.

You certainly didn't upset me, Missis. Honestly, I can't praise diet and biomed interventions enough. They completely changed dd1's life for the better.

I'm happy to hear that your course of action has improved ur DD's health so well, Pandas'. It's refreshing to hear something proactive that has worked. I don't think we should always just slavishly follow NHS advice. I think just sometimes we can borrow from other cultures & traditions, to improve & broaden our own experience. E.g. mindfulness is something that can now be prescribed by NHS, but 10 yrs ago it would have been considered as something that 'hippies' did !

Oh brilliant. So this thread is entirely inconclusive! I know it's not scientific evidence but anecdotal evidence is still convincing.

Isn't that often the way, though, (inconclusivity) what works for one doesn't work for another

Anecdotal 'evidence' convinces a lot of people but is not evidence at all and is completely biased. You can't use anecdotal statements to say one way or the other about a treatment effect. Having said that an lots of mainstream medical treatments are based on little more that this (and subsequent research has found some to be harmful).

Anecdotally, my anxiety lessens when I go GF.
When I start eating it again it takes a few weeks to build up to peak anxiety levels again, so it has taken a while to work out that gluten may be exacerbating it.
Of course there may be something else that's helped as well, I've stopped eating sugar as well.
We did try GF with ds for a few weeks, but it made no difference behaviourally.