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Anyone tried the no dairy, no wheat diet for their ASD DC ?

12 replies

Missisdoyle · 11/11/2015 11:11

I've just been google searching about how to go about this diet. It seems to be a good idea to have DS tested for food intolerance first, to identify the culprit/s. Has anyone had experience of how to embark on such a diet, or do you think it's a bad idea ? I,m in 2 minds. I also have no idea how I could sell it to my nearly 5 yr old ( as yet undiagnosed HFA) DS, who will only eat bread, yoghurt & milk !! What do you think ??!

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PhilPhilConnors · 11/11/2015 11:24

We tried gluten free for a few months, after we were told that all dc with ASD can be cured by going GF - leaky gut etc.
It made no difference for us at all.
Ds doesn't have a limited diet but we are reluctant to mess around because he can be very controlling about food, decides he's not going to eat, so we are quite wary about possibly making food an issue.
I'm not sure I would do it if it meant cutting out the only food he would eat.

Missisdoyle · 11/11/2015 12:40

Thanks PhilPhil', that's what's been holding me back. I don't want to him to become even more fussy, upset etc over food( he has recently included the occasional cucumber slice in his diet -huge progress for him). I was looking on 'My Aspergers Child' & the general consensus was that the DC needed to be on diet for at least 1 year, for it to be effective. Incidentally, how did you go about it ?

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ArtichokeHeartsAppleCarts · 11/11/2015 17:21

If you google "sunderland protocol" that will give you lots of info.

You're meant to cut out casein/dairy first

DS3 was very selective about what he ate before we went on the gf/cf diet. He still is but will occassionally try new foods of his own accord, it's been fine. Well worth it for us. He had gut problems which I believe were negatively affecting his behaviour and immunity

Probiotics are a must too IMO-starting with say a 5 billion one and building up to 20 billion-optibac extra strength are very good. You can mix them in a cold drink at breakfast or sprinkle onto cold food if you're sure it will be eaten. Heat destroys the bacteria so can't put in hot drinks. They are pretty tasteless so palateable

I checked everything in the cupboards/fridge for anything with wheat, barley, rye, spelt etc in and chucked it out. Then found alternatives for the foods DS eats. Warburtons do a v good gluten free bread, genius is good too. Doves Barn make good gf pasta. The free from section in the supermarket is good.

For us DS was struggling so much (crippled by anxiety, almost constantly lashing out, huge sensory issues etc) we felt we had nothing to lose and it was a drug free safe thing to do in our minds. Our local friend also saw remarkable improvements in her son on the diet/with probiotics.

DS has made some phenomenal leaps since the introduction of the diet/probiotics. But I am aware it doesn't help everyone, and that we introduced other strategies at a similar time which may have helped things too.

HTH

ArtichokeHeartsAppleCarts · 11/11/2015 17:34

Lots of gastroenterologists are coming around to the idea of leaky gut being 'real' I am told, and recognising the link particularly between sensory issues and gf/cf diet. I didn't do it with the intention of "curing" DS of autism, I don't think he needs curing of anything, but I did hope it would help with difficulties he was having and that were obviously very upsetting for him. It seems to have done just that

We also give epsom salt/magnesium baths twice a week and daily multivitamins (animal parade)

Fourarmsv2 · 11/11/2015 21:28

DS2 would have nothing left to eat :(

I'd love to improve his diet, now I'm eating a healthy HFLC diet I feel doubly terrible about theirs!

Missisdoyle · 11/11/2015 23:04

Thanks Artichoke, for info. I admire your gung ho approach, with chucking out all the offending foods. I am scared that my DS will go on hunger strike if I change his diet, being super fussy. He only eats a particular kind of bread etc( he is already under a lot of stress with starting school in Sept)& I don't want to aggravate him further. Apologies for the amount of questions, in advance, but ... !Can I ask if you did a food sensitivity test first ? Did you carry out this diet through a GP ? What do you give him instead of milk, soya or something else ? Wonderful to hear your DS is progressing so well on the diet, it sounds like you haven't cut any corners. Do u give him stuff like soya yoghurt, soya milkshake, or is that too processed ? Many thanks & sorry ,again for the grilling !

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ArtichokeHeartsAppleCarts · 12/11/2015 14:24

Ask away, it's fine Smile

We didn't do a food sensitivity test first I just decided to do it. We did see a paediatician several months into the diet about intolerances. He said they can't reliably test for intolerances only allergies, and that cutting one thing out at a time was the best way to see if it was causing problems. You used to be able to send frozen urine samples to the university of Sunderland and they would check for peptides I think indicating sensitivities ( for £60 ) but I don't know how to go about this-someone else might know?

I knew DS was dairy intolerant as whenever he had a tiny bit it upset him. Gluten I guessed as even without dairy his poos smelled wrong, v acidic smelling and unhealthy looking (I used to work in colorectal surgery so had many previous dealings with poo Grin )

I didn't go through the GP. Ours know very little about ASD/gut problems particularly in children with ASD, as far as I can tell. I have mentioned probiotics to them and they do not really have a view on them, interestingly though at the request of a friend I accompanied him to his child's ASD assessment and the community paediatrician recommended considering probiotics so they're becoming more recognised as having a place and "mainstream" I think. In the Czech Republic they give them to children alongside antibiotics to combat the negative effect ABs have on gut flora.

You could ask a nutritionist/dietician to advise you, they could give you ideas on doing things slowly etc.

DS hasn't had milk at all since I gave up breastfeeding at 15 months. DS isn't a yoghurt man, and i think almond milk is regarded as being gentler on the gut, but my friend's son is fine with soya yoghurts etc so I would say they'd be fine as long as your DS will eat them and they don't upset his tummy. People who do the GAPS diet wouldn't allow soya but full GAPS wasn't an option for us due to DS's limited diet, and other parents I've chatted to hold the view that cutting out gluten and dairy alone has been enough to help their children. You could try putting a little bit of almond milk in with your DS's usual milk then slowly increasing the ratio.

Does your DS have any gut problems at all? Are school supporting your DS well?

I decided it didn't matter what DS ate to start with as long as it was gf/cf something, then I'd work on getting more healthy as time went on. His appetite is much better now he's been gf/cf for 7 months or so.

I try to put different foods on the table/within his general reach and just hope he will try them-occassionally he will.

If you don't mind being stealthy you could transfer gf bread into your usual packet (making sure all crumbs/traces from usual loaf are out) and see what happens. I cut the crusts off and toast ours which makes it taste very similar to ordinary bread.

Oops I appear to have written an essay Blush

You could always just try probiotics on their own first-see if they help-before changing diet

Missisdoyle · 12/11/2015 23:50

Artichoke, thanks so much for all your advice, it is invaluable & you have given me lots of good ideas. I am new to this & there seems to be a spectrum of treatments for ASD, all of which have their own critics & devotees. I just figure anything is worth a shot, to help my very anxious 4 yr old & to improve his speech & social discourse. I,like yourself have no desire to cure him of his autism/ unique nature, I simply want to alleviate his stresses & problems.
You mentioned that your DS had an upset stomach, relating to dairy consumption. My DS usually has loose poos & a sour smelling breath. He was a very refluxy baby & still hiccups a lot. He has had anxiety related diarrhoea since starting school, poor love.
School are doing what they can. He has 5 hrs a week 1/1 time with a teaching assistant. He has recently had a visit from a communication specialist, so the school are putting her recommendations in place. We are funding a SALT, who comes into school for 1 hr/ 2 times a month,to help with his communication & ( SALT says he has SPD)motor skills.We are waiting on follow up app' with Paed, Nhs SALT, etc.
You have inspired me to make an app with my GP, now to ask if they have any info on such diets.
Thanks again, I really appreciate your generous & practical info & really glad ur DS is thriving !

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ArtichokeHeartsAppleCarts · 13/11/2015 22:30

m/Talk/special_needs/1153261-Gluten-Casein-Free-Diet-for-ASD

Link to old thread with sunderland testing info etc

GUT by ? Giulia Enders is a balanced "chatty" book if you want a bit more info about gut/immunity etc to go on/help you decide what might help diet wise

I'm glad to hear school are doing what they can to help, and I hope things get easier for you and your son soon Flowers You're obviously doing heaps already to help him Smile

ArtichokeHeartsAppleCarts · 13/11/2015 22:42

www.espa-research.org.uk/onlineresearch.html

Here is page with link to Sunderland protocol on-I've found it the most comprehensive and helpful guide to biomedical interventions. I found it a while after starting the gf/cf diet and had pieced together bits in it myself haphazardly from online searching. wished I'd found it sooner as there's lots in there to consider

Missisdoyle · 15/11/2015 15:24

Thanks again, Artichokes, it was very kind of you to give me all of that info.xx

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