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Gluten Free???

9 replies

Nattynoos · 30/10/2011 18:32

Hi all!

Ive not posted in a while so my apologies!...im still watching the threads though :-)

Im thinking of trying my DS on a gluten free diet as he is autistic and has adhd.

I would welcome all your thoughts on this and advice if it has helped anyone before i try it.

TIA

Nattynoos x

OP posts:
PipinJo · 30/10/2011 19:00

This reply has been deleted

Message withdrawn at poster's request.

dietstartstmoz · 30/10/2011 19:24

Hi nattynoos,
I was going to start a similar thread. Our Ds is 4 and has ASD. Our problem is very runny poo 4 times a day and Ds is not toilet trained and the runny poo doesn't help. If it has any difference with the ASD symptoms that would be great as well, but we're just trying to sort out the poo.
PipinJo-we have had the sunderland test done, and we couldn't understand the results at all. I phoned and spoke to someone to go through the results, they said DS was within normal limits for gluten but his dairy was high so to try dairy free for 5 weeks, if no difference after this time then go back to normal. We tried dairy free for 6 weeks and there was no difference in his poo at all. DS has also been tested for coeliac disease and was negative.
Our paed (who is great) told us the sunderland test was ripping parents off and was nonsense, and she and no other paed's ever understand the results. Anyway, despite Ds being negative for coeliac she has advised us to try gluten free or reduced to see if this helps with the awful poo situation.

We have started today, and Ds has eaten gluten free bread - as toast- and didn't refuse at all. He does eat a diet very high in carbs so I have brought lots of gluten free alternatives, and we're going to try and at least significantly reduce them, if not eliminate them completely for a while. He has also only done 1 runny poo today instead of the usual 4. i'm sure this is just a coincidence but who knows yet?
Anyone got any idea how long it should take (if Gf is going to make any difference to the awful poo?)
Nattynoos-is it just the ASD and ADHS you are trying to help?

bochead · 30/10/2011 20:51

Ok here's just a few thoughts - do note it's only my opinion.

ANYONE who removes a major food group from the standard UK diet of their growing child without some kind of proper ongoing medical supervision and preferrably a clinical dietician overseeing the new dietry regime risks doing more harm than good long term.

It's not just a question of removing the offending item from a child's diet but of ensuring that nutrients typically contained in the foods no longer on the menu are still in the child's diet. e.g Vegans often suffer B12 defiency, not having dairy means my son's diet has to contain other foods that contain all the fat soluble vits (mostly B's) that a typical milk drinker would be getting as a matter of course as well as the obvious calcium. A hell of lot of cereals and bread etc in this country is fortified with iron and vitamins. You need to be sure the new foods contain these trace nutrients in the same amounts.

Having said all that DS would be dead if we hadn't discovered what dairy does to him as a baby so I'm sure diet does have a massive effect for SOME individuals.

The GAPS diet is an interesting dietry plan that many have found helpful - the book is reasonably priced and it's gluten free and might give you some ideas of the kinds of foods that boost cognitive function.

If you've had issues understanding the Sunderland protocol then you might find the hair testing people foresight helpful.

www.foresight-preconception.org.uk/forms.aspx I use them periodically as non-invasive way of checking my lad has no deficiencies, as the GP only seems to test for iron and calcium and I've noted for instance a link between my son's magnesium levels and his anxiety/adhd type behavior. My lad was under the hospital from 0-4 so nowadays it's just a maintenance check for me to ensure he's not running low on any obscure vitamin, and to help me tweak (not totally change!) his diet occasionally. I don't think it shows intolerances but it'll highlight if your child is deficient in anything that affects cognition.

As far as I understand it dairy intolerance can be identified within a month of stopping, whereas it takes a minimum of 6 months for the removal of gluten to show in a child's behavior, bowels etc.

I'm currently researching pro-biotics for helping the bowel, as the obvious - natural yoghurt is a no-go for my lad. They do seem to help but I get the feeling I haven't quite found the right brand of dairy-free supplement yet iykwim. The differents brands seem to vary a lot in quality.

This might be tmi but bananas and eggs help solidfy very runny poo. My family are big fruit and veg eaters so have learned this trick. A boiled egg for brekkie and a banana for mid-morning snack might help a little (not pretending it'll be a cure, just that it might help a little).

High quality mercury-free fish oils have been clinically proved to help cognitively (granny and her spoonful of codliver oil had a point), and several people on this board seem to like a supplement called behavior balance. Personally I've been suprised by how helpful magnesium supplemets and epsom baths have been in helping my lad sleep, but it took 3 months to see the improvement.

auntevil · 31/10/2011 10:31

My NT DS was put on a gluten trial by the dietician to try to firm up stools and reduce the number. he was already dx as lactose intolerance, which reduced 7 times plus a day to 4. We did gluten and lactose free for 3 weeks. It was a revelation. You can be intolerant to gluten/barley etc without being coeliac - or rather testing positive for coeliacs (DS was tested by biopsy for this - and negative). After the 3 weeks trial of roughly 1 poo a day - and only 2 accidents in 3 weeks at school - he went back to his normal diet and soiled 3 times on the first day! and pretty continuously since.
So i suppose my suggestion is to do a food/stool diary for a couple of weeks on normal diet. Then do a very limited 2/3 week gluten free and keep the food stool diary. Don't keep the diet going for any longer as you do not want to cause potential harm. If that makes a difference, take the diet sheets to drs and ask for help.

dietstartstmoz · 31/10/2011 11:18

Interesting thread! - Auntevil-that's very interesting about your DS. I don't think any health professional is taking Ds's awful poo seriously as he has tested negative for coeliac disease, and they're just putting it down as another autism trait, but he has never had constipation-quite the opposite. We will definately give it a go for a few weeks, and see what happens. We have tried keeping a food/poo diary and there really is no correlation. DS did only do 1 poo yesterday, and 1 horrible one this morning before school so we will see later how many he has had today. We have been offered an anti- Diarrhoea medicine but we don't want to try this just yet, we will try the gluten free first.
Bochead-we have the GAPS diet book and it's very interesting, but I don't think we could follow it to the letter as DS only eats a limited number of things anyway, and I think he would eat virtually nothing if we followed that to the letter. The problem we have is getting someone in the NHS to take Ds's poo problems seriously as he has tested negative for coeliac disease and they just dismiss is as an autistic thing that we have to get on with. Anyway our paed has advised us to try cutting out gluten so that's what we will do. I have tried various brands of omega 3 on both boys -ASD and NT and they don't like any of them and now refuse to take them. Can you give me some more info on magnesium supplements and why you started using them? Ds doesn't do eggs, but I perservere with the fruit, but obviously not too much.
Nattynoos-any more thoughts on your DS? Has your Dr advised you on this?

IndigoBell · 31/10/2011 16:48

Gluten free has done wonders for my 2.

You are not cutting out any nutrients at all by cutting out gluten - it is not something your body needs. There is nothing healthy at all in gluten.

Read the GAPS diet for more info about going gluten free.

But I 100% recommend it.

Straight away DS said 'I no longer have a sore tummy', and DD refuses to believe it helps - but she is so much more able to learn since going gluten free.

Research 'leaky gut' for more info.

MangoMonster · 31/10/2011 19:33

Can you see a dietician on nhs? Thinking of going gluten free with DS as he is always bloated and windy.

silverfrog · 31/10/2011 20:43

you can see a dietician on the nhs, but ime they have not had any clue whatsoever about ASD gut issues.

I saw one (the same one, twice - for dd1 (ASD) and dd2 (dairy intolerance). was not any use for either of them.

with dd1, she told me that gf/cf diet was not proven (fair enough) but then would not listen when I tried to explain the diferences it had made for dd1 - real, concrete differences. just kept repeating 'some parents do claim they see a difference'. I even offered a trial with dd1, so she coudl see the difference, but she was not interested.

with dd2, who was FTT as a baby and so I had to see her again, she was equally hopeless. I ran out of room on the diet sheet to record all the food dd2 ate over a 3 day period (dd2 ate liek a horse, but at 16 months only weighed 16lb - she was nearly 8lb when born, so had clearly not put on weight satisfactorily) - all good, homecooked food with a lot of calories (but absent gluten and dairy as I wasn't taking any chances after dd1). she lectured me continuously on how dd2 needed dairy (I was still bf her) and how she needed dairy for calories (note: she wasnt concerned about calcium levels, just calories) - ignoring the avocado, banana, breastmilk, coconut oil, sweet potatoes, oh heavens - just about every calorific food known to man apart form dairy Hmm

ime, dieticians are quite good at telling you about balanced diets. but not so good about accepting that sometimes restricting some foods might be the way to go.

and agree with Indigo - gluten is not a necessary food group. and the fact that bread and cereals are fortified os not a good reason to eat them - those vitamins and minerals can be found in other foods, naturally.

dd1's diet has widened unbelivably since going gf/cf - not immediately, but slowly over time. last month she wolfed down salmon fillet, new potatoes and broccoli as part of the potato trial here on MN - I could not believe my eyes. when she was 2, she ate only gluten and casein containing foods. at one point she stopped eating altogether (thankfully shortlived). it has been a battle, but gf/cf has helped her enormously.

MangoMonster · 31/10/2011 20:51

Thanks silverfrog DS is mad on gluten, I'm sure that's what is causing his bloated belly.

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