Gluten free diets

[claw3]

just saw this on another thread, but didnt want to hijack.

What are the benefits?

and why are these diets used?

I have googled and it states that diets can improve behaviour, what kind of behaviour are we talking about?

Hi claw3.

THe best book you can get abut this is by Marilyn Le Breton - called Diets, Intervention and Autism (or similar)

it explains everything

she ahs a website, too, I htink, but it is subscription (google AllergyInduced Autism, sorry can't remeber the web address)

Basically, the hypothesis is that lots of ASD children and adults cannot break down either/both gluten and casein (the protein found incow's milk). THe incomplete breakdown of these products leaves the person with opiate-like substnces as a by-product of the digestion.

This can be tested for using the SUnderland test. Used to be the Autism Research Unit at Sunderland, now called something else, I believe. Google Paul Shattock, and it might throw up what they arenow (sorry, no links as still on my phone here)

Anyway, the opiates obscure lots of things, and unsurprisingly, peope who have this issue tend to be "addicted" to gluten/dairy foods.

dd1 is both gluten and casein free, and has been for the last 3 years.

The result have been amazing, both physiclly and emotionally.

Physically, she now at least produces proper poos, instead of runny, nasty, toxic substances that docs often refer to as "toddler diaorrhea" (how do you spell that?!). She has less bloating (and I think associated pain, but not something that she knows to tell meabout, iyswim) and isin better health overall.

Emotionally/socially the results have been startlign ot say the least. shortly after she went gf, she started talking properly - actual meaningful interaction, rather than pure echolalia she used before.she now has anormal pain response - both inbeing able to recognise pain (before, she could hurt herself quitebadly andnot notice) and in being able to tell me about it (and more crucially, exactly where is hurting)

dd1 is less anxious as well. on gluten/dairy (sadly we still have the occasional infringement - the stuff is bunged in everywhere!) she is very stressed, permanently, and paces, hand wrings, needs constant reassurance etc.

she stims less when gf/cf too.

crucially, the diet as a whole is really no gluten, no dairy, no sweetners/colourings/flavourings and no MSG.

basically, only real food, I guess. that's where life gets hard, because so many foods have things added as extra - eg even Kelloggs crnflakes have gluten in them (via barley malt added for flavouring!)

gf/cf has been oneof the best and most important things we have done for dd1 - it means she has lost the "otherworld fog" she used ot go around in (due to the opiate highs/lows) and is aware of her surroundings, meaning she is at least ready and able to learn.

hth, and if you have any questions,do ask!

Thanks Silver really helpful. So there is an actual test that can be done?

Ds soils himself and despite his extremely limited diet and only needing to go about once every 3/4 days, its really 'runny', when he should be constipated. I was wondering whether it might help with the soiling.

He could also do with as much help as possible, when it comes to emotionally, socially and anxiety thats for sure.

Only problem is his entire diet consist of bread, cereal, ice cream, yogurt (occasionally) chocolate spread and chocolate. If i took away all the gluten, there would be nothing left.

Yes, there is a test. It's a urine same, sent off to sunderland, along with abig questionnaire on loo habits/poo consistency etc - lovely!

If your ds' diet is made up completely of gluten/dairy products then he could well be having issues. Severe self-restricting in that way can be indicative. It is a difficult leap of faith changing the diet, marilyn's book goes into more detail on that as I think one of her sons was very addicted.

I was reasonably fortunate, in that dd1 accepted the changes we imposed. I found close substitutes for most of her favourites, going on flavour or texture depending on what thought she was reliant on. So weetabix was replaced with rice porridge - same consistency, with same fruit pot added, and raisins to distract her (it worked!) Over the years I have gradually got her onto cornflakes and toast...

Pasta was a big issue here, but again there are some good alternatives available. I got one the same shape as she had been used to, which helped a lot.

Dd1 will seek out gluten, but not in a particularly determined way. She seeks out favouring and sugar more.

Your ds could still be.constipated - he could have a blockage or impacting, which land that any poo has to be runny to get through? That can be quite common, I think. It could also be contributing to him not realising when he needs to go, as he might be feeling the urge a lot of the time but not be able to go, and so he has got confused over the sensations?

Phew good a urine sample, i was afraid you would say a blood test, will definitely ask for the test as what you are saying makes perfect sense and would explain a lot.

Ds is extremely resistant to even the smallest change in his diet and it would be a uphill struggle, but would be worth a try if test proves positive. Didnt want to put him through the upheaval on a maybe iyswim.

Could GP perform the test? I do have appointments with feeding clinic etc next month.

He doesnt show signs of constipation ie stomach ache etc, but then he doesnt show signs of many things, as you say knowing where is hurting is a problem for him too, he often complains of pains in his legs (i thought hypermobility).

He seems to have limited sensation around needing to go, he knows he needs to go when 'it starts to pop out' he then rushes to the toilet trying to hold it in (not much success as it is runny) always results in varying amounts in his trousers depending on how quickly he realises and gets to the loo.

As you say, if he is constipated, he might have the urge all the time and be confused. Makes a lot sense.

All this talk of poo, we have no shame!

TO not likely to back you up on this. Sunderland test is still experimental, and if gp approves it, you could be entitled to claim gf products on prescription. If you are going to try this, gp and feeding clinic might end up regarding you as a loon.

I had huge grief when keeping dd2 gf and cf when I was weaning her. (siblings likely to have increased chances of gluten overload, leading to allergy induced autism - gluten overload can be a trigger). Dd2 was failure to thrive, and under care of paed. They accused me of keeping her on a low fat diet as she was dairy free, and signed her off as they couldn't deal with me while I was insisting on faddy diets (conveniently ignored suspicious test results, and also the fact that she ate like a horse, ate things like banana, avocado had coconut milk in everything like rice, had sweet potatoes in curries etc - all highly calorie! Plus she was breast fed still, which in turn has higher calories than cows milk...

I did think about your ds' food issues - only you can tell whether trying it would be worth it. Some people take the harsh option and withdraw everything instantly. Very hard shortterm, as there is the very real fear that the child will stop eating. Terrifying, and I've been there with dd1 at times.

Or you can try slow transfer, but then your ds could just refuse non-gluten foods and hold out for the ones that give him the high he is seeking (if he is indeed affected) . It can take up to 4 weeks to start to see if the diet is working, and shortterm things get worse as they go through withdrawal and it must be hell for them.

What you describe poo wise could well be severe constitution (agree at the things we talk about - so highbrow ) ask around on children's health, or on here, there are loads of people who have been through it!

I have a poo section to fill in in dd1's school communication book - now that is bizarre . But seriously, the link between digestive health and overall health should not be underestimated.

Oh im already regarded as a loon! feeding clinic might be a good place to ask about it, they seem a lot more understanding of ds's difficulties. GP is useless at the best of times.

Ds has so much going on at the moment, feeding clinic, weekly CAMHS therapy, school not understanding etc, etc and im pretty busy what with statement, DLA tribunals etc in the grander scheme of things, probably not the best time to try changing his diet. But definitely something worth trying once things are a bit calmer.

If it is responsible, it could improve things for ds.

Hi Claw
I read about GF diet and decided to give it a go for DS. Within a week, all stims had disappeared. I substituted cows milk for goats milk and met with dietician to check his diet was balanced. Honestly, what a difference. GF foodstuffs are fairly easy to find now-all the main supermarkets do typical kiddy food with a gf version eg fish fingers, sausages
I would def recommend it. I started it before I knew about the people at Sunderland so no formal tests have been done. I do believe as Silverfrog says that it acts like an opiate and my boy used to get the tell tale scarlet cheeks indicating an allergy. Let us know how you get on and feel free to ask any questions!

Thanks waiting, ds doesnt eat any of the kiddy foods. His diet is literally honey hoops (no milk) for breakfast, chocolate spread sandwich and plain crisps for lunch, chocolate spread sandwich and plain crisps for dinner and ice cream, occasionally a yogurt, skinny chips and if im very lucky a few grapes, apple or pear (he hasnt eaten fruit for about 6 months now, it goes in and out of favour)

So removing gluten would be a real big deal. If none of the above is on offer, he just stops eating and it doesnt seem to bother him.

If i try to introduce a tiny bit of new food that day, he just wont eat anything for the rest of the day.

All other food, but what is above has 'worms' in it and must be avoided at all costs. He also has a food phobia and is literally scared of any food that is not above. Making changes is going to be real hard.

plain crisps are fine.
No gluten in them.
Would he notice if you swapped the bread for GF bread?

Waiting, i have tried to swap white bread for brown in the past, this was unsuccessful, although the swap was more obvious. I could give the bread a try, its a start isnt it.

You could try it. I use the white gluten free bread for DS and he loves it. Better toasted though

PS no idea though if choc spread has gluten in it. It should say on the jar?

chocolate spread - sugar, vegtable oil,hazelnuts, fat reduced cocoa,skimmed milk powder?, whey powder?, emulsfier (soy lecithin) vanillin

yes that all looks fine to me
So he could still have his choc spread sandwichs!

Waiting, i think whey powder contains casein?

Would it be ok, to cut out gluten but not casein?

How about milk powder?

Forgot to say thanks for your help and advice, must dash got to pick up ds.

If you are going to try swapping the bread, go for Genius bread. Its the only one that my ds will eat. You will need to read the label of any frozen chips he has, as often they are coated in an anti caking agent that contains gluten. Malt vinegar also contains gluten (from barley) as does some distilled vinegar.

Its worth googling for gluten free foods as there are a lot of alternatives out there, but they aren't readily available on the high street.

If you do decide to do it you will become an obsessive label reader like me, but imho the benefits far outweigh the effort.

My ds1 is gluten free, but still has casein (we are veggie so avoiding casein would be quite difficult). He has a verbal dx of Aspergers, but is still awaiting formal assessment.

He was gluten free from 1 November 2009 until 1 March 2010 then had to go back onto gluten as once the Paediatrician heard how much he improved whilst gf he wanted to have him tested for coeliacs.

While he was gf his stomach/bowels slowly improved. They went from him never having had a normal stool in his life, to pretty much normal within about a month and a half. When we had to put him back on gluten he started having problems again almost straight away and now we are back to him spending hours in the toilet every day and suffering from constant diarrhea.

We also noticed a HUGE difference/improvement in his ASD behaviours when he was gf. To be honest, he was a different child all round, calmer, more responsive, better eye contact and much better concentration as well as making big improvements socially at school.

Unfortunately, since he's been back on gluten he has been ten times worse than he ever was before he came off it and the whole family has suffered as a result (lots and lots and lots of meltdowns etc). It has been a really tough couple of months and I just found out an hour ago that the nurse that took his blood for the coeliac test a week last Tuesday didn't take enough blood so he has to have the test all over again! Aaargh!

claw

the problem with the children who have this gluten and casein problem is that they crave the very foods that cause them problems.

When you first withdraw the problem foods they can even go through a thing which is a bit like withdrawal.

The thing is though - if you can get them through that and take out gluten and casein MOST children then will eat more foods.

Moosemama
I have consistently refused to put him back on gluten to do the coeliacs test because

Paed : we want him to go back on gluten
Me : why , we already know he cannot tolerate gluten
Paed : because then we will know if it is just gluten intolerance or if he has coeliac disease
Me : what will we do if he has coeliac disease, what is the treatment
Paed : we will take him off gluten
Me: so we are putting him on gluten even though he is intolerant just so that we can find out if he also has coeliacs which will mean that he should [dur] withdraw gluten
Paed : Oh . Ok Mrs Pag

Sorry, I was just thinking about GF Claw as DS is GF with limited casein (still has goats milk which contains less casein). I recently reintroduced cheese and he developed eczema up both arms so back to no cheese!
Pagwatch-only good thing about that test is getting a result which proves to the medical profession that they need to be on a GF diet so they can give you the food stuffs on prescription. I refused to put him back on gluten so have to pay for stuff but wouldnt have it any other way

www.celiac.com/articles/181/1/Safe-Gluten-Free-Food-List-Safe-Ingredients/Page1.html

this is good for reference

would second genius bread- it is the only shop bouhgt edible version, imo

BUT

it does still have stabilisers/preservatives etc. and so not good.

the best way forward to is make your own (ha! because we all have so much time for that!)

if you do the test and it shows positive for your ds, or even just have a trial and see positives results, this really does become all-encompassing.

the dds use different soap, toothpaste, can't have regular sun creams (if any at all) etcetc. but it is all worth it, if you get thepositive results.

a word of warning about coeliac-friiendly products - quite often they are allwed a very small tolerance level of gluten, so are not actually guaranteed gluten free. I believe that oats are also acceptable to many coeliacs, and so labels need ot be checked ofr oats/oat fibre, as often oats don't count as a gluten product

have a look at the www.treatingautism.co.uk website.

really worth doing gluten free, casein free.

Silverfrog
Why no sun cream?

just the general ingredients list, waitingforgodot.

No (nasty) chemicals at all in this house (although I do lapse and buy industrial strength for the loo if I have been MNing too much )

ANd dd1 has calmed right down since we've taken them all out. We now use the most neutral of neutral soaps/shampoos etc. toothpaste is SLS free, sorbitol free (damn sweetners get everywhere!) and flavouring free.

suncreams - don't even get me started. you can get organic, "nice" ones, but often they willhave herbal stuff in that dd1 reacts to - lavender etc.

so the easist solution is the old fashioned one - cover up using loose cotton clothing, big floppy sunhat, and dd1 gets ot stay as a pale english rose

that's industrial strenght bleach

sorry for typos, have no internet connection at home, so using my phone