why choose free from?

[ScienceGeek]

Most brands are gluten free, except ones that are biscuity/oaty/wafery.. So most milk chocolate bars will be ok. Read the labels if you are unsure about it.

[Tally]

Chocolate in and of itself should not contain gluten. Some bars of chocolate use wheat flour to prevent them from sticking together on the production line, but most companies are gradually moving toward using gluten-free flours for this purpose. If your son can cope with minor traces, they should be OK as the flour is mostly shaken off and only small traces should remain.

 

Most manufacturers have details under the "nutrition" section of their website, that is normally a good place to start looking. According to Kinder, the "surprise" eggs are gluten free.

[dana]

Thanks for your replies.

On some chocolates was written 'may contain tracies of gluten'. I am not sure if just tracies of gluten are bad as well?

 

Danaxxx

[Tally]

It depends on how bad his intolerance is. If you're in the early days of an exclusion diet, it's probably best to avoid even traces. Later on though, it can be a good idea to test small traces and see whether they cause a problem. Many people with gluten intolerance (as opposed to coeliac disease) find that small traces are OK, which offers them some flexibility.

[baddad]

It depends...

 

Generally speaking if he's got a medical reason (coeliac) for needing to be gluten free then 'may contain traces' is effectively a no-no.

If it's a Sunderland Uni/Dietary intervention thing then different parents seem to see different reactions - some parents report reactions if the child breathes in while walking past Greggs while othrr kids seem to be okay with traces or even very small amounts of gluten. The latter, (with traces) IMO, sounds far more likely if you consider the suggested mechanism(s) for gluten crossing the blood/brain barrier.

My own son is casein and gluten free. Last time I 'challenged' the diets ( a couple of years ago) any gluten was problematic. Dairy he has been able to handle in 'traces' for a good few years, and seems to be increasingly able to cope with it as he gets older in occassional treats...

That said, it's no bad thing generally to avoid gluten/dairy (basically the prime principle of any detox diet) so avoiding it wherever possible comes naturally now...

You shouldn't have too much of a problem finding choc bars that don't have the 'traces' warning, but major manufacturers will all have lines that produce different bars at different times - so they label in case of cross-contamination. Look to speciality manufacturers rather than the ones producing all the point of sale newsagent confectionary.

 

 

Yes - as above... if just starting testing on an exclusion diet avoid ALL gluten for at least six months

Edited March 31, 2010 by baddad

[trekster]

Watch out also for malt, so snickers is safe but mars is not.

[dana]

Hi,

 

My ds has started gluten free diet. I wonder how soon we can expect improvements in his behaviour and focusing?

What are your experiences?

 

Danaxxx

[trekster]

Good idea, but the best results come from gluten, dairy, msg and aspartame free diets. If your son has problems with gluten and dairy

then he is unlikely to improve.

 

i was off all the above food items. Within 3 months i appeared to regress, so i had to add in mag, calcium, b6 and 5htp to ease the aggression related anger/depression. i needed supplements and diet to heal my bowels. My constipation and mental confusion were the 1st to go.

 

i have recently added the occasional milk product back into my diet after 3 years of chelation.

[call me jaded]

Within half a day we no longer had a tasmanian devil. By day three it was noticeable to people outside the home - the escort, school, next door neighbour. Within a week he was sleeping an unheard of five or even six hours. From years of being on GFCF forum, I'd say most people will know within a week whether it's going to be worthwhile.

 

Gets difficult at week 6 or thereabouts but we persevered and had a second improvement at around three months. Been doing it ten years. I go on and off it myself, currently on it and noticably trimmer.

[baddad]

It can vary enormously, I think...

From memory, Paul Shattock and his team suggested that dairy proteins are eliminated faster, and that any difference will be apparent withing 2-3mths. They suggested gluten could takes up to six months to be fully out of the system, meaning a trial of that length to 'see' what was going on. The difficulty with that is that six months is such a big chunk of a child'd life (particularly if you're talking early dx and diet implementation before, say, three years) that it's possible changes could be 'linked' to diet that would have happened anyway...

Different scenario with my son, because he had vomiting/diahhorea which stopped within days of eliminating dairy, so a bit of a 'no brainer'... behavioural changes were much slower... funnily enough, dairy wasn't indicated by urine tests, but had the most effect with bowel probs, while gluten was indicated but didn't seem related to bowel - just behaviour! These days he can cope with small amounts of diary whille gluten seems more problematic(?)

One thing to think about - especially if the school are aware of dietary changes too (meaning no 'blind' tests are going on)... what you expect can make a big difference to what you 'see'. Subconsciously, you are likely to be trying much harder during trial testing to make sure that no external factors get in the way of the 'testing'. Avoiding those external factors wasn't something you did before, so already the environment has changed to a more 'positive' one, which could have an impact that is then interpreted as linked to diet when in fact it's not. Some recent testing on 'sugar' in kids diets (replicated by Jo wassname on extreme parenting recently) showed pretty conclusively that parents interpret behaviours in terms of what they anticipate rather than what is actually going on.

Very complicated - but good luck with it!

 

L&P

 

BD

Edited April 5, 2010 by baddad

[trekster]

With me it was easy to tell since i craved the gluten and dairy ladden products without realising. i even licked stamps to get high on the gluten in them!

i even craved my meds which had milk in them at the time.

[call me jaded]

I can relate to that Trekster - my son used to chew his clothing to get a dairy fix until I changed to vegan washing powder.

 

I found a behaviour diary very useful to reflect back on the changes - the difference in sleep particularly.

Edited April 6, 2010 by call me jaded

[dana]

Thank you all for your replies. <'>

My son's urine was tested by Sunderland center and the results showed that he has intolerance to gluten but not to casein.

Anyway he doesn't eat food with msg and aspartam but he has always been a big bread eater and never particularly fond of milk and cheese. We also keep salt and sugar very low. He has been taking vitamin supplements, fish oil, enzims and probiotics. He has problems with digestion and we observed that enzyms help a lot. We order them from Kirkman (actually through Tesco).

He has started the gluten free diet aprox. one month ago and during the first week his behaviour at school was relly good (I hoped that it was because the diet) but after that things went back as usual although he is still on GF diet.

So I don't really know what to think. I guess we have to wait for 6 months and see what happens.

Is Gluten intolerance related to behaviour and concentration (this is what I think but I am not sure exactly how it affects the person)?

 

Danaxxx

Edited April 6, 2010 by dana

[call me jaded]

It affects my son's focus/attention span. He had a nano-second attention span before - five seconds was good. I think our three month 'lift' was due to the half life of gluten being so long.

 

I completed the ARI online assessment profile just before we started and went back and did it six months later and DS's assessment score had decreased significantly.

[baddad]

one month ago and during the first week his behaviour at school was relly good (I hoped that it was because the diet) but after that things went back as usual although he is still on GF diet.

 

Danaxxx

 

My guess is that first week was because loads of other things changed - as suggested in my previous post. Unconsciously you would have been anticipating change -and if he was in on the dietary changes so would he (and the school etc etc) so with everybody trying that little bit harder and everybody looking for improvements it became self-fulfilling, iykwim. A week on, and things are starting to go back to normal. Similar thing if you introduce a new reward scheme. Mum and dad are being a little bit cautious 'cos they don't want to mess it up. Child is being a bit more thoughtful because he wants it to work too. It's a few weeks later, when everyone is behaving more 'normally' that you start to see if there's been any real benefit. Never underestimate 'the interactional paradigm' of seeing what you want/expect to see - it's pretty much ingrained in us humans, whether NT or ASD!

Stick with it, give it three our four months and see what you think then. If you think there has been an improvement - brilliant, if not 3-4 months is nowt out of a lifetime, is it? Test the diet at some point too, because as i said three - four months could make a big difference whether 'gf ' is a factor or not. After about a year/18 months try to reintrouduce some gluten (preferably without him knowing), and if you see a change back the other way you have some indication that it's definitely a factor. If you don't see any 'swing back' then the liklihood is it was more 'the interactional paradigm' and a normal 'growth phase'...

 

L&P

 

BD

[jaffacakes]

A couple of questions:

 

Are you thinking your son might be Coeliac? If so he will need to be on a normal Gluten diet for the blood test, if anyone suggested that you cut out gluten 'just to see' then they are wrong, sorry but it will make life much more difficult if you believe your son is Coeliac but don't get the NHS's rubber stamp (been there, got the whole damn wardrobe)

 

 

As well as cutting out gluten, you need to make sure your son is completely clear of all gluten. I can tell if my son has eaten Kellogs cereal for more than a few days and it only has a tiny amount of malt in it. Also be sure that all your pots, frying pans etc. are very clean. Cross contamination is a big problem. We have basically removed all trace of gluten from our house as even a few breadcrumbs can cause problems.

 

 

Have you discovered Well foods flour? http://www.wellfoods.co.uk It's the best flour I have found so far and I can make almost anything with it. There is a knack I've found but we'll keep that for another thread.

 

And to answer your question The first improvement we noticed in Ross (age 12mths when we first removed gluten) was the heat in his eczema, that was gone after 48 hours, the pain (we guess stomach cramps) went over the next few weeks and he became much less clingy in the same time. He as been completely gluten free since then so we notice the increase rather than decrease in behaviour. If he has one incidence of gluten it only takes a few hours before Ross is constipated, then about 36 hours from the gluten incident before we see any really symptoms: pain, diarrhea, tiredness and of course behaviour.

 

If he has a small amount of something on a more regular basis (for example cross contamination) then we may not notice for a few days, Ross will become increasingly active, bad tempered and show more Aspergers behaviour. At the same time we may see some small spots on his face, he will become tired during the day and not want to eat, then 'wake up' in the evening and be very hungry.

 

He also has behavioural problems with Yeast and benzoate, but not Casin or milk.

 

It has now been agreed that as Ross does not eat any bread or fortified foods (cereals) he needs an Iron supplement.

[jaffacakes]

Also, what foods is your son really missing? Give me a list and I'll see what I can source in the way of recipes etc.

 

The only thing that has stumped me so far is how to make chocolate stick on the top of orange for home made Jaffa cakes! Oh and I've not tried flaky pastry recently, but will again soon.

Edited April 6, 2010 by jaffacakes

[trekster]

I can relate to that Trekster - my son used to chew his clothing to get a dairy fix until I changed to vegan washing powder.

 

I found a behaviour diary very useful to reflect back on the changes - the difference in sleep particularly.

 

Wow i didnt know that washing powder contained dairy!

[trekster]

Thank you all for your replies. <'>

My son's urine was tested by Sunderland center and the results showed that he has intolerance to gluten but not to casein.

Anyway he doesn't eat food with msg and aspartame but he has always been a big bread eater and never particularly fond of milk and cheese. We also keep salt and sugar very low. He has been taking vitamin supplements, fish oil, enzims and probiotics. He has problems with digestion and we observed that enzyms help a lot. We order them from Kirkman (actually through Tesco).

He has started the gluten free diet approx. one month ago and during the first week his behaviour at school was really good (I hoped that it was because the diet) but after that things went back as usual although he is still on GF diet.

So I don't really know what to think. I guess we have to wait for 6 months and see what happens.

Is Gluten intolerance related to behaviour and concentration (this is what I think but I am not sure exactly how it affects the person)?

 

Danaxxx

 

The only real test is to try out the diet and see if it works. As he doesnt seem to gorge on milk and cheese he might be ok with gluten free. Well done for getting rid of the apartame and msg! You can appear to relapse on the diet as he will be craving the gluten. Licking stamps and envelopes gave me a buzz took a while to discover it was a gluten buzz. Gluten intolerance for autism can be related to behaviour and concentration, gluten is broken down in your sons body to make a morphine like substance that will make him high like heroin or real morphine does to people.

[trekster]

A couple of questions:

 

Are you thinking your son might be Coeliac? If so he will need to be on a normal Gluten diet for the blood test, if anyone suggested that you cut out gluten 'just to see' then they are wrong, sorry but it will make life much more difficult if you believe your son is Coeliac but don't get the NHS's rubber stamp (been there, got the whole damn wardrobe)

 

Why cant you test the diet without any medical tests?

As well as cutting out gluten, you need to make sure your son is completely clear of all gluten. I can tell if my son has eaten Kellogs cereal for more than a few days and it only has a tiny amount of malt in it. Also be sure that all your pots, frying pans etc. are very clean. Cross contamination is a big problem. We have basically removed all trace of gluten from our house as even a few breadcrumbs can cause problems.

 

i did the same thing and when i was living with my gluten eating granny we had separate cupboards for my safe stuff and her unsafe stuff.

Have you discovered Well foods flour? http://www.wellfoods.co.uk It's the best flour I have found so far and I can make almost anything with it. There is a knack I've found but we'll keep that for another thread.

 

And to answer your question The first improvement we noticed in Ross (age 12mths when we first removed gluten) was the heat in his eczema, that was gone after 48 hours, the pain (we guess stomach cramps) went over the next few weeks and he became much less clingy in the same time. He as been completely gluten free since then so we notice the increase rather than decrease in behaviour. If he has one incidence of gluten it only takes a few hours before Ross is constipated, then about 36 hours from the gluten incident before we see any really symptoms: pain, diarrhea, tiredness and of course behaviour.

 

If he has a small amount of something on a more regular basis (for example cross contamination) then we may not notice for a few days, Ross will become increasingly active, bad tempered and show more Aspergers behaviour. At the same time we may see some small spots on his face, he will become tired during the day and not want to eat, then 'wake up' in the evening and be very hungry.

 

Im the same and im in my 30ties now.

He also has behavioural problems with Yeast and benzoate, but not Casin or milk.

 

It has now been agreed that as Ross does not eat any bread or fortified foods (cereals) he needs an Iron supplement.

 

[jaffacakes]

Hi,

 

This is something that GP's commonly get wrong. The Coeliac Web site and helpline are very good and I suggest you contact them.

 

http://www.coeliac.org.uk/coeliac-disease/...o-get-diagnosed

 

Coeliac UK 0845 305 2060

 

From their web site (link above)

 

If you think you may have coeliac disease, it is essential to continue eating gluten until your doctor makes a diagnosis.

 

There are specific blood tests used to diagnosis coeliac disease. They look for antibodies that the body makes in response to eating gluten.

 

The most accurate blood tests for coeliac disease are:

 

Tissue transglutaminase antibody (shortened to 'tTGA')

Endomysial antibody (shortened to 'EMA')

 

The test used depends on the laboratory performing the test - they may measure one of the antibodies, or sometimes both.

 

A few people with coeliac disease do not make the usual coeliac disease antibodies - known as IgA deficiency. Where this is the case a different antibody will need to be tested for. People with ongoing symptoms that suggest coeliac disease but who have had a negative blood test should discuss with their GP if they have been tested for IgA deficiency.

 

A biopsy involves an endoscope being passed through your mouth and stomach into the gut. It is done using an anaesthetic spray to numb the throat or with a sedative given by injection. Biopsies are collected and examined under a microscope to check for gut damage typical in coeliac disease.

 

These tests for coeliac disease can be done on both adults and children. They confirm a diagnosis of coeliac disease in all cases. In young children, the endoscopy is performed under a general anaesthetic. If you have any concerns about testing, the best thing to do is to talk with your healthcare team.

 

Once the diagnosis of coeliac disease is made, you can then join Coeliac UK as a Member and receive lots of detailed information and support about following a gluten-free diet.

 

Home testing kits are now available over the counter and online. The Charity welcomes any development which can help people get diagnosed. There are some important things to think about in using such a test and we would always recommend consulting a doctor whatever the result of the test. You can read more about other tests for coeliac disease on our website.

Edited April 7, 2010 by jaffacakes

[call me jaded]

We have never got the coeliac diagnosis, even though it runs in in my DH's family. Never made any difference to us, but I've never tried to get anything on prescription.

 

I always say we do GFCF as a lifestyle choice but it's always been fully endorsed by both DS's schools who see the difference in him when we have slip-ups.

[jaffacakes]

Having a diagnosis ensures that there is support from GP level. Taking the diagnosis into account can greatly reduce the time to deal with any subsequent issues or symptoms, for example many Coeliacs are automatically expected to be Anaemic or low in other vits etc. This can cause problems in later life for issues such as osteoporosis and even some Cancers. Every time I go to the GP I have to explain what 'treated as Coeliac' actually means, and often have to explain to a new GP or Locum what Coeliac actually means, it's much more difficult to get them to listen without the NHS 'rubber stamp'.

 

Also the prescription items are worth getting, gluten free foods are not cheap.

 

A big consideration for me is that Coeliacs cannot be conscripted (to the forces). Heaven forbid, but I would be very unhappy for Ross to want to join the Forces, by his own decision or not. He can still join the Police or other emergency services.

[call me jaded]

Our GF diet consists of 'meat and two veg' dishes with rice, corn pasta and potatoes plus some cakes and biscuits cooked from scratch - it's very cheap. Calcium is the only thing we have to watch out for and we eat broccoli by the tonne.

 

My FIL died from cancer of the stomach so we take it seriously.

[ksasnic]

I know that when my sons school complained he was starting to be nuts again and we found out he had sneaked a rocky bar or other snack he shouldn't have.

 

In reply to

one month ago and during the first week his behaviour at school was relly good (I hoped that it was because the diet) but after that things went back as usual although he is still on GF diet.

[ksasnic]

If you join coeliacs uk site you get sent out a food directory with updates online. This book is great as you just look up and check on whatever you need to. most of the top food shops like asda tesco etc are listed in the book as well.

[call me jaded]

You can usually find out from the campany's website.

 

'May contain traces of' is a catch-all. It means that the food is gluten free but is produced on the same production line or in the same factory as gluten containing food. The manufacturer cannot guarantee cross-contamination hasn't happened. So it depends on how thorough you think the manufacturer is and how sensitive your young person is.

 

 

ETA: Oooops, just read ALL of BD's post - he doesn't half go on, doesn't he?

Edited May 7, 2010 by call me jaded

[baddad]

You can usually find out from the campany's website.

 

'May contain traces of' is a catch-all. It means that the food is gluten free but is produced on the same production line or in the same factory as gluten containing food. The manufacturer cannot guarantee cross-contamination hasn't happened. So it depends on how thorough you think the manufacturer is and how sensitive your young person is.

 

 

ETA: Oooops, just read ALL of BD's post - he doesn't half go on, doesn't he?

 

 

NUTS

 

You missed that out of your second paragraph: may contain traces of nuts is a catch all...

 

Just avoiud the one that rhymes with 'splints' and the one that rhymes with 'tressles'

 

[Special_talent123]

Sunstart Gluten Free Rocky Road Bars

Kallo Rice Cake Plain Chocolate 90g - these taste exactly like chocolate but its like on ricecakes. the beligan chocolate is made from soya and cocoa and is gluten free.

 

 

[KezT]

We thought we'd have a try at a gluten free diet for a while and see if it helps at all.

 

Does anyone have any helpful tips or advice? I think it's going to basically mean cutting out all bread and pasta, and increasing rice & potato intake to compensate. Are there any other products I need to be specifically aware of? We're on a tight budget, so can't really afford to buy "gluten free" products

 

thanks

[call me jaded]

Oh good luck! You can get dried rice nooodles that aren't outrageously priced and are great for 'spaghetti'. The other thing I do is cook in large quantities and freeze. That way your gluten eaters can eat something less expensive whilst the other one(s) are still catered for. And we rarely have coffee or a snack while we're all out (bring our own) and that saves a fortune too.

[call me jaded]

Anyone who's tried to find a GF porridge knows the alternatives are a bit gritty and what my DH calls [son's] grey brick because if you leave it long enough you could build houses with it. Well we tried the free from version this week and it's just like regular porridge. In fact I think it is regular porridge and we've been avoiding oats for no good reason.

 

Off to do a bit of research.

[baddad]

Anyone who's tried to find a GF porridge knows the alternatives are a bit gritty and what my DH calls [son's] grey brick because if you leave it long enough you could build houses with it. Well we tried the free from version this week and it's just like regular porridge. In fact I think it is regular porridge and we've been avoiding oats for no good reason.

 

Off to do a bit of research.

 

Hi Jaded -

 

There are a couple of own brand and name brand oats out there now that are gluten free. Basically, oats don't contain gluten but have historically always been cross-contaminated via the harvesting and processing. The 'new' oats are farmed and processed in a different way, and don't get cross contaminated or if it all only with tiny 'trace' elements well below the levels that effect most coeliacs.

I posted on them a while ago - Ben's had some lovely flapjacks / crumble toppings made with them and has eaten porridge for breakfast, with no ill-effects whatsoever. Someone (tally?) pointed out, though that while they don't contain gluten there is a protein in oats (oaten?) that is similar to gluten and that this is said to effect some people in the same way...

Can only suggest a 'softly softly' approach to trying them, but for Ben they've proved a welcome (if somewhat expensive) addition to his diet.

 

HTH

 

L&P

 

BD

 

Oh - just dug out the original thread... seems you could have been enjoying the yum flavour for almost a year if it wasn't for those gals at 'ANDI'

 

http://www.asd-forum.org.uk/forum/Index.php?/topic/22878-gluten-free-rolled-oats/

 

Hope all goes well with the test run.

Edited October 10, 2010 by baddad

[Tally]

The nice gluten free breads are very expensive, but it might be worth keeping one in the freezer for when there is nothing else.

 

If you buy gluten free flours to make your own cakes, that will still work out cheaper than buying ready-made ordinary cakes.

 

Other things to watch out for are sauces, gravies and things which might have flour added to thicken them. Soy sauce, worcester sauce, some vinegars and mustards, sausages and burgers, any kind of pre-prepared meals. Breakfast cereals.

 

You will need to read all the labels very carefully to start with, but you do get used to it in the end!

[call me jaded]

It's not going well... quite explosive result. Great for the day you're getting a new hot water tank and have a thimble-full of water.

 

ETA: I should know by now, but I do keep pushing the boundaries. Maybe in another couple of years.

Edited October 10, 2010 by call me jaded

[call me jaded]

yes, avoid anything that says 'flavouring' as it could be in a wheatflour base.

 

Tamari soy sauce is GF.

[trekster]

Hello

 

It is advisable to go milk, aspartame and msg free as well. Milk will be out of your child's system by the end of the week.

Aspartame and msg can be eaten occasionaly but tend to cause headaches or mental fog. Gluten can take up to 8 months to get out

of the system and the full 4 way diet is advised for up to a year.

 

Also any products your child might come in contact with whether edible or not must be gluten free. If you child is addicted to gluten

only then the diet will work, if they are addicted to gluten and milk then unless they come out the diet wont work.

 

Im a co mod on a recipe forum for this lifestyle PM me for more details.

[KezT]

Hello

 

It is advisable to go milk, aspartame and msg free as well. Milk will be out of your child's system by the end of the week.

Aspartame and msg can be eaten occasionaly but tend to cause headaches or mental fog. Gluten can take up to 8 months to get out

of the system and the full 4 way diet is advised for up to a year.

 

Also any products your child might come in contact with whether edible or not must be gluten free. If you child is addicted to gluten

only then the diet will work, if they are addicted to gluten and milk then unless they come out the diet wont work.

 

Im a co mod on a recipe forum for this lifestyle PM me for more details.

 

 

God, there is no way I could cope with all that unless there was really obvious reason to make that kind of effort I'm the laziest chef in the world, and never really plan out my meals in advance. Each day its a matter of what have we got and what do I fancy To cut all that out of your diet you must have to be really careful about getting the right nutrients....

 

TBH, there is absolutely no indication of digestive problems or coeliacs - I just thought it wouldn't hurt to drop the gluten a bit for all of us. Going gluten free is more for my DH than my DS. DH already has two autoimmune diseases, and takes drugs which muck around with his digestion, so droping the gluton seems sensible. The kids won't really do it properly anyway, because there is no way I'm stopping their freshly cooked, healthy school dinners for £1.90 a day unless someone provides some very convincing evidence that I should - so they will be on low gluton in term time, and pretty much gluton free in the hoidays, while hubby has a bash at totally gluton free for a while.

[call me jaded]

At the moment I am about 90% GF - only have it when there's nothing else. Same for DH. You end up eating loads of fruit and veg (prawn stirfry tonight). Increasing the anti-oxidants always seems to help DS with immune issues - lots of pomegranate and cranberry juice.

[baddad]

Hmmmm... Just got some free samples from glutafin of new bread products they've brought out.

They're all very nice, and all listed as 'gluten free' but some of them contain something called wheat starch... i've had a looksee on line, and it says that wheat starch used to be occassionally problematic for some coeliacs, but now anything marketed under 'gluten free' should be completely safe for all coeliacs (old standard 200ppm, new 20ppm).

Thing is, though, how well does that apply to autism?

I'll be doing some experimentation, but if anyone knows anything off the top of their heads it'd be useful. I don't think it'll matter for my son, but it'd be useful beforehand to know whether it would fall into the cetegory of 'occassional treat' or whether we can go for broke.

It's available on scrip, BTW, which is it's big 'selling' point over genius...

 

L&P

 

BD