Jump to content
  • Announcements

    • Kris

      Depression, Mental Health and Crisis Support   06/04/2017

      Depression, Mental Health and Crisis Support   Depression and other mental health difficulties are common amongst people on the autistic spectrum and their carers.   People who are affected by general mental health difficulties are encouraged to receive and share information, support and advice with other forum members, though it is important to point out that this exchange of information is generally based on personal experience and opinions, and is not a substitute for professional medical help.   There is a list of sources of mental health support here: <a href="http://www.asd-forum.org.uk/forum/index.php?showtopic=18801" target="_blank">Mental Health Resources link</a>   People may experience a more serious crisis with their mental health and need urgent medical assistance and advice. However well intentioned, this is not an area of support that the forum can or should be attempting to offer and we would urge members who are feeling at risk of self-harm or suicide to contact either their own GP/health centre, or if out of hours contact NHS Direct on 0845 4647 or to call emergency services 999.   We want to reassure members that they have our full support in offering and seeking advice and information on general mental health issues. Members asking for information in order to help a person in their care are seeking to empower both themselves and those they represent, and we would naturally welcome any such dialogue on the forum.   However, any posts which are deemed to contain inference of personal intent to self-harm and/or suicide will be removed from the forum and that person will be contacted via the pm system with advice on where to seek appropriate help.   In addition to the post being removed, if a forum member is deemed to indicate an immediate risk to themselves, and are unable to be contacted via the pm system, the moderating team will take steps to ensure that person's safety. This may involve breaking previous confidentiality agreements and/or contacting the emergency services on that person's behalf.   Sometimes posts referring to self-harm do not indicate an immediate risk, but they may contain material which others find inappropriate or distressing. This type of post will also be removed from the public forum at the moderator's/administrator's discretion, considering the forum user base as a whole.   If any member receives a PM indicating an immediate risk and is not in a position (or does not want) to intervene, they should forward the PM to the moderating team, who will deal with the disclosure in accordance with the above guidelines.   We trust all members will appreciate the reasoning behind these guidelines, and our intention to urge any member struggling with suicidal feelings to seek and receive approproiate support from trained and experienced professional resources.   The forum guidelines have been updated to reflect the above.   Regards,   The mod/admin team
Sign in to follow this  
baddad

gf/df recipe freebie

Recommended Posts

baddad   

Hi all -

What with all these recipe/offer threads I remembered to say...

 

Pure margarine are doing a 'recipe book' promo at the mo. It said on the promo 'all dairy free/some gf free recipe book...

 

I've phoned for it, but the helpline girl said it was recipe sheets, so i'm not sure what'll turn up... if it'a any good, I'll let you know!

(One of the best gf/df recipe books I got was a freebie from Truefree flours - so fingers crossed!)

 

L&P

 

BD :D

Share this post


Link to post
Share on other sites

My son has been GF/CF for two years now, when I started out I saw my sons GP and was told that there was absolutley no way it was prescribable. I would be very interested to see how many of you can get anything on prescription, its getting expensive now Im making bread every two days.

GP said I know nothing about this, so I replied Sunderland Uni will be sending you info about my sons test etc to which he replied " I havent got time to be reading that" so I left wondering why I had bothered at all.

Thanks for reading.

Share this post


Link to post
Share on other sites

Hi

 

We get my son's bread mix prescribed - Juvela Harvest Mix. We could also get biscuits if he liked any of the prescribable ones but sadly he doesn't.

 

Our GP has been very good about this although I know many are sceptical. Is there another one you could talk to at the practice? Take along some of the Shattock stuff if you think it will help.

 

We didn't think the diet was doing anything for L - until we took him off it! Nothing happened at first but as the gluten/casein built up in his system his concentration and behaviour both went to pot. His teacher actually asked us to put him back on it as they could do nothing with our normally placid and compliant little chap!! Within a week he was back to 'normal'. :lol:

 

If the doctor you spoke to is any indication of the others at the practice, I would change your doctor. Yours sounds extremely blinkered and you could really do without that!

 

Best of luck

 

ohf!

Share this post


Link to post
Share on other sites
baddad   

Hi 'Perry' -

 

GF food on scrip is 'technically' for coeliacs etc, but GP's can prescribe where there is an intolerance at their discretion, so if they see the benefit for your child they CAN prescribe... Any doctor who gives you a definitive 'no' is either not willing because they don't perceive the benefit themselves or because they can't be ar*d to looks more closely at the criteria for prescriptions. My son has breads/biscuits/pasta on scrip, and has not been diagnosed with coeliacs (but does have a history of bowel disorders) so is a good case in point... My GP knew about the bowel disorder, saw him respond to a GF/DF diet and that was good enough for her!

Has your GP been involved in the urinary profiles etc? My own feeling is the more involved the GP is in the whole process the more likely they are to be open minded about results... Precious lot, these professionals!

 

L&P

 

BD :D

 

PS: Ohf - have you tried L. with the DS 'hoops' biscuits or the Frolinni(?) from schar range... Ben love's them - much better than the digestives! they (schar) also do a ladies finger stylee boudior biscuit but I've forgotten the name!

 

L&P

 

BD

Edited by baddad

Share this post


Link to post
Share on other sites
LizK   

In addition to the reasons mentioned above because of the ?XXX millions debt the various PCTs are in some are refusing to prescribe gluten free products to people with coeliacs let alone children with ASD. Have you seen a dietician? Do you have a paed or CAMHS involved? A letter from any of these sources supporting you in the GF diet may make the GP more likely to prescribe

 

Lx

Share this post


Link to post
Share on other sites

Thanks for your replies. Yes my son has been seeing pead. when I say Im sure diet is helping she says nothing but writes in report Mrs........ believes GF/CF diet is helping, only one person there didnt pooh pooh it and she has since left, it was her who suggested we try it but not till we where in the car park! No-one has ever mentioned CAMHS to me.Maybe I will try a different GP at our practice, you never know. Baddad, yes the GP was sent all info from Sunderland this is what he didnt have time for. :( Thanks again.

Perry

Edited by Perry Chie

Share this post


Link to post
Share on other sites
Lynden   

Were there any obvious signs of intolerances before you had your children tested? Did their behaviour change after certain foods or did they have gut problems etc?

 

I'm still debating having Logan tested, but he doesn't appear to react to any food, and although he did have bad reflux and constipation when younger he hasn't had any problems with either in the past 10 months or so..

 

Edited to add that his reflux cleared up hugely when he was moved from formula to cows milk, but he didn't have cows milk for long and his constipation cleared up after he stopped taking cows milk - he does have lots of other dairy though, cheese, yoghurts etc

 

I just wondered what made everyone try it?

 

Lynne x

Edited by Lynden

Share this post


Link to post
Share on other sites

I'm about to get J tested. He had an intolerance to dairy at 4 months old, but was ok on soya formula. He was ok with fromage frais and yoghurts at 6 months old, and when he was a year old I weaned him onto milk, and he wasn't sick so I thought he was ok. However, he developed severe constipation. I tried returning to a dairy free diet for 9 months, but it didn't make a difference to his constipation. So I think he may be gluten intolerent, but want to have the test done before I start him on the diet. I'm hoping it will also help with his concentration and ability to focus.

Share this post


Link to post
Share on other sites
elun1   

Hi Lynne

My youngest who is 5 now was diagnosed at 2 and a half and I decided to try the diet just to see if it'd help. Didn't get him tested for intolerances by Sunderland as there was a bit of a wait at that time and I'm no good at waiting! However sometimes I wish I had. Anyway started the diet, removed all dairy for 2 mths followed by gluten a couple of mths later. He's been dairy and gluten free for nearly 3 yrs now and I definitely did notice differences e.g. for the first time he would look up and smile when my dh or I came in from work. His constant diarrhoea stopped too which paed had written off as 'toddler diarrhoea' and I think his language and attention span improved too. HOWEVER we also tried a lot of other things too around this time e.g. PECS, Hanen, Signalong and he started at a SEN playgroup too so I'm never really sure what helped most to be honest. My instinct is that it helps him but some things I hoped would improve didn't e.g he 'stims' constantly by rocking from one foot to the other whenever he is awake and also spends a lot of time jumping on the spot. Many anectodal reports by parents I read at this time had mentioned significant improvements but this wasn't our experience. I still think it was worth trying for us though as I always would have wondered about it otherwise

Hope that helps but it's probably confused you more than ever - sorry!!

Elun xx

Share this post


Link to post
Share on other sites
opheila   

Hi the first thing i did was to keep a diary as i was told it was a year wait to see dietician. When i put L on a gluten free diet i noticed within weeks he was happier, his stomach reduced and his bowl movements were not so bad as they had been.

But he still had dry rashes around his body so i introduce the dairy free as well what a diffrence the dry patches on his skin went away he seemed more alert and bowl movement were almost normal. I saw the dietician and gave her all the information i had collected and photos as well L stomach was still a little extended but no where near it had been. His moods had also improved she agree with me and although he would not allow blood test he was still in nappies so it was hard to get urine sample. He is now 4 and still on diet

I have been told by my pead they wont except the results from outside organisations so it might be worth getting it done through your own doctor or pead

hope this helps

Share this post


Link to post
Share on other sites
LizK   

Adam has loose palish poos which we were told was due to todder diarrhoea and was anaemic presumably becasue he was pooing out his iron :wacko: As you know he had bad reflux as a baby and there is a link with cows milk protein intolerance and that. Daniel is intolerant to dairy, soya and eggs so there is a family history of dairy intolerances in the conventional sense.

 

Also Adam ate lots of dairy, looking back now he craved it. He would go to the fridge and help himself to three of four dairylea triangles and loved rice puddings and custard. He used to get red ears every night which apparently a sign of gf/cf intolerance.

 

Since going dairy free his bowels have improved and he is no longer anaemic so think he must have had a conventional dairy intolerance. However in the 6 months since he has been dairy free his imagination has improved a hundred-fold, he is play games and occupying himself in a way I never imagined he would ever do. He still has problems concentrating and hyperactive times but these are no longer as marked as they used to be. Prior to going dairy free I frequently thought this child needs ritalin but I rarely think that now rather that he's just bouncy! Of course it's difficult to say whether this is just normal development or the impact of school but the times he's had dairy since his behaviour has really deteriorated and he's become very hyperactive so I think the lack of dairy has definitely played a role. he no longer gets red ears either.

 

Dilemma we have now is whether to cut out gluten as well. Finding it much harder as he hates the gluten free substitutes and I understand the more palatable breads contain milk. I worry his diet will be hideously restrictive too. However I feel if we don't try it I'll always wonder especially as we've noticed such a benefit from the lack of dairy

 

From what I've read I think more children respond to the gf diet but the cf diet is easier to do in my opinion. Aside from cheese we can substitute everything Adam has with either soya or rice milk substitures and he's not noticed the difference. The dietician we saw recommended trying the casein free diet first too as it is easier to stick to and you see the effects quicker. According to Sunderland the casein free diet often works within 3-4 weeks whereas the gluten free diet needs a 6 month trial

 

Lx

Share this post


Link to post
Share on other sites
ksasnic   

Oh crumbs we are in a pickle now as it seems most people here are starting to deal with either casein free diet or gluten free diet.. my sons paed consultant said to try the cf/gf diet so we have started him on gluten free foods alongside casein free foods .. I am confused .. do people think that this is a good idea or should we cope with 1 at a time.. very unsure as I don't want Nick hitting withdrawals badly if at all and by what I seem to have read they go on about its heroin/opoid type qualities the gluten and casein give out so stopping it can cause withdrawals... eek I am so confused..

Share this post


Link to post
Share on other sites
LizK   

I think there is no reason why you can't do both together. I've a friend who did the Sunderland Urine test which was positive for both gluten and casein so did both at the same time. There probably are some advantages of doing them separately. We started with casein first as it was easier to do, far more palatable dairy substitutes available and as my youngest son is intolerant to cows milk it was straightforward to include DS1. Also if casein is a problem you should see some effects within a month whereas you have to be gf for 6 mths. I guess if you do both together and it helps you won't know which one? I think more children have problems with gluten than casein, some have both and some of the more palatable gluten substitutes contain milk so it he's ok with casein it might make life easier if you need to go gluten free

 

Lx

Share this post


Link to post
Share on other sites
oxgirl   

I've considered trying gf/cf and received the booklet from Sunderland, but I've been put off because my child is that much older. It suggests that results take over a year to see in older and less affected children so I can't decide whether to bother or not. The thought of doing it is very daunting and I wonder if the results will be worth the effort. :unsure:

 

~ Mel ~

Share this post


Link to post
Share on other sites
Shnoing   

Some time ago, we found that our son's (3) diet would fit into a gf/cf diet scheme, but this is just a coincidence.

We started the diet because of (more or less obvious) food intolerances:

- No (cow's, goat's or sheep's) milk or milk products;

- No wheat or rye flour.

We were told his digestive system was (ans still is) unripe (NOT because of celiac disease!).

He gets soy milk, potatoes and rice (flour) instead (under the doc's supervision).

 

Re. behaviour change:

A few times he ate/drank wheat bread/milk and some hours later he started to have diarrhoea and to show symptoms of ADHD. It took a couple of days to get him back to normal.

Edited by Shnoing

Share this post


Link to post
Share on other sites
joybed   

Hi all I am considering putting my DS on a gluten free casein free diet. I am looking into getting urine analysis performed but I have a few concerns. Marcus is a very faddy eater eats a lot of bread and breaded fish, sausages etc. We also eat out a lot. DH isn,t convinced of the benefit of the diet and DS is also reluctant. However I feel he would benefit and really want to give it a go. Is it really difficult to implement. I feel I could adapt a lot of his foods but holidays are what is really worrying me as we eat out all the time whilst away. My parents look after him a lot and I have discussed this with my mum and she is willing to implement the diet. How do I go about it. Have read Luke Jackson,s books and feel very inspired but need more practical help.

Edited by joybed

Share this post


Link to post
Share on other sites

Hi,

 

I'm about to have both my boys tested. I've been intending to have it done since the end of last year, when I saw a talk given by Paul Shattock of the Autism Research Unit. I also had the pleasure of talking to Paul afterwards and I got the information booklet, which goes into the theory of Leaky Gut Syndrome.

 

I think the problem with the diet is that you really have to commit to it for at least 6 months. Sometimes it can take the body a long time to get rid of all the stored chemicals!

 

There are lots of people on here who are already using the diet and have a lot of advice. I have already tried out loads of free-from foods and my kids will eat most of them. It is worth trying out different products before embarking on the complete exclusion diet.

 

If you search - there are already threads covering this subject.

 

Michelle

Share this post


Link to post
Share on other sites
joybed   

How much does the urine test cost and how quickly do you get the results. Had a look on the website and cant see a price listed.

Share this post


Link to post
Share on other sites
flipper   
Hi all I am considering putting my DS on a gluten free casein free diet. I am looking into getting urine analysis performed but I have a few concerns. Marcus is a very faddy eater eats a lot of bread and breaded fish, sausages etc. We also eat out a lot. DH isn,t convinced of the benefit of the diet and DS is also reluctant. However I feel he would benefit and really want to give it a go. Is it really difficult to implement. I feel I could adapt a lot of his foods but holidays are what is really worrying me as we eat out all the time whilst away. My parents look after him a lot and I have discussed this with my mum and she is willing to implement the diet. How do I go about it. Have read Luke Jackson,s books and feel very inspired but need more practical help.

 

Youll see other posts from me around here on the subject... I'm a recent convert, and like an ex-smoker I'm pretty vocal!

 

I honestly believe that if you think there is any chance of benefit that you should try it. I'm not saying it's easy (it's not) and it is expensive, but really, when you consider the theory - that casein and gluten may actually be poisoning your son - then I find it hard to justify not trying it!

 

However, I'd strongly recommend you get the urine test done first. If you start the diet and then do the test, then you might get inconclusive results, and not really know where you stand.

 

As Michelle says, it costs �60 and they returned our results in less than a week, though they say it can take up to 2 weeks.

Give the Sunderland ARU a call - Paul Shattock is extremely easy to talk to and has a refreshing attitude. He'll openly admit it doesn't work for everyone, but for those it does work for, the results can be quite startling.

 

Like your son, C was (and still is) a very fussy eater - but the things you mention are classic as they all contain gluten and they can quite literally crave them in the same way a drug addict will crave the next hit. There are many, many alternatives available now - not all of them are that good (bread is very difficult to replace adequately) but many are. GF sausages, fish fingers, chicken nuggets are all available, though it may take your son a while to get used to them. GF pasta is fine if cooked carefully and served with sauce.

 

I agree eating out is difficult, and we don't do so much at the moment. Chips are always a good standby (not exactly healthy, but better than nothing!). "Real" food is usually fine - roast chicken, beef etc. if he'll eat those. However, C is only 4 and already understands that is we say something has gluten that he can't have it (even if he doesn't actually understand why), and he's currently quite happy with ice-lollies instead of ice-cream (but check ingredients carefully!).

 

Also, see your GP once you have the urine test results - he may prescribe some foods such as bread, pasta, pizza bases, which will save you a bit of money, and also he can refer you to a nutritionist to make sure your son isn't missing out.

 

GF/CF is still controversial medically, so it's up to us to spread the word - especially if we see benefits. We really do feel C has benefitted already (at the risk of repeating my previous posts), his speech is much improved, play is more imaginitive etc. Thankfully our GP is currently open-minded about the possibilities...

 

Honestly, it's not so hard once you get used to checking all packaging, and work out what's good and what's bad!

 

But please, do the test - it may well come back negative, but you'll never know. And if it does come back positive, then try it (you'll need to stick with it for 6 months or so) and then decide if the benefits outweigh the effort. I'm betting you'll think they do.

 

I'm sorry... I do seem to preach a bit about this! PM me if you want any more info (and no, I'm not on commission from the ARU, honest!)

 

Phil

Edited by flipper

Share this post


Link to post
Share on other sites

there is really good dairy free ice cream - not sure if I can say who it is made by, but it comes in black tubs in a variety of flavours and is very nice. I've tried it and it tastes OK. The only trouble I have is with cheese - dairy free cheese isn't nice. Does anyone know if goats cheese contains casein? I'll do a search on it - my son will eat hard goats cheese though I'm not keen on it!

Share this post


Link to post
Share on other sites
joybed   

Marcus hates cheese anyway but loves yoghurt and not sure if he will eat soya yoghurt will have to but some and see. Once tried him on soya milk he hated it with a passion but i can,t blame him on that one as so do I. I can tolerate rice milk but not tried M on it, feel certain he won,t (wrong colour) but he doesn,t drink much milk anyway. He does love ice cream though but as you have said there are alternatives. Will get the test done and keep you posted as to results. Thankyou for your advice.

Share this post


Link to post
Share on other sites

As J has severe bowel disorder as well, and was intolerant to milk as a baby, I also have had him tested for dairy allergies and coeliacs - but the results came back negative. But these test for antibodies in the blood, wheras the urine analysis tests for metabolites of the proteins.

Share this post


Link to post
Share on other sites
flipper   
there is really good dairy free ice cream - not sure if I can say who it is made by, but it comes in black tubs in a variety of flavours and is very nice. I've tried it and it tastes OK. The only trouble I have is with cheese - dairy free cheese isn't nice. Does anyone know if goats cheese contains casein? I'll do a search on it - my son will eat hard goats cheese though I'm not keen on it!

 

The protein in goats milk (and cheese) is much more easily tolerated than that in cows milk.

 

As Paul Shattock told me, on a scale of 0 to 20 for "toxicity" - human breast milk rates 0 (obviously), goat/sheeps milk rates 1, cows milk rates 20.

C is on goats milk and has been for some time due to a casein allergy (we knew this long before the rest of the ASD/GF stuff!) and has no problems with it. You can get goat yogurt - Morrisons do some flavours; goats milk ice-cream is out there somewhere but we haven't found any local to us and goats milk chocolate is available on the web...

 

Phil

Share this post


Link to post
Share on other sites

I've been trawling around the web - and it seems that J's favourite food - crumpets is now available gluten free from a well known supermarket. Though I don't know if they are in all branches. I'm not sure if they are dairy free though. It's good to hear that goat/sheep cheese is better - now I can make gluten/dairy free pizza (another favourite!)

 

Also, for those that like to eat out

 

On the go

 

might be worth a look.

 

There are loads of recipes out there - just do a search for gluten free or coeliacs etc.

Share this post


Link to post
Share on other sites
joybed   

You might not know this answer but it is worth asking. Marcus is prscribed movicol paediatric for constipation. Does anyone know if this is suitable for gluten free diet. Anyone elses child on this also. If it has gluten this may be the end of us trying the diet as it is the only laxative that works for him that he will take. I am so hoping it is suitable. Thanks in advance.

Share this post


Link to post
Share on other sites
flipper   
You might not know this answer but it is worth asking. Marcus is prscribed movicol paediatric for constipation. Does anyone know if this is suitable for gluten free diet. Anyone elses child on this also. If it has gluten this may be the end of us trying the diet as it is the only laxative that works for him that he will take. I am so hoping it is suitable. Thanks in advance.

 

I'm no expert (no medical background) but the wonders of the internet lead me to netdoctor.co.uk and a search for movicol there doesn't indicate and gluten in it (as far as I can tell).

 

However, as in all things, you should see your doctor. Sunderland Uni recommend you see your doctor before starting a new diet - though we didn't, we'd already started before we saw him - and in your case I'd say it'd be a very good idea to see the doc once you have the urine test results, but before you make any major changes.

 

Phil

Share this post


Link to post
Share on other sites

My son is also on Movicol - again, it's the only one that helps a little. Looking at the ingredients: Macrogol, sodium chloride (i.e. salt) sodium bicarbonate (i.e. baking powder) and potassium chloride ( a version of salt). The last 3 ingredients do not contain gluten. I'll look up more info on the first, but I doubt it contains gluten.

 

The other thing to remember about Movical (that the doctors often forget to tell you when prescribing it) is that for it to work, the child must drink a lot of fluids, as it works by drawing fluids from the body. This is most important during the summer months when you lose more water from your body ( I know- ended up with kidney infection and still don't drink enough water!!). I only found this out when I took J to A&E with severe constipation pain even though he has movicol everyday.

Share this post


Link to post
Share on other sites
joybed   

Hi well we had him tested and although he didn,t show any peaks for glutenomorphine or caseinomorphine he showed a IgA peak which is said to be indicative of a gluten intolerance, (hope i have all above terms correct). We are therefore trying the diet. He really withdrew for the first week and was very clingy unwell and hyper, then he appeared to calm down for a week and now he is manic again. Behaviour is equally as bad if not worse than before. We have been totally gluten casein free for about 5 weeks now although to be honest we are still allowing apples and citrus fruits juices etc. Is this common is it still withdrawal or is it the fruit. It could also be that it is the time of year of course.

Share this post


Link to post
Share on other sites
flipper   
Hi well we had him tested and although he didn,t show any peaks for glutenomorphine or caseinomorphine he showed a IgA peak which is said to be indicative of a gluten intolerance, (hope i have all above terms correct). We are therefore trying the diet. He really withdrew for the first week and was very clingy unwell and hyper, then he appeared to calm down for a week and now he is manic again. Behaviour is equally as bad if not worse than before. We have been totally gluten casein free for about 5 weeks now although to be honest we are still allowing apples and citrus fruits juices etc. Is this common is it still withdrawal or is it the fruit. It could also be that it is the time of year of course.

 

Hi

That doesn't mimic our experience - but everyone is likely to be different.

 

From what I recall reading, the more major the reaction in the early stages, the better! This, apparently, is an indicator that there is a form of addiction taking place - so I'd say that (hard though it is) it's probably a very positive response.

However, I've recall also that after a few weeks things settle down (perhaps returning to near-normal) for some months before gluten is finally expelled from the body's stores.

 

TBH, I'd give Paul Shattock and his team a call to see if these are typical (or, at least, not unusual) symptoms - he can give you guidance if you wondering whether to continue, and can also answer your other questions about fruit etc.

 

Phil

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

Sign in to follow this  

×