niki Report post Posted April 16, 2004 to all that have their littlies on c/f g/f diets. Did your little one go through "withdrawals" when his/her diet was changed? i have been considering giving it a go with my son, but even giving him a g/f day left him literally eating the walls! apparently he was after the wallpaper paste! (flour-based) If this is just a small taste of whats to come how long does it last? my whole house is papered! Quote Share this post Link to post Share on other sites
pookie170 Report post Posted April 17, 2004 Niki, there was a documentary on telly not long ago, on Jackie Jackson and her kids. (4 out of 6 are on the spectrum, and those 4 are all boys!!) Her youngest actually ate carpet underlay (also wallpaper for the paste!!) to get his gluten 'fix', so I'm assuming this could be common. This could be my boy. We have not tried the diet out yet, I'm on benefits (not through choice, I feel like a scrounger schemie type, thus I embark on college in a few months!!) and fear it could be expensive, though if I get DLA they might give me an allowance for special foods....not holding my breath though!!! Quote Share this post Link to post Share on other sites
niki Report post Posted April 25, 2004 sorry its taken me a while to reply but forgot about this topic. I am really reserved about trying the diet, as most days he is eating the most wierd things! not only that the sheer cost of alternatives scares me half to death! Quote Share this post Link to post Share on other sites
Nikki Report post Posted May 12, 2004 I was actually thinking about trying out both types of diet on my son (one at a time ) to see if it made any difference to his behaviour.Has anyone had any good experiences of using these types of diets / seen any great changes???? I am really sceptial ( is that how you spell it!!) about all these sorts of things as Samuel has such a limited list of likes anyway & if I try out one or both of these it will decrease the list even further! Before I start out I thought it would be useful if anyone else had any experiences of these so let me know people Bonsoir Quote Share this post Link to post Share on other sites
mbrown Report post Posted May 12, 2004 Hi Nikki, we have had our 9 year old boy on a GF diet for around 2 or 3 months. I thought at first that there was an almost immediate difference in his behaviour. He was more talkative and seem to take in what was being said a little better. A llittle later Iwasn't quite so sure, as both denying him food he really wanted and trying to introduce certain GF foods that he considered to be 'poison', often resulted in screams and tantrums. However, a recent talk with his teacher has revealed that in the last month his behaviour in class has been very good, his concentration is up, and he has been less physical when trying to get other childrens attention. He will talk to them intstead of poking, or a very irritating tap, tap, tap, tap....... on the shoulder. I am hoping deep down that this improvement is down to the GF diet, because it has been really hard. Our boy had a limited diet to begin with so taking his favourite foods off the menu was very difficult. His mother and I decided at the beginning that we had to give it , 'a good go', nomatter how hard. At home our we have tried to keep any forbidden food out of sight,(lock up the biscuits), and our boy is getting more used to things. we still have problems at the shops when he sees something he really likes and is then told he can't have it. The more you learn the more foods can be introduced to the diet. remeber almost everything that contains gluten has a GF equivalent, albeit some rotten tasting ones. There are also many foods that are naturally gluten free. It takes a long time for the gluten to get out of the system so don't expect very quick results. There is lots of info out there. You will become a master at reading food labels. Our lad reads the labels too. All of the big stores will, on request send a list of all products that they sell which are gluten free, dairy free, etc. Be warned though, these lists are not all 100% accurate, you still need to read labels. e.g. Asda says there own corn flakes and rice krispies are GF but included in the ingredients is maltodextrin (from barley I believe) and therefore has gluten. I'm sure other people can give you tips. If you have any Q's please feel free to ask. Good luck with your plans. Mike Quote Share this post Link to post Share on other sites
benruth Report post Posted May 13, 2004 Hi My friend who is on gluten free diet told me Sainsbury's have quite a good range now, and she is trying them all out. The best tasting soya milk I've found is 'So Good' (fresh one, not longlife). When I went on a wheat and dairy free diet many years ago, I felt tired, irritable and felt really hungry, craving bread. This lasted for a few weeks. I really panicked at first because of the desperate need for wheat. I wonder if it is a good thing to introduce something else to replace the items you want to cut out (like rice cakes) well before stopping them completely and then do it gradually? Jan Quote Share this post Link to post Share on other sites
Nikki Report post Posted May 13, 2004 Thanks Mike - I am sure that it would not be a bad idea to give it a go but bacause we live in France I may try to get a book with ideas for cooking things as we are quite limited with suppliers who do foods like this . We do have a bio shop near us so I may see what they offer. The trouble is Samuel lives on cereal of all sorts, french bread & dairylea, youghuts and pasta for tea or egg and chips so I fear this could be a nightmare of epidemic proportions !! BUt saying that I must try everything to help I think. Certainly the EYe Q fish oil has made him calmer so I think if I can slowly try to make a change it may help you never know. My trouble is that it has taken me so long to get him happy to eat the things he does now instead of baby food ! I have tried the very expensive supplements route such as extra vit b 6 & magnesium etc without success so it kinda disheartens you a bit. Quote Share this post Link to post Share on other sites
baddad Report post Posted June 19, 2004 Hi Niki New member, hence not posted earlier... Yes, there def. CAN be withdrawal symptoms. My son is dairy and Gluten free, and was mean and moody for about a week when each foodstuff was withdrawn. Won't go into full detials, but a few tips if you are thinking of taking the plunge... 1) Often there will be indications of an intolerance (runny bum or constipation/vomiting). Not always, but if there a good indication that one or both diets might help... 2) get urine tests done by paul shattocks team at Sunderland University... this again offers positive/negative indications BEFORE you put yourself through the testing phase... 3) If going for it, do dairy first. This is a) easier and more quickly shows (any) positive results - usually within 3 months. do for at least six months before giving up or tackling gluten as you may get mixed signals if your not sure about one before starting the other. 4) Gluten free needs to be trialed for up to a year before you can really know (but what the hey, your talking about the rest of your kids life so what's 12 months!) 5) I'd recommend that you "challenge" both diets at least once... so many changes can occur in a year that you can't really KNOW without challenging... 6) Involve your GP from the outset - they're much more likely to give the referals you need (dietician, Sunderland) and offer scrip products if they feel they've initiated the process. 7) Take a month or two to try various products before you start the diet proper; some products are better than others and it's easier if you know the palateable ones BEFORE you have to start eating them! 8) All of the major manufacturers sell direct over the internet. THEY WILL SEND YOU SAMPLE PACKS if you ask them (great for "7" above) Finally, some personal observations... My son was seeing a consultant for nearly two years about projectile vomiting and constipation. Despite my own belief that he was lactose intolerant i bowed to their wisdom and fed him every bowel loosening drug imaginable (I was far more trusting of professionals then than I am now), with no benefit whatsoever. The condition stopped within a week of commencing the dairy free diet... Gluten was less obvious. After a year, I was convinced it was having no effect whatsoever, and challenged the diet... It took me a week to peel him off the ceiling! I now know my son can "cope" with small amounts of dairy and TRACES of gluten, provided that they are not given over a prolonged period. This knowledge is helpful if my back's to the wall (ie if we're away from home and can't get at usual foods), but for the most part we stick rigidly to both. I will continue to cjhallenge the diets (seperately) every 18 mths or so, in the hope he will become less intolerant, but suspect that he will be on the diets in some form at least into adult hood. Incidently, Donna Williams ("Nobody Nowhere") writes in her books that she suffers multiple food allergies and that these impact greatly on her (autistic) behaviour... I've never heard an expert who's against the diets comment on that (?). Quote Share this post Link to post Share on other sites
niki Report post Posted June 21, 2004 thanx very much for that baddad has given me food(?!) for thought niki Quote Share this post Link to post Share on other sites
baddad Report post Posted June 22, 2004 Hi " 1 K NIKI " - glad info was useful... I wrote up some stuff on diet modification for a friend who wanted to do a "talk" at early birds on it... I still have it on my pc as a word doc., and you're welcome to a copy if you think it might be useful. Would warn though that it stretches to 15 pages, covering professional attitudes to/medical "theory"/Implementation of etc etc... I made it as simple as i could (had no option, being pretty simple myself!), but it is quite LONG! could e-mail if you want it, but PLEASE don't feel you have to - I'll not be in any way offended if you'd rather research for yourself. Whatever you decide with the diet, good luck! Quote Share this post Link to post Share on other sites
CarolJ Report post Posted June 30, 2004 (edited) Hiya all, I have decided to bite the bullet so to speak. I spoke to Paul Shattock today. I was lucky enough that he picked the phone up when I called the Univ. of Sunderland and I asked him a few questions. Anyway, as Scott is getting progessively worse, I always hoped he would start talking but aside from waiting for the results of the blood tests and MRI scan which i strongly suspect will not tell me very much although they are supposedly testing for food intolerences I am going to apply to the Univ. of Sunderland. Emma too is slipping further and futher behind and she suffers constipation whereas Scott goes about 10 timesa day! Am really nervous because if I implement the g/f c/f diet the whole family will have to go on it. I think it could be make or break time for other half! My kids total diet consist at the moment of yogurts, cheese dunkers/bread/breakfast cereal and milk, chocolate, breaded chicken nuggests. I strongly suspect my kids will think I am poisioning them or starving them! Still, it has to be done. I will go on it too and so will other half! Will fill out forms and get tests done first and then take it from there. David, would appreciate copy of that 15 pager if that is okay. will PM you with my email address. Thanks, not looking forward to all us having withdrawal symptoms at the same time! Would I get withdrawal I wonder or just the kids? i bowed to their wisdom and fed him every bowel loosening drug imaginable (I was far more trusting of professionals then than I am now), with no benefit whatsoever. The condition stopped within a week of commencing the dairy free diet... Interestingly when I saw gastroenterologist he suggested medication for dirroeah. I refused and said I wanted to find out what was causing dirroeah not cover up symptoms! I am very distrustful of any medication now, the only thing I give my kids are disprol and calpol. They have to be really sick before I give them antibiotics. It gets you like that! Will be interesting to see what if any food intolerences they both have. Edited June 30, 2004 by CarolJ Quote Share this post Link to post Share on other sites
CarolJ Report post Posted June 30, 2004 Hey I forgot to mention there is a website called Autism Induced Allergy which has lots of info for g/f c/f diet. http://www.autismmedical.com/ Good luck all, lets just hope food manufactuerers start to introduce more gluten free food, I have seen sections in supermarket for the food but it was a very limited range. Take care Quote Share this post Link to post Share on other sites
baddad Report post Posted June 30, 2004 Carol, will get 15 pager to you (going to "find" message after this. Yoghurts - provamel soya. Cheese - Cheezly (not Scheese, unless can't find cheezly). Bread - you'll need machine! Cereal, Ben's faves "Gorrilla Munch" and "Chocolate Stars" (tesco's/sainsbury's etc) Chocolate - loads, but also jelly babies, fruit pastilles, marshmallows etc. AND... SAINSBURY'S FREE FROM CHICKEN NUGGETS AND FISH FINGERS!!! Horrible getting started, but a year down the road you'll know what you can and can't like the back of your hand! Quote Share this post Link to post Share on other sites
