elun1 Report post Posted December 9, 2005 Hi I've decided to 'break' the casein/gluten free diet that my ds (aged 4) has been on for the last 2 yrs. Don't want to keep him on it for life without ever challenging it to see if it ever really made a difference, if you see what I mean. But I'm very very nervous about it. Does anyone have any experience of stopping the diet? I used to think my son changed a lot after starting the diet but after diagnosis I started many interventions with him e.g. PECS, Special Needs Playgroup, Hanen program at home etc etc. Now how do I know which worked and which didn't? He was diagnosed as moderate/severe autism with SLD and Sensory dysfunction. Altho he's improved in many ways, if he was re-assessed 2morow, he'd still fall within that category. Any comments or ideas welcomed! Many thanks Elun xx Quote Share this post Link to post Share on other sites
baddad Report post Posted December 9, 2005 Hi Elun - I 'challenged' Ben's diet regime some time ago... Rather than opening out his diet completely I let him have just a few things containing gluten, without making him aware that the 'new' foods weren't gluten free, and at home only not at school where other people might inadvertently make comments to 'tip him the wink'... In ben's case, it was very apparent within a day or so that the new foods were effecting his behaviour significantly. After going back on to the full diet regime, it took about a week to 10 days to re-establish the previous balance - not too bad, all things considered and well worth it in terms of peace of mind. I've never challenged the dairy free side of things, 'cos dairy effected him medically rather than behaviourally... He can tolerate small amounts of dairy, and I test this from time to time to see if his resistence (?) has built up... Hope that's helpful L&P BD Quote Share this post Link to post Share on other sites
call me jaded Report post Posted December 9, 2005 Only ever challenged this through dietary infringements. He ate a whole packet of the wrong kind of custard creams earlier this year and it was weeks before he got back to 'normal'. Have you ever considered dietary enzymes? Quote Share this post Link to post Share on other sites
elun1 Report post Posted December 10, 2005 Hi Thanks for replies. Yes bought some Enzymaid from Kirkman labs but haven't tried it yet. Have you tried them? Elunx Quote Share this post Link to post Share on other sites
call me jaded Report post Posted December 10, 2005 I have some on standby for the next time. He was really out of sorts for a month or longer. Quote Share this post Link to post Share on other sites
elun1 Report post Posted December 10, 2005 Hi I just can't decide whether to break diet or not! It's very scary after following it so carefully for 2 years. How long have you been using diet? Elun Quote Share this post Link to post Share on other sites
alibaly Report post Posted December 10, 2005 (edited) My friend was able to take her daughter off the diet after introducing an enzyme to her supplements. I'll go and ask what it is then get back to you. Edited December 10, 2005 by alibaly Quote Share this post Link to post Share on other sites
alibaly Report post Posted December 11, 2005 She uses dietry enzymes and buys them from Houstanni Quote Share this post Link to post Share on other sites
Fox Report post Posted December 16, 2005 My son has been gluten free for 4 years now. Everytime he inadvertantly has gluten, or even plays with playdough, the hyperactivity and aggression start within minutes. It takes 3 weeks to get back to some sort of normality. I've never heard of these enzymes. What do they do? How do they work? Quote Share this post Link to post Share on other sites
melly Report post Posted December 17, 2005 We are looking at reintroducing some foods, after doing this for 4 months we were advised to challenge it. But i have no idea of the quantities i should be using to see a result. N e ideas? Quote Share this post Link to post Share on other sites
baddad Report post Posted December 17, 2005 We are looking at reintroducing some foods, after doing this for 4 months we were advised to challenge it. But i have no idea of the quantities i should be using to see a result. N e ideas? Hi Melly - Forgive me if I've got the wrong end of the stick, but your post seems to suggest that you are thinking of challenging the diet after only four months of your littlun being on it(?). Depending on the child, it's suggested that it can take around 6 months for the diets to 'take effect' (that's not the right wording, but I'm feeling a little dull headed this morning!). If you've noticed benefits, give it another six months or so and then try challenging. If you haven't seen any benefits, persevere for another couple of months before deciding whether to pull the plug or not... As I've said, It's possible I misunderstood your post and it's actually been longer than four months. If so, you can only really go with your instinct. What I can offer is that challenging the diet in my son's case reaffirmed that the diet does benefit him, and that he can tolerate small quantities of milk/dairy on occasion, both factors well worth the challenge to find out! L&P BD Quote Share this post Link to post Share on other sites
melly Report post Posted December 17, 2005 Baddad Hmm interesting. We saw xxxx (name removed by moderator) (Surrey specialist) who thought that our small person had a very small chance of reacting positively to the diet, and as such he suggested onlt three months before reintroducing the c and g. The sunderland uni analysis came back with a mixed view, seeming to state that he reacted to gluten, but possibly not caesin. To be honest, we are not quite ready to start messing around atm, as he seems to have decided to quit sleeping which is affecting his behaviour (strange that!). But I am keen to see if he has a tolerence level so that if we are out and in dire staits we can make an informed decision on feeding him something not strictly on the diet. Is it right then that many children can tolerate a certain amount of c and g? And by 'small' what do you mean?!? Are you following the msg and aspartamine free too? Thanks for the info, look forward to more! Quote Share this post Link to post Share on other sites
baddad Report post Posted December 17, 2005 Hi melly - Obviously I don't know anything about your doctor T., or the reasons he may have for feeling that the diet will not help in your case, but FWIW the paed who i mentioned in my earlier post was absolutely adamant that my son's problem had nothing to do with dairy intolerance, which is part of the reason I took so long to get started on it. he was wrong, and has admitted that... The profile you got from Sunderland sounds just like my sons, but it in fact turned out that dairy was a very direct cause of his bowel/vomiting problem (cleared up within DAYS!), while gluten mainly effects concentration/behaviour. I found when challenging the diet that sensitivity to gluten seems immediate (causing highs) while dairy can be tolerated in small doses with big gaps in between, so if something says 'may contain traces of milk proteins' i can generally get away with it, and occassionally (like at Christmas!) he likes some REAL cheese in moderation. Thankfully, if he does get a bit too much he gets high (again) rather than sick - which needs quite high concentrations - and this is usually only a one night thing... I try to avoid MSG where possible - cos it is wicked stuff ANYWAY, but it doesn't seem to have a direct effect like gluten... Aspartamine is a bit of a trade off... he'll either get an Aspartamine buzz or a sugar buzz, aspartamine buzz SEEMS slightly less problematic, but i guess I should do more investigation, especially now that fruit sugars are more readily available... Thats MY situation, but I'm aware that others have different experiences, so i think it varies from child to child (which makes sense if YTAI!). My personal opinion is that you should go 'Full Out' with the diet for at least six months, then 'challenge' it seriously. If you see an immediate step backwards - No brainer. Gradual decline and you're probably in the area where you can 'fiddle about' a bit to see if occassional treats are OK. No change and WHEY HEY! Bin the breadmaker, you're back on Hovis! Hope that helps L&P BD PS: Sometimes some things cause problems for no obvious reason... there's not actually a known ingredient thats causing the problem but something always seems to happen after that particular food??? Dunno how/what/when/why, but trust your instincts... L&P BD Quote Share this post Link to post Share on other sites
Zemanski Report post Posted December 18, 2005 I don't have any experience of this really but Com was on a milk free diet because he reacted to cows milk in baby milk when I tried to wean him off the breast at about 8 months. however, this information might be useful if reintroducing milk - Com's doctor suggested that when introducing milk into his diet we should start with yogurt because the proteins are broken down to some extent by the bacteria. We found that for a long time he could tolerate yogurt but not unprocessed milk. Zemanski Quote Share this post Link to post Share on other sites
call me jaded Report post Posted December 19, 2005 I've never heard of these enzymes. What do they do? How do they work? Have a look here: http://216.114.78.114/webcenter/sites/hni/ Quote Share this post Link to post Share on other sites
melly Report post Posted January 14, 2006 Elun, What happened next? melly Quote Share this post Link to post Share on other sites
loranderc Report post Posted January 15, 2006 Elun, What happened next? melly Re enzyme supplements really interested in trying these but dont know where to start ie which ones would be best for my six year old. is there one type that easy to obtain that most people are using? Going to see GP to discuss all this including sunderland urinalysis and sensory/ auditory integration therapy. Is their threads elsewhwere on this site for both the enzymes and the integration therapy? Lxx Quote Share this post Link to post Share on other sites
