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Food allergies/ autism, views anyone (coppertop/jimjams)

(43 Posts)
louismama Thu 17-Mar-05 11:54:37

HI have posted before about growing concern about my ds, ref. development and behaviour but as im just starting out on the "listen to me we have a problem road" i suppose im still praying for a miracle, clutching at straws etc. Some days i am ok i think yep there is a problem but ill get help and well get by, other days i just want to cry and cry and wish i could turn the clock back to a happier time. Anyway sorry about the waffle what i want to ask was does anyone have experience with food allergies. My ds was only babbling etc. at 18 months but to tell you the truth i wasnt overly bothered as he was quite content but suddenly at 19/20 months someting changed, im not naive enough to think that he didnt have problems before this time but i have to say something just clicked (the wrong way) it was so sudden i had to think whats changed? The only thing i could come up with was diet after a visit with the health visitor i started giving him soley proper foods and cows milk. I had been including him in family meals when they were suitable but still also giving older baby jars at other times. The most signifact new inclusion being weetabix, pasta, breadsticks and cows milk. 5 weeks later i was really worried ds much more moaney,clingy,started spinning(although he didnt walk till 17months so maybe coincidental-bored with normal walking by this time) head shaking returned which i had only seen for a brief time at 12months, with added looking out of side of eye. Eye contact plummeted started totally ignoring dh again something that has not been a big issue since 1.The final straw was spontanious laughter during meals(scary)i read that this can be an allergic indictator in autistic kids and yet another tick went in the suspected asd box. Have stopped wheat and reintroduced formula and improvement was visable immd. less grouchy sleeping through again taking afternoon nap again no laughing for no reason. Anyone got any input or am i just desperately trying to do something positive in the interim before i get his referal? Any suggestions with odd behaviours would be good too.

coppertop Thu 17-Mar-05 12:09:11

I don't have any real experience of food allergies but hopefully someone on here will be able to give you advice about gluten/casein-free diets etc. I think there's a test you can do via Sunderland university to find out if it's likely that he will need the diet. Jimjams will hopefully be able to tell you more about how to go about it etc.

coppertop Thu 17-Mar-05 12:10:19

You could also try a search in the mumsnet archives for threads about GF/CF diets etc. I'm sure there have been quite a few threads on this.

louismama Thu 17-Mar-05 12:40:29

Thanks coppertop xx

Jimjams Thu 17-Mar-05 14:43:47

the best place to look is the autism research unit in Sunderland. they do the urine test that coppertop mentioned.

It's not an allergy as such- more a problem caused by physical problems in the gut. It would be worth contacting them as they are very helpful, very kind and very approachable. Aslo they are very positive about diet intervention in young children. M ds1 is still awful when he has gluten.

Did anythng happen to him at 18 months (or a little earlier?) Illness or anything?

Also worth looking a allergy induced autism although they are very very strict- and their diets can be impossible to follow. Definitely the place for questions though. If you do go down that road its worth getting Marilyn Le Breton's books and also following the AiA link to BArbara Bread.

louismama Thu 17-Mar-05 17:12:50

no not at 18months bad ear infection at 6mnths only gastric took him to hospital to check out,and several colds around that time.thanks jimjams.

beccaboo Thu 17-Mar-05 23:26:14

Hi louismama, my ds is on a gluten and dairy free diet. We think it's really helping him. Some of the things you've said in your post sound familiar to me. The other thing that showed there might be a problem with his diet were the spectacular nappies he used to produce, we used to call them 'explosions'.

How old is your ds now?

louismama Fri 18-Mar-05 14:29:42

20 months he doesnt get diahorrea though more often constipated i know horrid thing to discuss but only really unusual thing i noticed about no. 2s was had a couple of occasions where lumps were all different colours as if food hadnt been digested properly. Did you do urine test? Should i be giving anything extra due to withdrawing wheat from diet?

beccaboo Fri 18-Mar-05 16:02:15

Yes, we did do the urine test. Think this is probably your best starting point. If this shows up anything, you could ask GP to refer you to a dietitian who could advise on balancing nutrients etc.

Pages Sun 03-Apr-05 18:04:30

I have just finished reading Karyn Seroussi's "Unravelling the mystery of Autism and PDD" which is all about curing/reversing autism with a dairy and gluten free diet. My DS is not autistic and I'm not sure if the book is particularly useful to me but if my child suffered form ASD or had the symptoms you are describing louismama, I would definitely put him on the diet. There is loads of really useful info and recipes etc.

Jimjams Sun 03-Apr-05 19:24:09

can I just add I'm not trying to cure my son's autism (no point) - bu the diet certainly helps- think it gives him a less foggy mind. Definitely not going for a cure though.

Davros Mon 04-Apr-05 09:39:03

You need to be very careful about using words like "cure" in this country. It is not considered acceptable and you may encounter the ire of the "neurodiversity" community.
My view is that, unless you feel that your child has clear health/medical issues then don't even think about dietary intervention. I know so many people who put their kids on the diet when they were young, just to see what would happen and because they thought it was a "no brainer". Years later lots of them have given it up, having been completely convinced by it, and quite a few continue to implement it but hate it. It is not only costly but a real treadmill and hard work. I don't know any children whose autism has been "improved" by it. I certainly know some whose health has been improved and who are therefore able to pay better attention, learn things, relax etc etc. These are the minority. It seems to be more effective in children who regressed and who have had health problems and gut problems. In that case I would say definitely do it, but don't do it if there are not clear indications like this or do it but be prepared to give it up. Otherwise you may find yourself a slave to it years later with very little idea of what, if any, affect it is having. It also completely restricts your child's independence and you can't relax at birthday parties or anywhere else publi. By independenced I don't mean living alone and having a job, I mean just not having to be hotly supervised constantly. I've also been out with children with autism and their tutors, not parents, and seen the tutors give them something restricted by mistake. They then don't always tell the parent and..... the parent doesn't notice! My opinion is not one you will often see but I know is shared by others but it is not something people usually speak up about.

Jimjams Mon 04-Apr-05 10:18:20

Davros I know loads of people who think like you!!!

Having tried lots of different ways of doing all the biological intervention stuff I would recommend using nutrilink practitioners as well. They're not sold on the diet as such and do all the necessary testing (in a sensible order) to ensure that the eupplements etc being given are the right ones for the child. Next time we talk I'm going to ask about the diet long term. (I'm beginning to think that ds1 is now more affected by sweetners/additives than gluten- he munched his way through a bit of donut a few weeks ago with no visible effect (in the past that would have set off 24 hours of screaming), but was a raving screaming lunatic after calpol- see previous thread on here). Theoretically this should make some sense as his gut should have been "repaired"- and his latest test levels were good.

Next time we talk I'm going to talk about relaxing the diet (not in terms of additives or peanuts which also send him loony) and perhaps using enzymes. Will let you know what the nutritionist says.

Jimjams Mon 04-Apr-05 10:18:59

agree about the word cure!

beccaboo Mon 04-Apr-05 10:22:24

Although my ds is on the diet, I know what you're saying Davros. It is extremely hard work. I make all his food for nursery and take it in every day - I copy their menu so he can have more or less what the others are having. He can't even play with the same playdough as the other children, I have to make special stuff. He doesn't seem to mind at the moment, but he's only 3 and I'm sure it will become an issue later.

We went to a birthday party yesterday and we had to watch him like a hawk all afternoon. He couldn't have any cake, which was a bit of a heart breaker.

On the other hand, he did have gut problems and I do think we've seen a difference in him since starting the diet. I have suspected a few times that he's had something off-limits at nursery, he gets a violent upset stomach. But we'll never know how he would have developed over the last 9 months without the diet, so it's impossible to know what's down to gf/cf and what would have improved anyway.

The head of AiA created a storm recently when she posted on Jamie Oliver's website about how the diet can 'cure' children. There were some pretty furious replies.

Jimjams Mon 04-Apr-05 10:23:45

ooh I missed that beccaboo- I can imagine- do you have a link?

beccaboo Mon 04-Apr-05 10:31:49

I still haven't mastered links here but if you cut & paste this it should work -

http://www.jamieoliver.com/forums/viewtopic.php?p=59728#59728

Jimjams Mon 04-Apr-05 10:38:35

found it- and oh dear- an unfortunate choice of words led to all that huffing and puffing! I don't give ds1 much in the way of peanuts. Not becauuse I want to cure him, but because when he has them he spends about 20% of the day whacking his head on hard surfaces.

I hate it when the big scraps begin. It happens a lot when something like ABA is mentioned as well. The people who are against intervention of any form- and who accuse people of trying to cure their children, or of not accepting their autism, usually have children who are going to grow up and live independently (albeit oddly!) (or are living independently themselves). I use ABA as it is an effective teaching method for ds1, I don't giive peanuts as it reduces his SIB. Doesn't mean I don't accept him for who he is, or that I'm praying for a cure!

Davros Mon 04-Apr-05 10:46:54

I think it is definitely worth "testing" the diet to see where you're at and that children who DID need it don't necessarily need it for ever and ever. But some parents get very dependent on it and it is their way of making a positive contribution. I also think that gluten may not be the biggest problem as Jimjams says, there could often be more problems with those nasty old colourings, sweetners, peanuts etc. I know a few people who use enzymes and are having good results. The other problem is that there are so many interventions that I've seen a number of parents implementing quite a battery of things and having to manage and monitor it all themselves and I think they lose track of what is doing what iyswim. It makes commone sense to introduce one thing at a time but you'd be surprised how many people don't. I've got a friend who was giving her son some weird substance (I said it was dried tea leaves which upset her!) and she swore by it, don't remember the details. She stopped being able to afford it, stopped giving it and its like it never happened! She's not stupid, not by a long chalk, but vulnerable. Mind you, her DS is the only child I know on a gfcf diet who eats well. All the other kids on "the diet" don't seem to eat any better or more variety than the rest of them.
BTW, if anyone does find a "cure" don't be worried about offending me, send me it immediately!

Blossomhill Mon 04-Apr-05 10:47:52

I must say Bibic told me that they had some children who did come off of the spectrum once there Mercury levels were sorted out. They didn't have asd just food allergies.
Obviously these children were very mild to begin with.

beccaboo Mon 04-Apr-05 11:00:52

When we started the diet we definitely felt it was something WE could do while we were waiting for the long process of official dx to unfold. It was also a way of keeping busy and distracting myself. We were very vulnerable at that stage, and would have tried most things - my skin is a bit more rhino-ish these days and getting thicker by the week .

It's been easier because he's so young, it means I'm still mostly in control of what he eats. It would be fantastic if he could come off it at some point and would make school a lot easier I think. He eats really well, loads of fruit, veg, rice, he will even eat Quinoa . Gillian McKeith would be proud.

louismama Mon 04-Apr-05 16:32:32

?

Jimjams Mon 04-Apr-05 16:36:31

my ds definitely does not eat well- but he didn't before either. I was hoping he'd widen his diet- but nope not at all.

louismama Mon 04-Apr-05 16:48:57

Havent posted for a while as ive been in uk, was quite suprised to see this thread still active. Ds gf for 3weeks now no other notable improvements since i last posted and all other concerning symptoms still there. There is so much info on this topic and autism in general im a bit overwhelmed at the moment. Went back to uk to have audiology test done- perfect, also saw h.v. who has totally abandonned wait and see approach and has ref. ds to dev. centre she actually said very little just listened and seems quite supportive now, she even went so far as to say she thinks ds in on the spectrum although she is not qualified to dx. I had only described symptoms. Also managed to send sample to sunderland awaiting results. Ds enjoyed trip and i got much needed TLC from parents Mom fab. totally supportive when i told her my concerns came to see h. v. too. Well at least the balls rolling worried thoughas ds has started hitting and pinching himself used to just be me. I did want to do candida stool test too but cant find where to contact anyone? I will continue with diet till i hear from sunderland but ds is still getting undigested food in nappies too. Btw is head shaking a big issue for others as it doesnt seem to be mentioned by people much.

louismama Mon 04-Apr-05 16:50:03

btw ? on previous post was as id fogotten p/wrd

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