GF/CF Diet

[Stephanie]

My son has just had his diet analysed through the Special Needs Dietician.

 

Even though his diet is really limited, he is getting all the nutrients he needs and they have even told me to take him off his multivitamins and possibly Eye Q (though that is our choice).

 

They have said that the Food Council (can't remember their proper name) have just done a new study claiming that the GF/CF diet doesn't really work and is not recommended as a result of that. They said they would support me if I decided to do it, checking to make sure he was getting all the nutrients he needs etc but would not endorse it.

 

I am kind of glad, to get him off carbs and dairy would be a nightmare as it is all he eats ... but I thought that their advice was interesting. I have heard mostly good stories about the diet, so was surprised by their comments.

[call me jaded]

Have you had the test done at Sunderland? (Sorry can't remember).

 

The research is inconclusive, but there are many of us out here doing it, and we wouldn't go to all the effort unless we thought it was worth it. Getting conclusive research is just about impossible unless you lock people up, because you are unable to totally control what they consume. Besides which non-food items are a factor (play-dough, washing up liquid, washing powder all contain either gluten or milk). I can tell within minutes if my son has eaten something he shouldn't have.

 

Frankly, mainstream dieticians are like sheep... I don't think you're off the hook that easily

Edited June 14, 2006 by call me jaded

[justamom]

We did the diet with our son a few years ago while he was being dx for Ulcerative Colitis, we were under Great Ormond Street Hospital and the gastroentrologest told me his words exactly "Are you still doing that silly diet with him, take him off it, its useless". He said that out of the 5 gastroentrologest 1 would consider the diet the rest did not believe in it.

 

I personally wish that i had not listened to him - very early stages in dx of his AS and i was very naive - i took him off the diet and its now very difficult to get him back on it.( i know i need to try harder).. Its a personal opinion but i feel it is so worth it wether experts agree or not its what difference it makes to your child and only you can experience the changes.

[Ohforaquietlife]

We took our son off the diet when we visited our in-laws in rural Spain as it was almost impossible to keep it up. Didn't see any difference at first but gradually as things began to build up in his system a deterioration started and by the time he went back to school in September he had lost the ability to sit still even for extremely short periods and his concentration was shot to pieces. His TEACHER asked (actually begged!) us to put him back on it and the difference was amazing. Within a week he was back to what is normal - for him My husband has always been highly sceptical of the diet but even he had to admit that it was obviously having an effect. We are not as fanatical as some about what he ingests but we do our best to keep him gluten and casein-free. Have never seen the dramatic effects some report if he grabs a chicken nugget but we steer clear of any kind of chocolate - even dairy free - and coke has him up way past midnight bouncing off the bedroom walls. He has had bowel problems since a toddler and symptoms are definately alleviated when on the diet although the downside seems to be that a gluten-free diet produces GAS that could knock most over at 20 paces As several of Ls classmates are also on the diet, the windows are permanently open at school!!!!

 

All in all, it is worth giving it a try. It's definately not easy but the fact that many of us stick to it despite the effort it undoubtably takes shows it must work for some. I hate cooking so I wouldn't do it unless I saw real benefits. I've had dealings with NHS dieticians and I'm sure they have their uses but when it comes to this they don't know squat - although of course they claim to!

 

Ohf!

[Fionamg]

My daughter has now been on the diet for a grand total of three weeks and there have been improvements in the sensivivity of her head which was hypersensitive. The nursery have noticed improvements in her ability to sit, she no longer squirms around constantly, her concentration is better and her eye contact has improved.

 

At two when she was diagnosed the speech therapist, who I have know a long time and is very experienced, said that she thought Alison would do alright but 18 months down the line the E.P. has said that she is so far behind that she has severe learning difficulties. The main difference between then and now was the amount of bread Alison was eating. She had gone from not liking bread to eating up to six slices a day. We are continuing with the "silly" diet and see how far we get.

 

Fiona

[Flora]

We did the diet with our son a few years ago while he was being dx for Ulcerative Colitis, we were under Great Ormond Street Hospital and the gastroentrologest told me his words exactly "Are you still doing that silly diet with him, take him off it, its useless". He said that out of the 5 gastroentrologest 1 would consider the diet the rest did not believe in it.

 

I personally wish that i had not listened to him - very early stages in dx of his AS and i was very naive - i took him off the diet and its now very difficult to get him back on it.( i know i need to try harder).. Its a personal opinion but i feel it is so worth it wether experts agree or not its what difference it makes to your child and only you can experience the changes.

 

 

Justamom, I had a similar experience. When William was 4 months old I put him on a CF diet. He was a changed baby within 48 hours; calmer, less sickly, started to gain weight, started to sleep etc. The paediatrician was very dismissive and said it was my call but that he must be on normal diet by the time he was one. By the time he was 2 he was on a normal diet and the horrendous bowel problems started again. Took him to another paediatrician who RECOMMENDED CF diet but by then he was so picky with his food that it was nigh on impossible to get him to eat any of the replacement products. I could kick myself really, because he fits the CF sensitive profile to a T but implementing the diet, and getting him to comply are polar opposities. If only I'd just kept him on it he wouldn't have known any different. I am waiting for the kit from Sunderland and if it comes up on there then we'll give it a go, but I'm not pinning anything on it.

 

Lauren

[Stephanie]

I might be being naive, but what changes should I expect to see from the diet.

 

Asa is not hyperactive or anything, in fact he is quite laid back and we don't have any behavioural issues at the moment. His concentration levels are ok and have improved since he started on Eye Q.

[Flora]

Stephanie, it would depend on what problems you were trying to alleviate.

 

My own experience from years ago when William was a baby and on CF diet was that prior to the diet he:

 

slept for about 2-3 hours out of 24 (not all together, just up to half hour at a time)

 

constant vomiting and diarrohea

 

totally unfocussed

 

terrible collic

 

Seizures (he was tested for epillepsy but not found to have it)

 

severe eczema (from topical contact with milk... when he was ordinary forumula if it ran down his chin or got on any of his skin he would have a local reaction with swollen red patches and eczema)

 

48 hours after illiminating everything related to dairy from his diet he slept well and was much more attentive and focussed. It took a few weeks for the bowel problems and vomiting to stop but they did eventually. The eczema lessened but didn't go away entirely and he still has it now.

 

Everyone has a different experience. I tried it out of pure desperation. Unless there is a serious difficulty with behaviour or hyperactivity you might not notice a difference so much, or it probably wouldn't be so dramatic.

 

Lauren

Edited June 15, 2006 by Lauren

[Elouise]

I tried Nathan on the CF/GF couple of years back. His behaviour was so challenging ANYTHING was worth trying .

Lets put it this way even we had been driven to the point we offered to hand him over to social services nay BEGGED them to see if they could shove him somewhere just so our families frayed nerves could unwind enough to have another go.

 

It gave him something to do for a couple of weeks but it made absolutely zip differance to his behaviour and ate lots of dosh to do.

*ah well it was worth trying*

 

Sam however is slightly differant. As a baby he screamed pretty much 24/7 did not sleep, his skin looked permantly red and blistery. At 3 months his eczema and lumps and bumps were so bad he was covered in icthabands. By 5 months I had managed to push hard enough for an appointment with a peadiatric dietician at the regional childrens hospital.

She took one look at Sam and slaped him straight onto a total exclusion diet (rice, organic chicken, organic lamb, pears, carrots) and Prosobee. Sam is allergic to casein in milk. He had tests and challenges run at the hospital and was found to have an unbelievably high IgE count and to be allerigc to nuts, severely intolerant to eggs, fish but NOT gluten.

If Sam had anything with milk in he would projectile vomit and break out in hives with swollen lips, thankfully he has calmed down a tad and merely throws up and breaks out with a nasty itchy rash if he gets hold of something.

Sams CF/nut free diet is horribly limited by himself. It consists of toast & marmite and the occasional wheatabix (dry) granny smith apples ONLY, raw carrot, chicken, cucumber and maybe just maybe a chip or two.

I do know that for those who do benefit from the CF/GF diet there is an absolutely AMAZING improvement and you can tell within nanoseconds if they have eaten something they should not it would be intresting to see what the results show for this group compared to the entire test group.

[Stephanie]

Ah you see, I don't really have any issues like that, so maybe I will put the idea on hold.