anyone had their child on GF diet and resorted back to gluten?

[ghoulsforgodot]

DS (4) has been on GF diet for over a year now. He is also on casein lite. At the time it really calmed him down. He is now constantly on the go and has a very short attention span so the reasons I put him on the diet in the first place are no longer helping if you see what I mean. Has anyone else stopped the GF diet and what happened? Thanks x

The GF diet did nothing for ds. We kept to it rigidly for over a year then stopped because there was no point in continuing.

Having said that, I still felt it was worth trying because at least it was a box ticked and I know now that gluten wasn't an issue for him, despite the Sunderland test results.

hey streaks did you see any change at all at first?

No, nothing at all. Mind you, he was under a huge amount of stress at school so it would have been difficult to tell if there were any benefits, because the anxiety would have outweighed them iyswim. But even during school holidays he was no better.

You could try taking a break from the diet, just to check if there are any changes. If you see a noticeable difference (negative) you could go back to the diet, but if not you could stop it altogether.

I was quite anxious about stopping, tbh, because I knew that if it HAD been helping him we'd see a backlash once he started eating gluten again, but there was no change.

thats what worries me. Thanks Streaks

In the end, that's the only way you can really test the diet's effectiveness. But at least you'd know, wouldn't you?

I arranged for ds2 to go partially gfcf when he was very stressed and at the same time as deregistering him from school.

The pains he used to get in his upper spine and joints went away. After a few weeks/months I stopped worrying about gfcf and went back to normal food.

There was no recurrence of the spine and joint pains. I think in retrospect it was the stress causing him to react to gluten and milk products. As the stress reduced, his body became able to deal with those things again.

thats interesting milou. I think his behaviour improvements could be down to developmental stuff. I suppose I could introduce a bit of gluten and see what happens.

We tried GFCF for nine months and didn't notice any benefits or any difference when we stopped. Disappointing but as Streaks said it was something we had to try.

I know LOTS of people whose kids with ASD have been strictly GFCF for several years and then dropped it later on (my DS is now 15). Mostly, if they did see benefits at first they felt they no longer could tell if there were continuing benefits and, as time goes on, the social difficulties it causes and the cost become harder to sustain. With kids with deep social difficulties, being on a strict exclusion diet makes things even harder. it also gets harder as they get older and attend more clubs etc and are with more different people. Even those who had clear bowel problems and severe pain seem to have "outgrown" it. If you DO give up, don't tell too many people, otherwise it will be very difficult to be certain if there are genuine changes or not. I have to say, I have always been very skeptical about the diet for many children, not for all mind you, but I feel it is something that often helps parents more than children. I've been out with kids over the years who are with tutors who tell a very different story about whether the diet is as essential as their parents often believe. No doubt that will not make me popular!

Davros, thats really interesting. I know what you are saying with regards to it creating problems in social situations (birthday cake being the most common one for us at the moment).
When you said not to tell too many people if we give up-not sure what you meant. Is it because you reckon everyone would then have an opinion on it?
The only hesitation I have is because he calmed right down when we first put him on it

No, not because people will have an opinion, although they probably will, but because you will get more unbiased feedback.

DS1 was gluten free for years. We used to see very obvious difficult behaviours with infringements (such as headbanging hard enough to bruise) but those stopped.

DS1's guts also got a lot better after a few years. We used to get constipation and overflow and very loose bowels. All very normal now.

So we stopped slowly and haven't see any problems with that.

I suspect ds1's gut problems were largely caused by overuse of antibiotics (he had a lot in the first 2 years) and I suspect we managed to repair that damage, then once his guts were better he no longer needed the diet.

He used to have very obvious changes though when he had gluten. It was always very clear.

I was told that going gf for at least 12 months allows damaged guts a chance to heal and therefore many people that have previously had problems with gluten can reintroduce it slowly with no ill effects.

Ds1 was gf for four months, then had to put him back on it for several months before his coeliac test. We noticed a big difference behaviourally between him gf and eating gluten.

His coeliac test was negative, but we were told he is most likely non-coeliac wheat intolerant.

Unfortuately, since putting him back on gluten for the test, he has become extremely resistant to eating the gf food. So we now limit the amount of wheat and gluten he eats, keeping him pretty much wheat/gf, but allowing him to eat wheat at birthday parties and other social occasions. Not ideal, but at least he'll do it without fighting at every meal.

We can always tell when he has eaten some wheat/gluten as there is a big change in his concentration, behaviour and there are also physical changes to his skin and bowels.

Ideally I would like to keep him strictly gf for at least 12 months, but I have to balance that with his happiness and anxiety levels and there's just too much else going on with him at the moment to force the point.

I think it is possible for gfcf to have genuine benefits early on and then for an individual to "repair" enough to no longer need it like saintlydame's DS, several of my friends think this has happened.

I also think there are those who do not really need it at all but their parents and others feel there is a benefit when maybe there isn't. I have been out with kids whose parents are certain that any infringement causes all sorts of problems but, sometimes when they have managed to get hold of something they shouldn't or someone carelessly lets them have it, if the parents are not told they don't see the issues they otherwise think would be there.
Then there are those with severe gut problems, pain and other issues who do need a restricted diet, who wouldn't try changing diet in that situation?
I also know quite a number of kids who have been on gfcf who develop a poor relationship with food and have very bad diets, I only know one who I think eats well. Not to say that the other kids, who are not gfcf, eat well and do not have eating/food issues, but gfcf rarely seems to result in better general eating.

Going to try it for def-today he was at a party and I was going to let him eat something gluten-y but he decided he would rather eat the grapes!!
Oh well. I will soon see if it makes a difference. He used to have scarlet cheeks which I think is a common ailment of gluten intolerance.