Reintroducing Gluten - DD2's now a nightmare, how do I know it's the gluten?

[mumgoingcrazy]

Hello all, I don't post very often but I know lots of your DC are GF, or DF etc and wondered if you could help me?

DD2 was dairy free last summer for 3 months (as requested by BIBIC), it made no difference so she went back on it, although still not given very much. They then advised me to make her GF. It's been 7 months now, I didn't think it had made any difference at all so BIBIC said to reintroduce it again, however our retained reflexes therapist said to keep her off for just a few more months whilst we were at a crucial point in their therapy. This week she has said to start reintroducing gluten again so yesterday I gave her a little bit of cereal and then GF for the rest of the day. Yesterday pm she was very teary and emotional and last night she screamed for 2 hours, but didn't seem to be awake, more like she was doing it in her sleep.

The issue I have is that I don't know if this could be because she had some gluten yesterday, or that it's our new retained reflexes exercises (which does have an affect on her sleeping anyway) or was she having a bad day anyway (which we do get).

She is GF again today and figured I would wait a few more weeks until we were in a good patch before reintroducing it again.

My question really is, how do I know if these emotions are gluten related, and what kind of behaviour does your DC display if they accidentally have some gluten?

TIA
x

I can't remember. If you contact them and ask, they'll tell you.

It'll be hell on earth, but it is a short time out of your - and more importantly her - life. It's worth it.

Or, you could just say that it is clear that she reacts badly to it and keep her off gluten and not bother with the test.

I think I know deep down she needs to stay off gluten, I was just really hoping I wouldn't see any change when we reintroduced it as it's such a pain but as I said before it's been 5 seperate days and apart from 1 she has reacted on each.

I think I'd like to do the test to know for sure, and also whether she should be DF too. We've done DF on a seperate occasion, but it made no difference but am now wondering if we did it for long enough. We did 10 weeks.

I don't know about cf, but gf gets MUCH worse before it gets better! - and silverfrog has just given me hope for the future re poop!

If you would like the test, then you'll have to cope with the behaviour again and go through the withdrawal again, but if you take the long term view, it'll be worth it.

mumgoingcrazy - I don't know how long your dd would need ot be on gluten again. SUnderland say that you should be eating a normal diet when sending off for the tests (ie not gf), but not sure of timescale.

Hecate: the miracle that happened re: dd1's poo did also coincide with a change of bread. but it literally happened overnight.

I'd given up hope of her ever having normal poo, without significant other tinkering by way of enzymes, or supplements, digestive aids etc. but here we are now.

but, as I say, it was a good 4 years after going gf.

now, even eating something that slightly disagrees with her - eg she is not good behaviourally with apples - does not effect ehr bowel movements. every morning I go to get her dressed, not believing it can still be true (she is not yet night trained, but we can now start to tackle this), expecting the same old manky messy, rancid mess in her pyjamas, but it seems to be continuing for now

What do you mean GF gets much worse before getting better?

I'd love it to sort DD2's poops out too

generally, when you withdraw gluten and/or casein, the behaviours get worse for a short while as the child goes thorugh withdrawal.

dd1 was a terror (and this form a previously placed, passive child) - lots of biting, screaming, general struggling and fighting.

it went on for 3 weeks or so, and then she calmed down.

I mean the behaviour takes a turn for the worse.

Or at least it did here.

I was told it's like addicts going cold turkey

Silverfrog - I can't tell you how happy it makes me to think there is hope.

My eldest has such terrible problems. He gets so upset. He even asks me why his bottom doesn't listen to him. I'd just about given up and thought that he was going to have this problem for ever. I am really happy to hear that it may yet come right.

oh, hecate, that is

have you thought about/looked into extra digestive support?

enzymes are supposed to be quite good, and of course pro-biotics etc.

sneaked downstairs ne morning foraging for breakfast (it was the weekend, and we were having a lie in - until 8am!).

dd2 as the ringleader had it all sorted out - she went into the larder with a stool and a basket (probably thought she wa sittle red riding hood or summat).

and stood up on her utmost tippitoes to reach the: chocolate brownies. (dd2 is dairy intolerant so no good for her either!)

so, they both stuffed down a few before I noticed the unusual peace and calm upstairs.

they were chock full of gluten (naturally), casein, loads of preservatives and other manky shite (I do like a nice bit of manky shite every so often )

anyway we force fed gave dd1 some enzymes to mitigate the inevitable issues.

she did erupt a little behaviourally, but nowhere near as bad as we were fearing, and yet again, her bowels were fine

so that may be worht a look into, perhaps?

Thanks both of you.

So far when I've reintroduced her, I've literally given her some breakfast cereal, or bread for breakfast then GF for the rest of the day and this is what she's reacting to. Usually by the next day she's back to being herself again.

I can't think of a good time to do this, I wonder if I'll just keep her GF and be done with it. I think I know she needs to be off it really.

The problem is, his paed insists that he is choosing to do it because he likes it . He won't accept it is a physical problem. He says it is psychological.

What do you give your daughter? is there anything that is non-prescription?

I managed to pursuade my old gp to write them up for GF food on prescription after I paid for the test from the uni of sunderland and I have come to realise that that is quite rare for children to get gf food on prescription for asd related intollerance. But he's retired now and new gp is very much 'talk to the paed' - and paed is very much 'your son chooses to shit himself cos he likes how warm and squishy it feels'

LOL Hecate, can't believe your pead thinks this!!!

Cross posted with you silverfrog. How do you know what enzymes to give and where do you get them?

oh yes.

probiotics and enzymes are self-administer job.

Karen de Felice has a good book on enzymes. I haven't got around to doing it fully with dd1, but dh uses them for his dairy intolerance and reports good things.

the pro biotics we used are form a company called Biotics research, I think.

And the enzymes were form Houston Pharmaceuticals (or similar - got them form Mandi Mart)

actually, Mandi Mart has a good section on it, iirc, with a link to an info sheet etc, hang on will find a link.

here

the enzymes used are natural digestive enzymes, and are considered "safe" ie no maximum dose. they come in various sorts - chewables, capsules, etc - you'd need to see what is recommended for gf/cf (can't remember which ones are on the shelf, and too lazy ot go and look, sorry!)

x-post, mgc.

hopefully, that is the info you were after - otherwise give a shout (although am no expert - have been reading and pondering a lot though, and the brownie incident was an emergency )

That's great, thanks very much.

She has probiotics, but I'll definately look into enzymes.

I know. It is so frustrating.

He is very difficult to deal with.

He asked me how he sleeps. I told him about his erratic sleeping and he said "but he's sleeping better?" I said no, he isn't and in his letter to the gp he said that I had said that my son was sleeping better.

I KNOW my son has a physical problem.

Pebbly poo sounds like maybe not enough liquid in the diet?
We use probiotics and have tried enzymes but not consistently, our neuro said who wouldn't recommend enzymes instead of gf, so we are hoping to restore enzyme functions for non gluten foods and keep gf.
Zinc is linked to various enzymes deficiencies (found out from hair test he was zn deficient) and there was another step-improvement after adding Zn supplement a fe months later.

With my ds we did go briefly dairy-free, but after going gf have added dairy with no prob, I would say dairy lite, so trying not to overload, but no restrictions as such. But we don't have cereals in the house now at all, I think corn could be problematic for some and I would agree on it getting worse b4 getting better, my ds was tick-ing, had prolonged fungal infections and echolalia when we went gf (plus some uncooperative behaviour).

Thanks nighcat, where did you get the hair test done?

I'd say we were dairy lite too, she doesn't really have that much.

Definately not enough liquid in her diet, she's a terrible drinker. We have to give her lots of juicy fruits, and liquid in her food, soups etc. She will never ask for a drink, it's up to us to give it to her and usually make her. She does however like to drink bath water, and so we let her figuring it's liquid and better than nothing

Will definately look into enzymes. She starts school in Sept (special unit) and I really want to get the the best I can before she starts.

Sid my ds hair test at foresight, see forms where there is a form for children (they don't just do pre-conception).

Soups etc sound great, thats what I have also been doing. I make jellies too, although I am annoyed that instead of sugar they now use glucose-fructose syrup, shame.

forgot to say, Biolab in London also do the hair test

One small thing I thought of when reading your post about drinking bathwater was - what about trying epsom salts in her bath? (They are supposed to be calming and especially beneficial to children with ASD which is what our DD has).

The added benefit for your DD is that epsom salts comprise magnesium sulphate. An important mineral which also has laxative properties so might help with the constipation issue. Unless large volumes are being swallowed I'm pretty sure it's okay to drink a bit of bathwater with it in (my DD certainly does regularly!).

If you're interested there's loads of info on enzymestuff.com.

That's a good point ovenchips, in fact the tub I have talks about taking it internally rather than using it in the bath.

Personally though I would have to be quite desperate to take it internally and prefer the spa-like idea of bath salts for me and my ds (didn't know about them when my ds was little and badly constipated due to dairy overload, but diet had helped then).

Thank you both, We do use Epsom Salts in her bath about twice a week (I usually stop her drinking the water on these days). My box doesn't say anything about using them internally, what does yours say about it?

Thanks for the link, I'll have a good look tonight.

I'm wondering if I let her drink the bathwater with the salts in whether it'll loosen her up a bit. She has a very high fibre diet, luckily she eats everything so I'm sure it's down to not drinking enough.

Thanks again

This is the tub I have got, bought at the local chemist not on internet E/Salts
However, it says that it's not recommended internally as laxative for under 12s. For over 12s it says 1-3 x 5ml teaspoon dissolved in water as required.#
It looks like it can be used externally for children as it says for pain relief (sprains, bruises and boils) - adults, elderly and children: disolve one tablespoon in a small cup of warm water and apply with lint or cotton wool to the affected skin.

Personally I wouldn't worry though about them in a bath or even drinking the bath water as it would be like going into sea or similar, probably healthier then chlorinated swimming pool

I have a huge bucket of the stuff but it doesn't have any instructions on it.

The general advice is to be wary of drinking epsom salt bathwater as it may cause diarrhea (nothing more sinister than that though). It's essentially just a weak solution of magnesium sulphate. I had been thinking that nudging things in the looser direction would be a happy side-effect if your DD was having a liitle drink of the bathwater! I can't actually stop my DD from slurping it when she as a bath.

The website I referred to is all about the benefits of epsom salt baths for ASD but as you're already giving them prolly nothing new there.

Other ideas are to supplement with magnesium orally (my DD also has this) and transdermally (Mandi Mart do a cream).

Best of luck.

That's great, thank you both of you.

DD2 is only 3 so better not give internally then!

I don't really understand as she has good wet nappies so can't be too dehydrated yet poo says otherwise