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SN children

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Original poster

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

53 replies

mumgoingcrazy · 03/02/2011 13:10

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

OP posts:

pagwatch · 03/02/2011 13:24

DS2 is emotional ,gets very giggly then gets teary and upset. he can have dark circles under his eyes. he very occasionally bites his hands.

there is no total way to know. But if she reacts after introduction it is a big red flag which you should take seriously.

have you had the sunderland test done?

nightcat · 03/02/2011 13:48

I have read just recently on a gf blog an interesting comment in ref to gluten by a dr/nutritionist - that the healthier the body gets the stronger it will react to the offending substance, this made sense to me.
My ds is g sensitive, his reaction is to shut down, he gets a kind-of cough (silent reflux), his speech slurs and he can have a blank look about him.

Original poster

mumgoingcrazy · 03/02/2011 14:05

Thanks both of you.

Thinking about it, she was also a bit giggly before bursting into tears. Even my DD1 (NT) laughing made DD2 cry.

I havn't done the Sunderland test, how would I go about it?

She is GF again today so hopefully she'll calm down, although the new lot of retained reflexes exercises might unsettle her again. I suppose if she is GF and she's unsettled I'll know its the therapy not the gluten. probably shouldn't have done both at the same time

nightcat, that makes sense. DD2 has been off gluten for 7 months so I guess that gives her time to get healthier and stronger.

Thx again

OP posts:

nightcat · 03/02/2011 14:12

We will be embarking on retained reflexes therapy soon, can I pick your brains, do you get much in a way of negative responses with the exercises?
For us it's been mainly diet changes and mostly very positive.
BTW, when glutened, my ds sometimes gets headaches.

Original poster

mumgoingcrazy · 03/02/2011 14:22

I'm not sure whether DD2 has a headache, she isn't able to tell me if she's porrly or hurt yet. I can't wait for the day when she can, it'll be a lot easier.

I'm not sure I can accurately answer your question re RR, the reason being that we do a lot of therapies so it's difficult to know which one is doing what IYSWIM.

We've been doing RR since September and she has made AMAZING progress, and the first 2 months we had no negative responses at all just fab progress. In the last 6 weeks however we've had a lot of sleep disturbance which the therapist says is a result of RR. It's waking up her neurological pathways which used to be passive, but to ride the storm so to speak as the outcome will be that she will be in a much better place.

The therapist describes things so clearly that it all makes sense, and also when giving a new set of exercises she will tell me some of the things to expect, which I find really helpful because when we then get a bad patch or bad nights I know why.

HTH

OP posts:

nightcat · 03/02/2011 15:00

thank you mumgoingcrazy, can't wait to get started, we are on the waiting list, my ds is a teen though and have been told that it might take longer to unravel the pathways

Original poster

mumgoingcrazy · 03/02/2011 19:46

I hope it helps your DS, I have no experience of it on a teenager but it certainly works on a 3yr old

Would love to know how you get on
x

OP posts:

IndigoBell · 04/02/2011 11:55

NightCat - we had no negative responses at all. Just amazing progress. DS is 10.

nightcat · 04/02/2011 12:45

thanks Indigo, I can't wait to get started :)

thederkinsdame · 04/02/2011 12:50

Sorry can I hijack briefly and ask how did you guys find out about retained reflexes? Have just looked at how it manifests and it seems very similar to way DS behaves (4 with ASD) can you tell me a bit...? Thanks!

IndigoBell · 04/02/2011 18:14

Ummmm. Mostly stumbled on it here.

Places that do it are:

Sound Learning Centre

Hemispheres

Plus there is a website of all providers, but I don't know the link. Maybe someone else will be along shortly...

If you can afford it, it is really worth considering.....

thederkinsdame · 06/02/2011 20:33

Thank you IndigoBell. i hope you get your diet issues sorted out. I often wonder about DS and foods, as he craves carbs and often reacts to food colourings... I've ordered Sally Goddard's book, so I think it will tie in nicely with something we're looking into re. orthoscopics (for visual problems)

IndigoBell · 07/02/2011 09:35

TheDerkinsDame - if you're concerned about visual problems - have you had your child checked out by a behaviour optometrist? They check for a wide range of problems including orthoscopics..... And they offer vision therapy which can cure a range of problems with the muscles in the eyes....

1 Optician told me DDs vision was fine.

1 Optician told me DD needed a colour overlay.

But a Behaviour Opometrist worked out what was really wrong with her vision, and after 6 weeks of vision therapy it is now cured....

IndigoBell · 07/02/2011 09:36

Ooooh, and I remember a US vision therapist posting on this board saying she had never met a patient who needed vision therapy and didn't also have retained reflexes....

(DD also has retained reflexes)

thederkinsdame · 07/02/2011 11:36

I'm convinced the two things are linked, even with the little I've read so far. Will let you know how we get on, as we are having DS's orthoscopic assessment in a couple of weeks.

Original poster

mumgoingcrazy · 22/02/2011 20:09

I know this thread is old now, but didn't think it was worth starting a new one.

When you've started to introduce Gluten, do your DC sometimes get hot?

TIA

OP posts:

nightcat · 25/02/2011 17:48

yes to some extent, my understading is that gluten feeds the yeast-type bacteria in the gut so they flare up, in fact it happens to me too

Original poster

mumgoingcrazy · 25/02/2011 20:03

Thanks nightcat, we've done another couple of tries of introducing gluten since I last posted and she's been whiny, tearful and nothing is right. It's been 5 single days I think it's been too many times now for it to be a coincidence.

I think she's going to be gluten free forever.

out of interest, to do the Sunderland test, does she need to be on gluten to show up the intolerance?

OP posts:

nightcat · 25/02/2011 21:51

I think so, but maybe someone more knowledgeable comes to answer

HecateQueenOfWitches · 25/02/2011 21:55

Yes, she does. You would need to put her back on it for that.

It really does sound like she is reacting badly to it.

When mine have accidentally had gluten you can tell my youngest becomes giddy and really gibbery (iyswim) much more stimming and babbling. My eldest tends to get more aggressive.

Basically, you see a bit of how they were before we took them off gluten. My youngest totally locked away and my eldest bashing the crap out of you.

HecateQueenOfWitches · 25/02/2011 21:57

oh, and my eldest especially, loses what little control the poor bugger has over his bowels instead of seepage and a little poo, you find he has defecated completely into his pants.

He has got terrible bowel problems. His paed says that he "likes the sensation" bollocks. he is totally humiliated by it.

sorry. always gets me totally ranty, that does

ds2 has foul smelling wind if he has gluten. REALLY foul! Clear the room in 2 seconds flat!

silverfrog · 25/02/2011 22:18

Hecate,

just to (hopefully) give you a little hope - dd1's bowels were awful, just awful, ven after going gf.

just this last year (since Sept last year, so last 6 months really), she has, for some reason completely turned a corner.

this is 4 years after going gf

but, all fine now, and she has even toilet trained herself for poos (had never done a poo on loo before, and then just 2 weeks ago announced she wanted to try, and she hasn't looked back!)

it can be a long long road, but going gf gives the bowel space to heal, I think.

HecateQueenOfWitches · 25/02/2011 22:32

really? oh that would be great.

It affects him so badly.

Thanks.

nightcat · 26/02/2011 12:29

It takes far far longer to recover from gluten symptoms than drs say, in fact one thing is the healing of the gut and completely separately is the overall improvement in terms of learning
The good thing of gf diet is that you increase nutrient density (as long as you don't chose to live on substitues).

Original poster

mumgoingcrazy · 26/02/2011 20:00

Thank you.

DD2 really suffers with constipation and only produces pebbles really, and the gf hasn't really helped this much. Do you think if we keep going it'll improve with time?

Also, re giving her gluten to do the Sunderland test, how long of having gluten do I have to do before I can do the test?

Her behaviour is so awful on Gluten, I want to have to do as little as possible.

Thanks ladies

OP posts:

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