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Allergies and intolerances

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Original poster

Eliminating wheat from DS's diet and his behaviour has been....

31 replies

Chandra · 22/10/2006 21:46

soooo challenging!

I don't know what's going on, he seems to have bouts of hyperactivity just before bed and after lunch. He has become very challenging, rude and misbehaved. The only thing that's new is that we are avoiding wheat, and glutten where we can.

Is this behaviour related to the elimination diet? No other things have changed lately apart from his diet diet.

OP posts:
Blossomhowl · 22/10/2006 21:47

Things get worse before they get better, so I have been told.

I guess it's almost like withdrawing?

Schokofruhstucksflockenhasseri · 22/10/2006 21:51

interesting. So now he goes hyper after eating?
My children have this energy spurt just before bedtime. Not sure about after lunch because it is less defined.
Maybe your ds was a bit lethargic or tired when he was reacting to wheat, and you are now seeing the real ds?

Original poster
Chandra · 22/10/2006 21:54

Thanks for answering Blossomhill, I was wondering if they were withdrwawal symptoms.

Do you know if these symptoms last for long? or of anything we can do to ease the effects?

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Schokofruhstucksflockenhasseri · 22/10/2006 21:54

By the way, from my own experience giving up allergens like wheat in my early 20s: I initially felt extremely good (compared to feeling crap before).
When I first felt good, it was so wierd, because I had been feeling ill for so many years, so I probably went hyper too.

Original poster
Chandra · 22/10/2006 21:58

I would say about 1-2 hours after eating. He is also allergic to milk and since we removed it we saw a huge change on his activity levels but I'm not quite sure if it was the milk that was sedating him or if it's the rice milk that is making him more active... but not as active as lately!

I'm substituting wheat with corn (for pasta), and his cereals are now mostly oat based but still, he had eaten thse things regularly in the past without such after effect

OP posts:
Original poster
Chandra · 22/10/2006 22:00

It could be...he has been behaving badly but he seems to be enjoying it quite a lot!

OP posts:
PinkTulips · 22/10/2006 22:03

chandra, took wheat out of dd's diet last week and she veers between being calmer and better behaved than she's ever been to getting super overexcited and hyper. it's mostly calmer though and she isn't throwing the massive tantrums and having mood swings now so it's definitely and improvmnt.

i think Schok is right, they proably get over excited at feeling well for the first time in a long time

how are you finding the wheat free life besides that?

Original poster
Chandra · 22/10/2006 22:12

Thanks for sharing that PinkTulips, how long have you been excluding wheat?

As for how I'm finding the wheat-free life.... considering he can't have soya, fish, dairy, eggs, etc I can say that I'm dealing day by day with it with the enthusiasm of a shipwreck survivor [sigh]

OP posts:
Original poster
Chandra · 22/10/2006 22:12

opps, have just seen that you said you removed it last week

OP posts:
tracykb · 22/10/2006 22:24

My DD1 was diagnosed with coeliac disease in May and within 2 weeks of eliminating gluten from her diet we had a different daughter. She is 3 and for the majority of her life had been lethargic and clingy with no energy to even walk around the park. We hadn't had many discipline issues either. Once she was gluten-free she had the energy to be naughty and started going through the 'terrible twos'! But she is so much healthier and so much more fun to be with. She didn't suffer any withdrawal symptoms, just turned into a normal 3 y.o.

Original poster
Chandra · 22/10/2006 22:36

The terrible twos revisited... that's what I have been having these days: tantrums because he wants something that waves off as soon as I give it to him, just to start crying as soon as I take it back. Crying because he wants me to open the baby gate which he had not problem in opening or closing before, and he needs company to go to the toilet (argh) not to say that this morning he went into my bed and kicked me on the back because he wanted a glass of milk Even the dogs have gone into hiding...

The naughty step has had such a busy day today...

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PinkTulips · 22/10/2006 23:33

sounds like he's discovering what its like to have energy!

poor you having to cope with that diet! i'm moaning about just milk and wheat! and i've got my fingers crossed that she'll grow out of the milk intolerance. so he can basically just have meat, fruit and veg right? and some cereals? eating out must be a barrel of laughs!

threebob · 22/10/2006 23:54

I had terrible mood swings when I gave up gluten - they lasted about 2 weeks.

Original poster
Chandra · 23/10/2006 23:21

Not exactly "a barrel of laughs", far from it.

I so much wish we did not have the need to take/send a lunchbox any time we go out, and it brakes my heart to hear DS explaining to other children why he can't have something but he will when he is older (when we know he may not ).

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Original poster
Chandra · 23/10/2006 23:22

In a more positive note, he is behaving better today, though he had quite a long nap which was quite unusual.

OP posts:
threebob · 23/10/2006 23:25

I had a lot of sleep too - it was a hard adjustment for my body to make.

On the plus side - if you can remember feeling that crap it's a powerful incentive to stay on the gluten free wagon!

Original poster
Chandra · 23/10/2006 23:42

I think what will keep me "incentivated" is the will for this behaviour not to repeat in the future , no, just kidding... I thought wheat was not affecting him but given the last few days I would say it was (we were told of the wheat allergy in his last test).

Now, back to the board about his diet, I have to learn so many things about how to work with wheat/glutten free flour (BTW Threebob, I went to search for the flours to mix you suggested in another thread and found an already mixed glutten free flour. However I might be doing something wrong as the muffins almost could bounce! )

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Jimjams2 · 24/10/2006 09:01

Your son's reaction sounds similar to ds1. Have you had him tested for a leaky gut?

Original poster
Chandra · 24/10/2006 20:12

Permeability problems were sugested by the nutritionist who first saw him 18m ago but in all the pile of other allergies developing that was left to the side. I'm starting to wonder whether we (and the doctors) should have paid more attention to that

Or probably they did... I have a copy of the test results he had last year but apart form the area of allergies, I have not a clue about how to read it. We were told he didn't have coeliac disease, and acording to it, his IgA for glutten were well within the normal, therefore no further test for wheat until a couple of months ago, but even when the test was positive the doctor told us to ignore that test result as we had not seen any "proper" reaction to wheat).

Does any of this sounds like they were searching for a leaky gut? I have tried to find which test are used to diagnose it in the web but have not found anything yet, will continue searching once DS goes to bed.

Many thanks Jimjams

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Jimjams2 · 25/10/2006 08:45

Well the ARU at Sunderland test for signs of leaky gut- given your nephew's diagnosis it did make me wonder if it might be an issue. It's quite common for relatives to test positive for a leaky gut even if they're not autistic. (DS3 for example). They probably wouldn't particularly recommend you testing - if keeping gluten out helps they would say keep it out! However it might just provide a bigger picture for you. We had ds1 and ds3 tested at Sunderland, both have a large IAG peak which probably means a leaky gut. Certainly both appear to be better off gluten (and in ds3's case cow's milk). We didn't test ds2 but he was strictly gluten free until over 2.

Jimjams2 · 25/10/2006 08:46

The other test you could look into is a sigA test (not sure where from ds had one done by a nutritionist- it's a mouth swab). I think that gives an idea of the permeability of the gut as well.

Original poster
Chandra · 25/10/2006 12:13

Thanks for your answer, I was looking at the web site of the University of Sunderland (a web page about leaky gut) last night and although I couldn't find more specific info that could help me relate what I have in the test results, but that he is between the second and third.

The nutritionist didn't do the test but saw the results of DS's ELISA test and said that considering the high number of foods that he was intolerant to (98 out of 113 tested), it was likely that he had permeability problems.

The paeditrician said the same, hence the next set of tests. The test said he was fine with glutten (IgA Anti gliadin 3UA/mL, up to 15 UA/ml is considered normal ) but didn't test specifically for wheat which showed up in the third set of tests. However, out of the reaction to the removal of wheat, we have not seen a reaction to it that we could point to, but with all his allergies I wouldn't be surprised if we had been confusing it with the reaction to something else.

Have just found a web site about SIgA test.

Thanks again,

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Original poster
Chandra · 25/10/2006 12:15

sorry, don't know what happened in the first paragraph ... that's between the 2nd and 3rd stage of inflamed gut.

OP posts:
Jimjams2 · 25/10/2006 16:39

The types of problems that Sunderland deal with won't show up in those sorts of tests though. The basic idea is that if your gut is leaky then larger than usual molecules of gluten will pass through into the blood and across into the brain. These larger than usual molecules have an opiate type effect (hence the withdrawl effects- it;s like removing a gut). With decent digestion it may be that you don't get too many larger molecules than usual iyswim (add in a digestive problem and you would have bigger problems).

He might have that in combination with other allergic type reactions. You can't test for it directly as such though.

ScaredyCatMum · 26/10/2006 12:48

Hi Chandra,

No experience of this with my own DS1, as he's only 7 weeks old and being breastfed, but I am intolerant to wheat myself and can second the post below that I couldn't believe the difference in energy levels myself when I first came off it. Felt so energised after a night's sleep and never had the lethargy of before. So, it could be that you DS1 is reacting to this and it will calm down.

Also, it is commonly stated that people with a wheat intolerance find that dairy exacerbates it, so you may find that later on you will be able to reintroduce small amounts of dairy (unless he is specifically intolerant to this also) once he has been wheat/gluten free for a while. I believe I have also read that a leaky gut can stem from eating wheat/gluten when intolerant to it and that the gut can repair once the antagonists are removed. So, this should all improve once you perservere with diet.

I have to say thought that when I was diagnosed by nutritionist, I was off it for several weeks before I really felt the full effects so I am sure your DS's behaviour will calm down once his system adapts.

Good luck with it! I've been wheat free for 7 years now and you really get used to it. I'm also currently dairy free and wind-inducing vegetables free (DS has bad wind, so was recommended to cut these from my diet) while breastfeeding. Even though I know how much better I feel, I am looking forward to a pig out for a couple of days once I've stopped breastfeeding and it's only myself who'll feel bad when I eat the wrong things