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Ollie's Mom

Member Since 12 Jul 2011
Offline Last Active Jul 03 2013 12:03 PM
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Topics I've Started

Would Testing Be Worthwhile?

10 January 2013 - 06:10 AM

Although I suspect I already know the answer, I'm not really sure why I'm asking. But I was hoping someone might have some advice I hadn't thought of.

My son is almost 2.5 yo. After the introduction of solids at 6 months, he started to slide down the weight percentilrs (90+ down to 50 over a 3 month period). His bm's were very loose, very frequent, and a nasty pale green with a sandy texture. I am self diagnosed (after years of suffering), so my immediate thought was gluten. Eliminated it from his diet and things improved, his weight went up, and he got down to 2-3 bm's per day down from 8+ at its worst.

His poo was never very solid, and since he was in daycare (although on a gluten-free diet there) we had assumed he was just getting cc somehow (highly likely) but he was happy and growing etc.

He moved to a new room in the daycare centre and his pools got worse. We assumed the staff wasn't paying as close attention to his diet as the previous teachers. I at this time also suspected that he may have an issue with dairy (dark circles under his eyes, lethargy after drinking milk, then vomiting sometimes after having milk). I had him home for 1.5 weeks over Christmas, and kept him strictly gluten-free and dairy free. After about 1 week he had the most normal pools of his entire life.

Two days after going back to daycare, his poos became horrendous (worse than before). If he eats an orange at noob, he's pooping the orange out by4 pm, totally undigested. To me he llooks like he has a headache. The dark circles are back.

I'm thinking of asking my doctor to run a celiac panel blood test on him, but he has been on a gluten light diet since he was 9 months old. But minor symptoms seem to have persisted all this time.

Do you think the testing is worthwhile or a waste of $$? I am in Ontario, and for whatever reason our government health plan won't cover celiac testing.

TIA

A Request For Those Who Suffer From Gluten Ataxia

16 November 2012 - 12:08 AM

Hi there,

I have a request for those of you who have suffered from gluten ataxia.

I have a friend who has (according to doctors) "idiopathic ataxia", but I suspect it may be gluten related. But of course they don't think so, because his blood tests were all normal (I don't know what celiac specific tests were done, only that he was "tested" and found to be fine). Same with brain scans - everything looks fine. So fine he can barely walk with a walker and sounds like he's drunk when he tries to talk. The way things are progressing, it does not look promising. At all. He's in his 50s, and onset of symptoms was approximately 5 years ago.

I had suggested he try a gluten-free diet to see if it would stop progression and /or help to reverse some symptoms (the dream scenario). He has not. He's said on occasion that he has tried doing a"mostly gluten-free diet", but as we all know it's all or nothing. And to be honest, I'm not sure I believe he's even tried that.

So now on to my request: for those of you who have seen relief from ataxia by going gluten-free, could you relay your stories to me so I can send them on to him? Either on this thread or via PM? If you pm me, I can give you my email addy.

TIA