I know I should be pleased...

[Dottydot]

We've just had the coeliac blood test back for ds2 - it's come back negative, which is brilliant - it's indicating he doesn't have Coeliac and I know I should be really pleased, but I was sure it was going to be positive.

He's like me in that he's big - tall and very good weight, but he's permanently tired, has dark circles under his eyes and does get a bloated tummy from time to time.

His iron levels came back at 11.5 which technically isn't anaemic (that would be under 11), but isn't far off.

I still get the feeling he might be, but I really really don't want to be over-anxious Mum. The clinician who did the blood test was reluctant to do it in the first place because he's not thin/small - but that's not the only symptom of Coeliac.

But I feel like I shouldn't/mustn't make a fuss because the blood test has come back negative. I also know that you can get false negatives!!

Anyway, just found out and wanted to get it out of my system. Have talked to dp and we're going to get some child iron supplements and keep giving him broccoli (bizarrely, he loves it!).

Aaarrggghhh!!

[CheesyFeet]

Poor you & poor ds2

Sometimes a positive dx is a good thing as at least you know what you're dealing with. Not knowing is the pits.

I don't know much about this sort of thing, but could he have an underactive thyroid?

[Dottydot]

Funny you should say that - because I've got that as well, and the two conditions are linked, but the doctor refused to do the blood test for it!!

I'm so confused. I'd got all psyched up for it to be positive - I was already going through feeling guilty for passing it on to him, and thinking about how we could change his diet as well. I was also almost relieved it would be positive - in that we could work at making him better...

He's not really really poorly or anything, just constantly low/tired. But very loud and cheerful with it, so it's easier to cope with and not so obvious.

Sigh.

[CheesyFeet]

at the doctor, can you take him to see a different one?

[foxinsocks]

what other tests have they done?

re the iron - I think that people react differently to iron levels. e.g. mine is always just below where it should be but it makes me feel AWFUL. However, I know on the face of it, my actual iron figure is not that low (given how bad my symptoms are, you'd think it would be lower iyswim).

[Dottydot]

Just a full blood count and EMA (Coeliac) blood test.

I honestly don't want to be an over-anxious parent, but I know he's not 100% and kind of never has been - but we don't take him to the GP often - he's been maybe twice and he's nearly 3, but he's always got a cold/cough/very enlarged tonsils - even the GP said his tonsils are very big recently when I took him because he had a particularly bad chesty cough and he's got an inhalor for when it's bad now. He just seems always run down - which was just like me, but I was very anaemic and then had the Coeliac blood test.

So maybe it's just coincidence and he's got a virus or has had a string of them and it's the usual toddler-type stuff...

[foxinsocks]

rabbitrabbit is going through something similar with her toddler atm (I'm sure she won't mind me saying)

have they tested him for glandular fever?

[foxinsocks]

also dotty, does he snore at night? if he has v large tonsils, they could be interfering with his sleep (don't mean to worry you unnecessarily - you'd normally have some clue because he'd be snoring).

also, does he cough at night?

(we had terrible trouble with dd at this age - she too had enlarged tonsils and bad coughs (turns out she was asthmatic) but only once the night time coughing was sorted and her tonsils started to be more in proportion did things improve.)

The doctor once asked how she had bashed her face - he thought she had 2 black eyes but that was how she always looked !

[foxinsocks]

oh and please feel free to ignore/discard my random thoughts - just wanted to throw ideas in the ring in case they hadn't been mentioned already

[Dottydot]

He snores and coughs all night every night and has done since he was born - we had to put him in his own room at 2 weeks old, he was so noisy... That's when I really do turn into an anxious parent - every night - his breathing sounds dreadful. We put a bowl of water in his room and he's got a burn-y thing from Boots which makes the room smell of Olbas oil.

I don't know - should I take him back to the GP?

[foxinsocks]

oh god yes dotty. Please take him back. Make a huge fuss about his disturbed sleep and INSIST on an ENT referral. Seriously. In fact, I doubt any GP wouldn't refer him if you describe his sleep.

[foxinsocks]

sorry - dotty, didn't mean to frighten you if I have done. It's just that I think, in your shoes, I'd want an ENT to check out his tonsils/adenoids and the snoring issue even if it's just to rule out possible sleep apnea and have them tell you whether it's likely his tonsils/adenoids need to come out.

If the inhlaer isn't helping his night time cough, don't be afraid of going back to the GP and asking for different inhalers. It took us a while to get the right combination for dd but I can't tell you what a difference it made to her life when she finally had a cough and snore free sleep!

[tatt]

sounds like some of his problems might be not getting a good night's sleep. Have you tried an air conditioner in his room in case he has a problem with dust mite? I've also been told that raising the head of the bed so that the child sleeps on a slope will help with post nasal drip. That could be contributing to the coughing.

Hope you get a diagnosis soon, it's easier when you find out what the problem is.

[Dottydot]

Foxinsocks - no, you didn't frighten me - I know it's an issue but hate making a fuss and going to the GP. His cot's already raised at the head end - has been for ages, and he has 1 flat pillow. We've cleared out his room as much as we can in terms of stuff which gathers dust in case he has got a bit of a house dust mite allergy.

Sigh. I'll take him I think.

[nearlyfourbob]

Check out Dr Gluten (do a google) in NZ for details of gluten sensitivity, false negatives etc.

[Chandra]

DS had a negative for the coeliac blood test, he also had a negative for glutten, but... he got a positive for wheat and many other things.

[stairs]

Just a note from your first message about him not being thin/small. This is a myth about coeliacs, some are thin on diagnosis, but more are actually overweight. They are not sure why, but this common misunderstanding about coeliac disease means that many people aren't diagnosed as doctor's rule CD out on a misapprehension. I was not thin, did not have the runs etc. I just was really, really tired, was bloated and had fertility issues (guess not an issue for your son!). Luckily my doctor had just been to a seminar on CD and therefore knew about the research showing that coeliacs are not always thin. Worth sticking with pushing for a test...blood tests can be wrong. Esp. if you have taken your LO off wheat on a hunch. Blood tests can only possibly show CD if you have been eating wheat as normal before the test.
Here is a link to the research about body weight on diagnosis if it would help your doc go back and check again:
hope it helps.