Should I take her for coeliac testing? DD has dropped centiles

[tinkerbellvspredator]

DD has a grandparent with coeliac disease (DH hasn't been tested), she has no obvious symptoms but I've just realised that she has dropped centiles on her growth chart. She does also say she's got sick coming up to her mouth, this seems to be mentioned in fits and starts so not sure if it comes and goes or it is consistent and she just doesn't mention it all the time - no idea if this could be caused by coeliac disease.

In her first year she tracked the 25th centile consistently, at her 2year 3 month check she was still on 25th centile for weight but down to 9th centile for height. She has now turned 4 and I haven't been measuring her since then but just have and she's below the 9th centile for height and weight.

I'm sure it could be absolutely nothing and she is now on track to be the same height as me (i.e. a shortarse), DH is average height so not tall.

If I took her to the GP do you think they would test her, and if not should I go private? My concern is just that if she does have it it would be better to catch it early both from a health perspective and accepting the change in diet.

[MsRainbow]

You've got nothing to lose by having her tested, it's just a simple blood test.
Your doctor should not refuse, your DD has a blood relative with coeliac disease and the drop in a centile along with nausea means she fits the NICE guidelines for being tested.
I got my DS1 tested shortly after DS2 was diagnosed even though he had no obvious signs and he tested positive. Looking back we now realise he had some mild symptoms which would have got progressively worse over time. DS2 was quite ill when he was diagnosed (we had no previous family history so had no idea what was wrong with him) and I'm relieved DS1 didn't have to go through that as well.

[tinkerbellvspredator]

Thanks Mrs Rainbow I didn't know nausea could be a symptom. Hopefully the GP will be okay then, she's usually very good.

[MsRainbow]

Where I live under 18s have to have their blood tests done at the hospital. It's pretty straight forward, the GP gives you a form then you phone up children's outpatients and make an appointment. The staff are used to doing blood tests on children blood tests so it's pretty quick.

[tinkerbellvspredator]

Well the doctor didn't want to do a blood test straight off and has put us down for stool sample testing. Also told to go to health visitor to get measured and said they would probably refer us to a dietician if centile has dropped.

I will do both of these (though I don't know when we'll manage to get a stool sample given she would need to do a poo on a Monday or Friday between 12 and 4pm for us to get it to the hospital!). Feel a dietician is a waste of time too as DD eats well.

If the stool sample doesn't show anything I think it's highly likely the doctor won't want to refer for the blood test given the things she said through the appointment. She seemed to think we should spare DD the test if not necessary, I am pretty pissed off.

[nomdemere]

My then 2yo had several months of seemingly-random vomiting - he'd seem absolutely fine, then very quickly go pale, be sick, and then be fine again in a short time. It was quite puzzling. We got referred to a paed who didn't find anything wrong.

At 4, he was diagnosed coeliac. He also dropped centiles on the height chart, though the doctor wouldn't take that seriously because he hadn't yet dropped off the chart, so was still within 'normal' range IYSWIM.

Interestingly now that he is gluten-free, he has gone back to his original centile.

I would have the blood test. If it's negative, keep an eye on things and potentially test again 6 months or a year later.

[nomdemere]

I think you can insist on the test. I have done that before for other tests - a polite but firm insistence, backed up with valid reasons (which you have: google NICE Guidelines for Coeliac testing in children) tends to get results. You could ring Coeliac UK for advice about diagnosis.

[tinkerbellvspredator]

I did refer to the NICE guidelines but doctor was having none of it. I'll do what she has asked us to do and then go back and see one of the other doctors and insist if necessary - actually will probably send DH he's good at that sort of thing. I get teary when I'm frustrated like a toddler!!

[MsRainbow]

Sorry you didn't have much luck with the GP. I found GPs took little notice of a drop of over a centile, my own DS2 almost dropped 2 centiles in a few months yet GP was unconcerned but pead consultant was instantly concerned. In my own case I burst into tears in the GPs surgery and refused to leave until someone took me seriously, I'm not normally a cryer but it did work. From experience I don't think a stool sample will tell them much. If she had a tummy bug the nausea wouldn't come and go over an extended period.
It might be worth getting in touch with Coeliac UK. Their website has a helpline and they would be able to advise you if they think she merits testing and how to deal with your GP.
On their website they also have a list of symptoms. I now see that my DCs had symptoms I didn't pick up on (DS2 had pale poo, smelly farts and was very pale , DS1s upper arms used to go a bit red and blotchy which I've since found out is common in undiagnosed coeliacs)

[tinkerbellvspredator]

The stool sample is for testing faecal calprotectin so with that and the dietician the doctor must be ruling out other causes first. We were very lucky and managed to get the sample in on Friday so just have to sort out the health visitor clinic now.

Yes she has the smelly farts too, difficult to judge what the 'normal' smell of 4 year fart is though!!

[nomdemere]

As an FYI, DS1's stool sample showed that there was a lot of fat in his stool. This was because he was coeliac, and his body was unable to absorb the fat in food because of all the damage to the villi in his intestine. Fortunately he also had a blood test for coeliac which showed the antibodies. Your GP is being extremely neglectful, with coeliac in the family a test is certainly called for. I would go to another GP in the practice or to the practice manager.

How's it going, OP?

[Musicaltheatremum]

Maybe the GP just wants to do the non invasive test first and depending on the result of that may go on to do a blood test. We only have 10 minutes to sort these things out and there's nothing wrong with working through a differential diagnosis. Give them a chance.

[tinkerbellvspredator]

The stool sample has come back with no issues. It was just testing for faecal calprotectin so they won't have tested for fat in it I don't think.

I am hopefully going to get to the health visitors on Friday to do the height and weight, but am tempted to go back to one of the other doctors after that rather than wait for a dietician referral depending what the health visitor says. I really don't think a dietician will find anything 'wrong' with DDs diet.

[nomdemere]

I agree OP, go back to another doctor. Can't see why they wouldn't test for coeliac when it's in the family. I think you can insist. There's really nothing except the coeliac blood test that can tell you whether or not coeliac is likely. Everything else - fat in stool, anaemia, low weight/height etc. is extremely variable and doesn't appear in all patients.

[tinkerbellvspredator]

Well, had height and weight checked, height is still 9th centile, weight is near the 25th (our scales clearly not very accurate!). Went to see different doctor who was very nice and clearly knew a lot about coeliac wasn't dismissive of her symptoms etc.

However, he also was wary of doing the blood test as she's so young and it's not pleasant for them. As he said the test isn't conclusive as it could come back negative and she could still be coeliac. So in his view the exclusion diet for 6 weeks and then reintroducing should be tried first.

Don't know if it will show much as she hasn't got clear symptoms and I'm not sure how often she gets the reflux (definitely had it last weekend as some came out) and she's an unreliable witness in terms of asking how she feels etc. But being the summer holidays it's a good time to do 6 weeks gluten free so we'll be doing it from tomorrow.

DD won't be happy when she asks for all her usual foods but I am making gluten free pancakes for breakfast tomorrow. Not sure whether to cut out oats completely, it would be much easier if we used gluten free oats as porridge is one of her usual foods and I can make oat biscuits, flapjacks etc.

[MsRainbow]

I think it's terrible advice to trial GF before coeliac testing. Once a coeliac removes gluten from their diet they react very badly to even the tiniest amount of gluten. Now if you exclude gluten from your daughters diet for 6 weeks then re-introduce it and she reacts to it you will have to keep her on gluten for another 6 weeks before they will do the blood test. My DS1 had very mild symptoms when he was first diagnosed (we only had him tested because DS2 had been diagnosed). Within a week of being GF he started to get ill if he consumed gluten (he was a teenager and in a bit of denial at first so wasn't careful when out and about), he would get bad stomach cramps, the runs and brain fog.
The problem people have if they go GF before being tested is if they find out they do have a problem with gluten they do not always find it possible to return to eating gluten for the 6 weeks needed for testing to be accurate. This means they find themselves in the situation of knowing they have an issue with gluten but not knowing if they are coeliac (and not being able to have a confirmed diagnosis).
My youngest is 3 and has regular blood tests, whilst they are not pleasant, they are not that bad. The nurses do them all the time and they are over quickly. Whilst the test isn't conclusive, in many cases it does show an issue.
Please think carefully about going GF, you could always ring Coeliac UK and see what they advise.

[tinkerbellvspredator]

Thanks Mrs Rainbow will phone Coeliac UK tomorrow

[nomdemere]

Your doctor's advice is totally against recommended procedure. Terrible idea to trial gf - usually for coeliacs the symptoms are a lot worse when you start eating gluten again after being gf for a while, and can be absolutely unbearable.

No reason for blood test to be traumatic. My kids (age 3 to 6) quite enjoy them - they will be done at a hospital by someone experienced at taking blood from children.

[Bumply]

Bollocks advice from doctor to cut out gluten before testing. Absolutely no, no, no.
Incidence of coeliac is 1/100 in normal population. With a close relative who has coeliac that risk increases to 1/10.
Blood test is trivial.
The reason diagnosis is usually by biopsy is because they consider going gluten free to be so drastic a measure that it's not recommended unless you are coeliac. They've recently changed the diagnostics procedure so blood test is sufficient for young children so they don't have to have the biopsy.
My Mum had coeliac and it still took ages with a sicky baby to get a proper diagnosis, even with me knowing it was an increased risk. DS2 was 95th percentile until he had gastroenteritis at just under 1. He then dropped to 50th percentile which the Drs kept seeing as 'normal', but it was by no means normal for him.
Oooh, it makes me angry when I hear about clueless doctors like this.
Yes to speaking to the Coeliac society.

[oohdaddypig]

Definitely don't trial GF. Because for an accurate test, you need to ingest gluten daily for three or so months.

I would see another GP. I don't have a family GP (busy practice) and saw a young female GP who had kids. I said I wanted the test as DD had recurrent diarrohea and pain. There is no history in the family. She didnt bat an eyelid and the test was fine. She gave us some numbing gel and DD didnt bat an eyelid.

I think some GPs are just much better informed. I ignore the ones who are dismissive.

[Mucho]

Tinker - my DD also has the reflux, dropped centiles, etc and is a diagnosed Coeliac. Unfortunately for us the GF diet has had no impact on her reflux (I've just started a thread). It took us a long time to get a paeds referral and diagnosis and in the interim her symptoms got worse and worse - lethargy, poor attention span (her teacher noticed a difference in attention within weeks). I feel for you - all I can reiterate is don't exclude gluten, if you can pay for and find someone to do a raft of bloods privately do it and in tandem be a nightmare pain in the arse mother.

Good luck and I'll keep an eye on your thread.

[nomdemere]

As a by-the-by. I have some experience of 'persistent Mother' action (both as the child and as the mother - I have a serious and rare condition which wasn't diagnosed till I was a teenager, and my DC are coeliac).

The secret is to be politely persistent and well-informed. If I am being refused a test for the DC that I think is necessary, I listen carefully, then smile politely and say, 'I understand that/that makes sense, BUT in this case I would like test xxx to be done.' Repeat as necessary. Usually I have a sheaf of print-outs on my lap (NICE guidelines etc.) - I don't need to refer to them, just having them there probably makes the doctor's heart sink.

Sadly, I think that looking as middle-class as possible helps too. Being crystal clear about what you want done, and politely repeating it.

[tinkerbellvspredator]

Hi all thanks for the input. DH spoke to Coeliac UK who as predicted said the exclusion was a stupid idea. So we'll be going back again next week to see a third doctor (the one we wanted to see last week was on leave). DH will do the firm insistence bit this time, he doesn't get flustered like me.

We were thinking of going private and getting DNA test done at the same time but with Coeliac UK agreeing we're now feeling secure enough to push for NHS test.

[nomdemere]

Great, tinker bell, glad you are pushing for the doctor to do the right thing. I would consider printing out the NICE guidelines for coeliac testing in children - they are easily found on Google. I highlighted all the bits that applied to my DC - in the end didn't need to show them to the doctor as they were willing to do the test anyway, but it probably helped make me feel assertive!

[helensburgh]

I thought e blood test was not specific enough and had too many false positives, as I understand it the only was is to have an endoscopy to be certain, to look at the villi.

I know of two children who were diagnosed from blood test only to find the gluten fre diet and no effect, they had normal villi.

[nomdemere]

Helen, the guidelines have changed recently. If the blood test is over a certain (very high) level (check Coeliac UK to see what the level is) AND the child has the DQ2/DQ8 "coeliac" gene, then a coeliac diagnosis will be given.