Coeliac Disease in Toddlers

[silverangel]

Hi

I have CD (self diagnosed with a home test, never actually been to the doctors about it). Going GF has cured all symptoms.

My twins are two and a bit and it has been playing on my mind that their weight gain and growth is small / slow. They are ex-prem, but had got up to the 50th centile at around 12 months are now on the 0.4. Hadn't really worried about it as they are reaching all milestones and healthy and well in themselves.

I have realised though that they have hardly ever had a solid poo, maybe once a month. Sorry for the TMI but it is mushy, although not water.

I have a GP appointment tomorrow as it occured they may have CD too? Does anyone any experience of their toddlers having it if they do too, I did read something about a 1 in ten chance of having it if a direct relative does?

It's true that there is a strong genetic link so your chance of having coeliac disease goes up from 1 in 100 (general population) to 1 in 10 for those with a close relative (parent or sibling) who has the disease. NICE guidelines state that close relatives of known coeliacs should be offered the blood test but in my experience this rarely happens. I would definitely ask for your twins to be tested but please make sure you do NOT remove gluten from their diets until they've been tested as the tests cannot be done once they're gluten-free. Do they have bloated tummies? This is often a common symptom in young children with coeliac disease along with tummy pain and trapped wind.

freefrommum is right - if they are for testing it may even be worth increasing their gluten intake to make sure for the tests - do they have a similar diet to yours, in which case it may be surprisingly low in gluten. Need 6 weeks good intake to make sure test is valid.

Also a little concerned re you - home testing is all good and well but from the reading up I did they really aren't that reliable - though feeling better is! :) My concerns are that you aren't getting the support to ensure your calcium intake is adequate for someone with coeliac disease, DEXA scans to check your bones, and also knowledge about cross-contamination, foods on prescription as it is expensive being gluten free. Being coeliac isn't to be taken lightly and even small contamination (e.g. using same toaster as gluten containing bread and using same butter pot) can cause serious consequences even if symptomatically you feel better these small amounts still cause damage (and can lead to some nasty long term problems). Problem is to get yourself in system properly you'd need to go back on gluten to get proper testing, a big ask I know! However well worth it, the wealth of info my sis got when diagnosed was so useful and so much we hadn't realised about coeliac, the reassurance she gets from DAXA scans and testing her iron level - she required supplements for that for a while -etc.

Hope you find out what's up with them.
The other thing is - have they been loose since birth? In which case may not be gluten, that won't have been introduced to them until weaning. I know as a parent you'll not want to restrict unneccessarily (GF diets are notoriously low in fibre)

Thanks both. Well have been to the GP this morning and supposed to be having blood test on Tuesday - I said do I have to be eating gluten for it to work and he said no which completley conflicts with everything I have read. I am going to put the gluten back in and then go and see a consultant privatley (I have health insurance), and see where that gets me to. GP wouldnt dicuss the children until I have a positive test confirmed helpful.

Freefrom - no, they don't seem to be bloated - no hard tummies but yes, very windy to put it mildly!

Skinny - they have been loose since birth, I am now wondering if maybe it could be lactose? Or maybe they are just like that? I cant see how potty training will ever work if they are though. They were pretty much ff from birth at 31 weeks and were on nutriprem, and also had severe silent reflux which they were medicated for. I am going for their two year check next week so will speak to the HV then and see what she thinks re their growth.

Your GP is totally ignorant - I would not trust him - I would want to be referred to someone who knows about CD, or at least to try a different GP at the practice. Young ones are often better informed than old ones, though even young ones are often woefully ignorant.

On children that young, the blood test is often unreliable because their immune systems aren't fully developed so they may not be producing enough antibodies to register in the blood test. If I were you, I would ask to have the genetic test that shows whether or not they have the DQ2 or DQ8 'coeliac genes'. Having the gene doesn't mean that you are coeliac as there is also an environmental trigger involved, but NOT having it means that you're not. About 33% of the UK population have the gene.

I will be having DC3 tested for the gene next year when she's 3. Both her siblings are coeliac, and as a family we are now gluten-free. If she doesn't have the gene, then I know we don't need to worry about her. If she does, then we will do a gluten challenge when she's older and test for it.

Ring Coeliac UK and ask for help, they can advise on diagnosis. You certainly need to be eating gluten, and a considerable amount of it, every day for at least 6 weeks before the test.

The blood test looks for antibodies in your blood that coeliacs make in response to gluten in their digestive system. No gluten, no antibodies. If you've been gluten-free for a long time, it takes a while of eating gluten for the antibodies to be produced again.

The endoscopy looks for damage in your villi caused by the antibodies attacking your small intestine. Again, no gluten, no damage. The villi heal gradually once you go gluten-free.

The first inkling we got of my then 3yr old's coeliac disease was that he was anaemic. It improved on iron supplements but went down again when he came off them. Stupid paediatrician decided it was our fault for not feeding him enough iron-containing food. Took a year and a half before we got an intelligent paediatrician who noticed his hard, bloated belly and asked us about his bowel movements, then sent us for a test - sky-high, off the scale antibodies. A year and a half later, he is so vastly better it's unbelievable.

Are their poos yellow and frothy/floaty? Look up 'steatohrrea' (sp?!) to see a description. That's quite a strong indicator. It makes me concerned about DC3, because when I've tried putting her back on gluten, she has these kind of poos - hence testing her for the gene next year.

Hopskip, thanks, that's really informative. I think I will give up on the GP, their instant reaction is IBS for me but I feel it's too much of a generalisation, and I think that IBS is caused by SOMETHING. Maybe I'm not colieac but gluten intolerant but they have never suggested any kind of elimination diet just 'take immodium'. Now that I am thinking about the kids though I want to have a proper test, not just for my own health but to give impetus to the fact they may have it too.

He came up with another gem 'CD is much more prevalent in the Irish community' - in all my research i have never come across this before, I wonder if there is any truth in though. I am adopted from Irish parents so I don't know if there is any family history or not.

I think the best thing for me to do now is get myself back on gluten, see a consultant, get the result and then think about the kids tested depending on the results.

Their poos are yellow, not so much frothy and I dont know if they are floaty as you could never empty a nappy down the toilet, not solid enough. They did have very pale poos when they were on milk only.

I only started thinking about CD because I went on a low carb diet to loose weight so obviously eliminated the gluten - all of my symptoms disapeared within a couple of weeks but as I reintoruced bread / pasta /wheat products they came back. I am fine with other carbs. I should have pushed this further a long time ago...

I'm glad your DCs were better once you got the diagnosis:)

Yes, hard to tell the floaty bit until they're potty trained, sorry! Not sure that CD is more prevalent in Ireland, though it may well be better diagnosed, it's not well diagnosed here.

Ironically, Coeliac UK has been doing a drive to get people diagnosed with IBS to have a proper test for coeliac, as their research shows that a significant number of them are undiagnosed coeliacs.

Also, a dietician (with coeliac in the family) whom I was speaking to recently told me that new research is indicating that there is a wide range of 'non-coeliac gluten sensitivities' which may have a genetic link to coeliac and may explain a large chunk of people with IBS. Her take on it was that anyone with the coeliac gene (DQ2/DQ8) is better off avoiding gluten. I'm not coeliac (had a blood test when the DC were diagnosed) but my IBS symptoms have vanished since I went gf along with them, which is interesting.

I would definitely push for getting properly tested, both for yourself and for the children. Going private could speed things up.

There is a good coeliac/gluten-free forum here that might be helpful.

GP is definitely wrong about the blood test as you do have to eating gluten regularly for at least 6 weeks before the test for it to be accurate. Funnily enough, when my DD was diagnosed they said that DH and I should get tested too and we both came back negative but I've suffered with IBS since my teens so was really expecting to discover that I was in fact coeliac. I haven't tried going gf as my IBS symptoms are not that bad these days but from what hopskip has said, it may well be that I have some form of gluten intolerance. I wonder if I have the gene?

It would be interesting to know, wouldn't it freefrom? I don't know if I do either, I suspect the doctor wouldn't see the benefit in testing me.

Maybe try going gluten-free? It's not so hard if you're already doing it for another member of the family.

the Irish thing is true, west of Ireland fair skinned higher prevalence of cd. also Ashkenazi Jews. dp lives going to Ireland for work as generally easier to eat gluten free.

Silverangel - my toddler had pale soft yellow stools prior to his coeliac diagnosis but as he seemed well on himself I thought nothing of it. He was gaining weight well but he caught a sickness bug which triggered his coeliac gene from very mild into full blown. I can see now that he had some symptoms prior to the sickness bug (also had a rounded belly, stools where really smelly and he was pale).
I found it very difficult to get GPs to accept that his sickness bug had progressed past being 'just a bug' but once I did get him to a paediatrician they took real notice that he had dropped over a centile on his weight chart ( at 10months he was on 75th centile, but at 20months he was on 25th centile).
I think your DCs drop on the centile chart and pale poos merit them being tested now, the fact you have difficulties with gluten only adds to this. If your GP is reluctant to test them for coeliac then I would push for a peadiatric referral to investigate the centile drop- medically a drop over over a centile is classed as 'failure to thrive' and merits further investigation.

Yes 6 weeks of gluten in diet needed before the blood test, so worth going back to gp with a copy of NICE guidelines for gp to read and reques the blood test in 6 weeks. When you have the results worth a referral to a gastroenterologist if the results out of normal ranges. Even if go through health insurance you will need 6 weeks of gluten in diet before any tests can be done.

Great idea to ask HV for advice, she could suggest referral to a paed who may or may not do blood test for coeliac.