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.

Ah ok nom that makes sense. Thanks

Our doctor did the blood tests the same time as the biopsy so the child doesn't know

All sorted, going to get blood test done at the hospital. Third doctor (ironically the one we avoided in the first place) agreed readily. Of course DH did set out what he wanted and why he didn't agree with previous advice clearly. Fingers crossed it all comes back negative now.

Good news Tinkerbell. Let us know the results.

Great news Tink.

great news, but isn't it awful that it took you three visits to get the right outcome. no wonder it can take so long to see a doctor of this is being repeated throughout the country (which I think it is). thank goodness for the internet, which makes it so much easier for ordinary people to inform themselves of the facts. Fingers crossed that the blood test is conclusive.

Apparently it takes on average 13 years from first contact with a health professional for a coeliac to get diagnosed. Really shoddy, given that 1% of the population is affected.

FFS. apologies for ranty post in advance! DD had blood test last week, DH rang for results today and was told all fine. Yay so pleased...

He asked for all the details so they printed the results off and he picked them up on the way home. We looked at them and they've done lots of blood screening tests, vitamin B12 even, but no bloody tests for coeliac disease (antigens etc) ! So back to the doctors tomorrow - best case the receptionist has left one piece of paper off but strongly suspect pathology have fucked up and we will need to go back to the hospital again.

Aargh. On the plus side DD seemed okay with having the blood taken and the children's service is really good, on the negative side as its appointment based will probably have to wait another 2 weeks. And she's starting reception on Monday so I don't want to have to take her out of school.

So no news I'm afraid just one very pissed off tinkerbell!!

Good(ish) news, test has been done but had not been sent through yet because it's being reviewed by a consultant. DH was out for an hour sorting it though as the doctor had to phone the hospital etc.

Don't know if this is standard procedure for coeliac testing or whether this indicates that the test is not negative. Should find out in a few days though.

Ime the coeliac test takes longer to come back than others regardless of result. Hope it's good news

Just found your thread. Sounds like hopefully you should have a proper answer soon. If coeliac test is negative perhaps read up on lactose intolerance as an alternative possibility? Last year DS (6) lost 2 centiles and suffered lots of tummy aches and occasional vomming as a result of temporary lactose intolerance brought on by a tummy bug shortly followed by a course of antibiotics. Good luck.

We have to see the GP about the results, have an appointment for Wednesday.

We are thinking that lactose intolerance could make more sense for the reflux (I think I am mildly lactose intolerant) but wanted to check the coeliac due to family connection.

good luck Tinkerbell. I'm sure you know already that coeliacs are often lactose-intolerant before they go gf (because the antibodies to gluten destroy the villi in the small intestine, and it is the tips of the villi which are needed to process lactose - or so the gastroenterologist told me). Very sensible to check the coeliac possibility - so many people don't, and that can lead to a lifetime of poor health.

Tinkerbell, well done for not being fobbed off and being so persistent! Hope there is a clear result tomorrow. I don't wish coeliac disease on your DD, but the symptoms seem so clear and it will make such a difference to her to have found it so early in life.

We couldn't wait until tomorrow so asked for the 'numbers' today, her tTGA was 80 apparently (well an hour after DH told me this he then said 'didn't I say 90?'!).

It's bloody difficult to find information on Google but what we've found suggests this is high (10 is the upper limit of normal?) but not high enough for the blood/DNA diagnosis route (more than 100?).

So I'm going in tomorrow assuming we'll be referred to a consultant for a biopsy. As presumably we have a choice over which hospital to be referred to under NHS Choices I wanted to ask if anyone has any experience/recommendations for paediatric gastroentorologists? We are in London/Kent borders. Going to start a new thread for this question also.

Hi Tinkerbell. It does sound likely that your DD is coeliac, sorry. I suggest you ring Coeliac UK (you'll find their number by googling). They have an advice line and are generally pretty good.

You might want to have the HLA-typing blood test (this shows whether your DC has the DQ2/DQ8 'coeliac' genes). For diagnosis of children without biopsy, this is required - the combination of that and the antibody test is enough for diagnosis. If your DC is close to the borderline, it might be that a specialist would consider that enough for diagnosis, I don't know.

My DC had their biopsies in Leeds, so probably not much use to you. You could try posting on message board [[http://members2.boardhost.com/glutenfree/index.html]] to see if anyone has London recommendations.

And by the way, you were absolutely right in your OP that if a child is coeliac, much better to catch it early than to live in denial. It has been wonderful to watch my DS1's health bounce back - I hate to think what his life would have been like without diagnosis.

Sorry rubbish link

here it is

Thanks nom. Have been in to see GP who confirmed the test level was 80 and that is very high so DD probably has coeliac disease (she also was slightly below normal range for her mean corpuscal haemoglobin).

GP is writing a referral letter, we have requested The Royal London (St Barts and the London) as one of their paed gastro consultants is on Coeliac UK's advisory board and they have a 'Digestive Disorders unit' which sounds good for continuity of care from childhood through to adult care.

Despite this being something I've thought about (and worried about a little bit) since DD was a baby now I've had the confirmation in person I'm feeling very teary , DH feels the same.

DH is going to go request the blood test next week, he's avoided it before as he's not got any classic symptoms and he doesn't really want to know but he agrees that he should.

It is a gunk Tinker. I remember when DD was diagnosed I left the hospital and cried in the car park (she was with DH and I was off to find GF food). Yes there are many, many worse things to have and it's great to find out when they are little but you just wish that there was nothing in their wee lives to make it harder.

I know it is a big life change. I did not feel emotional when DS1 was diagnosed (age 4) - I think because I have a different, and much worse (untreatable) genetic disease, and compared to that, this feels very 'livable-with'. My focus was always the mantra 'all he has to do is not eat gluten and he will be as healthy as any other child on the planet'. So, instead of seeing it as a blight, I see it as a wonderful thing that what he has can be treated by diet alone.

That doesn't take away from the fact that it is an endless work to avoid gluten. I find the easiest thing to do is to be totally gf as a household (this may be true for you too if your DH turns out also to be coeliac). It is more expensive, time consuming, and requires a lot of organisation and planning. That was a shock and a big life change. I think it takes a full year to get used to it (lots of 'firsts' - Xmas, holidays, birthdays etc. etc.) but now - 2.5 years in - it is far, far easier and has just become a part of our lives.

I am sure you're doing this anyway, but I was always careful to be super-positive about it in front of DS - how fantastic it is to be able to stay well by checking what you eat, look how much you've grown since you went gf, look how much energy you have now etc. etc.

Sounds like you've made a good choice with the Royal. Chase up the gastro appointment if it's slow. Our gastro paed was fantastic and slotted DS in at the end of a fully booked biopsy clinic so he got biopsied within a couple of weeks and we could get on straight away the going gf.

By the way - you might decide differently - but we didn't bother with going lactose-free - our paed advised that any lactose-intolerance would disappear as the villi regrew. But we weren't seeing big problems with it anyway, so you might decide to cut down.

You have done brilliantly by catching this so early. Has your DD started school now? (My DS was 4 when diagnosed but still in nursery). When you go gf (as long as you do it properly and thoroughly) you should start seeing improvements in her health and energy within weeks. We saw a difference in DS within a few days, and it has just kept on improving.

I've always thought it's not that big a problem going GF and a much healthier diet anyway but now it's real I just think of DD feeling 'different' at parties not allowed to have the birthday cake and all that - more difficult as a child than a grown up to accept.

Yes I planned to be a gf house even if DH's test is negative as not only is it logistically simpler but I didn't want DD to be asking for things she couldn't have and there being obvious differences in what we all ate.

At least we already know how to cook a lot of gf meals and what to look out for on packets and in restaurants (DH's parents visit for 2 weeks at a time...). DH and I also work in 'food' related area and know all about food legislation and cross contamination etc.

I hope we will see DD's height going back up as yes she has just started school and being one of the younger ones and on the 9th centile she is I think the smallest in her class (she does have the advantage of being very cute though!). I dread to think what her energy levels might look like if they go up she is pretty energetic already and dropped her daytime naps at about 1.5. One of the reasons the first doctor was so dismissive, 'oh she looks healthy, she's not tired is she etc'.

Feel very lucky the provision for coeliacs has got much better in recent years, Pizza Express have just extended the GF pizza bases to the kids menu which I was so pleased to find out. The caterers at DD's school said at the information evening if anyone had allergies etc then they would make provision and set up a one to one meeting to discuss, the 'brand' of caterers selling point seems to be that the food is '90% home made'. Fingers crossed.

I am going to phone GP tomorrow to chase up the referral and see if they have been on to the choose and book system for us yet.

You sound really well-prepared, which is great for your DD.

Funnily enough, birthday parties haven't been too big a problem. We always take our own meal for DSs. To begin with I went totally overboard, and their party meal had magnificent iced cupcakes and the like. Nowadays, it's usually a last minute scramble to throw in whatever's at hand. He seems perfectly happy. I always frisk the party bag on the way home and remove cake / sweets etc. (luckily the sweets are often Haribo which are nearly all fine). We have gluten-free cake a lot at home, so they don't feel hard done by.

I do make a big effort for their own birthday parties. There is a local cake maker who makes magnificent iced cake creations and can do gf. They get to choose any theme they like and she makes a stupendous cake. It's expensive, but my justification is that they never get to eat anyone else's birthday cake, and also I like the other kids at the party to see that gluten-free doesn't mean second best!

Update - we went to local hospital in the end as we only had to wait 2 weeks for an appointment vs 3 months for our preferred one. The paediatrician registrar had no expertise but did check with her consultant and they decided to diagnose DD without a biopsy subject to the dna test which she had last week. So from our perspective we're happy not to go through the biopsy though the process seemed a bit ramshackle.

Having a meeting with school caterer tomorrow and have to write a letter to school too I guess. We'll start the new diet next week in half term, it's not a great time to get headspace on this as we've just had DC2 but we'll get there.

DH test came back negative, only 0.3. Think he was disappointed in the end as he thought it could be the answer to tiredness, migraines etc.

my daughter has just been diagnosed in the same way, blood tests and dna tests. it's in line with the new NICE guidelines, and reduces the number of children that have to have a biopsy under general anaesthetic. Coeliac Uk have loads of useful info (and they have information packs to give to school you can print out) and several companies - juvela and glutafin will send you samples, one week into feeding my dd gluten free and it's getting a little easier.

She didn't have 10 times the upper limit of normal on her test though only 8 times. The registrar said something along the lines of 'near as dammit' and DH replied well there's a 20% difference. Registrar and head consultant were paediatricians not paed gastroenterologists. In the letter the hospital has sent to the GP they say the test was 10 times normal