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Allergies and intolerances

Coeliac - when to test a toddler

23 replies

FireworksMum · 17/01/2011 12:31

Hi, I'm a first time user so apologies if not up on the lingo!

DH has Coeliac disease and as hereditory know that potentially our DD could have it. Was worried that may affect her development so have kept her gluten free, she's thriving (is 14mth). On the odd occasion that she has eaten gluten (cake / sandwiches) has had soft, v smelly poo but not been sick, but I don't know if this is Coeliac or just because she's never had gluten before. Know that I need to check for sure, but a bit scared and confused!

What age should I get her tested? How long should I introduce gluten before getting her tested?
If not Coeliac, could I have caused a wheat intolerance by keeping her off gluten?
Does anyone else's child have the same reaction to cake/sandwiches for the first time? Is it normal?

I'm really worried about blood tests for toddlers - how do you do it?
Should I just go through NHS GP or can someone recommend someone good (live in SW London)?

If she does have Coeliac - what breakfast cereals do you give to a toddler with it? Many of the GF ones have chocolate or honey (DH loves those!).

Many thanks for your help.

OP posts:
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MistyB · 17/01/2011 23:02

I'm watching this with interest as have a potential Coeliac DS who is Gluten intolerent at the very least but I'm in no rush to have the biopsy as his reactions to wheat are horrific! Allergy Consultant has suggested a Biopsy after having DS on gluten for two weeks. I wouldn't do this without supervision.

The jury is out on whether exclusion increase the risk of allergies and the evidence is inconclusive. FWIW, I believe it's something that is inherent and babies are exposed through pregnancy / breastmilk unless you excluded gluten from your diet during pregnancy / feeding.

Cereal: Mine loves Mesa flakes and Rice Crispies. There are concerns surrounding Corn Flakes due to the residual gluten in the Malting process. I tend to use simple organic cereals with few additives / minimal processing. If your DD is OK with oats (most are) then porridge is great and crunchy oat cereals a little later.

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TooOrangeyForCrows · 19/01/2011 22:36

Hi
I would suggest you contact Coeliac UK on 0845 305 2060, and talk it through with them. Then go armed with their advice to your GP. Blood tests for toddlers are done at special haematology clinics, where an anaesthetic cream is put on the skin before any needles are used.

Coeliac UK also provide information on GF foods available in supermarkets and on presecription.

Good luck.

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Saggyoldclothcatpuss · 19/01/2011 23:12

I pop in here sporadically, to tell people with potentially coeliac Dcs to NOT put them on a gluten free diet until they have been biopsied. Obviously the previous posters dcs are in different situations and are already GF, but for anyone else checking in, here's my story.
DD was about five or six, and became very pale, lethargic and had lots of tummy and leg pain. The doctor took bloods, found antibodies and suggested a GF diet straight away. On attending our referral to GOSH for the biopsy, we were told that she would have to go back on gluten for 3 to 6 months. By this time she was totally GF. One biscuit had her crying in pain most of the night. I refused to put my DD through weeks of pain for the biopsy, so she remained undisguised and we were refused a food prescription. Don't stop the gluten until you've had the biopsy.

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Saggyoldclothcatpuss · 19/01/2011 23:16

Sorry, that sounds really ranty, but I was treated badly by GOSH when I refused, told I was being unreasonable and sent packing. It's a very emotive subject for me, and I like to spread the advice when I can.

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Dorrrsetmummy · 20/01/2011 13:20

My dd has coeliac disease (albeit a secondary disease to another autoimmune disease). She remained on gluten free diet briefly and biopsied (age 3) for confirmation. It was positive. She didn't improve however until we approached her lifestyle very strictly. (I.e. Own toaster slots, own bread board, own butter etc). She can't tolerate rice crispies - they contain barley so be careful assuming that because some can all can. Once we made this change she improved enormously and in a short space of time. I would definitely recommend contacting coeliac uk but also the gp.
Fireworks Mum I am no expert on this, but I do second the other comments that you wont get an absolute diagnosis unless a gluten inclusive diet is introduced. If I were you I would discuss it with your gp and ask for a referral to the dietician. It would be unfortunate to insist your dd is gluten free throughout life unnecessarily as it is not always the easiest thing for little people!

Good luck :)

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MistyB · 22/01/2011 07:36

FWIW - Nature's Path Organic Crispy Rice Cereal is Gluten free - Kellogg Rice crispies and Corn Flakes ones have Barley Malt.

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expatinsingers · 28/01/2011 13:32

For brekkie I give my boys gluten free oats - some oats are processed in mills where they also process wheat and are contaminated so you need ELISA tested ones that are labelled GF. I also make rice pudding for my older boy when he is at school as it gives hims energy - as you say, lots of the GF breakfast cereals are full of sugar.

I feel your pain at having to give gluten to get a diagnosis when your child reacts so badly. My 4 yr old was diagnosed by blood test but we were going away for 8 weeks so were told to keep him on gluten. I just couldn't do it when he was rolling around the floor in agony with stomach pain. Lucky for me we live in Oz and they were relatively happy to accept diagnosis on the antibodies and symptoms. And then my older boy was also diagnosed with antibody test and biopsy and he was physically symptomless previously.

HTH at least with breakfast Smile

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BertieBotts · 28/01/2011 14:57

I thought coeliac disease was tested for in the newborn heel prick test? Or can it develop later as well?

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tkband3 · 29/01/2011 09:31

All my 3 DDs are coeliac. DD1 was diagnosed at 2.8 after suffering badly for 2 years whilst i was dismissed as a neurotic mum by the docs. She had a blood test followed by a biopsy. DTs were diagnosed subsequently, although never suffered as DD1 did - their diagnosis was confirmed by blood test. The paed gastroenterologist was happy to accept this, together with our family history and their symptoms as concrete evidence, so they didn't have to go through an unnecessary GA.

You won't get a positive result on a coeliac test unless your DD is eating a normal gluten diet, which Coeliac UK recommends is equivalent of 2 slices of wholemeal bread per day for 6 weeks (I think - worth checking with them).

We have the annual directory from Coeliac UK which gives details of most branded and supermarket foods which are gluten free. Although Kelloggs cereals contain barley gluten, a lot of supermarket brand cereals are ok...Coeliac UK have liaised with the supermarkets and have 'signed them off' - my girls have Sainsburys cornflakes, rice krispies, coco pops etc. Also, Doves Farm Chocolate Stars are a particular favourite.

BertieBotts - I'm no expert, but I don't think a coeliac test in the newborn heel prick test would be effective. Coeliac tests are notoriously inconclusive in children anyway, and other than in early childhood, the most common time of life for it to develop is early 40s. It would be good if it did work though - would be great to think that children wouldn't have to suffer the symptoms unnecessarily.

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FireworksMum · 07/02/2011 21:30

Hi all, thankyou so much for all the feedback and advice xxx

I'm sorry to hear that others have had a nightmare getting their kids diagnosed. I will certainly call Coeliac UK (DH just had earache as he should be a member! And also needs to talk to doc about getting a prescription.)

DH has spoken to the doctor and we've been refered to Paediatric Gastroenterology; appt is end of March. Hopefully will talk us through how long she needs to be on gluten and the various tests, I really hope that they take blood test and family history and we can avoid the biopsy. I will let you know what happens. For a biopsy, I guess that DD will be knocked out?

Good to hear about alternative cereals, I've bought some GF rice crispies and will try her on those. I'm also going to try her on Ready Brek and Oatibix bites, they are oats and no barley.... actually, I'll test them on DH first.. I'll bribe him with the fab GF blueberry muffins I recently found on the Annabel Karmel website [use GF self raising flour and also baking powder, rise a treat and v yummy!]

Managing the diet at home isn't too bad, esp as DH is coeliac. It's when at nursery / playdates that's a stress for all concerned, and as she gets older she'll want to eat what others are having. The nursery have managed to avoid gluten but sticking to an agreed menu has been troublesome and she's ended up with rice and veg followed by yoghurt for days in a row :( I'm now supplying meals (matching to the 'normal' menu) and have high hopes for the new chef starting soon! Playdates at ours are just easier as other mums just worry. I really don't know how peanut allergy mums cope. How have others coped with nursery / playdates?

Thanks again for all your advice, really appreciate it x

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simpson · 07/02/2011 22:06

sorry to ask a really stupid question Blush

My DD (3) is severely intolerant to dairy, oats, soya & barley and is still reacting to something else we have not discovered yet...

She has been recommended for a biopsy for coeliacs which may happen in the next couple of months...

Anyway, my question is that I thought coeliacs was a problem with wheat/gluten, but a couple of you have mentioned barley (which my DD reacts very badly to - diarrea(sp) mainly) is barley a problem for coeliacs too???

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simpson · 07/02/2011 22:07

Also does anyone know any cereal that is barley and oat free???

I have yet to find one Sad

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CrispyCakeHead · 07/02/2011 22:18

Bertie, coeliac is not tested for in the newborn heel prick as it needs gluten antibodies to be present and a newborn will not have those as will never have ingested gluten.

Doves Farm do a nice cereal that is a bit like specialK made with buckwheat which, contrary to the name, has nothing to do with wheat and IS gluten free. they also do a GF cornflakes, but they really aren't very nice at all.

In answer to the OP, coeliac UK do not recommend following a GF diet for offspring of coeliacs and state that there is no benefit to delaying the introduction of gluten beyond the 6months current recommendation. I would, as someone suggested though, call them and ask their advice regarding the delayed introdution of gluten, as it may well be that it's just because she isn't used to it. IIRC her risk (as a child with one coeliac parent) of being coeliac is only 1 in 20 so still a good chance that she isn't. I was diagnosed when my DS1 was 2 and have 2 more DC and so far so no symptoms in any of them.

Good Luck Smile

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tkband3 · 07/02/2011 22:40

Barley contains gluten, as do wheat and rye. Oats are often contaminated with gluten, although you can buy free from oats (in Sainsburys as well as on specialist websites) - some coeliacs can tolerate these oats, some can't.

All specialist gluten free cereals, such as Doves Farm chocolate stars and the flakes CrispyCakeHead mentions above should be barley and oat free. The supermarket own-brand ones I mentioned do contain barley gluten, but in small enough quantities for them to have been signed off by Coeliac UK as ok for coeliacs.

Re parties and playdates: when my DDs go to parties, I find out what kind of food the mother is doing and then replicate it as best I can in a packed lunch/tea. The mother will almost always ensure they have sweets that they can eat in their party bag and for prizes at the party, but I always take some just in case. The birthday cake is rarely gluten free though, so I always take a cupcake or a muffin or something that my girls can have instead - this is the bit they find most upsetting, that they can't have a piece of the Hello Kitty or Hannah Montana cake Sad. A couple of my really close friends have made gluten free birthday cakes (one actually did all of the children's food at her DD's party gluten free, which made me cry, I was so touched). Making gluten free cakes is really easy - there are some really good recipe books now (I highly recommend this book), so I have become an accomplished baker since DD1 was diagnosed and everyone loves my cakes Grin.

They don't provide gluten free meals at the girls' school, so they all have packed lunch. In the early days, when they went on playdates, I tended to go too, so I could sort of supervise help with the food preparation, and used to suggest simple things like fishfingers (I would bring the gluten free ones) and chips for tea, so that there would be no chance of using the wrong stock or something. Now, my friends are used to catering for the girls and always call me if there's something they're unsure of. My DTs went to a friend the other day whose mother is Japanese - I wasn't confident that she'd completely understood what I meant by gluten free so I rang Coeliac UK and they emailed me a copy of the translation sheet they offer for people travelling to Japan. I was slightly worried I might offend her, but I was sure that she'd rather be sure she wasn't going to give the girls tummy ache by feeding them the wrong thing and I felt much more relaxed that she knew exactly what they couldn't eat.

Sorry - I've rambled on rather a lot Smile, but I hope some of what I've posted is helpful. If there's anything else I might be able to help with, please just ask!

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Keziahhopes · 08/02/2011 22:47

Hi,
my obstetrician has a coeliac dh and as I am coeliac and have other immune issues she told me that I had to keep my child, when born, gluten free until they were 2. My immunologist said that the immune system of a child is not fully developed until they are 2, so cannot test for coeliac until then. This however, is only what I have been told and I am not a doctor.

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CrispyCakeHead · 09/02/2011 20:44

that's against the advice of coeliac UK kezia.

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Keziahhopes · 09/02/2011 23:16

Thanks Crispy, useful link and info.

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keepmumshesnotsodumb · 11/02/2011 19:17

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keepmumshesnotsodumb · 11/02/2011 19:19

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Chappers11 · 02/03/2011 22:18

Hi Fireworks Mum, I am a new poster too, lurking for coeliac info for my 20 month old! She has recently been diagnosed as coeliac (at around 17 months old) and your post resonated with me.

Your daughters symptoms when eating gluten sound similar to my daughter's, smelly pale loose stools and 'volumous' (?) ie. about 3 full nappies before lunchtime on a bad day.

I had her investigated because both my kids get loose stools when eating even small amounts of fruit. The paediatrician observed she was pale and also asked for her blood to be tested for coeliac disease. No one in our family has been diagnosed with CD. Because she is under 2 it is not conclusive, but highly likely she is. Within 3 hours of putting her on a gluten free diet she had her first normal poo. I don't need a biopsy to confirm she is a coeliac! She sleeps better at night, is generally happier and her cry is no longer a high pitched scream.

I am not sure, but I don't think they consider a biopsy until they are older than 2. The blood test has been enough to get me GF food on prescription.

The blood test was a bit difficult at the time, but with hindsight worth every minute for getting the diagnosis. We aborted the first attempt because she was very distressed before we had even tried to roll her sleeve up. I was then re-booked for a later date with a 'play therapist' also in attendance, who had toys and musical instruments and blew bubbles to distract her. Having said that, she was still upset whilst they drew the blood, because it does take a good minute to do, but the staff were all focusing on her and suggested I hold her facing me, (partly to keep her still and to keep her head turned away from them and towards the play therapist.) Under the circumstances it was as good as it could be! This was in the Royal Surrey Guildford. If you are not happy with the way the appointment is heading, then you can say so and re book. The staff aren't keen to force your child to go through undue trauma either!

Re: breakfast cereal. My daughter has a problem with normal oats, so I switched to GF Oats, but the dietician told me that all newly diagnosed coeliacs should stop even gluten free oats for the first 6 moths after diagnosis, to give their stomach a chance to heal.

As mentioned before the Coeliac food & drink directory lists lots of supermarket own brands that are much cheaper than some of the GF 'health food' cereals. eg. Waitrose Cornflakes, Tesco's Rice Snaps & Cornflakes. I agree that I am not keen on most cereals as a 'healthy option' either and will go back to GF oats in a few months. I don't know where I picked this up, but remember reading Kellogg's aren't on the list because they can't confirm there is no cross contamination between their cereals.

You are advised to use a separate toaster to avoid cross contamination and I bought this one recently which has made making eggs and toast for breakfast a pleasure, I highly recommend it if you have to go down that route too. www.amazon.co.uk/Tefal-Toast-TT550015-Toaster-Slice/dp/B0013KEDKY?tag=mumsnet&ascsubtag=mnforum-21
It is expensive, but I found it on offer for about £38. at Curry's. I have used it loads though and rediscovered poached eggs! :o

She also tolerates Genius Gluten free brown bread toasted, but generally doesn't like much GF bread. (This is on prescription.)

Best of luck with the blood tests.

I am really here looking for advice from other Mums for day to day living with a coeliac toddler. I can't believe the Coeliac society doesn't have it's own forums, we must surely all be asking the same questions as each other, but there is no central place I can find to search for this info. without trawling through lots of irrelevant stuff too, (eg Coeliac Facebook page) Any help would be appreciated!

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Chappers11 · 03/03/2011 10:28

Me again!

I have just remembered that I also give her Plum Fruity Porridge (Four Grain with mango and banana) which is gluten free. It's aimed at first stage weaning, 4+months, but she really enjoys it. It's a bit dear, but Boots had it reduced from £2.50 to £2 when I went in on Monday.

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MistyB · 16/03/2011 23:24

Chappers11 Just a quick note - the reason Kelloggs cereals are not gluten free is not the issue ragarding cross contamination of grains (which can be an issues with some oatmeal) but with the residual gluten in the Malted Barley in their products. Barley is a gluten grain, therefore should be avoided.

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MotherElle · 29/01/2012 11:06

Berie Botts, you are thinking of PKU heel prick test of newborns.

PKU is treated with strict diet but it is not the same as Coeliac Disease.

Coeliac Disease (CD) can only be tested for AFTER weaning on to gluten foods.

The test for CD which shows damage to the gut (caused by gluten in the diet) indicates the patient is a coeliac.

If no gluten is eaten the coeliac cannot react to it (that is why a strict life-long gluten free diet 'cures' Coeliac Disease).

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