Coeliac kids - advice wanted please

[redridingwolf]

Hello there. This seems to be the place for coeliac threads (though everything I've read says that coeliac is an auto-immune disease NOT an allergy!)

Anyway...

DS1 (age 4) has had a postive blood test for coeliac, and we are waiting for an appointment for endoscopy/biopsy. Now that I've read up about coeliac it seems obvious (he is anaemic, not putting on much weight, tired a lot, poor appetite, very fussy eater, bloated tummy and stomach pains) - so much so that I am wondering why the paediatrician has left it a year before testing him (and only did so because I pushed for further investigations)

Anyway, again...

I just wanted to hear anyone else's stories about coeliac kids. And in particular, to know if there is anything I should be pushing for medically for DS, or any questions I should be asking.

Also, I have a DS2 (age 2) and a DD (7 months). Should I be pushing to have them tested too? No sign of problems with them (though DD is only just weaning so won't have had much gluten yet).

Many thanks to anyone who replies.

Hi there redridingwolf. You're right, this is technically the allergies board and coeliac is an autoimmune disease not an allergy but as it works in a similar way to food allergies and intolerances this tends to be the place mums come for advice. My DD was diagnosed last April at the age of 9. She had always been a very healthy child until about 6 mths before when she started to complain of tummy pains. She had no diarrohea, vomiting, weight loss/gain etc just severe tummy pains and some acid reflux in the mornings. The tummy ache got so severe that she was literally doubled over in pain and was missing quite a lot of school. We went back & forth to the GP a few times trying to establish the cause until one day I took her and the GP thought she looked so ill she sent us straight to hospital for blood tests (mainly to see if she was anaemic, which she wasn't). Within 5 days I had a phone call to say that her results showed that there was a strong likelihood she was coeliac but she would need further tests to confirm. I was shell-shocked. She had another blood test which was again very high and the consultant said he was 99% certain she was coeliac but the 'gold standard' test was a biopsy. She had to wait 6-8 wks for the biopsy which was really hard because she had to keep eating gluten during that time, even though we were 99% certain it was making her so ill. However, it was definitely worth it to get a definitive diagnosis because CD is a lifetime condition and we needed to be sure. The biopsy was done under general anaesthetic in hospital as a day patient and was fine. As soon as it was done she was able to go gluten free without having to wait for the results. She improved almost immediately and the results confirmed the diagnosis. Unfortunately, her symptoms have recently returned and we're in the process of trying to work out why but that's another story.

As for why your son's specialist didn't test for CD earlier I'm not sure. I don't know how young they normally do endoscopies/biopsies but maybe this was the issue? You will need to get your other children tested at some point but as you said, the youngest will need to be eating a diet containing regular gluten for some time before testing. Our specialist also recommended that myself and my husband got ourselves tested as there is a strong family link (1 in 10 chance as opposed to 1 in 100). We both came back negative but worth asking your GP for the blood test.

Once you have the diagnosis confirmed by the biopsy you should have an appointment with the consultant and a dietician to go through the gluten free diet and how to manage the condition long term. You should also receive a number of staple foods on prescription but in light of the NHS cuts I'm not sure how much longer this will be the case.

hello freefrom and many thanks for replying. I'm sorry your DD is feeling ill again - do you think some gluten has crept into her diet?

I will talk to our GP about blood tests for us all - we will probably go 'gluten free' as a family at home to make things easier, so I had better get on with the tests before then.

Does your daughter get gluten-free meals at school? Or does she take packed lunches? I am going to talk to the school next week to find out if they can accomodate gluten-free, I would really like DS (he is at pre-school there at the moment) to have school lunches as that's the norm there, and it would help with his fussy eating I think.

The dietician should be able to arrange gluten free meals with the school catering company. My DD has school meal on Wednesday because it's roast dinner so easy to adapt, we just supply gf gravy granules. You might be asked to supply some gf items that you get on prescription eg pasta or pizza bases and then they can offer a similar choice to the other children. We also give the school cook a box of the multi-purpose mix so that she can make gf muffins and jam tarts for DD's dessert. They freeze them in batches and get them out as and when. The rest of the week she chooses to take packed lunch. For parties she normally takes her own food unless it's somewhere that I know does a gf option she'll eat. She went away for a week with school in October and they provided a full gf menu for her with some over-the-phone guidance from me.

As for DD's current symptoms, there's definitely no gluten creeping in as we're very strict plus her Ttg blood test results are back within normal range. We're trying to rule out other possibilities at the moment so she's been dairy free for over a week and we've now also been asked by dietician to try removing even Codex wheat starch & 'acceptable' levels of barley malt in case she's a 'super sensitive' coeliac. It's a bit of a minefield but hopefully we'll work out what's going on and get it sorted asap.

That is really helpful about the school meals, will talk to the dietician about that when we get there. Still trying to contact the hospital to find out how long we will have to wait for the endoscopy - it is horrid not being able to get started.

DS1 is a very fussy eater, which will make the gluten-free transition harder. I am hoping that he might become less picky when his gut has healed, though. Did you find that happened with your DD? (perhaps she wasn't a picky eater to start with though)

Thankfully DD was never really a picky eater although she did go through phases. I was still amazed at how well she took to the gf food though, especially the bread as I really don't think I could eat it. Her favourite foods were always bread and cake so it was really hard but we've managed to find suitable alternatives for just about everything she used to eat. The one thing she struggles with is breakfast as she simply doesn't like anything but Shreddies - and there's no gf version of those! She has gf cornflakes but only because I make her and she certainly doesn't enjoy them. We tried rice crispies and Mesa Sunrise but no joy. There are chocolate gf cereals aimed at kids but she never like those before she was coeliac and wouldn't even try the gf versions. Sainsbury's have a good freefrom section including gf chicken nuggets & sausages in the frozen section. DD reckons the chicken nuggets are better than normal ones and they're definitely less greasy. A really useful cupboard essential for emergencies is Heinz beans & sausages. Normally, sausages are a no-no as they contain wheat (unless you buy expensive ones) but amazingly the Heinz ones are gf (they even say so on the tin in very small writing).

DS1 is a bread-and-cake eater as well, and he will only eat Shreddies for breakfast (occasionally porridge) - oh dear! I am thinking about getting a breadmaker and making gf bread, since it sounds like the ones for sale aren't very nice.

At the moment, DS won't eat beans, or any meat, but am hoping we can gradually persuade him to change.

A gf diet for a good eater is hard enough, for a picky eater it is going to be hard work...

Dietary Specials gluten & wheat free white ciabatta rolls are great and the closest thing to 'normal' rolls we have found. You can get them in most supermarkets but sadly not on prescription. What sort of things does your DS normally eat (other than bread & cake!)?

Hmm, he likes
Shreddies
cheese sandwiches/toasties
grated cheese
mashed potato (should be all right with that one!)
chips
macaroni cheese
plain pasta with no sauce
chocolate biscuits
chocolate buttons (not sure if Cadburys choc buttons are okay or not?)
chocolate cake
chocolate ice cream (you can probably detect the theme going on here)
flapjacks
gingerbread biscuits
broccoli, raw carrot and frozen peas (under a bit of duress with these but will eat them)
dried apricots (if they are in the tiny little chunks, not big pieces)
and he drinks vast quantities of milk

hoping he is not lactose-intolerant - I have read that quite a few coeliacs are..

Well from that list I'd say it really shouldn't be that difficult (apart from the Shreddies!). There are plenty of gf choc biscuits/flapjacks/cakes and you can even find them in cafes these days (look for Honey Buns products often near the till). Cadbury's choc buttons are fine as it most 'just chocolate' it's when there's other stuff added that it's a problem (eg Maltesers, KitKats, Twix etc). One thing to look out for is gluten hidden in sweets, especially those chewy laces or similar. I was really shocked to find that sweets could contain wheat as I just never imagined they would. Gf pasta is pretty good too but unlike 'normal' pasta, it goes hard when cold so if you plan to use it in a cold pasta salad the next day (eg with tuna, sweetcorn & mayo) you need to store it in water in the fridge overnight then drain the water before adding the mayo or dressing. Oh, and buy yourself some toaster bags to make sure you don't contaminate the gf bread in the toaster (or use a clean grill) plus you will need a separate tub of butter/spread for the same reason because even crumbs can be enough to cause a reaction. One way to get him to eat meat might be to start with a meat sandwich paste to get him used to the taste before you get him used to the texture of proper meat (maybe minced meat first). I've found that the supermarket own brand pastes are less likely to contain gluten than the branded products like Shippams, just need to check the labels.

Lactose intolerance can be a problem for some coeliacs but it's normally only a temporary thing and once the bowel heals they can re-introduce lactose without any problems.

Oh, brilliant, freefrom you have cheered me up! Glad to hear that it won't be too hard to find replacements.

And especially glad to hear about the cafe possibilities. We go to cafes for a coffee/snack quite often - DS regards it as a great treat, so I was a bit worried about not being able to do that. I will keep an eye out for the Honey Buns products and see if I can find some local places that stock them.

Sweets shouldn't be too much of a problem as DS1 doesn't like them (strange boy). REALLY pleased to hear that choc buttons are okay!

I was thinking of switching the whole family to gluten-free bread (if we can find one that's nice enough) to avoid the complications of the cross-contamination. A lot of people use our kitchen and I don't think I can be confident that no-one will use the wrong thing, unless I just make the whole kitchen gluten-free.

Very good idea about the meat paste - will have a look for that.

Thank you! You've made me feel it is all manageable :)

oh, and I just got a letter saying that we have an appointment with the paediatric gastroenterologist next week, hooray. I think that is for a pre-op assessment/discussion, not the actual endoscopy, but it means things are moving forward.

is there anything I should particularly ask about / discuss at that meeting, do you think?

The most important thing to ask is about whether they plan to do it under general anaesthetic or sedation. I'm pretty sure they will use a general on a little one as young as yours but best to check. I would also ask if you can start him on gf as soon as the endoscopy is over rather than having to wait for the results and see if you can book an appt with the dietician asap too. Once you get the diagnosis I would strongly recommend joining Coeliac UK (the dietician will probably recommend this too). Their advice is invaluable. You can have a look at their public access website now, it's got loads of useful info.

Oh, very helpful, yes, I will ask to have the dietician appointment asap.

I have just joined Coeliac UK (I can join free for 6 months) and am busy looking up DS's favourite food brands!

Great, keep us posted and good luck for next week

will do, many thanks :)

My DD was incredibly fussy when she was ill, basically only ate plain carbs and fruit (nasty Mummy doesn't allow chocolate/sweets v often!)... someone told me once that it is quite common in little kids with severe coeliac. because they feel crap all the time, they only fancy comfort foods and also that their bodies can't process meat very well so a lot of them naturally become semi-vegetarian.

2 months after we changed her diet, and she's now much better. she'll eat sauce with her pasta, GF chicken nuggets/fish fingers, baked beans, egg etc.

one thing i have found essential re visiting cafes, it to have some GF biscuits/ treats in your bag just in case. you'd be surprised how many cafes don't have any GF sweet stuff (even in the middle of she-she London!)... DD has eaten more chocolate and biscuits in the last 2 months than she had in the previous 2 years due to me over-compensating..!

That's really hopeful FSB, yes DS is definitely a comfort eater, but with a bit of luck he will be like your DD once gluten-free. Thinking back, until he was about 18 months old, he was a brilliant eater and would have a go at almost anything, but gradually gave up things after that. With hindsight, that may have been the coeliac symptoms kicking in.

Fingers crossed for massive improvement in diet! I know I will have to avoid over-compensating too. And will have to restrain the grandparents from lavishing gf treats on him...

By the way I have started a thread for people sharing tips on gluten-free cooking - the link is here just in case anyone wants to have a look

Hi redridingwolf, freefrommum has given you some great advice - just a couple more things - your child can be completely outwardly symptomless and still have coeliac disease. It is important that you, your husband and your other children are tested. My youngest was diagnosed 3 1/2 yrs ago - is now 8 with all the same symptoms you described. They said to get us all tested so I did myself and my husband, took one look at my 9yr old, tall, skinny, eats amazingly well, no symptoms and thought he was fine. A year later we moved to Singapore and I just thought I would l make sure before we went. His antibodies were off the scale and he also had another serious allergic oesophageal problem that was discovered under gastroscopy. So glad we tested even though no symptoms.

Also re breakfast, mine get home made rice pudding. I make 2 a week either choc flavoured using Green and Blacks hot choc powder/milk or strawberry jam. Perfect as rice is slow release energy and much better than the awful gf breakfast cereals. Also french toast - very quick - I am now in US but you can use genius bread which is ok.

We are all gluten free at home now and I feel better for it too.

Good luck - let us know how you go. I bake their cakes for school - Phil Vickery even has a fab recipe for Bakewell Tart - yum, yum. Dove's Farm gf flour is ace too.

Thank you Texas! Very interesting about the symptomless thing. I have booked for DH and I to have blood tests at the GP this week - and have asked for DS2 and DD to be referred to the hospital for tests too (they are too young to have them at the GP). The GP was very co-operative, didn't question it at all.

If there are no symptoms, does it mean that internal damage is still happening?

We are planning to go gluten-free for everyone at home - I think it will push us all to more healthy eating. I am rather hoping that someone else in the family will also be coeliac (like DH or I) so that DS1 doesn't feel he's the only one.

Rice pudding for breakfast sounds like a really good idea - can you share your recipe? Either here or on this gluten-free recipe thread?

Hi redriding, even if no outward symptoms like diahorrea (cant spell that!) and stomach cramps , still means lots of damage to gut - my eldest had a lot of damage to his gut but after 3 months on GF diet, he was clear and zero antibodies. It took over a year for my youngest (diagnosed first) to be negligible antibodies and they were both on the same diet - and I am extremely careful. There is lots of hidden gluten in foods - esp processed foods and I have separate toasters. We use the same bread board - I make theirs first. I think I find the hardest thing going to parties - I can never just go anywhere without thinking what food I have to take with me. Oh well ...

Rice Pudding - I make double the amount below..

Im in the US so I use Arborio Rice but short grain rice is fine and if you can mix white and brown (some kids don't like the taste of brown) or just use brown even better.

So, 50g rice
600ml whole milk
10-15g green and blacks hot choc powder

I heat the milk in a pan first (reduces oven cooking time) then bake slowly at 300F for 3 hrs. Or instead of choc powder use 1 tablespoon strawberry jam and dot the top with butter. Just check it occasionally as I make loads as both eat it and are 12 and 8 - big appetites. Might need less time if you heat milk first.

Its an old Annabel Karmel recipe adapted.

HTH

that's very interesting texas. DH and I went for blood tests today and I am pushing to have my other two DC tested (though the doctors keep saying no point if they are not showing symptoms) - I will make sure it happens.

rice pudding recipe sounds yummy. I will definitely try the choc version next week. Can you put it in the oven with cold milk? Does it just take a bit longer to cook then? I have an Aga, so long oven cooking time not a problem.

Hi redriding, Its really frustrating because the GP's don't have a clue about coeliac - left undiagnosed, even if you have no outward symptoms may lead to lots of nasty things later on including lymphatic cancer, liver failure, and lesser stuff in between. If you can get some information from the web - maybe Coeliac Society - to show the GP that it is imperative that all first degree relatives are tested - ie you, DH, and the kids then that might help.

Re the rice pudding - yes, will take longer with cold milk but the Aga sounds ace and you can just bung it in. I have to make two types of cake for lunches each week as one likes choc cake and the other doesn't!

Hello , I have been directed here from general heath and I must say I have found all of this invaluable. We have had a nightmare journey with my DD1 (aged 12) - she has suffered from stomach pains for many years with a diagnosis of abdominal migraine. Last month she suffered crippling pain which lasted constantly for over 2 weeks. In the end I took her to casualty absolutely fed up that no one was taking her pain serously ( as I have migraine all the doctors were blinkered that due to family history that this must be what it was). Finally after she was admitted a blood test was done and the consutant tested for coeliac (although I quote "I am 100 % certain this will come back negative "). He in effect told her to look towards cognitive therpay to manage the pain and that we will certainly never fnd out what is wrong with you !!

Anyway following a private consultation in which the doctor put her on omeprazole we finally got the blood test back (after I had to chase it round several hospitals) and was told it was positive. I am so relieved in one way but in another so angry that she could have had this done a long time ago but no one thought to do it (I did ask but was shot down each time I mentioned it). I should have gone with my instincs and had her tested privately.

Anyway we are seeing the consultant next week and from what I understand a biopsy will be performed. I had started DD1 GF but I think from what you are saying she needs to be on gluten for the biopsy. I have asked this in another post but can you let me know if ther is the situation that the biospy will come back negative and if so which diagnosis is the one thats used ? I guess Im worried that my initial joy of a diagnosis we may go back to square one.

Thank you all for your help

Just a quick post as I'm off to bed but wanted to say that yes it's very important your DD has gluten in her diet for 6 weeks before biopsy. False positives on the blood test are rare (false negatives are more common) but the biopsy is the 'gold standard' and will give you a definitive answer. Will post more tomorrow.

quick post here too just to say, yes, the biopsy won't show results if your DD is eating g-f - the advice is that must be eating gluten for at least 6 weeks before test. your doctor should have made this clear.