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Just diagnosed 2 yr old with Coeliac disease

(15 Posts)
ginaribena Wed 25-May-11 19:59:59

Hi mumsnetters, my first time on chat but really need some advice from someone who's been there! I'm very anxious about my DS aged 2 (3 this weekend!) who is very poorly, diagnosed last week with coeliac disease and started gluten free diet last Wed.

He has lost a lot of weight, no energy at all (can't even climb stairs) and is barely eating a thing. He lost 1 kilo last week and I'm scared he's getting weaker. Also vomiting sporadically and characteristic CD stools. We are waiting for Paediatrician (appointment next Fri) but had no advice apart from 'cut out Gluten' (GP on holiday this week).

Is it usual for children with this to have NO appetite whatsoever? Despite all my efforts - even Pomme bears and chocolate he's not interested eating miniscule amounts. Can anyone tell me how long it was before their DC started to show recovery, and what are first signs? Once they start is it a quick process? I'm scared my baby boy will never be the same again he's lost his mojo completely!

Any experiences greatly appreciates, I feel completely in limbo with no real support at moment! Thanks

pinkytheshrinky Wed 25-May-11 20:13:30

My DDs were not symptomatic to that level - one was diagnosed because she is diabetic and the other was tested because when she was younger she had been poorly. When they have had challenges (as one in particular is very sensitive now she is gluten free they have recovered in a few days - my diabetic child loses control of her blood sugars and takes about 7to10 days to level out) I am well practised on the food thing so if i can help in anyway let me know. Please remember that gf diet is a CURE - it will be ok.

CMOTdibbler Wed 25-May-11 20:23:51

My experience is with cd diagnosed as an adult - I was 25 - but my understanding from others is that although children get very sick, they recover very quickly too once you establish a gf diet.

Have you found some good resources for starting out on the gf diet ? It seems overwhelming at first, but will soon become second nature.

As your ds is so poorly, a good temporary way of getting calories and nutrition into him quickly would be to buy a fortified drink like Fortisip (a pharmacist will be able to advise on which ones are suitable for his age) as its pretty easy to get a child to drink a chocolate 'milkshake'. Normally I'd say to make fullfat milkshakes with cream and icecream, but often people are lactose intolerant when first diagnosed with cd due to the bowel damage, so its worth not overloading on milk.

The coeliac society have a lot of support to offer you - have you got in touch ?

ginaribena Wed 25-May-11 20:33:41

Oh good, really hoping to see some improvement soon! Most of people I've come across seem to have been adults when diagnosed. The coeliac society website is great, but having some technical difficulties registering (hope they will email me back soon) and eagerly awaiting my food directory in post ordered last week!

Had asked Dr about fortisips but not very forthcoming - maybe I'll ask at pharmacy tomorrow. He is wanting loads of dairy and I'm trying to keep to reasonable amount as I don't want to make symptoms worse. Fobbed him off with soya milkshake for couple of days but he seems to have twigged as refusing now! Its so hard not to be completely obsessive over his calorie intake.

CMOTdibbler Wed 25-May-11 20:55:20

Would a run down of my favourite gf things help ? Be warned - some gf stuff is vile, and some things you have to just adjust to. So, fr'instance, its pretty much pointless trying to have sandwiches routinely. GF pittas work ok, and when Genius bread is on its first day, it works, but otherwise its a dry, crumbly thing.

ginaribena Wed 25-May-11 21:16:18

Oh yes that would help as finding experimenting quite expensive!!! And biscuits taste like sand (but I'm 12 weeks pregnant so think morning sickness not helping with open mind to new tastes!)

Do you find it easier for whole family go gf? Have banished his favourite snacks from house like breadsticks to make it easier on him, so both him and my 4 yr old on gf biscuits etc., but still got normal bread products in cupboard.

Booner Wed 25-May-11 22:24:24

My son was diagnosed with coeliac disease at 3yr 4ms and was exactly how you describe. He had lost a lot of weight, no energy, had to be carried upstairs etc.
We went gluten free and we saw an improvement in a couple of weeks.

We have gone gluten free at home as it is easier (because my other son was tested although he had no symptoms and he tested positive as well) but do have friends over and use regular bread for sandwiches.

He is now 5.5 and Ive will reassure you that he is now very fit and healthy, happy, outgoing and full of beans.

What I did to start with was to go through all my cupboards and remove gluten containing items like stock cubes and then went shopping to replace with gluten free versions (these don't necessarily have to be the specialist Free From version just alternative regular products).

We have also cut out items with barley malt extract (most normal cereals) as my son had been gluten free for a few months and then had stomach pains after having some frosted flakes which contained barley malt extract.

If you list the sort of foods you want gluten free alternatives for I can let you know which ones we find are good because quite a lot of the biscuits are like sand!
You can also get gluten free basics on prescription such as flour, bread, pasta, plain biscuits.

Hope your DS is feeling better soon and happy to help.

nightcat Wed 25-May-11 23:55:56

another great place is celiac.com site & forum (inc section for parents of babies and young children)
We gave up on bread altogether, don't try replacing one type of cereals with another like-for-like, go for cooked/protein breakfast as little nutrition in carbs generally and sugary cereals just spike up sugar/insuline cycle which is not that healthy.
You will be amazed how much better he will get - and how soon!
Best to cook from scratch if you can and aim for wide variety.

ginaribena Thu 26-May-11 20:40:55

Oh thank you for tips smile, Booner it is so good to hear they can make a full recovery as he looks so poorly couldn't see past it. I think when we see paediatric gastroenterologist next week I will also feel reassured and also maybe he will have started to pick up then as will have been 2 weeks.

Are there any corn based tortilla wraps that don't contain wheat? I haven't found any but read that you can get them. Got a nice gluten free kids cookbook with lots of ideas but got big test on Sunday as it's his birthday and he's been planning a police car cake for ages! If you have tried and tested sponge recipe anyone that would perhaps save some experimenting on my part.

Thanks for your responses everyone

alliwantforxmasissleep Fri 27-May-11 17:13:11

I found gf tortilla wraps in Asda, think they were the chosen by you range but were in the free from section. Found some in Tesco too, they were Lovemore, also in the free from section. There were 4 in each pack and they cost around £2.80 so not cheap (just like all the other gf stuff!)

My DS was diagnosed last summer when he was 5 and is doing really well now. He showed signs of improvement after a few weeks and is like a different boy now smile We're waiting for an appointment to get DD, who's almost 4, checked as she had a positive blood test for coeliac last month. In some ways its easier because we know she'll feel so much better as soon as her diets been changed but its very frustrating having to wait confused.

Hope your DS feels better soon and has a lovely birthday smile

InMyPrime Fri 27-May-11 17:24:52

Sorry to hear about your poor DS, gina. The good news is that of all the illnesses he could have been diagnosed with, coeliac is one of the more manageable as it requires no medication and there's usually a quick recovery if you stick to the diet. I was diagnosed as an adult (aged 20 but had had it for years before that and never been diagnosed). Even though I'd been suffering with it for about 10 years - stunted growth in adolescence, anaemia, vomiting and constant stomach complaints but no diagnosis - I was well on the mend within six months and felt fitter than I'd ever felt within a year. That's including time to recover from blood transfusions due to severe anaemia!

So the good news is your DS will most likely recover very quickly and will get his appetite back as well. If you want specific advice on how to manage the coeliac diet in toddlers / children, check out the Coeliac UK website for lots of info on this. They are a really good charity and provide a free info pack to any newly diagnosed coeliacs or parents of children diagnosed with it. Also, when you see the paediatrician next week, make sure they refer you to a dietitian as well as s/he will be able to give you more detailed advice tailored to your son's needs.

Best of luck - I'm sure your son will be eating gluten-free birthday cake and homemade pizza in no time!

Booner Sun 29-May-11 17:32:09

Happy Birthday to your DS Gina, hope you have been successful with the police cake.

I have the gluten free cookbook for kids by Adriana Rabinovich and the cup cakes in there are fab and have never gone wrong for me, they do ground almonds. The choc chip cookies are also great and are a bit soft and chewy. All the recipes I have tried have been good from that book.

I have made many flat gluten free sponges I'm afraid!! The flour mixes you get on prescription tend to have cake recipes on the side and are usually pretty good.

Also taco shells, taco trays and tortilla chips tend to be gluten free as made from corn but check the ingredients.

Hope you have a good day.

ginaribena Wed 01-Jun-11 20:37:50

Thanks Booner, the cake was passable! Had whole can of condensed milk yikes! But he had a lovely day and has started to feel so much better since last week, already like a different boy and I feel so much happier too! He started to play again and even run and jump can't believe what a quick turnaround.

Have that cookbook too so will definitely give those cup cakes a go!

AlsoAvailableSober Wed 01-Jun-11 20:42:13

I have heard that these products are all pretty good

Glad to hear DS is on the up smile

Booner Wed 01-Jun-11 21:27:44

Really great news about your DS gina, he's obviously on the road to recovery and pleased he had a good birthday. I know what you mean about feeling happier yourself. It is quite astonishing to watch the day to day improvement just from a change of diet.

Good luck with the cupcakes. They freeze well and I try to keep some in stock as they are very handy to take with you to birthday parties etc.

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