3yr old being tested for Coeliac's disease - anyone with any experience/advice?

[Wordsmith]

My 3.10 yr old son hasn't been right for a few months - his weight has dropped (he's now the same weight as he was at 2 and a half), he has a distended tummy, wasted arms and legs, no fat on his bottom, miserable most of the time, constantly says he's tired, and his appetite has virtually disappeared. We were worried about his food refusal first of all, then his weight loss, and took him to the docs who referred him to a paediatrician. I wss quite shocked when the paed said he wanted to do further tests - blood, urine and stool - and that one of the conditions he'd be checking for was coeliac's.

I've googled loads on the disease and tbh ds is showing all of the classic symptoms. part of me is relieved that it can be cured with diet but i'm aware it's not as easy as it sounds.

Trouble is we have to wait till the end of feb for our next appointment and I'd like to be armed with info if that's what it does turn out to be.

So, if anyone has experience of young children developing coeliac's, could you advise me

1. What tests are required to diagnose it? Will the consultant be able to tell for sure from the bood/wee/poo analysis?
2. Given that his symptoms seem so conclusive and we have a month to wait to see the doc again, would there be any benefit if trying a gluten free diet right away or will this affect any further tests which may be required?
3. How easy is it to move a child onto a new diet when they seem to have no appetite anyway?
4. How easy is it to cater for a coeliac's child when the rest of the family is 'normal'?
5. are the benefits of a gluten free diet as instant as the websites would have me believe?

Any other advice/info would be gratefully received as we are rapidly reaching the end of our tether. Our DS is so miserable and so thin.

Off out soon but would be so grateful for any reply!

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Why don't you go and put all these questions to your GP? If I were your GP I'd expect it. And if it is coeliac, I expect that the tests will be back very quickly-generally speaking, if your DC has to have a jejunal biopsy to prove/disprove coeliac disease, putting him on a gluten-free diet will actually make the biopsy negative so it's worth talking to your Dr so you know exactly what tests have been done and what stage you are at.
If your LO is coeliac, your GP can prescribe gluten-free products for him.
There is loads of help and advice available from various sources.
HTH

Thanks Neverenough, we only found this out yesterday so hardly have had time to talk to anyone, nevermind GP. And I know what he/she would say - refer me back to the consultant. I can read up on it on the web but I'm just interested in people's real life experience as am finding it all v hard to cope with atm.

Yes and I'm sure you'll get loads of help, but a word of caution-until you DO know the diagnosis for sure, don't get too sidetracked because information out of context can be very alarming.
Anyway, I hope you do find out what is the matter soon, poor little DS.

So do I.

I can't give you any personal information. But I once worked with a young man who had CD.

He was working with us during his summer break from university where he was reading pharmacology. He represented the university at Rugby (had just come back from touring S africa with them!) and was a delightful, fit, healthy, strapping lad.

He coped with his dietary restrictions with no problem at all.

1. A blood test will be done first, if it is positive then a biopsy will be done (or even if it is negative if your daughter has a certain marker in her blood which means that in her case the antibodies would not show up).

1. Do NOT go glutenfree - for the tests to be accurate the child has to be on a normal gluten containing diet for at least three months prior to the tests. However, if your DS gets very poorly then go back to the doctor and ask that the consultant appointment/biopsy be brought forward.

1. Once your DS goes on the diet her appetite will return and he will become a bottomless pit! You will not believe how much food will disappear!

1. I do all baking glutenfree in order to keep the oven clear of gluten (I use Dove's Farm flour from Tesco/Sainsbury's but do not use this until after diagnosis). All main meals are glutenfree - it's not difficult a lot of foods are naturally glutenfree and I switched to "safe" brands of other foods.

1. For children the response can be VERY rapid - there's another thread on the board at the moment where only five days in the child is very much better. With my son within a week he really was a different child. Sometimes with adults full recovery can take two years but with children it's usually very, very quick.

You'll find a lot of support here:

www.members2.boardhost.com/glutenfree

and on the attached supplementary board (coeliac.info/suppboard) you will find the distilled information collected over the years which will answer almost any question you can think of! For anything else just post on the main board and you'll get a fast reply!

Sorry, I referred to your DS as a daughter in the first line!

Flamingtoaster thankyou that was really useful advice (and I forgive the gender switch!)

If your experience is of a child with coeliacs, how did they cope with the biopsy and what does it involve?

Once you get the hang of it, cooking gf really isn't that bad. You do have to be careful of cross contamination of butter, mayo, ketchup etc in a mixed household - we mark the butter and jam and use squeezy bottles where poss.
As Flaming said, it is important to keep eating gluten until the tests.
The biopsy is done by putting a long. flexible camera down into the stomach via the mouth, and then into the gut. For adults its done under sedation, but for children they have a quick general.
I was diagnosed at 25, and in a couple of weeks I felt better, but it took a year to recover completely. From what I hear, children recover much much faster.

My son was diagnosed at 14 - without the biopsy due to a delay in arranging it (he had an impressive allergic reaction, had to come off all gluten and they reckoned his gut would have healed during the delay). On the coeliac board a lot of the children have had biopsies and as cmotdibbler says it is fine as they have a light general anaesthetic.

As cmotdibbler also said cross-contamination is an issue after diagnosis - two toasters because even a few crumbs could cause a painful reaction and set back recovery, all butter/spreads and jams either labelled for use by the coeliac or careful use of clean spoons and knives every time the contents are touched. I found (because I have the extra concern of allergic reactions and epipens if things are contaminated) that if preparing a meal that has gluten as well as glutenfree items it is easiest to prepare the glutenfree bit first, cover it and then do the gluten bit. If you handle bread etc with gluten you wash your hands before handing the glutenfree, use separate utensils if cooking glutenfree pasta as well as gluten containing past. We found it easier as far as pasta is concerned to buy extra gf pasta for the non-coeliacs and only do one lot! It really doesn't take long to get into it - if you are used to cooking and baking from scratch it is easier than if you are not, but in any case once you get a diagnosis just post and you'll get lots of help.

This is the hardest bit - waiting for the diagnosis when you know that once off gluten the recovery will be rapid. It is unbelievably hard to give your child something which you know is causing the problem but hopefully it won't be long before your DS is back to being a happy, energetic, totally well little boy.

this very topic is currently the top of agenda in Allergies section

Thanks Flamingtoaster - hadn't heard of separate toasters etc before.

Nightcat - I learn something on MN every day. Didn't even know there was an allergies topic! Will have a look now.