5 year old Still having tummy ache. Results are back

[dawnmc]

Hope you get a diagnosis soon. Children do get referred pain and it often starts in their tummy because they cant describe exactly where the pain is coming from. They also get 'growing pains' so thats not a fallacy. Hope its not related.
Good luck.

 

[serankine]

Re: 5 year old Still having tummy ache. UPDATE!!!PLEASE HELP

Thank you to everyone for your advice just an update.

After finally having her endoscopy on the 26th April we have been told that Leah does have coeliac diesase.
After saying that she has been having tummy troubles and feeling ill from when she was first diagnosed November 2010 it took us till December 2011 for her to have blood tests which came back slightly elevated then sent for more blood test January then finally had the endoscopy in april. Results have taken 3 half weeks but at least we now know.
If anyone can give me any advice i would be grateful since this is another new thing we need to learn about. My daugher is 6 next week and need to find a cake.

Im just so confussed.

In one way im glad they have come back possitive since i now know what the problem is and can make the tummy problems go away but then i feel so down, Please if any one has any help i would be so grateful.

 

[cteld]

We MAY have gluten intolerance in our family - don't know yet - but I do know that a few years ago, I altered our household to a gluten-free household for many months. It was a lot of work - there were a lot of considerations - trace amounts of gluten in unlikely ingredients and products, the problem of cross-contamination (like when we were cooking with gluten for others), and finding good gluten-free recipes. The good news is, it CAN be done and there is lots of support online for it. Also, gluten free food can be extraordinarily yummy. I think this is an exciting thing, to have an answer. It really is possible to avoid gluten, and discovering it now means you can prevent so many years of misery and confusion!

 

[shop]

Bless her!!

I hope that you get help managing this alongside her diabetes. Us adults moan about it but I know If it were my son I would have it a million times over rather than him have it. ( diabetes let alone the ceoliac )

Hope you find a cake and that she has a lovely 6th birthday.

Sending birthday wishes and hugs for you (((x)))

Lucy.

 

[iggy-lil]

Hi sorry to hear about your daughter - she has gone through a lot for such a little one .

With regards to finding a birthday cake I dont know what your baking is like(mine is not that great) but there are some gluten free flour in the supermarket that make lovely cakes - maybe make a cupcake stand full of little cakes. I would say the brand we use but dont know if Im allowed to.

My son now 14 has a gluten intolerance(seems to be getting less as he gets older) , he did have the blood test for coeliac but he was lucky that it came back clear.He makes cakes quite a bit with the flour and I never could tell the differerence- must admit dont try them now due to being a newly diagnosed diabetic (type 2). You can get the flour from all the supermarkets or you may beable to get some on prescription. Another option maybe is to contact a cake shop that is willing to make a cake for you with the flour only thing is they have to be careful about any cross contamination from 'normal' flour.
There is a coeliac website if I remember right where I searched for lots of information when we were waiting to see the specailist.

If I can be any help with the gluten free side of things you are more than welcome to give me a shout - dont know lots but know enough to get us through when we needed to.
I must add that I am no expert when it comes to diabetes so not quite sure how flour will effect your daughters blood sugar levels.

Wishing you all the best x

 

[serankine]

Thank you for your help and advice sorry for the late post back.
We have made fairy cakes and blueberry muffins.

Leah seems to be coping very well at the moment and not getting to upset over it. We have had the obvious questions when will it go away and why me?

I am stuggling with pack lunches yet again since shes not keen on the bread (she wasnt keen on normal bread anyway). So this is becoming a bit of a battle.

I just wanted to say to people it has took ages to get to where we are now. Took me ages toget the hospital to actually check for coeliac and even when the blood test come back elevated they still told me the bio-opsy would most likely come back negative. But Leah was always complaining of tummy troubles. So just wanted to really say keep going back to the doctors and hospital if you think there is something wrong no matter what they tell you, you know your own child.
Sorry for going on but this was just such a long process and it didnt have to be.

 

[stoney]

Hi serankine

Sorry to hear about your daughter but it is not all doom and gloom. My son was diagnosed T1 just before his 3rd birthday and a coeliac when he was 8. He is now 15. If you go on www.coeliac.org.uk you will find an lot of information and you will get a list of what you are entitled to on prescription which is given according to age. I assume you have now spoken to a dietitian as to what is available out there and many of the gluten free manufacturers eg. Juvela, Glutafin, etc will send you sample packs if you ask. We have tried THEM ALL but my son prefers Juvela fresh bread straight from the packet for his toast, but we now buy Genius from Tesco (which they have improved recently) for his packed lunch. We get mainly Juvela bread on prescription regularly and the occasional Juvela Mix (for cake and pastry making) . We find Juvela suits our needs. Also many of the supermarkets have gluten free products and if you have a Sainsbury near you they seem to have many of their own brands gluten free. We have only had one bad incident (eating out) in all the time James has been coeliac so it's not as bad as you think.

I hope this has helped but if you need any more information or any help, please feel free to pm me.

Take care and best wishes

Yvonne x :thumbup:

 

[dawnandmel]

Hi all,
My 10 year old son, diagnosed T1 18 months ago is also suffering from tummy aches (bmi up and down lately as he has had colds, sore throat, ear infection etc) visited doctor who checked urine and said no infection.
This information is really helpful as it seems to be quite a common problem - sometimes you feel that you are viewed as an over anxious parent by the doctor.
I will speak with my sons diabetes nurse about this problem.
thank you
Hope everyone is well x

 

[serankine]

While we were waiting for Leah to be diagnosed and for her consultant to look into her 'problems' (tummy aches, very bad wind, diarohea) Her B.G's were up and down all the time some days she was in her 20s all day but 1.0 ketones. then the next day she could be spot on inbetween 4-10. We didnt know what was going on.
Im so glad she has finally found out what the trouble was.
Although its another thing it is not that bad although we havent eaten out yet and we go on hoilday toward the end of next month which i am thinking about quite alot.
We make alot of our own things since leah can be a little fussy. But i have bought a good cook book and ammend some of my own recipes.
I was just concerned it took us this long Leah had been having these problems since 2011 and i told them at every meeting and made notes when she was having tummy aches / wind and i felt i wasnt been taken seriously that i was over reacting and leah was kind of making them up to show her reaction towards her diabetes (which sometimes she does want to go away but apart from that has coped very well considering she did have all this going on and no one listening to her)
I feel bad that since every one was saying it was her way of coping with type 1 and her reaction to it. I was telling her to stop being silly then the next minute she was rolling round on the bed crying i didnt know what to do as a mum.

I must admit now we know and have changed her diet over she is much better. We are still learning about all the foods and labels woulld admit we havent had as much support for the coeliac. still a little puzzling sometimes. But we are all coping especially Leah.

 

[stoney]

Hi serankine

If Leah had the biopsy and coeliac is confirmed, surely you have now seen a dietitian on the coeliac side of things, as we have a different dietitian for diabetes and coeliac. The coeliac dietitian gave us a lot of information, our first letter to doctor for prescription of what we might need and then it was up to us to order what we wanted within our limits. We also had some food samples and leaflets to send off for more samples to try. We have a yearly consultation with the consultant and dietitian together the consultant does a tummy check on James when lying down and we go through his diet sheet (this is something we are sent prior to the appointment and we have to put down the last three days meals (including weekends) so the dietitian can go through it with us. I think you should find out about this as this will get you started on the right road and things will not seem so daunting for you.

I would get in touch with the Coeliac Consultant/Secretary and find out who the dietitian is and take it from there.

Best of Luck

Yvonne x

 

[serankine]

We havent had any of that we have saw a dietion who is the same one for her diabeties which wasnt much use.
We have sent of for the samples.
We havent set up a perscription yet got to go to the local G.P i am going of all the leaflets sent with the samples to work this out. Havent spoke to any consultant. We just had the letter throguh confirming she was coeliac and i rang her diabetic nurse to let them know.
Dont know if we will be having a check up or anything the dietion just said to let them no when we are in for her diabetes check up and then he will see us the same time if we want. I just fell a little let down i supose we have so much support for her diabeties and havent had any for the coeliac. It seemed a little bit like yes she has it hers the letter see you later.