View topic - another new member, 21mths old test positive

by **pam100** » Mon Mar 31, 2008 1:08 pm

Hello
My daughter blood test for ceoliac came back positive last week, one of many of my questions is how long would you recon she will be waiting for a biposy?? Its very hard feeding her normal food knowing its gonna be causing her problems,(as she is so young so she cant tell me if shes in pain, but doesnt sleep well, wakes up screamin) so since sat i started the GF diet, i know i shouldn but i figured i will be at least few weeks waiting on the test then maybe i can slowly re-introduce the gluten a couple weeks before hand, I spoke to a lady from the ceoliac society this morning, she said she understands it will be hard to give her gluten as it causes problems but its really important at my daughters age that the test comes back accurate, she recommend not cutting out the gluten all together but to reduce it then as it gets nearer the time for biopsy to give her more..
any advise would be appreciated.
thanks

by **Louise L** » Mon Mar 31, 2008 1:23 pm

Pam,

I waited over 4 months for a biopsy, even though I went private. I went on the diet for 3 months and only introduced gluten closer to the date of biopsy, which was a mistake as it gave a false result! As much as I know how much it hurts to eat gluten, its so much better to get a proper diagnosis.

by **jess** » Mon Mar 31, 2008 1:43 pm

So hard to watch a little one in pain, Pam. Problem is that a blood test is not conclusive, it just shows if the antibodies are present. The only real test is a biopsy which will show if the villi are flattened. Once off gluten, the villi can sometimes repair themselves very quickly, depending on the amount of damage that has been done and, as Louise has found to her cost, can then give a negative biopsy. You may feel you are being cruel to your babs by giving her gluten, but in the long run you will be doing the right thing by getting an accurate diagnosis. She is so young that I would suspect that her body will heal very quickly once on a gluten free diet. Try and sit it out (not easy).

by **pam100** » Mon Mar 31, 2008 1:50 pm

thanks for quick reply, 4 mths is a long time to wait, thats nuts! I wonder if it might (small chance) that it would be quicker for a child.. I know your both right about keeping feeding her and i think if i get a date in the next couple of days then i will start to re introduce it, Its mad but i can see a differnce in her already, only been on GF since sat.. But i know its important.

thanks again
pam

by **jess** » Mon Mar 31, 2008 1:56 pm

The fact that you've seen a difference so quickly would certainly suggest that she is coeliac, which would reinforce the need to be on gluten for the biopsy. Unfortunate, I know. :cry:

by **Yummy** » Mon Mar 31, 2008 4:24 pm

Hi Pam,

I only waited four weeks (private). When i called the secretary to consultant i said i was prepared to go to any Dublin hospital @ anytime to have same carried out. Originally they had given me a date for ST Vincents (my nearest hospital). Perhaps try calling them again and explain the circumstances and ask if cancellation list. It is unbearable that your pool L.O should have to suffer for 4 more months.
I often wonder about my daughter (nearly 2) who GP said was too young for a biopsy. She does'mt eat much gluten anymore anyway as eats the same food i do (i was diagnosed in Dec).
Best of luck, sometimes nagging can also work :idea:

by **pam100** » Mon Mar 31, 2008 8:34 pm

Thanks guys. Will put her back on her ordinary food again reluctantly as i know in d long run it will be for best. Just cant bear to think that she will have to wait so long for a biopsy.. Fingers crossed im wrong.

by **jess** » Tue Apr 01, 2008 9:37 am

Keep on at them, Pam. Don't worry if she is a coeliac. it can be well controlled and the diet isn't all bad (we just all like a moan!). Let us know what happens.

by **pam100** » Fri Apr 04, 2008 8:34 pm

Just to let ye all know we got a date for our daughter for the 14th of April. Absolutely thrilled that i got it so soon. So no problem now sticking with old diet for that period of time. Recently received all my membership pack from C.S so reading up on all the info about food, is there anywhere else u guy's would recomend that i get info/food/receipe's or books.
Also can i change her diet as soon as she has her biopsy or do i have to wait for the results...
Thanks for all your help & encouragement.
Pam.

by **daveyboy** » Fri Apr 04, 2008 10:27 pm

pam100 wrote:Just to let ye all know we got a date for our daughter for the 14th of April. Absolutely thrilled that i got it so soon. So no problem now sticking with old diet for that period of time. Recently received all my membership pack from C.S so reading up on all the info about food, is there anywhere else u guy's would recomend that i get info/food/receipe's or books.
Also can i change her diet as soon as she has her biopsy or do i have to wait for the results...
Thanks for all your help & encouragement.
Pam.

.
Hi pam100,
You could have a look around my Web Space,
there's plenty of information and links to items on Coeliac Disease + recipes etc
lots to look at.
.
http://daveurde1.spaces.live.com/.
Best Regards,
David

by **jess** » Sat Apr 05, 2008 11:14 am

Great news, Pam. As soon as the biopsy is over you can start the diet as there will be no more tests for Coeliac. The Society's book is really helpful when shopping. Don't get daunted the first shop when it takes about 2 hours longer than usual because you are looking up every item! It does get easier. Try shopping in Aldi as well, most of their food is labelled as to whether it is gluten free or not. Don't forget, if she is coeliac, to get a prescription for breads, flours, porridge etc. as these are available on the drugs refund scheme. Also get a one liner from the gp stating that she has to follow a special diet for Coleiac disease and then you can send this into the tax office for them to put on file as you can then claim the tax back for specialised gluten free food at the end of the year on your Med 1 form.
Hop over to the recipes board and post what type of recipes you are looking for and we will all help as much as we can.
Good luck on the 14th and let us know how you get on.

by **pam100** » Sat Apr 05, 2008 7:38 pm

Wow david thats fantastic, will be a great help in the near future thank you..
Jess thanks so much for that, thats a great help, will let you know how I get on!!

Thanks again
pam

by **pam100** » Mon Apr 14, 2008 8:00 pm

Hi
Had the biopsy today, Doctor said he could see the intestine was damaged, but still have to wait for biopsy results (nxt wk).. But her diet has been started from today, he said she would be like a different child in couple of weeks, so im over the moon.. I know i wont have any problems gwtting her to eat the GF food so that much will be easy!!

Thanks for all the advise..

pam

by **jess** » Tue Apr 15, 2008 9:32 am

Glad to hear it's all over and has been identified. At last you can get on with things. My husband has just been diagnosed too!

by **pam100** » Sun May 04, 2008 11:24 am

thanks everyone, Jess thats mad now that your hubbie was diagnosed! Does it make it easier for you now??

View topic - another new member, 21mths old test positive

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