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Original poster

Questions about Blood Test for Coeliac disease

32 replies

gimmiegimmie · 12/06/2007 21:58

I am being sent for this blood test but for about 2mths now i have been trying to live gluten and wheat free. The Dr said i do not need to eat the 'bad food' b4 going but i remember hearing that you have to eat the 'bad food' to get a real reading. I just looked on line and 1 site said to eat the 'bad food' for at least 6weeks !!!!
Im soooooooooooo confused
Said this to the dr and confused her, she ended up saying to start today and have the test on monday, mum said i only need to start saturday????
HELP
I've only had 1 cake and a plate of pasta and i feel so so so so so ill.

All advise v welcome

OP posts:
yellowbean · 12/06/2007 22:09

theres a coeliac society, call them, they will know. my dd had this.. i THINK i was told she had to eat the bad food for 6 weeks too.... we didnt do it in the end so cant remember for sure. hope you're okay i know the symptoms arent nice, xxxx

tkband3 · 12/06/2007 22:18

here's a link to the relevant page from the coeliac society's websiste . You do need to have reintroduced gluten for at least 6 weeks prior to any testing. Unfortunately doctor's are frequently misinformed about coeliac so you end up having to do lots of research yourself.

Good luck.

Original poster
gimmiegimmie · 12/06/2007 22:30

Oh Thats the page i looked at but was not sure if it was for the blood test aswell, because of what other people have said.
Im going on holiday mid july so i'll have to leave it till i come back now
Just want to get it over and done with.
Wow 6weeks is a long time to go back on all this for.

If its got to be done then its got to be done

OP posts:
Original poster
gimmiegimmie · 12/06/2007 22:31

Thanks guys

OP posts:
clerkKent · 13/06/2007 12:26

If there is no gluten in your system, it cannot show up in your blood!

It takes a long time to build up enough antibodies from eating food containing gluten for it to show up - that is why the recommendation is six weeks.

hennipenni · 13/06/2007 14:57

Oh bugger, DD has just had the coeliac screen earlier this week,we were told that she only needs to eat gluten for a week which is wht we did

Original poster
gimmiegimmie · 14/06/2007 00:10

Yeah thats the same as my dr. The bloody Dr's should be better informed about this, its not fare on us. It should not be us looking on line then telling the Dr's.

clerkKent If i have been ill for over 20yrs and have only been off gluten for about 2mths (but have had maybe 1 weeks worth of slip-ups) would that have lessened the amount of antibodies enough to give a negitive result? I mean do antibodies go quicker than they build up?
Sorry but i am starting to get confused - i have different people telling me conflicting things.

hennipenni Would you mind posting on here and letting me know the outcome?

OP posts:
catesmum · 14/06/2007 08:08

when we took our dd2 into Great Ormond Street to have an endoscopy and colonoscopy we'd been told that she could stay off her diet for the tests...when we went to get the results the consultant said that the esults weren't terribly reliable as she'd been off the diet...he said that she'd needed to be on the foods for 6 weeks before....

clerkKent · 14/06/2007 08:26

gimmiegimmie, 2mths without gluten is enough to affect your blood and the test result. I am now at the limit of my knowledge, and I have no idea whether antibodies disappear faster than they appear.

I fear that most GPs know very little about coeliac disease - it is pretty obscure and hard to diagnose because of the vast range of symptoms it can present with. The Coeliac Society say that it takes an average of 30 visits to a GP for a proper diagnosis for people who have had symptoms for 20 years; before diagnosis they take 24 days sick a year, reducing to 4 when diagnosed and gluten-free.

hennipenni · 14/06/2007 08:55

Gimmiegimmie, I will post the results when we get them in a fortnights time.

We have decided after reading up on this that we will keep DD on wheat/gluten until we get the results and if they come back negative we will ask for her to be retested in a further 4 weeks time. (keeping her on wheat/gluten of course...)

Redwood · 15/06/2007 18:31

hi all, not sure if this will be read but had my dd blood test results back for this and she is negative ! I am amazed as taking her off wheat has been a transformation in lots of ways, so as far as i'm concerned she has an intolerance. I had taken her off wheat for a couple of weeks before but not 100%. Anyway Dr says it would make no differnce bit sometimes the results are negative when there is an intolerence!!! Dr suggests 'challenging' her wheat abstenance in 3 months time... we will see.

Original poster
gimmiegimmie · 20/06/2007 21:11

Thanks guys

Im going to have to leave it till after the holiday now, im going to be so so so so ill
I wish i didnt come off it all now

hennipenni - i've put a watch on this

OP posts:
SeamonstEr · 20/06/2007 21:15

I had the blood test and it came out negative. I hadn't eaten the bad stuff for a couple of years, and pointed this out but they weren't having any of it.
I wasn't told to eat it before hand either. Perhaps I should bite the bread and ask for another test?

Piksiminx · 20/06/2007 21:19

Will let you know gimmie.

Poor DD has had a few bad episodes since she went back on gluten, with bloated belly as well as the pains, also we have noticed that her appetite has reduced which is a shame as she had put on a fair bit of weight before.

Tis hennie by the way.

clerkKent · 22/06/2007 12:42

You can get a negative blood test but still be coeliac! The only definitive test is a biopsy. I myself had an 'indeterminate' blood test result but I am coeliac.

SeaMonster - if you have been off gluten for 2 years, then even a biopsy would be negative as your body would have had enough time to recover from the 'poison'.

mummag · 26/06/2007 17:50

Dear all

this is my first ever go at this so bound to go wrong. Basically my question is this my daughter is 3, and a super sensitive ceoliac. The problem i am having is with potty training as she is unwilling to even try. To be fair she sometimes just has the worst upset tummy you can imagine, if something has slipped through, so wouldnt be able to get to the potty. However she just point blank tells me she cant. She is starting a pre school in sept that would expect her to be out of nappies, suggestions will be gratefully received. Do you think i could get a medical note for her?

ktmoomoo · 26/06/2007 17:54

my dd aged9 is super sensative ceoliac and was diagnosed at 3 so was already potty trained, she hAd blood test and biopsy she had to continue eating wheat and gluten till after tests

clerkKent · 27/06/2007 12:44

mummag, if it ever gets warm this summer, perhaps you could get your daughter to go without a nappy in the back garden, with a potty available if she wants to try it. If not, she can just use the grass?

catesmum · 27/06/2007 22:12

mummag, my dd2 doesn't have coeliacs but does have ulcerative colitis, and so has frequent flare ups which are just like the coeliac ones...we have managed to potty train her and it was as hard work as our other two children. I was worried about taking her out of nappies because of the mess of flare ups, but it's just become part of our life is she can't make it to the toilet. She starts playgroup in September and the staff are understanding of the situation and will clean her up if they need to...I think there's some legal thing they have to as this is really a disability

PinkTulips · 27/06/2007 22:14

dd is having the test on tuesday and has been put on a fullwheat and gluten diet for the last few weeks to make sure it comes up accurately

good luck

Piksiminx · 27/06/2007 22:20

Test results not back yet.....AAARRRRGGGGHHHH

Piksiminx · 29/06/2007 10:35

Gimmie, have you got your results back yet?

DDs still aren't back as of today, getting really fed up now as she's been bad again for the last few days, desperatly want to take her off wheat/gluten but don't want to as paed says they will retest if it comes back negative or borderline. Feel so sorry for her.

Original poster
gimmiegimmie · 30/06/2007 00:08

Piksiminx - Hi, no results yet - i have not taken the test yet as i am on holiday and didnt want to be ill while im away. Will start eating the bad food when i come home end of the mth. Not looking forward to it
A family mamber said that if you come off it all totaly for a mth or 2 then u can ease it back into your system slowly and it wont affect you like it used to???
This cant be true, can it??? it just sounds wrong

Sweet dreams to you all x

OP posts:
mummag · 30/06/2007 10:21

with regard to the blood tests etc, i think that they are unreliable or if the tests arent the people that interpret the results are. My daughter has such obvious reactions to these products but has never had a biopsy, just a blood test. Laughably when the tests first came back they said yes she is coeliac and advised me to take her off gluten,but said she could have ryevita!!! which she cant of course. Since she has been on a gluten free diet all her tests come back negative for coeliacs which is what you want. Its a minefield this disease noone seems to agree. I would say go with your instinct, even if test negative and take your child or yourself off gluten entirely. Remember its hidden in lots of food.

flamingtoaster · 30/06/2007 10:41

There is a new guideline of going back on gluten for three months if you have been off it for some time. All the links have been listed here:

members2.boardhost.com/glutenfree/msg/1182544170.html

gimmiegimmie - most people find that when they go back on gluten after a break they react more badly (if they are a pre-diagnosis coeliac). This is also often discussed on the board I've linked to above.