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Allergies and intolerances

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Original poster

Biopsy Results for Coeliac Disease?

28 replies

alliwantforxmasissleep · 27/07/2010 14:53

Just wondered if anyone could reassure me and tell me how long they had to wait for results of a biopsy to test for coeliac disease? DS had his done on 6th July and we're still waiting. The consultant said they would take 10 days but 3 weeks on and we're still waiting

OP posts:

TheGenie · 27/07/2010 15:43

I got my results in a week so perhaps you need to ring your doctors. Luckily I didn't have the disease although I had every single symptom, strange but true. I decided I'd had enough as my stomach was ruling my life. I cut out everything artificial, I got rid of wheat and gluten in my diet. It took a while to get used to not having biscuits and chocolate but found a chocolate alternative the helps with the sugar cravings. I'm now pain free, have lost nearly a stone in weight and feel better than I've ever felt. My stomach is now the last thing on my mind, its great! Let's know how you get on.

JustShaggingForNow · 27/07/2010 16:00

I got my results back in about a week too. Like The genie I was negative for Coeliac but my Dr said that it was highly likely that I had very bad IBS with a severe gluten intolerance.

I have cut out all gluten (as much as possible, sometimes meals at friends and dinner out can mean some creeps into my diet and boy do I suffer for it!!!) and whilst I've not lost weight - avoiding gluten now means my food stays in my body long enough for me to actualy gain some nutritional value form it(!) - I do feel a lot better.

There are so many brilliant GF foods available these days and cakes and biscuits made with GF flour taste just as good as regular cakes!!

If I were you i would chase the consultant and find out why on earth you're still waiting. Was it on the NHS of privately? that may determine if the results are sent directly to you or to your GP. Even so - chase chase chase!!!

Original poster

alliwantforxmasissleep · 27/07/2010 16:01

Thank you I've phoned them every other day for the last week and they don't know when the results will be in. DS has been gluten free since the day after the biopsy and is already feeling (and looking) a lot better but I'm still very keen to make sure it is coeliac disease and get the relevant follow-up from his GP.

OP posts:

Original poster

alliwantforxmasissleep · 27/07/2010 16:11

I've phoned the consultant's secretary and she's on annual leave but the person who's covering for her is going to see what she can find out and call me back

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JustShaggingForNow · 27/07/2010 16:13

Oh how irritating for you. And nasty for your DS.

Whilst the treatment for gluten intolerencce and coelic is identical it's still importnant to know which your DS has.

I have been known to cheat and eat a non GF item if it's something I know I'll love. Being a gluten intolerent I can do that safe in the knowledge that whilst it might make me unable to leave the house for a day and feel pretty lousy for the rest fo the week, at least it's not doing permanent damage.

Keep battling with your GP and maybe even contact the hospital where he had the colonoscopy / gastroscopy.

simpson · 27/07/2010 18:14

Can I hijack this slightly??

My DD (2.5) may have coeliacs and a biopsy seems likely now.

What can I expect when its done? Is it a day thing and will DD be knocked out totally??

Thanks!!!

Original poster

alliwantforxmasissleep · 27/07/2010 19:23

Feel free
My DS (he's 5 btw) had a blood test first then when that was positive he was referred to paeds for his endoscopy and biopsy. It was done as day case and he was asleep for it. He was gone from the ward for around an hour and was home around 3 hours later. Think the procedure took around 15 mins but they keep them in recovery until they're awake. DH went with him up until he was asleep and I went up to recovery to collect him.

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simpson · 27/07/2010 19:27

Thanks for that

She has had the blood test which has come back negative but she had that when she was 14mths old and I hear that it is not always hugely reliable anyway

Procedure sounds a bit like my DS's (5) grommets op which he had last wk in terms of time to recover and how long it takes to do etc...

Original poster

alliwantforxmasissleep · 27/07/2010 19:39

it's a scary thought. I was a nervous wreck and practically ran up to the recovery room to get him. He's a happy camper now though - no more sore tummies and I think he might Mrs Crimbles biggest fan

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simpson · 27/07/2010 19:52

Bet you are glad its over

Think I will be a nervous wreck too although I am probably a few mths off as dietician has just referred us back to pead (who discharged her in March )

What symptoms did/does he have??

Not sure if DD does have coeliacs but I guess its best to rule it out iyswim

Original poster

alliwantforxmasissleep · 27/07/2010 20:18

We've not seen the dietican yet have to wait til the results of the biopsy confirm it before he'll be referred.

His symptoms started when he was 3.6 but sometimes he seemed ok and others he was much worse. Symptoms were bloated tummy, very light coloured poop which went from very very loose to horrendous constipation. He pooped every time he went to the toilet and was very windy and it smelt awful. Also, he had very little energy, was very grumpy (no wonder ) and his growth slowed right down.

He's been off gluten for 3 weeks and his tummy looks normal, he's not as windy or pooping as much and he seems to be much happier. Poop is still a little light but is getting there

Just need the results to confirm it now.....

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simpson · 27/07/2010 20:29

fingers X you get the results you want

DD saw the dietician first as she is severely lactose, soya & oats intolerant.

She is now intolerant to something else but no idea what and poos all the time

So coeliacs just being ruled out I guess.

Also because her father is from Northern Ireland and coeliacs is more common in Irish people for some reason.

Original poster

alliwantforxmasissleep · 27/07/2010 20:51

Thanks

Hope you find out what's going on soon. If she is coeliac or gluten intolerant then I highly recommend Doves Farm pasta and Mrs Crimbles chocolate brownies

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simpson · 27/07/2010 21:08

Thanks for tip

Where do I buy them from, health food shop or normal supermarket??

Chocolate brownies sound good!!

Original poster

alliwantforxmasissleep · 27/07/2010 21:15

Normal supermarket, I go to Tesco mostly but I think most of them are getting better with their free from ranges.

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simpson · 27/07/2010 21:26

Oooh DD will love those!!

simpson · 27/07/2010 21:31

What do you do for bread, out of interest??

Really don't want to have to make it myself if I can help it!!!

bramblebooks · 27/07/2010 21:52

Genius bread is fab!
My dh is coeliac. We thought ds2 was coeliac, but it transpired he has t1 diabetes - the disease presented later after his coeliac test. They're genetically linked

Original poster

alliwantforxmasissleep · 27/07/2010 22:59

DS loves normal bread so he's having a bit of a break from it so he forgets what it tastes like and then will hopefully be a bit more open to trying different bread.

I've tried Genius though and it's great! Tastes just like plain bread....yum

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Original poster

alliwantforxmasissleep · 27/07/2010 23:02

simpson - have just looked at the Mrs Crimbles packet and they're only gluten and wheat free It must be so difficult having to think about lactose too. I feel bad now for mentioning them. Sorry

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simpson · 27/07/2010 23:36

don't worry....

TBH if she is diagnosed as coeliacs the lactose/soya may go as I have heard its a common side effect

Original poster

alliwantforxmasissleep · 28/07/2010 07:03

very true will keep fingers crossed that's the case.

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Original poster

alliwantforxmasissleep · 29/07/2010 19:04

Finally got a call from the hospital (after a lot of chasing) confirming that DS definitely has coelic disease. I have a feeling that the results were delayed because the Dr who had been dealing with him is on holiday.

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simpson · 29/07/2010 19:35

glad you finally got the results...

What happens now???

Original poster

alliwantforxmasissleep · 29/07/2010 20:05

This is the bit that made me a wee bit grumpy the Dr who phoned couldn't really tell me, all he said was that he was definitely coeliac and asked if he'd seen a dietician. He hasn't so he's been referred but that's probably going to take ages and I have loads of questions.
I'll have to make an appointment with the GP to sort out which food he'll be getting on prescription so I'm hoping he'll know more.

At least we know now and can deal with it

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