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Coeliac help and advice

(11 Posts)
DSM Tue 09-Oct-12 12:20:32

I've just been diagnosed with coeliac disease. It's been diagnosed through blood test and am awaiting an appointment for a biopsy.

I'm being given conflicting advice - the first doctor I saw said I was to immediately follow a GF diet. The second doctor then said I was NOT to stop eating gluten else I would get a negative result in the biopsy?

I can't keep eating gluten, I have been GF for 6 days and already feel a hundred times better. I don't want to get a negative biopsy result though, so how long would I have to have been eating gluten for it to affect it? Could I eat gluten for a day or two before the biopsy or is this not enough?

I really need some advice from people who have been through this. It's hard enough having to think about changing my diet so drastically without this conflicting advice making it even more confusing.

nutmegthespringerspaniel Tue 09-Oct-12 13:11:07

Best not to go gluten free - its very hard to go back to eating gluten once living G/F

http://www.mumsnet.com/Talk/general_health/a1538972-coeliac-test

has some info

AppleCrumbleAndFish Tue 09-Oct-12 13:23:07

gluten free message board is a great source of information. I'd say it's best to continue eating gluten until the biopsy. Having said that DH had a follow up biopsy over a year after starting his GF diet - and he rigidly stuck to it - and there were still signs of gut damage.
I'd say things have improved dramatically in the 8 or so years since his diagnosis. Labelling is clearer than it was making it easier to identify GF food. Fresh bread is now available in all supermarkets and eating out is also much easier, although In my opinion, that is still the hardest part.

DSM Tue 09-Oct-12 13:26:10

Thanks, I've read through that and it was quite helpful, but I'm still not sure what to do about the test? I don't even have a date yet - should I continue with gluten in my diet for the next however long it takes? If I go GF now am I going to get a negative result from the biopsy?

Eating gluten makes me feel so unwell.. But if I don't eat it I won't get a formal diagnosis.

CMOTDibbler Tue 09-Oct-12 13:26:14

You'll need to be eating gluten everyday for 6 weeks before a biopsy to get an accurate result.

Its up to you though whether you choose to have the biopsy - some people feel that with positive bloods and positive response to diet they don't need to have the biopsy to know what they need to do.

DSM Tue 09-Oct-12 13:35:21

But I won't get prescription foods without the biopsy.. 6 weeks? Okay. So I'm back to a gluten diet then. And 6 weeks of feeling unwell.

AppleCrumbleAndFish Tue 09-Oct-12 13:43:24

6 weeks is normal advice. It does say somewhere on that site how much gluten you should consume per day to ensure it's enough for a positive test. Like I said though, DH still had gut damage over a year after he stopped eating gluten as seen on his follow up biopsy.

tkband3 Tue 09-Oct-12 13:49:14

You must continue to eat gluten until you've had a formal diagnosis from your biopsy. Some GPs will now use a positive blood test as sufficient for a formal diagnosis, but as someone else has said, you won't get food on prescription, which is invaluable, without a formal diagnosis.

Give coeliac uk a call - they will now answer queries from people who are waiting for a diagnosis, but I'm afraid they will simply confirm what others have said. coeliac uk

It's horrid I know - I had to continue feeding DD1 gluten for several weeks between her positive blood test result and her biopsy, and it was awful, knowing that I was effectively poisoning her with every meal. However we couldn't do without the prescriptions for bread, pasta etc (all three of my DDs have coeliac disease), so it was worth it in the end.

MoreBeta Tue 09-Oct-12 13:51:58

Yes you must continue eating gluten if you are going to have a biopsy.

I agree with others, once you come off gluten eating a tiny amount will produce a severe reaction so best not to stop and start again.

itshotintexas Thu 11-Oct-12 02:17:42

Also agree with others, if you want the prescription for g/f foods, then you need the formal diagnosis and stay on the gf foods. As we don;t live in Uk, once my youngest came back positive in blood tests and the wait was so long for the biopsy, I just took him off gluten as I couldn't stand to see him rolling around on the floor in agony. And he still has a formal diagnosis on all his medical records. We don't get gf food on prescription, so I couldn't care less about that side of things. But it is important if you are in the UK. Hope you get a date really really soon for the biopsy. Good luck.

brandysoakedbitch Thu 11-Oct-12 02:44:24

Both my DDs have a formal diagnosis (coeliac clinic yearly/prescriptions) without a biopsy. I would give it a miss if i could. Take a second opinion because a false positive via. blood test if you are symptomatic is very very statistically unlikely. My older dd was tested routinely as a diabetic as her sister because she was a sibling, neither at that point very obviously symptomatic although it was obvious there had been probs when they went GF.

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