How long is the usual wait for a biopsy to confirm coeliac disease after a positive blood test?

[rainbows_mountains]

[Regalbirdy]

Hi rainbows_mountains,

I think it probably depends on what part of the UK you live in (like a lot of other NHS services).

For me personally it was something like 6 to 8 weeks. This might of been two weeks shorter had my GP's surgery remembered to actually make the referral and not lost it! They were most apologetic when I chased them up to find out why I had heard nothing.

I understand that all endoscopies of this type should be treated/classed as urgent.

You may find you are given a choice of hospitals as I was. Choosing a hospital further afield meant I could be seen a lot quicker. If I had've waited for an appointment in my local hospital it would have almost doubled my waiting time.

My advice would be to be as proactive as you can regarding appointments. If the biopsy does confirm coeliac disease then the sooner you give up gluten, the sooner you will start to feel better. However please try not to give up eating gluten before the biopsies are taken because it will seriously affect the results.

I went gluten-free the day after my endoscopy was done, as I didn't see the point of waiting for the results of the biopsies to come back. I was more than ready for the change. The diagnosis confirmed I was Coeliac and I've never looked back - I definitely feel much better now.

Best of luck, do let us know how you get on.

[pretender]

IgA blood test 2nd January 2007, Consultant appointment 30th March 2007, excluded all wheat,rye,barley &oats. Endoscopy/biopsies 25th May 2007, Consultant appointment for results 17th June 2007. Hospital was Kent & Canterbury. A lot will depend on how busy the Gastroenterology department is. Hope this helps

[Jojo230383 in reply to pretender]

Urgh I know this is a really old post but not giving me much hope! I am waiting on an endoscopy appointment for my 6 year old was put on list in November and I believe this will be Kent and Canterbury or possibly William Harvey

[rainbows_mountains in reply to Jojo230383]

Hi, I hope you don't have to wait too much longer. I think I was quite lucky in the end as once my gp had referred me to the hospital I think I only had to wait about 6 weeks for endoscopy and was seen a month later for the results (although I stopped eating gluten straight after the endoscopy). After that it was about 6 weeks for bone scan and 7 weeks to see a dietician. I hope you get an appointment soon and if your child does get a diagnosis of Coeliac disease then the Coeliac society are great for advice. Best Wishes.

[Jojo230383 in reply to rainbows_mountains]

Thank you, it feels like we have been waiting long time, I think about 15 weeks atm and when we first saw the gastroenterologist he said her blood results were the worst he had seen in a child. It's just so hard to watch your child suffer and be in pain when I know I can probably help her.

[rainbows_mountains in reply to Jojo230383]

As you've already seen a gastroenterologist I wonder whether their secretary might be able to check where you are on the waiting list or give an indication of current waiting times... It must be really hard to see your little one suffering.

[Cooper27 in reply to Jojo230383]

Unfortunately quite a lot of areas are short at the moment, and the waiting lists are pretty long. We had to wait 6 months in the end (we were told it would be 6-12 weeks). This was 18 months ago.

Also worth noting, they will phone you to agree a time for your appointment, it's not like a standard hospital appointment, where you have no wiggle room. If we'd known all that, we would have booked one last holiday!

Out of interest, what was her blood level? They're trying to encourage doctors not to put a kid through a biopsy if the level is over 70, as it's pretty certain they're coeliac, and the biopsy can be a bit traumatic for a little one.

[Jojo230383 in reply to Cooper27]

It was 106. I said that re the biopsy but he said because it was so high he wanted to do the biopsy to see what damage has been done already. Which seems crazy to me because he is sure of the diagnosis so why cause more damage keeping her on the gluten diet.

[Cooper27 in reply to Jojo230383]

Over 100, they definitely don't need the biopsy to confirm the diagnosis... I'm not really sure what the benefit would be to knowing how much damage is done, but I guess it's each to their own.

You have my sympathy, because we were in the same situation (blood tests over 100) - at first we thought "lets enjoy gluten food for these final 6 weeks", but by end of it, we were pretty frustrated.

If it helps, up until biopsy day, she only needs to eat the equivalent of 1 slice of bread per day. Children's bodies are still in a phase of growing, and that's good, because it means she'll heal quickly, and shouldn't really have any lasting damage.

[Jojo230383 in reply to Cooper27]

Thank you, we have reached the stage where we are struggling to get her to eat at all because to her eating means pain. She has put on .5 of a kilo in a year

[Cooper27 in reply to Jojo230383]

Maybe try getting her to eat sour dough bread, or make something using spelt flour or rye. Pearl barley might also work. People who are intolerant to gluten often react very badly to white flour, but not quite so severely to rye, barley or spelt flours. I'm making a bit of a leap here, but she might react less severely to those grains, because they're slightly lower in gluten.

I'll also warn you, it takes a long time (about 6 months) for antibodies to fall within normal range after going gluten free. If you get a blood test at 3 months, you'll probably get a telling off for contaminating her diet, but you won't be doing anything wrong - it's just the time it takes.

[Jojo230383 in reply to Cooper27]

Thank you so much for all your advice x

[barny]

I was told no gluten right away but results 5weeks after I live in midlandsxx

[Chris21]

I saw consultant in dec, he referred for scope as it was just before Christmas period I didn't worry about appointment but as soon as we reached 1st jan I phone the scope secretary and was given appt for 6th jan. I was told not to change my diet as the results would give a false reading, my next appt with consultant is July! But was told results will take 14days.im now chasing consultants secretary as gp hasn't heard. But I too stopped eating gluten the day after investigation and feel ten times better. This was Colchester general.

Hope you don't have to wait too long, good luck

[Lynilou]

Similar story, late sept 2005 blood tests, referred to hospital Oct, dec 2005 consultant appointment followed by quick gastroscopy as it was so close to Christmas. The consultant told me there that it was coeliac so I could start my gluten free diet straight away over Christmas- very depressing but necessary- and back for formal results to consultant on 6th Jan 2006 . And very recently I had further problems so following bloods showing deficiencies etc my dr put in a referral in November, I couldn't get an appointment before Christmas so I went back to my dr and she then put in a request for an urgent appointment which meant I both saw my consultant and had my gastroscopy on the 16 th Dec, again I was told straight away and had another follow up appointment in jan this year.

Have you had your gastroscopy and waiting for results, or waiting for an appointment? My advice is go back to your dr if it seems too long. Best wishes

[haydn74]

I had a positive blood test, but had to have endoscopy as well. The results to confirm it came 2 weeks later. Good luck

[rollonsummerrunning]

My consultant told me he suspected coeliac disease immediately after endoscopy, but confirmed two weeks later. From referral to diagnosis, about 3 months.

[tiger2]

I waited about 6 weeks from blood results to biopsy.went gf after biopsy.

[Hidden]

Hi rainbows-mountain, I saw a gut specialist and they booked me in for an endoscopy within a couple of months, I was also told just after the biopsy that I was a coeliac.

I realised that they knew that I was a coeliac by some of the questions that they asked me about my symptoms etc when they booked me in for an endoscopy. But they did not want to say until they knew for sure.

So I urge you to keep eating gluten until you have had the endoscopy/biopsy. This is because if you stop eating gluten completely and the test is negative then you could have to do a gluten challenge which is much harder because once a coeliac has stopped ingesting gluten it has a much more dramatic effect and many cannot endure it. So tempted as you might be I'd wait as it is in your best interests and on a scale of 1-100 I'd give this 100 as important.

Good luck and do let us know how you get on,

Jerry

[rainbows_mountains]

Thank you so much for everyone's responses. Hopefully I will get a date for the biopsy soon, I guess six weeks or so isn't that long although it does feel like it when you're not well. In the meantime I will have to make the most of the wait and have all my favourite foods that I'll not be allowed anymore!

[Regalbirdy]

Hi,

Yes I remember that those six weeks or so did feel like a lifetime. It played with my head a bit and being able to give up gluten was actually a relief!

It does become frustrating, so it's worth checking to see if your local gastroenterology has got any cancellations.

Good luck

[Malago]

Yes, just like others have suggested to other G/F's ........ use this time to eat loads of glutenfoods while you can. I'm sure it makes things easier and the added benefit is that there will be plenty of gluten in your system when you have the endoscopy biopsy.

For me doctor tested for CD in Feb 2012 and endoscopy about 2 months later. I am so much better, but I still wish I had said 'goodbye' to Ryvitas! Something from my childhood and now partner has taken to them. All the best.

[Kelly1978]

I know this is an old post but I could do with some advice, my son (ages 11) had a positive blood test for both iron deficiency and coeliac last week, his coeliac result was 364!! The earliest consultant appointment I can get is for 6 weeks time!! He’s got severe tooth decay, is tired, bloated, constipated and severely underweight (BMI of 13 and under the 1st centile) should I be trying to get an earlier appointment? The longer I keep giving him gluten the more unwell he is. I’m not sure what I should do? Any advice welcomed. TIA.

[rainbows_mountains]

I'm sorry to hear how unwell your son is, I don't really know how the appointments work but maybe it would be possible to say you would be able to attend at short notice if they have a cancellation... I guess you could call your gp to see what they think as well. I think I saw something on Coeliac UK about diagnosis for children not always needing a biopsy to confirm and using other tests which may be quicker.

[Kelly1978 in reply to rainbows_mountains]

Thank You, I’ve contacted my GP who has now arranged to make an urgent referral for him due to how unwell and symptomatic he is.

[rainbows_mountains in reply to Kelly1978]

That's good news. I hope all goes well for you and your son.

[Kelly1978 in reply to rainbows_mountains]

The GP has just phoned me and said that she has spoken to the consultant paediatrician who has advised that due to his low weight, symptoms and high coeliac blood result he won’t need a biopsy and to start a gluten free diet immediately. They are continuing with the urgent referral though.

[rainbows_mountains in reply to Kelly1978]

That sounds really positive, the referal is good as it will open the doors to other services like the dietician. In the meantime I think Coeliac UK have some guides to explain the diagnosis to children and also help on what foods are gluten free. It can be a bit daunting at first but soon becomes second nature. Good Luck.