Waiting for two months on biopsy results

[Checks]

Hi, 

Wondering if  anyone has had a similar experience to this, biopsy for Coeliac took place two months ago and still waiting for the results? I'm in the UK. I've tried chasing up via GP, and secretary for the Gasterentorologist, with no success. Theysaid the results should be with me by four weeks after biopsy, then when I chased it was told it might be another week.

My GP is nice, but doesn't seem at all knowledgeable in guiding patients through the diagnosis, so when they did my blood tests I had no idea about needing to eat gluten and was definitely not eating the recommended amounts (even so, my results were still positive, albeit on the weak side. It then took a further four weeks for me to be able to discuss the results, by which time I had cut out gluten entirely as I was so unwell on it and needed to be fit enough to teach my classes including GCSE students (symptoms I get are tingling in feet, dizziness, palpitations, brain fog, feelings of anxiety, exhaustion and the bloating/ alternating bowel habit) plus look after my own two children! I had to restart gluten for the endoscopy which I know (too late) is not ideal.

I was hoping to have the results (which I was promised would take four weeks max and then when I chased up, they said it might be another week ) and use the summer to start recovering, but as per the above that hasn't happened. Meanwhile they have told me to keep going with the gluten, and of course having been off the gluten (even if only for six weeks or so) it's so tough to handle, I'm managing toast at bedtime, and because it's the holidays I can go at a slow pace of life in the daytime.I can't imagine how I will function when term starts in a few weeks, no fun having to leave a class with an upset tummy! It's also starting to put a strain on the family, as my husband and children saw how well I was when gluten free, and are finding it upsetting standing by and watching me eat the gluten then put up with the symptoms...

When I did mention to the GP how difficult it was to keep the gluten going his only suggestion was to 'stop for now and restart if further tests are necessary'(sigh) 

I know that due to Covid the NHS is very overloaded, and I feel so bad chasing them up but after two months am starting to wonder what's happened to my biopsies. Anyone else had this?

 

[trents]

If your serum antibody tests were positive, even weakly positive, after being on a low gluten diet, I would assume you have celiac disease. 

If you have already had the biopsy and are just waiting on results, why are you still eating gluten? Were you already off gluten when the biopsy was done? You mentioned you were not eating much gluten when you had the serum antibody test done but did you increase your gluten intake for at least 6 weeks before the biopsy was done?

[cristiana]

Hi Checks

I'm British and whilst I haven't had the same experience relating to a coeliac disease diagnosis (I was diagnosed in 2013) I have experienced a few other issues with the NHS since Covid started and yes, the poor NHS really is struggling in various areas, some more than others.

For example, normally I get an annual NHS coeliac review including blood tests and a follow up appointment with my gastroenterologist and it's about 12 months overdue now.   

However, not everything is due to Covid:  my daughter has a completely different health issue and needed a follow up appointment following an MRI on her knee and we heard nothing for months.  Several people in our neighbourhood whose children have musculoskeletal problems were hearing nothing from the hospital either.  Eventually we spoke to the hospital, and it turned out it was nothing to do with Covid - it was an admin error!    So since that happened, I've encouraged people to chase up appointments.

It sounds as if you have gone through the right channels but there is something else you may wish to try: you may wish to contact PALS?   Although a lot of people use this to lodge complaints, I am not sure but I believe the service can also be useful for helping to resolve the sort of issue you describe?  

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Cristiana

 

 

Edited August 18, 2021 by cristiana

[Checks]

Thanks for the quick reply Trents.

I stupidly dropped the gluten for a while after the serology, not knowing any different as was feeling pretty rough, but did introduce it again 4 weeks prior to endoscopy, the advice from my GI was one or two slices of bread for a few weeks before... They told me when I was coming round from the sedative to keep the gluten going until results come back, whenever that is. 

[Checks]

10 minutes ago, cristiana said:

Hi Checks

I'm British and whilst I haven't had the same experience relating to a coeliac disease diagnosis (I was diagnosed in 2013) I have experienced a few issues with the NHS generally since Covid started up and yes, the poor NHS really is struggling in various areas, some more than others.

I was told by my GP that our local hospital's gastroenterology department was in meltdown, or words to that effect.   Normally I get an annual NHS review including blood tests and a follow up appointment with my consultant and it's about 12 months overdue now.  

Hi Cristiana,

Thanks for the swift reply, goodness 12 months overdue is staggering, hope you are feeling well and doing ok. Definitely highlights the plight of the NHS... Fingers crossed you get your follow up soon!

 

 

[cristiana]

1 minute ago, Checks said:

Hi Cristiana,

Thanks for the swift reply, goodness 12 months overdue is staggering, hope you are feeling well and doing ok. Definitely highlights the plight of the NHS... Fingers crossed you get your follow up soon!

 

 

Hi Checks

I'm fine - I actually have a fantastic NHS gastroenterologist and as I have another health issue I thought it best to see him privately, which put me back about £90.   Well worth it though otherwise I think I'd be really concerned (being a professional hypochondriac!)

Cristiana

[Checks]

23 minutes ago, cristiana said:

Hi Checks

I'm British and whilst I haven't had the same experience relating to a coeliac disease diagnosis (I was diagnosed in 2013) I have experienced a few other issues with the NHS since Covid started and yes, the poor NHS really is struggling in various areas, some more than others.

For example, normally I get an annual NHS coeliac review including blood tests and a follow up appointment with my gastroenterologist and it's about 12 months overdue now.   

However, not everything is due to Covid:  my daughter has a completely different health issue and needed a follow up appointment following an MRI on her knee and we heard nothing for months.  Several people in our neighbourhood whose children have musculoskeletal problems were hearing nothing from the hospital either.  Eventually we spoke to the hospital, and it turned out it was nothing to do with Covid - it was an admin error!    So since that happened, I've encouraged people to chase up appointments.

It sounds as if you have gone through the right channels but there is something else you may wish to try: you may wish to contact PALS?   Although a lot of people use this to lodge complaints, I am not sure but I believe the service can also be useful for helping to resolve the sort of issue you describe?  

https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Cristiana

 

 

Thanks Cristiana, yes that's a good idea, will try going through PALS.

3 minutes ago, cristiana said:

Hi Checks

I'm fine - I actually have a fantastic NHS gastroenterologist and as I have another health issue I thought it best to see him privately, which put me back about £90.   Well worth it though otherwise I think I'd be really concerned (being a professional hypochondriac!)

Cristiana

Definitely worth paying that for peace of mind! 

[Onegiantcrunchie]

Hi Checks,

I'm British too and I also had an extremely long wait for endoscopy-related stuff here. Sorry I don't have any advice, just wanted to say you're not alone!

[Checks]

7 minutes ago, Onegiantcrunchie said:

Hi Checks,

I'm British too and I also had an extremely long wait for endoscopy-related stuff here. Sorry I don't have any advice, just wanted to say you're not alone!

Hi, thanks for getting in touch and no worries, hope you are doing ok now. Did you manage ok with keeping the gluten going til you found out? 

[Onegiantcrunchie]

Just now, Checks said:

Hi, thanks for getting in touch and no worries, hope you are doing ok now. Did you manage ok with keeping the gluten going til you found out? 

Thank you, same to you!

Actually after something like a 3-month wait (between blood test and hospital apt day) I didn't go through with it. My GP told me not to start eating gluten again for the test, so when I arrived for the endoscopy the surgeon turned me away. By that time I'd been off gluten for over a year and was trying to put my health back together again so I decided not to do the gluten challenge just for the sake of the biopsy (I already had 2 positive blood tests).

But yes it was months of waiting which didn't help! Hopefully you get your news soon - can you call your GP and ask if they've received anything?

[Checks]

2 minutes ago, Onegiantcrunchie said:

Thank you, same to you!

Actually after something like a 3-month wait (between blood test and hospital apt day) I didn't go through with it. My GP told me not to start eating gluten again for the test, so when I arrived for the endoscopy the surgeon turned me away. By that time I'd been off gluten for over a year and was trying to put my health back together again so I decided not to do the gluten challenge just for the sake of the biopsy (I already had 2 positive blood tests).

But yes it was months of waiting which didn't help! Hopefully you get your news soon - can you call your GP and ask if they've received anything?

Thanks for explaining, Onegiantcrunchie. Agree definitely not helpful! I checked with the GP a few days ago and am waiting for phone consultation, but have also contacted PALS to chase up just in case it's some kind of clerical error somewhere. I keep thinking I'm going to have to stop the gluten, or reduce it if this carries on much longer. Like you, i have two positive  blood tests -mine are apparently weakly positive, but probably would have been higher had I been eating more gluten! Ah well! 

[Onegiantcrunchie]

9 minutes ago, Checks said:

Thanks for explaining, Onegiantcrunchie. Agree definitely not helpful! I checked with the GP a few days ago and am waiting for phone consultation, but have also contacted PALS to chase up just in case it's some kind of clerical error somewhere. I keep thinking I'm going to have to stop the gluten, or reduce it if this carries on much longer. Like you, i have two positive  blood tests -mine are apparently weakly positive, but probably would have been higher had I been eating more gluten! Ah well! 

You're welcome Checks. They've lost my blood test before so clerical error is very possible!

How are you finding the gluten challenge? It sounds awful and I'm very surprised they ask you to keep doing it even once they've collected the biopsy sample.

[cristiana]

9 minutes ago, Onegiantcrunchie said:

I'm very surprised they ask you to keep doing it even once they've collected the biopsy sample.

Yes, this was a new one on me, too.  I wonder why they said that?  It almost sounds as if they knew something was up with the lab that was doing the screening and they thought you'd be called back - hope I'm wrong!

For any UK residents who are reading this thread, here's a really good summary of the UK route to diagnosis.  Hospitals are working really hard to reduce waiting lists so hopefully if you are about to embark upon this journey you will find it much more straightforward.  Also, please don't delay in reporting any new digestive systems which have lasted more than three weeks.  The sooner you are in the system, the better, especially if things are a little behind at the moment.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

Edited August 19, 2021 by cristiana

[Checks]

8 hours ago, Onegiantcrunchie said:

You're welcome Checks. They've lost my blood test before so clerical error is very possible!

How are you finding the gluten challenge? It sounds awful and I'm very surprised they ask you to keep doing it even once they've collected the biopsy sample.

It's been a horrible experience, especially with the lack of information and support from the hospital/ GP, and my family are so frustrated with having to watch me do this. Now with school looming over me am starting to feel a bit desperate, but still hoping I can hear before September.

[Checks]

8 hours ago, cristiana said:

Yes, this was a new one on me, too.  I wonder why they said that?  It almost sounds as if they knew something was up with the lab that was doing the screening and they thought you'd be called back - hope I'm wrong!

For any UK residents who are reading this thread, here's a really good summary of the UK route to diagnosis.  Hospitals are working really hard to reduce waiting lists so hopefully if you are about to embark upon this journey you will find it much more straightforward.  Also, please don't delay in reporting any new digestive systems which have lasted more than three weeks.  The sooner you are in the system, the better, especially if things are a little behind at the moment.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/

I was surprised too when they said it (well, as surprised as you can be when coming around from the sedative!) I checked with the Coeliac Society and they did endorse the advice. Perhaps because of the scope limitations in hitting on patches of flattened villi which just so happen to have occurred in the area it can reach to? I really wish I had found the Society earlier and known how to go about the whole process. The GP ordered the coeliac test as part of a host of things he wanted to test for, without telling me anything more.  

I was expecting to be told there was nothing wrong as I've often suspected that my symptoms were due to auto immune issues but always been told I was fine. My mum has Chrohns Disease and my gran had Rheumatoid Arthritis and my brother is currently doing a gluten challenge as he's been experiencing similar symptoms to me.

[cristiana]

8 minutes ago, Checks said:

I was surprised too when they said it (well, as surprised as you can be when coming around from the sedative!) I checked with the Coeliac Society and they did endorse the advice. Perhaps because of the scope limitations in hitting on patches of flattened villi which just so happen to have occurred in the area it can reach to? I really wish I had found the Society earlier and known how to go about the whole process. The GP ordered the coeliac test as part of a host of things he wanted to test for, without telling me anything more.  

 

Thanks for posting this.   That makes sense.   Hopefully your endoscopist (if there is such a term!) will have taken enough samples and you will soon be able to put this behind you.   Do let us know when you hear, hopefully it won't be long now PALS is involved.

Edited August 20, 2021 by cristiana

[Onegiantcrunchie]

1 hour ago, cristiana said:

Thanks for posting this.   That makes sense.   Hopefully your endoscopist (if there is such a term!) will have taken enough samples and you will soon be able to put this behind you.   Do let us know when you hear, hopefully it won't be long now PALS is involved.

Seconded. Really sorry you're going through this Checks.

[Checks]

Thanks Cristiana and Onegiantcrunchie! Will let you know how it goes. 

[Checks]

Just thought I'd post an update (albeit a bit cryptic!) on this. So, after some to-ing and fro-ing between myself and PALs, I received an email today from the latter, telling me the Gasterentorologist has just received my results, that I can stop eating gluten and that they will be in touch with me as soon as possible to organise a clinic review.. Not quite sure what that means but we are all very relieved that I can stop the gluten! I'll update properly when I can. Thanks everyone for the support! 

[Onegiantcrunchie]

54 minutes ago, Checks said:

Just thought I'd post an update (albeit a bit cryptic!) on this. So, after some to-ing and fro-ing between myself and PALs, I received an email today from the latter, telling me the Gasterentorologist has just received my results, that I can stop eating gluten and that they will be in touch with me as soon as possible to organise a clinic review.. Not quite sure what that means but we are all very relieved that I can stop the gluten! I'll update properly when I can. Thanks everyone for the support! 

Finally an update of sorts! That's great. Hopefully some others can offer you advice on how best to recover from the gluten challenge for now  !! Apparently bone broth is very helpful for healing the gut. There are some nice chicken and beef ones on Amazon UK, they're pricey but it's just so much more convenient than making it at home if you want to try bone broth. Hope you're doing well in the meantime Checks!

[Checks]

30 minutes ago, Onegiantcrunchie said:

Finally an update of sorts! That's great. Hopefully some others can offer you advice on how best to recover from the gluten challenge for now  !! Apparently bone broth is very helpful for healing the gut. There are some nice chicken and beef ones on Amazon UK, they're pricey but it's just so much more convenient than making it at home if you want to try bone broth. Hope you're doing well in the meantime Checks!

Thanks Onegiantcrunchie! The bone broth sounds really good, have ordered the beef one to try. Looking forward to saying goodbye to the various fun symptoms I've been having 🙂 Hope all well with you too!

[cristiana]

19 hours ago, Checks said:

Just thought I'd post an update (albeit a bit cryptic!) on this. So, after some to-ing and fro-ing between myself and PALs, I received an email today from the latter, telling me the Gasterentorologist has just received my results, that I can stop eating gluten and that they will be in touch with me as soon as possible to organise a clinic review.. Not quite sure what that means but we are all very relieved that I can stop the gluten! I'll update properly when I can. Thanks everyone for the support! 

Checks... you must be relieved!  I'm so glad that the results are in, too.  Yes, it would be so good, if you get a moment, to let us know what the results are when they are finally in.   It's good to know that results can take this long to come through - I can update others in the same situation.  I suspect Covid is to blame....

Edited September 1, 2021 by cristiana

[Checks]

3 hours ago, cristiana said:

Checks... you must be relieved!  I'm so glad that the results are in, too.  Yes, it would be so good, if you get a moment, to let us know what the results are when they are finally in.   It's good to know that results can take this long to come through - I can update others in the same situation.  I suspect Covid is to blame....

Thanks Cristiana! Yes definitely relieved, and there's a part of me that's dying to know what my results actually are, although the blood tests and horrible reactions I have to gluten are convincing enough for me personally. I agree with you that it's likely due to Covid, with staff on other duties or isolating... there's definitely a staffing issue as PALs did mention a shortage of secretaries. I guess they wouldn't want to call me for a clinic review if they hadn't found something... Not sure I can face more gluten for further tests!

[Checks]

Hi everyone, thought I would let you know that I had a call from my Gasterentorologist in person today, she was really lovely - and very apologetic, as she confirmed that I do have Coeliac they found blunting of the villi. She did say that she was surprised that she hadn't had my results sooner, and that she felt really bad I'd had to persevere with the gluten for so long, so perhaps other forces than Covid were at play somehow. Am so relieved! Thanks for all the support everyone 🙂

[cristiana]

Hi Checks

Thank you so much for contacting us to update us.  I am so glad you know where you stand now, after all this time, and what a relief you have found out before school starts (presumably, if your area is like ours, it starts next week?) 

You should now be entitled to all sorts of extras on the NHS, including a dietician, Dexa bone scans, blood tests, annual consultation with the gastroenterologist,  Category 6 jabs for Covid, etc.  It seems a bit hit and miss what is on offer to coeliacs in different areas, but well worth pursuing anything the NHS offers you. (Again, sometimes people are overlooked so if things go "silent", do chase this up in case).

Do join Coeliac UK, if only for the first year.  I think you will find their Food and Drink Directory worth its weight in gold - and/or their app.

Lastly, do come back to us if we can help you in the future.  It's nice to have a fellow Brit to talk to from time to time! 😆