Waiting for two months on biopsy results

[Onegiantcrunchie]

What cristiana said! Very glad you've finally found out and can now look forward Checks

[Checks]

34 minutes ago, cristiana said:

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! 😆

Thanks Cristiana 😊 Yes definitely a huge relief, and just in the nick of time! I started back today but the first three days are training days, pupils go back next week. Most of the schools seem to be doing that locally here too although my children's school is a bit different and they started back today. Have just signed up for Coeliac Society, as you say their directory sounds great! And thanks for mentioning the NHS support also, would never have thought I may be entitled to all that! 

Will definitely check back in here again to see how things are going 🙂

[Checks]

28 minutes ago, Onegiantcrunchie said:

What cristiana said! Very glad you've finally found out and can now look forward Checks

 

28 minutes ago, Onegiantcrunchie said:

What cristiana said! Very glad you've finally found out and can now look forward Checks

Thanks Onegiantcrunchie! Definitely looking forward to taking the next step and getting myself well again. Great to have found such a friendly and supportive group ☺️

[ceslater]

Late response, but I'm interested to know how long it finally took to receive your results. My initial NHS blood test took one week to come back with an anti-tTG more than 60 times higher than the strong positive of 10 (614). That should be enough for a diagnosis, given my dad has confirmed coeliac. I waited 4 months staying on a gluten diet before my gastroscopy. They tried to postpone it again but I said I wasn't waiting any longer. I finally had it done. I've gone on a gluten-free diet. It's been 11 weeks and I still haven't heard anything. 

In the meantime, my daughter had a blood test - her anti-tTG was 562 so very high. They suggested she wait for a gastroscopy. I really don't see the point - it feels insulting to ask that of a 17 year old, and a farce. My daughter has fainted whilst at school due to a vit D deficiency and she's anaemic. Therefore, waiting is a risk to her health - it's abundantly obvious she has coeliac disease. I told the gastrologist she's already started a gluten-free diet because it's too risky to wait so long for an inevitable result which has only one possible treatment. My friend died from bowel cancer because of celiac disease - asking a 17 year old to risk a perforated bowel no matter how low the risk for an outcome we already know, is completely unreasonable. 

 

[cristiana]

Hi @ceslater

I'm here in the UK.  I am so sorry you are having these issues.  

With regard to your results, we've been in a similar sort of situation but for a different condition, a few years ago.  My daughter had issues with a knee problem and we waited months and months for a follow-up appointment with an orthopedic surgeon.  We assumed it was issues with waiting lists due to COVID as other people in the area were also waiting like us.  Turns out somehow they had forgotten about us.  I've been told the NHS has a lot of IT issues, if you haven't I'd check that that hasn't happened to your gastroscopy report.

 

[Checks]

Ceslater am so sorry to hear about your situation and that of your daughter's. Yes I had blood done in Feb then biopsy May and didn't get results til September, ended up chasing through PALs patient liaison. My daughter is now diagnosed too, but purely on ttg blood test as her levels were really high .. keep pushing your hospital, it felt soul destroying but in the end I got there.... Best wishes to you both

[cristiana]

10 hours ago, Checks said:

Ceslater am so sorry to hear about your situation and that of your daughter's. Yes I had blood done in Feb then biopsy May and didn't get results til September, ended up chasing through PALs patient liaison. My daughter is now diagnosed too, but purely on ttg blood test as her levels were really high .. keep pushing your hospital, it felt soul destroying but in the end I got there.... Best wishes to you both

That's a very good idea to speak to PALs, I'd do that.  That's an incredible wait... four months.  I

[ceslater]

Thank you to both of you for replying. I'll check the results given been lost. Honestly, with an anti-tTG of 614.and a father who's confirmed, I know I have it so I wouldn't be going through another gastroscopy again. Hopefully they're just very very.... very slow! The time length of May to Sept sounds familiar! 

[Checks]

You poor thing Ceslater yes it's so frustrating. I had also been told to continue having gluten so was feeling very unwell. My poor family, I was very hard to live with! And yes Cristiana you're dead right about IT issues and hospitals. I think I fell down a crack as our hospital was transferring itself on to the (spectacularly mis-named) EPIC system. 

[ceslater]

Thanks for the messages of support. My GP has given me the number of the gastrologist to chase them up. I said I shouldn't have to chase this up - I expect them to do their job!

I then contacted the secretary for the gastrologist and of course got through to an answer phone. 

This ridiculous process is sending a message out that coeliac disease is not serious, and there's no rush to make any changes. That's dangerous. Anyway ... I'll keep waiting and phoning, I suppose!