Waiting for results

[Di Wallace]

I live in the UK. A Blood test showed TTG 29, positive is 10. I was sent for a biopsy on 11th April. It is now 9 weeks on and have still to receive a result I have rung the Secretary numerous times and keep getting told that the consultant has them. At our previous appointment the consultant said he thought it was very likely I had Coeliac. I just want to know what to do. Am I meant to stop eating gluten. No one has said anything. Have tried GP for help, but they have just said I have to wait. Has anyone else had this frustrating problem?

[Scott Adams]

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.  If you doctor said you likely have celiac disease, and you've already done a blood panel and endoscopy, it might make sense for you to start a gluten-free diet to see if you symptoms go away. You may want to let your doctor know that you are doing this just in case, as there could be a small change that they may want to do more testing.

 

 

[ajt2106]

Hi Di,

Your experience with the NHS seems to be similar to my own. 

I was called up by my GP following blood tests to tell me I had significantly raised antibodies suggesting coeliac disease. I was told at that point that the waiting list for a gastroscopy was in excess of 2 years so I needed to stop eating gluten immediately. The GP told me she had discussed my blood results with the gastro consultant at the hospital and everyone was in agreement that coeliac is highly likely. 

I went gluten free as instructed and I immediately felt better in myself and noticed all my bloating had gone down, I was going to the toilet less, I was feeling more energetic. It was great after feeling terrible for years! I then got a call several weeks later saying my gastroscopy/biopsy was being outsourced privately and I was to go back to eating gluten for at least 6 weeks before my procedure. Fine. I got my date which was around 8 weeks from that point so it worked out pretty well. 

Fast forward 8 weeks, I have my biopsy and whatnot which picks up that I have gastritis and I should be given a course of PPI medication to reduce the inflammation followed by a review in clinic. I was also told my biopsy results would be ready within 6-8 weeks and to contact the GI dept. if I hadn't heard anything after that period.

I left with a copy of my endoscopy report but no prescription for any medication and no advice given whether I should go back to being gluten free. I'm not familiar with how the NHS works so I assumed I'd get a call from my GP or something to talk me through the next steps. I heard nothing from anyone. 

I was feeling terrible at this point so I decided myself that I was going back to gluten free which again, helped me massively.

I waited for 8 weeks as instructed and I hadn't heard anything about my biopsy results. I hadn't had any prescription for the meds I was supposed to be taking etc. I contacted the consultant's secretary who told me my results were back  but they couldn't be discussed over the phone and that I would have to wait until I was written to. I had chase up the GP (who had received a copy of my report stating I needed medication) asking where my prescription was which I finally got 2 months after I was meant to have it.

Anyway, we're 6 months on from that and I finally had my biopsy results back literally one day ago. They have turned out to be fairly inconclusive anyway.

I received two letters - one which states that I have stomach inflammation but nothing that is a cause for concern and it's to be managed by GP. The letter then goes on with a 'PS' stating that after reviewing my case 'more fully', they realised that I had positive anti-TTG antibodies well within the range that they would expect the biopsy to show coeliac. 

The second letter follows on saying that my biopsy results have been discussed in meetings and that there ARE changes which indicate coeliac. I have to repeat the blood tests again and go back to eating gluten for another 6 week period. The wording they have used is that it's to give them clear idea of whether I have coeliac or not followed by the sentence 'Unfortunately, it is likely you have got coeliac disease.'

So yeah, I'm also super confused as to what is going on. Poor communication and plenty of confusion to go with it. 

I'd say that if you've had your blood tests and gastroscopy, cut out the gluten to see if it makes you feel better. If they aren't prepared to tell you then take matters into your own hands. If they require further testing, then they'll just have to wait whilst you reintroduce gluten back into your diet. Going off what my letter says, they've assumed I was gluten-free anyway because it instructs me to reintroduce it to my diet. Just be prepared for it to take months instead of weeks before you get your biopsy results.

Good luck!

Andy

 

[Di Wallace]

Thanks for your reply. Sounds like you've had an awful experience. Hope you get sorted eventually. Actually, I finally received my results yesterday, 11 weeks and 3 days after the procedure, which did confirm Coeliac. Honestly though, the Consultant only works at the hospital 1 day a week, the rest is private work. Is it any wonder that we are left climbing the walls. Anyway, thanks for your helpful reply. All the best 

[GardeningForHealth]

Wow. That wasn't handled well by the doctors. I am not sure why there is such uncertainty and confusion around the endoscopy. Doctors and researchers make such a big deal about getting the endoscopy to confirm the diagnosis, but there seems to be so much uncertainty and gray around the endoscopy.

Years ago, my sister had a very very high celiac blood panel which revealed a TTG of like 140, and she did get an endoscopy done, but there was confusion around that. The report that came from that did not clearly state the result, and her subsequent doctors were confused what to make of this report.

It really puts me off to the idea of getting one done. I would expect a concrete report from such a procedure which eliminates any uncertainties.

The endoscopy is supposed to reveal a result of how damaged your villi is, and rank the level of damage by Marsh 0, Marsh 1, Marsh 2, or Marsh 3. Why isn't this discussed on the reports?