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Can anyone here help me with my coeliac biopsy?

9 replies

ShartOfGold · 21/03/2019 18:22

I did post this in general health but didn’t get any replies so sorry for duplicating.

Bloods taken in October, came back as ‘strongly indicating’ coeliac disease.
Finally had my gastroscopy yesterday. Once it was done the nurse told me the doctor had said it looked unlikely I have coeliac.

My discharge notes say the following...

Atrophic duodenum: Mild
Specimens: 5x biopsy

Diagnosis-
Oesophagus. Normal
Stomach. Normal

Advice/comments
Mild duodenal atrophy+ Bx taken. Rest NAD.

Awaiting pathology results. Review in GI clinic.

Can anyone decipher this for me?
I know I need to wait for the biopsy results for a definitive diagnosis but as the doctor says it looks unlikely I’m supposing I don’t have it.
What could have caused my bloods to indicate I do?

OP posts:
pastabest · 21/03/2019 18:28

You just have to wait for the biopsy to come back I'm afraid,

The exact same thing happened to a family member, bloods said coeliac, gastroscopy said actually no, biopsy said yes coeliac.

A gluten free diet has resolved the symptoms so we are pretty happy with that diagnosis.

ShartOfGold · 21/03/2019 18:30

Thank you @pastabest
I’d rather it not be coeliac but at the same time, I’d like to get an answer as to why I’ve been experiencing these symptoms for so long (plus I hope I didn’t put myself through that gastroscopy for nothing! Grin )

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TalbotAMan · 21/03/2019 18:58

When I had my biopsy the endoscopist (a nurse specialist) said he hadn't seen anything but that didn't mean much; there were some things that could sometimes be seen as an indicator of coeliac but it was the biopsy that mattered. And when I got the biopsy results (which took nearly 8 weeks but that's another story) they diagnosed me as coeliac.

ShartOfGold · 21/03/2019 19:18

Thanks @TalbotAMan let’s hope I don’t have quite a long a wait as you did!

I can’t find much info on what else could cause a positive blood test so I guess I’ll just have to find some patience.
The nurse seemed so insistent it wasn’t coeliac though...

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Veterinari · 21/03/2019 19:21

You need to wait. The histopath will likely show changes that aren’t obvious grossly. You can’t diagnose coeliac by gastroscopy- it’s simply a mechanism to get the required biopsies

lunabody · 21/03/2019 19:34

Were you eating gluten-y things in the few weeks leading up to the gastroscopy? If so, then yeah, waiting for biopsy it is...

ShartOfGold · 21/03/2019 20:14

Thanks both. I know I need to wait... can you tell I’m not very good at that? Grin

I didn’t change my diet at all whilst waiting for the biopsy. In fact, I’ve been having one last hurrah with lots of gluten containing foods just in case I can never eat them again Wink

I know the biopsy is the key, but I overheard another patient being told they were ‘full blown coeliac’ after they had theirs so that’s why I’m questioning it.
They were taking very loud btw, I wasn’t eavesdropping, honest!

OP posts:
pastabest · 21/03/2019 20:24

At least with coeliac disease it can mainly be controlled with diet to be reasonably symptom free. Of all the autoimmune conditions out there it's one of the better ones.

The gluten free bread is shit but nearly everything else is ok.

ShartOfGold · 21/03/2019 20:32

Oh I absolutely agree @pastabest
That’s why I was half hoping the doctor would tell me there and then that it’s gluten causing my problems... rather than it be something more serious.
I guess I’m just worrying now that it could be something other than coeliac.
But I know I’m getting ahead of myself. I just need to wait for those biopsy results.

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