Asymptomatic coeliac

[NannaNoodleman]

We had an appointment with my DD's paediatrician yesterday and she asked about family history of coeliac disease.

When I was a teenager I had quite severe anaemia and pernicious anaemia. I had an endoscope and stomach (I think) biopsy and was diagnosed with coeliac disease.

I always thought it was an incorrect diagnosis and I'm maybe just a bit intolerant as I can eat gluten but have a threshold.

My DD's paediatrician said it's likely I am coeliac and am asymptomatic to a certain threshold. She said it's worth getting retested to be certain. Which I will.

Has anyone heard of this or experienced it?

[multivac]

Yes, it's reasonably common. Please do get yourself retested; you may feel that you can 'tolerate' gluten to a certain extent - but if you have coeliac disease, then you will be causing damage to your gut every time you eat it, and increasing your risk of osteoporosis and bowel cancer in later life... invisible symptoms are the worrying ones xx

[NannaNoodleman]

Yeah that's what I was reading last night and it made me quite worried.

[TalbotAMan]

I was only diagnosed at 60, and that was only because I had been coeliac for so long that I had nerve damage, and a neurologist was looking for possible causes.

I had eaten gluten all my life, and although I had bowel issues these were diagnosed as IBS and (rightly or wrongly) no-one suspected coeliac (even though it transpires that I have tooth defects that mean I was actively coeliac around the ages of 2 to 4 when my adult teeth were forming).

You probably do have symptoms. They may be mild rather than 'eat gluten -> vomit' ones, but the danger with mild symptoms is that either they get misdiagnosed as IBS or people just class them as 'normal for me'.

[sar302]

Definitely a thing, and quite dangerous, because when you don't get the immediate feedback, it feels like something to worry about "in the future". A bit like smoking and lung cancer.

If you've been diagnosed with coeliac disease, it's very, very unlikely you don't have it.

You can get tested again, but bear in mind if you're eating very minimal gluten, you risk getting a negative test.

[JeanMichelBisquiat]

Definitely possible - I'd echo the comments above about the risk of damage regardless of symptoms, and also the risk that you'll get a false negative on re-test if you're not eating lots of gluten. Biopsy is the gold standard - if you've had a diagnosis from that in the past, there's not really any need to re-test; just come off the gluten entirely!

[Frankley]

I had no symptoms either, but then got anaemic when older. Always felt well. My sister had already been diagnosed and my son was later. He immediately felt better after gluten free diet, but hadn't realised he didn't feel 100 per cent before. Now there is a blood test it's easier to be diagnosed, but it does sound that your previous test was positive.

[NannaNoodleman]

Thank you for your replies.

I thought coeliacs had quite severe symptoms and as I wasn't having severe symptoms I was a bit intolerant! Bugger! I hope I haven't done too much damage to my insides over the years.

I wonder if my current GP can pull up my notes from 20 years ago (and about 10 practices ago) to see what was reported on the biopsy.

This is quite unexpected - especially as I was there to discuss my DD's health!

[multivac]

On the positive side, OP, any damage done will almost certainly be reversible through a combination of a gluten-free diet and time (and possibly a look at your calcium intake for a while, too!) x

[NannaNoodleman]

Oh brilliant, the damage can be reversed! Phew!

[BCBG]

Hi I've recently been diagnosed with coeliac disease which has done extensive gut damage but I was completely asymptomatic even though I've obviously had it for many years! The only reason it was found was that I had a blood test as a result of a very itchy scalp that I thought was because I'm menopausal. You should go gf