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Coeliac testing

Jay23 profile image
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Could someone please tell me if the coeliac testing is just either positive or negative or if there are ranges that the results should fall in to. I had this done and phoned for the results and was told they are normal but am seeing the doctor next week so want to be prepared. Many thanks.

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Jay23
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8 Replies

hi Jay - they are very much in ranges. I only showed as borderline positive (under 7 was normal, 8-10 borderline coeliac, over 10 positive - but be aware your doc may use different references values I think it depends on what labs they use). I had two test which were "normal" before the borderline one.

I only scored an 8 when borderline but according to my biopsy am definitely coeliac with what looks like decades worth of damage (which fits in with my symptoms). Someone on here will probably understand it all better than me, but I'm pretty sure it's possible to show a normal blood test (or as in my case nearly normal) while still definitely coeliac - it's to do with whether or not you naturally produce a certain chemical (?), if you don't produce it (IgA I think it's called) then the standard coeliac test won't be accurate for you. I'm assuming that's the case for me (but won't know for sure until i see a consultant later in the year). I think i read somewhere that approx 1% of coeliacs are IgA deficient so while unlikely it's worth bearing in mind. Your doc should have asked for the IgA test to be done too to be on the safe side.

Sorry not a straightforward answer - and good luck.

Tillyxx

Edited to add: This is a bit clearer than my above ramblings:

coeliac.org.uk/coeliac-dise...

Jay23 profile image
Jay23 in reply to

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Dawn31019 profile image
Dawn31019

Hi Jay

The only positive way I think to be certain is a camera down and biopsy. You can get a negative result and be positive . My TTG was 2040 yes very very high I've been told below 10 would be normal for me. I had the camera down and biopsy this showed total Atropy, complete flat villi like Tilly years of damage. I would insist on the camera down to negate or confirm . Look at the difference between Tilly and I . TTG results are not a confirmed diagnosis . Also you may be gluten intolerant which is different to coeliac . Also depends on the severity of your symptoms ? Some people have silent coeliac mine is very symptomatic . Hope this helps

Jay23 profile image
Jay23

Thanks Dawn31019 , I have an underactive thyroid (Hashimoto's) and think I have that sorted with levo dose now and taking lots of vitamins as some of those were low but still wouldn't say I am quite 100% (an awful lot better than I was but not quite there yet). Have read a lot that people with Hashimoto's should avoid gluten and my Dad also has Dermititis Herpetiformis so doctor agreed to do the coeliac test. As I said, I phoned for the results and was told they were normal but will see the doctor next week so will ask where in the range of "normal" I was.

in reply to Jay23

I have Hashimotos too Jay. I believe there's an increased risk of coeliac with hashimotos (or maybe it's the other way around and coeliac increases the risk of Hashimotos... - but the two do seem to often go hand in hand). It's great that your doc was happy to test for coeliac, but as Dawn says the only thing that really confirms either way is a biopsy. Good luck with your appointment.

Amayteach profile image
Amayteach

Hi are you referring to the blood test or the biopsy? I had positive for both?

Jay23 profile image
Jay23 in reply to Amayteach

It was the blood test. Got the results yesterday and it was negative. I asked for ranges and wad ld over 20 would be positive and I was only 1.9.

Amayteach profile image
Amayteach in reply to Jay23

They never went into details with mine - just said something about white blood cells being present in the coeliac blood test and in the biopsies they found the same which suggested and confirmed my diagnosis. Would be interested to find out my numbers.

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