IF and celiac test results 'normal' - Pernicious Anaemi...

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IF and celiac test results 'normal'

Bonjourtristesse profile image

Hi all, if you had tests on the NHS for Intrinsic factor did you get details of test or just told normal?

I have two tests in my online records which just show up as n/a which I assumed meant they weren't taken at all. When I called the doctors they said that the intrinsic factor one was 'normal'. I thought that it was positive/negative.

The other one is a celiac test which I was also just told was 'normal'. I gather celiac can cause neuropathy which is why I was interested. I was also under the impression there was more than one test for celiac.

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Bonjourtristesse
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27 Replies
Sleepybunny profile image
Sleepybunny

Hi,

Coeliac Disease

In UK, two first line tests are recommended.

1) tTG IgA checks for a particular antibody to gluten.

2) Total IgA checks which patients have IgA deficiency.

My experience is that Total IgA test is not always done but I think it's an important test as people with IgA deficiency will need different tests for Coeliac disease.

People with coeliac disease may get a normal/negative result in TTG IgA test if .....

1) They have IgA deficiency as their body will not make the antibodies that TTG IgA test looks for.

There are other tests for coeliac disease if a patient has IgA deficiency. See NICE and Coeliac UK links below.

2) They were not eating enough gluten in the weeks before blood taken so there were not enough antibodies to gluten to register a positive result in TTG IgA test.

Links below suggest patients in UK should eat plenty of gluten in more than one meal per day for several weeks before blood taken.

If a patient has stopped eating gluten a while ago and does not want to start eating it again then guidelines below suggest referral to a gastro enterologist.

NICE guidelines Coeliac Disease

nice.org.uk/guidance/ng20/c...

Coeliac Blood Tests

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

"The other one is a celiac test which I was also just told was 'normal'."

From personal experience, I learnt to always check my own results after being told everything was normal and then finding abnormal and borderline results when I got copies.

Accessing Health Records (England)

nhs.uk/using-the-nhs/about-...

england.nhs.uk/contact-us/h...

patients-association.org.uk...

BMA article about access to health records ( 16 pages in PDF)

bma.org.uk/media/1868/bma-a...

I am not medically trained.

Bonjourtristesse profile image
Bonjourtristesse in reply to Sleepybunny

Thanks for this. Only the first one was requested but since I have no numerical results I don’t know if it was ever vitally done.

wedgewood profile image
wedgewood

I’ve learned that one cannot rely on the comment that doctors make on the blood tests . When I was so unwell, with what I now know was P.A. I had a test for B12 serum . I was told ‘all normal -no action required’ . I didn’t know then that one could ask for a copy of results . …. I have now down loaded that test from the NHS app , and can see that I was well below the given limits . Also have the comment ,saying that all was normal . It’s disgraceful really . I also thought that the Intrinsic Factor result was either negative or positive . Ask for a copy of the results and show us . There’s always someone on this forum who is well-informed on these matters .

Nackapan profile image
Nackapan in reply to wedgewood

Yes I thought IFA was positive or negative A few have posted numbers on results given?

I wasn't even contacted on a b12 result 100 below bottom of the range??

I had to chase results snd treatment. More delays!!

Bonjourtristesse profile image
Bonjourtristesse in reply to wedgewood

Thanks for replying Wedgwood. My b12 also dropped over a period of time as my symptoms worsened to just above the bottom of the range. It was only recently that I learnt to ask them for the figures unfortunately.

Nackapan profile image
Nackapan

I would get a copy of your results. J wasc told ferritin normal bur it wasn't for me!

Since thrn the guidelines have indeed changed .

Bonjourtristesse profile image
Bonjourtristesse in reply to Nackapan

I have been told there are no details so I’m not sure why to make of that. There don’t seem to be any numbers attached like the other tests.

Nackapan profile image
Nackapan in reply to Bonjourtristesse

Thats odd.

Bonjourtristesse profile image
Bonjourtristesse in reply to Nackapan

Yes, I thought so too. They didn't seem very interested unfortunately.

Sleepybunny profile image
Sleepybunny

A bit more info about tests for PA

PAS (Pernicious Anaemia Society)

Based in Wales, UK.

pernicious-anaemia-society....

There is a helpline number that PAS members can ring.

PA tests

Intrinsic Factor Antibody (IFA) test

labtestsonline.org/tests/in...

Parietal Cell Antibody (PCA) test

labtestsonline.org/tests/pa...

PCA is not recommended as a diagnostic test for PA in UK.

It is still possible to have PA with a negative result in IFA or PCA test.

About 50% of people with PA test negative on IFA test.

About 10% of people with PA test negative on PCA test.

nellie237 profile image
nellie237

I think N/A on blood tests usually means negative. I've had a few in the past. If you're looking on patient access see if there is a comments thing to click on. If there is, that might tell you whether negative or unusable sample.

Bonjourtristesse profile image
Bonjourtristesse in reply to nellie237

Ah ok. There doesn't seem to be anything else to click on. Can you tell I don't have much trust in them?!

Hedgeree profile image
Hedgeree

Hi Bonjourtristesse,

I had a similar situation with my IF result; that also came back N/A.

I too was confused that there were no figures, positive or negative results reported; originally I thought it meant 'not applicable'.

But once I'd posted about it on the forum I found that it just means normal/no action. That was also confirmed when I eventually got to speak with my gp.

Best wishes.

Bonjourtristesse profile image
Bonjourtristesse in reply to Hedgeree

Ah thank you, that's helpful. I read a post in an American forum about celiac results giving figures so I was confused as to why I hadn't seen any figures. I would still rather have them but not sure if eating gluten will cause me problems for retesting.

Hedgeree profile image
Hedgeree in reply to Bonjourtristesse

To prepare for the test I ate gluten at almost every meal for around 4 months or maybe longer, can't remember exactly. It made me feel fatter and bloated, horrible.

So when my coeliac test came back N/A I felt almost cheated and really annoyed. But it was a relief to cut down on gluten containing foods afterwards.

After reading other posts (mostly on the thyroid forum) it seems that you don't have to be coeliac to have an intolerance to gluten.

I'm still eating gluten containing foods but in smaller amounts and so am dithering over stopping or not and just tolerating the occasional bloated day.

Best wishes.

Bonjourtristesse profile image
Bonjourtristesse in reply to Hedgeree

That’s a long time. I think I only did 6 weeks. I also remember feeling horribly bloated - I’m not very good with bread but wondered if that could be carbs rather than wheat. I am just waiting for the results of a genetic test to see if I have the genes that can cause you to develop coeliac. Although I gather that 30% of people have them anyway without necessarily being coeliac. I have cut out gluten for a bit more than a month. I didn’t think I felt any different but when I ate some gluten the other day it seems like my pins and needles got worse so now I’m not sure.

Like you I just wanted to know how seriously I need to cut out gluten.

FlipperTD profile image
FlipperTD in reply to Hedgeree

Scientist, not medic.

Under the circumstances it might have been better to make sure what it meant, from the laboratory reporting the result. I accept that this isn't always straightforward, and the professional ethics involved might preclude the person 'giving advice' but that's not the same as telling someone what the code means. Whilst I don't know the exact circumstances in this case it 's likely that the GP didn't know either! [Sorry, doctor, but 'I've been there and done that one'.] Your initial assumption of 'Not applicable' is a sound one.

Hedgeree profile image
Hedgeree in reply to FlipperTD

Thanks FlipperTD,

If I do another test I'll make sure to find out properly from the lab if possible; though not sure how to do that with a result from the gp?

It seems mad to tell a patient a result is normal when there was possibly no result!

You always hope that you'll get accurate results from the gp but it's almost that it gets overlooked and inturn reported back incorrectly.

Thankyou.

Bonjourtristesse profile image
Bonjourtristesse in reply to Hedgeree

I am fast losing faith. I feel like I get the minimum care to get me to go away and leave them alone with no interest in what the real problem is. I will wait for the results of the gene test which are due next week and then have a rethink.

Hedgeree profile image
Hedgeree in reply to Bonjourtristesse

I'm the same. I'm treated like a hypochondriaic (spelling?) and feel like a massive inconvenience for the gp; I get really nervous now trying to deal with them.

That sounds like a good plan; have a look at your gene test results and then decide.

Good luck.

FlipperTD profile image
FlipperTD in reply to Hedgeree

Hi Hedgeree. No-one suggested it would be easy!

However, I'd start with the assumption that your lab test goes to a local large hospital. Nowadays it's almost certain that the hospital will have a reasonably organised website, and will probably have a page for their pathology department. It might even have contact numbers and names of people to speak to. These are typically aimed at 'users' as in Clinical users, but if a patient isn't a user, then who is? What's the worst that could happen? Ring up and ask politely, and I think you'll be surprised. Some labs would even invite you in to look round, or they may even have open days.

At this stage I certainly wouldn't suggest that you consider any 'third party' suppliers who will provide a result for a fee. You've already paid for this!

It's actually very rewarding to get interest from patients. It's what I considered that I went to work to do.

Good luck.

Hedgeree profile image
Hedgeree in reply to FlipperTD

Thanks FlipperTD,

With you explaining things from a scientists' perspective, I think I'll find out and contact the lab regarding my N/A results.

Best wishes.

FlipperTD profile image
FlipperTD

Scientist, not medic. My usual rambling response.

N/A does not mean 'Negative', and never has meant that. It means purely and simply 'Not Applicable', 'Not Available' or 'Not Assayed', which all amount to the same thing. No result.

It's shorthand [typically] for 'You've asked for the wrong test under these circumstances', for example, the requester asks for B12 and IFAb. The lab tests the sample, finds the Serum B12, say, 500, so does not perform the IFAb test on the assumption [rightly or wrongly] that it will be negative. I appreciate that this will irritate some members of this panel, but that's the way things tend to be. In my laboratory it wasn't necessary to request an IFAb with a B12, because if the B12 was low, the IFAb was tested automatically. [Known as reflex testing.]

When 'unusual' requests were made, it was deemed sensible to contact the laboratory in advance and make an arrangement [for the attention of...] so that the actual test would be performed regardless of the B12 level. [That's what I did in my laboratory anyway.] Much depends on whether the IFAb test is done in the lab where the sample goes; often, IFAb tests are 'sent away' to an external laboratory, because it's a 'small numbers' test that isn't performed everywhere. Some methods require the test to be batched for cost and the method, and so it's quicker to get a result by sending the sample off to another NHS lab with a track record. My laboratory did the test every day, whereas some labs using a different method would have to wait until they had enough samples to 'fill the plate' and that could take months.

Bonjourtristesse profile image
Bonjourtristesse in reply to FlipperTD

Oh dear, you’ve confirmed my worst fears! I can understand someone taking it upon themselves not to test my intrinsic factor (there were multiple test requested) but the coeliac one was the only test requested and I had struggled feeling awful eating so much bread for 6 weeks. Is it really possible that it was just not tested?!

Hedgeree profile image
Hedgeree in reply to Bonjourtristesse

I'm the same Bonjourtristesse, annoyed that we don't get told our results properly!

I always use patient access but it was the gp that told me later that it was normal!?

Really annoying!

Bonjourtristesse profile image
Bonjourtristesse in reply to Hedgeree

I have only just started using it as before I just blindly trusted them. Do you also have an n/a result?

Hedgeree profile image
Hedgeree in reply to Bonjourtristesse

Yes it was on patient access as N/A but it was the gp later that told me it was normal?

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