Pernicious Anaemia Society

Finally got back the iga part of the blood test

Only just got back the result of the IGA test that was taken with the rest of my blood test on 18th August don’t know why it took so long, this is what it says

ResultNormal

No Further Action

Pathology Investigations

Coeliac disease screen

Tissue transglutaminase IgA level NEGATIVE

IgA anti-TTG antibodies are negative. Does not support a diagnosis o

f

coeliac disease, however, if the clinical suspicion is very high

suggest small bowel biopsy. Serology will become negative once the

patient is on a gluten free diet and false negatives occur in IgA

deficiency .

ENSURE GLUTEN DIET X6WK Not known

When I saw the doctor last week about my the first part of the blood test telling him I still feel really tired and ache and all the other symptoms still he suggested that one of my current meds’ might be causing me drowsiness and to change from 2 tablets to 1 tablet a night for 1-2 weeks and see if that helps or I might need to try increasing my exercise , but how is that going to help :( ,

3 Replies
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Hi,

I mentioned on your previous thread that saying someone is not coeliac after testing Tissue transglutaminase IgA following a gluten free diet may not be reliable.

1) A person on a gluten free diet will not produce IgA anti-TTG antibodies.

Coeliac UK recommend eating gluten in several meals a day for several weeks before a Coeliac test in order for it to be reliable. Were you gluten free up to the point of the Tissue transglutaminase IgA test?

2) A person with IgA deficiency will not produce IgA anti-TTG antibodies.

A test for IgA deficiency is a separate test to the Tissue transglutaminase IgA test.

Have you had an IgA test?

labtestsonline.org.uk/under...

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

isitcoeliacdisease.org.uk/o...

"Serology will become negative once the patient is on a gluten free diet and false negatives occur in IgA deficiency ."

I can see from your post above that along with your test results, the notes say that serology (meaning blood results) become negative once on a gluten free diet and falsely negative results can occur if a person is IgA deficient.

"ENSURE GLUTEN DIET X6WK Not known"

The notes with your results also say that the patient should be on a diet containing gluten for 6 weeks ( X6WK) prior to test.

I am confused by the lab writing "not known" meaning they don't know if you were eating gluten because I assume GP would have told them that you were on a gluten free diet on the request form for the test.

This is a forum for PA/B12 deficiency and I am not medically trained. It might be helpful to see if there is a Coeliac forum on HU who could answer questions in more detail.

There is a HU forum called Gluten Free Guerillas.

If you're in UK, there is a helpline tel no for Coeliac UK 0333 332 2033

Their support line might be able to answer questions you have about Coeliac disease and the reliability of Coeliac tests if not eating gluten.

If a patient's Coeliac test results are not reliable then there is still a possibility they may have Coeliac disease even with negative results.

Do you have another appt with GP soon?

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I know the doctor definitely told me to go gluten-free but said I definitely don’t have coeliac but to use the coeliac website he sent me to know what foods I had to void wheat etc, don’t know why he did that to be honest as I doubt that would detect absorption problems the problems I’m having is with my b12 etc which he didn’t bother to retest and said my vitamin D is ok at 58 , I’ve checked on my gp surgery and apparently my doctor who’s been dealing with this doesn’t seem to be in for the next 2 weeks only showing appointments for all the other doctors which would mean having to tell them right from the beginning which be like talking to a brick wall at times :(

Reply

I'd suggest talking to Coeliac UK if you're in UK to clarify what tests should be done.

"doctor definitely told me to go gluten-free but said I definitely don’t have coeliac "

Coeliac disease can lead to absorption problems of some nutrients eg B12 because it can affect the gut.

I sadly learnt that doctors can sometimes lack understanding of some health problems and that it's useful to do own research.

I don't know why your GP is so adamant that you do not have Coeliac disease if ........

1) Total IgA test has not been done (as well as Tissue transglutaminase IgA test)

Ordering a total IgA test to check for IgA deficiency is recommended in NICE guidelines on Coeliac Disease.

NICE Guidelines Coeliac Disease

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

2) If he had you on a gluten free diet before the TTIgA test

Section 1.1.3 of NICE guidelines above explains that Coeliac tests are only accurate if a gluten containing diet is eaten during the diagnostic process

If you're UK based, has your GP seen NICE guidelines above?

Section 1.1.5 says that people who have restricted their gluten intake before Coelaic tests shoudl be referred to a gastrointestinal specialist.

In past I have given GPs copies of medical articles/documents that I thought might be of interest to them.

3) If you're still symptomatic for Coeliac disease and a gut biopsy has not been done.

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