Hi all. My GP recently tested for coeliac. I've tried researching my blood result in order to understand it for myself but I have to admit defeat! I'm in the UK and my result is:-
tTG IgA Antibody (serum) <0.5 (a) kU/L (0 - 14.9)
Does this mean that I don't have Coeliac disease? Although I don't understand what I'm talking about could I be IgA deficient? Does IgA deficiency mean a total lack of IgA or can a very low result also indicate deficiency? I'd really appreciate any advice or comments please!
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pj16
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Many tests - particularly those for larger molecules - can easily get confused by other molecules which is why there is a range that doesn't start at 0.
However, this also means that there is a small risk that a low level of antibodies might be missed - however the result you quote would indicate that the amounts weren't detectable, which, I presume would indicate that you don't have coeliac.
The caveat would be that you had to be on a diet that included gluten before the test. If you weren't then the test would be totally inconclusive.
Thanks Gambit62. Gluten doesn't form a large part of my usual diet but in the last four weeks or so I've been eating extra bread, cereals, pasta etc and my stomach issues have worsened. I'm seeing gastroenterologist soon and I'm desperate to hear what he thinks.
My understanding is that GP cannot be certain you do not have Coeliac disease until the Total IgA test is also done and GP looks at results of both tests together.
It is possible to get a Total IgA test done privately if GP will not do it.
If you contact Coeliac UK helpline 0333 332 2033, they might be able to tell you more about which tests a GP should do.
My understanding of UK guidelines is that if symptoms consistent with Coeliac disease continue after negative results then GP should consider a referral to a gastro-enterologist.
See section on what test result means in above link.
Were you eating plenty of gluten in your diet for several weeks before you were tested?
A person not eating any gluten or only eating a very small amount before tests may have a negative result in tTG IgA test even if they have Coeliac disease because their body has not been exposed to enough gluten to make lots of antibodies.
Did GP ask you how much gluten you were eating each day before ordering the test?
I should add that patients who have IgA deficiency need different tests for Coeliac disease.
See NICE guidelines, Coeliac UK Blood tests link and Lab Tests online link in post above for more details of Coeliac tests that can be used with patients who have IgA deficiency.
For those who want to know more about IgA deficiency, next links may be of interest.
Hi Sleepybunny. Thank you. GP did not mention Total IgA test. I didn't know much about coeliac testing when she suggested doing the one test that she did so didn't know to question it. She also didn't ask if gluten formed a part of my diet. Unfortunately I'm reaching the stage where things like this don't surprise me.
I've recently managed to work out (through foggy, extremely forgetful brain) that some of my symptoms over the years come in waves. I'll have a weird symptom out of the blue for a period of time, it will disappear then return maybe months later. For example, symptoms such as painful gums, aching teeth, sore breasts, floor of mouth sore etc. My sleep recently is dreadful and when I do manage to sleep for a bit I'm plagued by terrifying nightmares (and sometimes sleep paralysis). A new symptom is that I've started shouting in my sleep and having conversations out loud. I'm beginning to wonder if I'm actually going mad.
I desperately want to start a treatment plan based on the mountain of advice and help I've had from these forums. My plan is supplementing vitamins one at a time AND going gluten free but I'm stubbornly (and out of intense curiosity) holding off to see if I can get a confirmed diagnosis - of anything! I have two adult daughters who have undiagnosed symptoms and I want to try to help them early so they don't end up where I am when in their fifties.
I'm seeing a gastroenterologist soon so we'll see.
"Unfortunately I'm reaching the stage where things like this don't surprise me. "
I got to that point and finally resorted to self treatment when I exhausted all possibilities of NHS B12 treatment.
Perhaps you could go back to GP and ask her face to face or in a letter to do the Total IgA test, pointing out that it's recommended in NICE guidelines?
I sometimes found that offering to pay for a blood test meant GP agreed to do it. Some GP surgeries will agree to take a blood sample for private blood tests but will charge for this. Some private blood tests are available as finger prick tests.
To have a Total IgA test privately would cost over £100 plus extra if a private GP appointment is required.
I'm glad to read that you have a gastro appointment. If they do an endoscopy, they might be able to spot signs of gut damage from PA, Coeliac , H Pylori infection etc.
Is your GP aware that your adult children have symptoms? GP should in my opinion ask questions about family health history.
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Any connection with B12 deficiency and Bladder issues?
Diagnosed with B-12 deficiency. Levels normal but still experiencing symptoms. Sound familiar? 
Could B12 deficiency/PA or thyroid?
