Confused about NHS results

[Bonjourtristesse]

I was supposedly given a Celiac test by the NHS in 2018.

The test shows up as 'Tissu TransglutaminaseIGA lev: ' on my patient records.

There are no other numerical results.

I don't know if this means that the test was performed but was considered normal or the test was not performed (if not why note it?)

I have had a DNA test which I paid for myself hoping not to have the genes and close the situation, but I do in fact have the relevant gene for celiac.

I have low b12 and iron, no other 'classic celiac' symptoms.

I think I remember asking the doctors and being told that this meant the test was normal but I see other people talking about their numbers.

Any help would be appreciated.

[Hidden]

If by test you mean the blood test - many get false negatives. It's treated as a 'gold standard' for celiac/coeliac testing but is not. It's a poor testing route to halt at if negative as many get negative blood test but positive biopsy. I'd encourage you to get the blood test again, if you still have gluten in your diet, and also also explore options of biopsy if you have celiac/coeliac symptoms. Do not give up gluten before test as that will skew results.

As to the actual numbers - my own testing results on my GP records (from circa 2005) just say 'no' for celiac/coeliac, and no one recorded the actual numbers which is annoying. You can be in the ballpark of coeliac/celiac with a weak measurement apparently, but a lot of doctors don't know how to read those results. It's pretty poor that it appears on your notes, but no results given, even just a narrative 'yes' or 'no'.

Almost half the population have the coeliac/celiac gene, but only around 2-3% will progress to develop the condition, so it's a poor option for diagnosis, but can help narrow things down. It's impossible beyond odds of 1 in a million coeliac/celiacs to have the the condition without the relevant gene.

Low iron and B12 are classic impacts of coeliac/celiac. Not everyone has digestive symptoms, and there is a full range of symptoms included nerve pain, ataxia, joint pain, mood, etc.

I'd personally say get the blood test again if you can, and ask for the specific results.

[Bonjourtristesse in reply to Hidden]

Thanks that's helpful. I was still eating gluten but have recently given it up in an attempt to increase my iron and improve joint pain and gum health. My GP's have been generally unhelpful; suggesting I take iron tablets which I could not as my digestion was so poor. Not eating gluten does seem to have improved my digestion to the extent that I am able to tolerate iron although I'm not sure if that's just a coincidence.

I have read some studies that say that giving up gluten can be helpful for people who have very low iron and there's some suggestion that even if it's not celiac it could be some kind of gluten intolerance.

I think I'm going to check my ferritin now and in 6 months and see if there's an improvement. An increase in energy would be worth giving up gluten for - although not as bad as I was, I still take naps and struggle with my energy levels.

[Hidden in reply to Bonjourtristesse]

It's a shame you have been given the runaround by doctors, and unfortunately too many experience this. The medical awareness of coeliac is so poor it's criminal as too many are shunted around from pillar to post in the worst of health, and negated and abuse along the way. I would push to get the coeliac testing and endoscopy. You should not be suffering and left floundering without answers. I was failed at the testing and took a few years to get to grips that it was gluten, and everytime I ender the health system I am still challenged by the lack of knowledge on coeliac and the fact it is not properly on my medical records.

[Researchfan]

Hi. Agree, if you’re not strictly following a gluten free diet maybe try and get screened for coeliac blood test again?Justifiably it’s 4 years since you were tested and coeliac disease can start at any age given the right trigger and environment that can set it off. You know you have the genes so there’s the potential but it really doesn’t mean you’ll get it or have it. So my opinion would be to monitor it and test again if in doubt. I’m not a dr but know people on here tested normal and then a few years after tested positive.

The low iron and b12 should be investigated regardless of a negative coeliac test. There’s many things can cause. Return to your dr to get to the bottom of it as it does sound like an absorption issue?

Personally my coeliac screen blood test ttgA was reported as normal range and number was 1.5 so not 0, range 0 to 7 if I recall correctly.

Interestingly my total IgA which they test for to check not deficient as a lot of coeliacs can be, was abnormal high above range. So inflammation going on apparently but unlikely coeliac disease. Allergy dx and IBS for me. Low iron and folate too.

Best wishes.

[Bonjourtristesse in reply to Researchfan]

Thanks for your thoughts. I find it very hard to get my doctor to do much. I think they think I'm a bit of a hyochondriac (which I am but I'm not magical enough to be able to fake my own blood tests.)