UK Member Looking For Help - Recent Test

[LeeRoy83]

Hi Guy. Just after a little information understanding my recent bloods screening for Celiac. I’m based in the UK.

I have suffered on and off with what was thought to be IBS since my early 30’s. I’m 40 now. Usually morning cramps with an urgency to go with loose stool. I’d have flare ups like this for months then they’d stop. That was my norm. However recently after a stomach bug, the lower abdominal cramps, loose stool, more intestinal gas and crazy loud gurgling digestion sounds have ramped up. 
 

So I went to the GP who ran a full set of blood tests including the celiac screening. Everything came back perfect for the bloods apart from the celiac which shows - 

4.37 g/lIgA

Tissu transglutaminase IgA lev

can somebody help me understand the numbers? I can’t seem to define what normal ranges are.

It just says abnormal and arrange follow up with GP, which will likely be next week.

[cristiana]

Hi @LeeRoy83 and welcome to the Forum

I'm a coeliac based in the UK, it is always nice to meet another on the forum, although I'm sorry for your recent troubles.

It sounds as if they have not provided the normal lab ranges with your results.  Is there any chance you can double check with your GP's surgery, or alternatively, if the tests were done by the NHS, you should be able to find your readings and the normal lab ranges on the NHS app, although I have to say I find it quite hard to navigate myself.

I'm afraid without the ranges it is difficult to be absolutely sure what is going on.

Cristiana

Edited May 2 by cristiana

[LeeRoy83]

Hi Cristiana

Thanks for your reply. I managed to get on the NHS app and it shows - 0.80 to 2.80 in a green bar which I’m assuming is normal range. Mine then sits higher in orange at 4.37 g/l

27 minutes ago, cristiana said:

Hi @LeeRoy83 and welcome to the Forum

I'm a coeliac based in the UK, it is always nice to meet another on the forum, although I'm sorry for your recent troubles.

It sounds as if they have not provided the normal lab ranges with your results.  Is there any chance you can double check with your GP's surgery, or alternatively, if the tests were done by the NHS, you should be able to find your readings and the normal lab ranges on the NHS app, although I have to say I find it quite hard to navigate myself.

I'm afraid without the ranges it is difficult to be absolutely sure what is going on.

Cristiana

 

[cristiana]

Okay, that's useful.  Yes, it sounds like you are out of range, which is suggestive of coeliac disease.  Your next step must be to see your GP and see what they suggest but for the time being, keep on eating gluten as s/he may want to order an endoscopy which is the next stage in the diagnosis journey.   If you have any questions meanwhile, do come back to us.  

[trents]

Your physician will likely refer you for a GI consult for the purpose of an endoscopy with biopsy of the small bowel lining to check for the damage to the villi caused by celiac disease. As Christiana said, keep eating generous amounts of gluten until all testing is over or you will invalidate any future testing or procedures.

[LeeRoy83]

Thanks for the info guys.

I’ll follow up with my GP next week. So as it stands it’s looking like Celiac is likely? It’s come as a bit of a shock really, I know my symptoms have persisted a bit more over the past month or so compared to previous flares. I did have a bout of norovirus about 8 weeks ago and stomach never quite returned to it’s best since.

[trents]

There are some other things that can cause elevated blood antibody numbers on the celiac tests. Some other diseases, some medications (olmesartan, NSAIDs) and even some other intolerances to non-gluten foods, especially dairy. But the odds are, the elevated numbers are caused by celiac disease.

[RMJ]

2 hours ago, LeeRoy83 said:

Hi Cristiana

Thanks for your reply. I managed to get on the NHS app and it shows - 0.80 to 2.80 in a green bar which I’m assuming is normal range. Mine then sits higher in orange at 4.37 g/l

 

Based on the units (g/L) and the normal range having both upper and lower limits, I would think this result is total IgA, not the celiac-specific tissue transglutaminase IgA.  Is there another result for that?

[trents]

19 minutes ago, RMJ said:

Based on the units (g/L) and the normal range having both upper and lower limits, I would think this result is total IgA, not the celiac-specific tissue transglutaminase IgA.  Is there another result for that?

@LeeRoy83, what RMJ is referring to is the test for IGA deficiency, often called "total IGA". It is not a celiac diagnostic test per se. However, if this test score is low (i.e., you are IGA deficient), the celiac IGA test scores cannot be trusted as they will be artificially low which may include false negatives.

Possibly, RMJ is correct. But I'm looking at the list of terminologies employed for the various tests as laid out in this article: 

For the IGA deficiency test, here is the list:

Other Names for the IgA Levels/Deficiency Test:

Immunoglobulin A (IgA) Test

Total IgA Test

Serum IgA Test

IgA Serum Levels Test

IgA Blood Test

IgA Quantitative Test

IgA Antibody Test

IgA Immunodeficiency Test

None of those match very well with the test score you posted which is the "Tissu (Sic) transglutaminase IgA" which lends itself to the acronym, TTG-IGA.

[LeeRoy83]

Appreciate the info so far guys.

So underneath the score I posted before for IGA scoring elevated. It says this in a box below -

Tissu transglutaminase IgA lev: 

Reference range: 

No range

Laboratory comment: 

Negative

 

[RMJ]

Maybe your followup is for the elevated total IgA, and not for celiac. It is strange not to have a numerical result for the tissue transglutaminase.

I hope you get answers in the followup with your GP.

[trents]

Yes, a very cryptic and uninformative lab result report indeed! But it does seem like this is typical for the UK. It's almost like the "professionals" in that healthcare system don't want you to try and figure anything out for yourself.

Edited May 3 by trents

[cristiana]

@LeeRoy83   

Hello again. 

Picking up on something else you said re: the shock that you may be a coeliac.

It may has come as a shock to learn that coeliac disease is a possibility, but if that is the case, although it can be at times a bit of a nuisance not to be able to eat gluten anymore, it has been my experience that most of my friends and acquaintances who have it have adapted to it well, and are thriving.  Although statistically it affects 1 in a 100 people, I know more than that, strangely, so I can see first hand how the diet can make a big difference for most people.

In the UK we are blessed with a wonderful selection of gluten free food on sale in the shops, which seems to be ever-increasing, well labelled food packaging making it easier to determine if food contains gluten, a fabulous charity called Coeliac UK who provide a lot of very helpful information, including a gluten free food app and guide that you can take shopping with you, and good follow-up care provided by the NHS.  

But that's for another day - IF you have indeed got Coeliac Disease.   Do meet up with your GP, take a list of questions to ask, and then if he wants you to take the coeliac diagnosis a step forward do let us know if we can be of help  - we can walk with you every step of the way.

Cristiana

[Russ H]

There is not enough information to assess the likelihood of coeliac disease. You'll have to chase this up with the quack. The lab should provide antibody titres and a reference range. They might just have done an EMA test, which is negative/positive and antiquated - a proper IgA-ttG2 test would be more helpful.