What tests to ask for at GP appointment tomorrow

[Kazbo]

Hi, I have been having issues for a few years, I decided to do my own little experiment and go gluten free. I will be telling the dr of my experience at the appointment tomorrow as it's been a bumpy ride, with rashes, chronic D, and stomach pains.  Other than that I am actually feeling better 😆. 

I was tested for celiac in 2022 but the results were supposedly negative.  I only had a basic Iga which came back at 0.2 u/ml. Which I think maybe borderline deficient??? No other tests were done.  I think I need a total Iga? Or should I be asking for something else?  I was also going to jump straight in and request an endoscopy to check the small intestine. 

I would be interested in any thoughts or suggestions. I'm in the UK. 

Thank you 😊 

[Scott Adams]

For a full panel these tests would be good:

• Total IgA Test
• tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease
• tTG-IgG (tissue transglutaminase IgG) Blood Test for Celiac Disease
• DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide) Blood Tests for Celiac Disease

If you have the details of your original test(s), along with the test reference ranges, feel free to share them.

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.

 

 

[Kazbo]

Tissue transglutaminase IgA level < 0.2 U/ml [< 14.9]; No serological evidence of Coeliac Disease Please refer to the joint BSPGHAN and Coeliac UK guidelines (2013) From 01/04/2022 TTG's will be processed at Mid Yorkshire Hospital laboratories.

Note change in method and change in reference range

Note: TTG tests are not currently in our scope of accreditation for ISO 15189

 

This was all the previous test said.  I didn't think much of it at the time as it says no evidence of celiac, but the test doesn't seem extensive unless I've missed something? 

[RMJ]

How long have you been gluten free? If you have additional tests done while gluten free you could get false negative results.

[Scott Adams]

If your Total IgA Test was deficient, like you mention, then you could have a false negative with your tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease.

[Kazbo]

8 hours ago, RMJ said:

How long have you been gluten free? If you have additional tests done while gluten free you could get false negative results.

A month now,  I am aware of these but I just felt I didn't have much choice but to try it anyway. I'm glad I did because over all I feel better and that is what's most important to me.  🙂

[Kazbo]

6 hours ago, Scott Adams said:

If your Total IgA Test was deficient, like you mention, then you could have a false negative with your tTG-IgA (tissue transglutaminase IgA) Blood Test for Celiac Disease.

I'm not 100% if sure if a result of 0.2 is deficient but I think it's closer enough to warrant further exploration considering that giving up gluten has had an impact.  Well see later.  🙂

[MIsailR]

Going gluten-free has helped and it is good to learn that. Well done for taking the control over your health! 🙌

On the results of the test, yes, 0. 2 u/ml does look high, but that may be due to the fact that the current has been diluted. You might want to be tested for total IgA level in order to exclude selective IgA deficiency in quest of getting a clearer diagnosis. Further, before any endoscopy, perhaps it may be better to ask your doc regarding a more aggressive panel and gluten challenge to see if it is indeed gluten causing the problem.

[Kazbo]

Thank you everyone, I have been referred to gastroenterology, which is great but just more waiting.  In the meantime I'll carry on gluten free. 🙂

[Scott Adams]

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.