Test Results

[Liam1047]

Hi all,

Not coeliac but in early stages of testing. Long story short I have digestive issues, brain fog, tiredness and body aches. Went to doctors and they have tested for coeliacs using IgA tTG. The results have come back just above the reference limit. I am in the UK and reference ranges for my doctors are 0.8 - 2.7 g/L; my level was 3.0.

this combined with symptoms, I am wondering if it is likely coeliac? Has anyone else tested positive but just above the upper reference limit?

Thanks!

[trents]

5 hours ago, Liam1047 said:

Hi all,

Not coeliac but in early stages of testing. Long story short I have digestive issues, brain fog, tiredness and body aches. Went to doctors and they have tested for coeliacs using IgA tTG. The results have come back just above the reference limit. I am in the UK and reference ranges for my doctors are 0.8 - 2.7 g/L; my level was 3.0.

this combined with symptoms, I am wondering if it is likely coeliac? Has anyone else tested positive but just above the upper reference limit?

Thanks!

Plenty of people have this pattern. Leading up to the blood draw, had you already begun cutting back on your gluten consumption? Is the tTG-IGA the only test your physician ordered? If he/she had run a "full celiac panel" you might have a more complete picture. The tTG-IGA is considered the best single test for celiac disease in that it combines good specificity with good sensitivity but some people's immune system responds atypically. So other tests can catch them when the tTG-IGA misses. 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Seems like a lot of people joining the forum from the UK are reporting difficulty getting proper testing done these days.

Edited May 12, 2022 by trents

[Scott Adams]

Welcome to the forum!

You are above the limit, and this is a test that is very specific for celiac disease, so I'd assume that you have celiac disease. Even if your results were 2.6 on that test, I would say that you still could have celiac disease.

For some reason, and I believe it was around 5-7 years ago, we started seeing some labs include a zone called "weak positive," which seems to really just confuse people. We have also heard of doctors telling their patients that they are only "slightly positive" with results like yours. This approach may lead some people to not pursue a gluten-free diet until their situation gets worse.

Again, the reality of this test is that those without any autoimmune issues to gluten/gliadin should not have elevated levels at all, and should probably still be concerned with levels that are 2.0 and above. 

[Wheatwacked]

Have they scheduled you for a biopsy?

BSG Interim Guidance: COVID-19 specific non-biopsy protocol for those with suspected coeliac disease

[Liam1047]

17 hours ago, trents said:

Plenty of people have this pattern. Leading up to the blood draw, had you already begun cutting back on your gluten consumption? Is the tTG-IGA the only test your physician ordered? If he/she had run a "full celiac panel" you might have a more complete picture. The tTG-IGA is considered the best single test for celiac disease in that it combines good specificity with good sensitivity but some people's immune system responds atypically. So other tests can catch them when the tTG-IGA misses. 

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Seems like a lot of people joining the forum from the UK are reporting difficulty getting proper testing done these days.

Thanks Trents - I hadn't been cutting back as I know that negates the point of the test! National guidelines in the UK do suggest everyone should have a full coeliac panel  so I am not sure why I have just been tested once, I'm chatting to my GP Monday to navigate a way ahead!

12 hours ago, Scott Adams said:

Welcome to the forum!

You are above the limit, and this is a test that is very specific for celiac disease, so I'd assume that you have celiac disease. Even if your results were 2.6 on that test, I would say that you still could have celiac disease.

For some reason, and I believe it was around 5-7 years ago, we started seeing some labs include a zone called "weak positive," which seems to really just confuse people. We have also heard of doctors telling their patients that they are only "slightly positive" with results like yours. This approach may lead some people to not pursue a gluten-free diet until their situation gets worse.

Again, the reality of this test is that those without any autoimmune issues to gluten/gliadin should not have elevated levels at all, and should probably still be concerned with levels that are 2.0 and above. 

Thank you Scott. I agree and see what you mean, I'd assume antibodies should be near zero if there was nothing going on. I'm booked in with my GP Monday to either get a full panel or straight to endoscopy (NHS Guidance pending). Some of my friends are coeliac and they took a while to get to the bottom of it as they were palmed of with borderline high levels. Going to up my gluten as much as I can in case another blood test is required!

2 hours ago, Wheatwacked said:

Have they scheduled you for a biopsy?

BSG Interim Guidance: COVID-19 specific non-biopsy protocol for those with suspected coeliac disease

Not yet and not sure if they are going ahead at the moment, the NHS in England is still only prioritising this sort of health service to those who are in dire need (ie., suspected cancer) to reduce the chance of COVID infection and spread. It does have to be a gastroenterologist though who diagnoses this condition in the UK, so even if I don't have the endoscopy I'm going to ask about being referred onto secondary care at least!

[Russ H]

Several other conditions are also associated with raised levels of anti-tTG2 antibodies including arthritis, IBS and type 1 diabetes, but the levels are not as high as often seen with coeliac disease. A high level is very specific for coeliac disease, but a low level could be coeliac or another condition and needs further investigation.

Be persistent because many GPs are not very knowledgeable about coeliac disease. You have several of the classical symptoms of coeliac disease as well as a positive antibody result. Most sufferers have at least one and often multiple deficiencies of vitamins and minerals at diagnosis. I would ask to at least get your haemoglobin and ferritin tested as iron deficiency anaemia is very common. It is worth taking a multivitamin and mineral supplement.

Anti-Tissue Transglutaminase Antibodies in Arthritic Patients: A Disease-specific Finding?

 

[trents]

1 hour ago, Russ314 said:

Several other conditions are also associated with raised levels of anti-tTG2 antibodies including arthritis, IBS and type 1 diabetes, but the levels are not as high as often seen with coeliac disease. A high level is very specific for coeliac disease, but a low level could be coeliac or another condition and needs further investigation.

Be persistent because many GPs are not very knowledgeable about coeliac disease. You have several of the classical symptoms of coeliac disease as well as a positive antibody result. Most sufferers have at least one and often multiple deficiencies of vitamins and minerals at diagnosis. I would ask to at least get your haemoglobin and ferritin tested as iron deficiency anaemia is very common. It is worth taking a multivitamin and mineral supplement.

Anti-Tissue Transglutaminase Antibodies in Arthritic Patients: A Disease-specific Finding?

 

A little dated but nonetheless, a good find, Russ! I also note that four of the people in the test group who did have celiac disease did not have elevated tTG-IGA values. That agrees with the experience some of our forum participants of late and reinforces the value of getting a full celiac panel run rather than just the tTG-IGA.