Potential diagnosis

[matts]

Hi,

I've recently had a blood test for potential Coeliac, I have had my results which was 4.12 G/L, normal range is 0.8-2.8 G/L according to my results. My Mum has Coeliacs diagnosed already. I've had symptoms hence the blood test. 

The Dr has said that these results are 'satisfactory' but I'm not sure whether it means I should start reducing the amount of Gluten, or whether it could be diagnosed in the future?

Has anyone had similar results?

[Scott Adams]

Given your family history and you this test result, it's very likely that you have celiac disease. The next step is normally an endoscopy to confirm the diagnosis, and if so, you would need to keep eating gluten daily, lots of it, for at least two weeks before that procedure.

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. 

 

 

[trents]

For the doctor to say the results of the test were "satisfactory" is rather odd. By that did he mean he didn't think you have celiac disease.? I mean, the result of the test is positive for celiac disease. Or, did he mean that it was satisfactory in the sense of agreeing with your symptoms and family history as indicating celiac disease? It was a rather ambiguous remark in my opinion.

[cristiana]

Hi @matts

Welcome to the forum.

I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'!

Anyway, if so the UK, 'satisfactory' blood tests mean as follow:

'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.' 

Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them.

Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me.

However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual.

Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much. 

Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten.

If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.  

One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!!

Cristiana

 

 

 

Edited October 12, 2024 by cristiana

[matts]

22 minutes ago, cristiana said:

Hi @matts

Welcome to the forum.

I'm a coeliac living in the UK.  I have a hunch you may be posting from the UK because of the way you spell 'coeliac.'  Our American friends, quite sensibly in my opinion, drop the 'o'!

Anyway, if so the UK, 'satisfactory' blood tests mean as follow:

'Satisfactory. Take no action - This means that the doctor has looked at the results and deemed it to be very close to the normal range for the test and the result is not concerning. Some patients have consistently abnormal results that are 'normal' to them.' 

Source: https://www.nrmc.nhs.uk/test-results#:~:text=Satisfactory.,are 'normal' to them.

Now,  I have annual/biannual blood tests and get a few blood tests that consistently hover just above normal limits, and they come back with that typed next to them.  The doctors can look back at my records and see that the readings are normal for me.

However, under your particular circumstances I would definitely request to be sent to a gastroenterologist.  Because although your GP considers your blood tests are satisfactory, i.e. just outside normal limits, they ARE nevertheless outside normal limits and you do have a first degree relative with Coeliac Disease.  I am no doctor but I would say this gives sufficient grounds for investigation, especially if you have been experiencing any gastric symptoms,  or seemingly unrelated things like headaches, tingling extremities, or tiredness - the symptoms of coeliac disease vary enormously from individual to individual.

Also, may I ask you, have you been consuming gluten with most meals in the past few weeks prior to your blood test?  For a positive blood test,  coeliacs need to consume the equivalent of about 2-3 slices of gluten containing bread a day over a six to eight week period.  Because if you don't eat much gluten, you may not be reacting much. 

Bear in mind that if you do go forward for further blood tests or an endoscopy, you will need to keep eating gluten.

If it turns out you are a coeliac, in the UK a coeliac diagnosis will entitle you to all sorts of important NHS health monitoring and support, which in the long-term even if you are feeling well now, could be very beneficial to your health.  

One other reason it would be good to know one way or another, is because if you turn out to be a coeliac, you will need to take the diet extremely seriously.  It can at times be a bit restricting, as you mother I am sure will tell you.  And gluten free substitutes can be expensive - my gluten-free pasta, my gluten-free chocolate biscuits, my gluten-free bread adds pounds to my weekly shop!!

Cristiana

 

 

 

Hi Cristiana,

You’re spot on, I am from the UK! 

In terms of eating gluten prior to the blood test, I only had a week in between requesting and having it done but I think it would be accurate in terms of how much I’d eaten, I have two slices of toast most mornings and gluten included in most other meals throughout the day.

Thank you for the article, as you said with the family history it is probably correct that it should be investigated further. I’ll contact my GP on Monday and ask for further investigation, as you said I know they aren’t massively over the normal limit but must be a ‘normal’ range for a reason and if it’s come back above it then it needs looking at! 

I’ll continue my diet as is for now so then if I do have further tests then they should be accurate results.

Thanks again, Matt
 

[cristiana]

Hi @matts

Yes.... it's a mystery to me why we are holding onto that 'o'.   I expect it won't be there in 100 years!

I think you are very wise to go back to your GP to chat through your options.  

If you would like to know one way or another, he or she may be happy for you to see a gastroenterologist through the NHS.   If not, and you would still like to know and can afford it, you could do what my friend did,  She went direct to a consultant at our local private hospital to have an endoscopy.  Her situation was different from yours in that she did not test positive, but she did have gastric symptoms.  Her Dad was a coeliac and she wanted to be sure she wasn't one of a small number of coeliacs that don't ever test positive in the blood test, but do have villous damage in their gut.

I do hope things work out well for you - perhaps drop by and give us an update sometime!

Cristiana 

Edited October 12, 2024 by cristiana

[RMJ]

15 hours ago, matts said:

Hi,

I've recently had a blood test for potential Coeliac, I have had my results which was 4.12 G/L, normal range is 0.8-2.8 G/L according to my results. 

Based on the normal range and units, that looks like a test for total IgA, not a celiac specific test.  Were any other tests run?

[matts]

1 hour ago, RMJ said:

Based on the normal range and units, that looks like a test for total IgA, not a celiac specific test.  Were any other tests run?

That’s interesting, no I just had a full set of blood tests done but I had asked for a coeliac test, I’ll mention that when I speak to my GP on Monday.

[cristiana]

@matts  Sorry - I didn't register the type of test.  In the UK they routinely also do the tTG test too, so I wouldn't be surprised if it hasn't come back yet. For some reason, the tTg test  can take quite a long time to come back from the lab ... maybe more than a week.   

I recall my total IgA wasn't convincing, but my tTG levels were through the roof.  It may be the case with you.

https://www.coeliac.org.uk/information-and-support/coeliac-disease/getting-diagnosed/blood-tests-and-biospy/#:~:text=Your GP will carry out,transglutaminase antibody (shortened to tTG)

[trents]

matts, can you please post the actual name of the test you allude to in your original post? We are uncertain which test you refer to as there are a number of blood antibody tests that can be run for celiac disease. Some of us assumed it was the tTG-IGA test since that is the first tool (and often the only one) that most physicians will grab out of the diagnostic bag when checking for celiac disease. But RMJ could be correct in stating it could have been the total IGA test. The "total IGA" test (and it also goes by other names) that RMJ referred to checks for IGA deficiency. If you are IGA deficient it can create false negatives in the celiac specific IGA antibody blood tests. Besides IGA antibody blood tests, there are also IGG antibody blood tests that can be run for celiac disease detection. The IGG ones can be useful when someone is IGA deficient. Please refer to the article that Scott Adams embedded in his post above.

Edited October 12, 2024 by trents

[trents]

cristiana, what do you mean when you say "I recall my total IgA wasn't convincing"? Convincing of what? That one isn't even checking for celiac disease per se. It's only run in order to check for IGA deficiency since IGA deficiency can cause false negatives in the actual individual IGA celiac antibody tests. The total IGA test is not a direct test for celiac disease at all. But if one's total IGA is low (or deficient) it suggests that the physician should forsake the results of the IGA panel and move on to the IGG panel.

Edited October 12, 2024 by trents

[matts]

52 minutes ago, trents said:

matts, can you please post the actual name of the test you allude to in your original post? We are uncertain which test you refer to as there are a number of blood antibody tests that can be run for celiac disease. Some of us assumed it was the tTG-IGA test since that is the first tool (and often the only one) that most physicians will grab out of the diagnostic bag when checking for celiac disease. But RMJ could be correct in stating it could have been the total IGA test. The "total IGA" test (and it also goes by other names) that RMJ referred to checks for IGA deficiency. If you are IGA deficient it can create false negatives in the celiac specific IGA antibody blood tests. Besides IGA antibody blood tests, there are also IGG antibody blood tests that can be run for celiac disease detection. The IGG ones can be useful when someone is IGA deficient. Please refer to the article that Scott Adams embedded in his post above.

Hi, the exact name on the blood test is ‘Tissu transglutaminase IgA lev’

[trents]

Okay, Scott and I were correct in our assumption then. It was a specific celiac blood antibody test and it was positive. 

[matts]

34 minutes ago, trents said:

Okay, Scott and I were correct in our assumption then. It was a specific celiac blood antibody test and it was positive. 

That’s interesting thank you. I’ll definitely be going back to the GP on Monday and I’ll update

[cristiana]

1 hour ago, trents said:

cristiana, what do you mean when you say "I recall my total IgA wasn't convincing"? Convincing of what? That one isn't even checking for celiac disease per se. It's only run in order to check for IGA deficiency since IGA deficiency can cause false negatives in the actual individual IGA celiac antibody tests. The total IGA test is not a direct test for celiac disease at all. But if one's total IGA is low (or deficient) it suggests that the physician should forsake the results of the IGA panel and move on to the IGG panel.

Just repeating what my gastroenterologist was saying. Sorry - not a helpful post of mine, as I wasn't even sure what he meant!

[RMJ]

With the range and units it does not make any sense for that test to be for Tissue transglutaminase IgA.  That normal range would be very logical for total IgA.  Please ask your GP when you see him/her.