Can I get tested positive if I was tested negative when I 8yo?

[Allegria]

Hi!

I am 18 years old and I’ve been struggling with reoccurring respiratory infections for over 10 years. I have asthma and I take medicines for it prescribed by a pulmonologist. A few months ago I was diagnosed with iron deficiency (low ferritin, low MCV and high TIBC). I also feel very tired and have joint pains. I Don’t have any digestive problems or stomach aches.

2 weeks ago a doctor suggested that my symptoms could be associated with celiac disease. However, when I was 8 yo I was tested for tissue transglutaminase IGA and it came negative. Could I develop celiac disease over these ten years?

 

[cristiana]

Hello Allegria and welcome to the forum.

I am sorry to hear that you have these ongoing symptoms.

You have a good doctor: Yes, absolutely, coeliac disease can develop in that time.  By way of an illustration, my nephew is type 1 diabetic and has to be tested for coeliac disease every three years here in the UK, as part of his ongoing care, as according to Diabetes UK, 10 per cent of diabetes type one sufferers are also coeliacs.  Now this is not to worry you, I know a lot of coeliacs and not one of them has diabetes, but I wanted to make the point clearly coeliac disease can develop in much less than 10 years.

I hope this helps.

Incidentally - do you have coeliac disease in your family?  Is that why you were tested when you were younger.  Coeliac is inherited, although not everyone who carries the gene actually develops it.

[cristiana]

Sorry - I meant to add, is your doctor going to be sending you for more tests?  If so, do make sure you are consuming at least 2 slices of glutenous bread or the equivalent per day for 6-8 weeks prior to your blood test, for the coeliac antibodies to show in your blood.

[Allegria]

10 minutes ago, cristiana said:

Sorry - I meant to add, is your doctor going to be sending you for more tests?  If so, do make sure you are consuming at least 2 slices of glutenous bread or the equivalent per day for 6-8 weeks prior to your blood test, for the coeliac antibodies to show in your blood.

Thank you very much for your support and quick reply. It means a lot to me.

I was tested for celiac disease (but only for tissue transglutaminase IGA) when I was 8 yo because of aneamia and an ongoing pneumonia at the time. I was in a hospital for over three weeks and they ran a lot of blood tests at the time and tissue transglutaminase IGA was one of them.

When it comes to my family, it’s hard to tell. My mom’s side is healthy (at least that what it seems so). My mom never had problems with health, neither asthma or other concerning symptoms. When it comes to my father, I haven’t kept in touch with him for over 15 years. What is concerning, is that, as far as I know, he had a lot of health problems when he was a child. From what I’ve heard, he still struggles with many symptoms.

My doctor already prescribed some basic celiac tests (total IGA, tissue transglutaminase IGA and DPG IGA). I had blood test done yesterday and currently I Am waiting for the results.

Once again thank you for your support

[cristiana]

You are welcome, Allegria.

Should your blood tests come back negative it is worth remembering that a very small number of coeliacs test negative in blood tests, so if you have ongoing symptoms your gastroenterologist may wish to conduct an endoscopy just to be sure.  The two other main reasons for a negative test could be insufficient consumption of gluten prior to the test, or you may have a similar condition, non celiac gluten sensitivity.  This can give all sorts of symptoms which mirror celiac disease, but there isn't villous atrophy, which is the damage which occurs to celiacs in the gut when glutened is consumed.

Interesting what you say about your father.  Should you test positive, it could indicate you have inherited it from him, although of course people can have it on both sides of the family.  I am the only celiac I know of in my family, but I have my suspicions about several family members on mum and dad's side.

Do come back to us if you need any more support.

Edited September 9, 2023 by cristiana

[Allegria]

8 minutes ago, cristiana said:

You are welcome, Allegria.

Should your blood tests come back negative it is worth remembering that a very small number of coeliacs test negative in blood tests, so if you have ongoing symptoms your gastroenterologist may wish to conduct an endoscopy just to be sure.  The two other main reasons for a negative test could be insufficient consumption of gluten prior to the test, or you may have a similar condition, non celiac gluten sensitivity.  This can give all sorts of symptoms which mirror celiac disease, but there isn't villous atrophy, which is the damage which occurs to celiacs in the gut when glutened is consumed.

Interesting what you say about your father.  Should you test positive, it could indicate you have inherited it from him, although of course people can have it on both sides of the family.  I am the only celiac I know of in my family, but I have my suspicions about several family members on mum and dad's side.

Do come back to us if you need any more support.

Thank you very much. Once I get my results, I will let you know about them. 

[trents]

Allegria,

Cristiana gives good advice. Some experts believe that NCGS (Non Celiac Gluten Sensitivity) can be a precursor to celiac disease and, as Cristiana said, there are overlapping symptoms between the two.

It takes both the genes and some triggering stress event, such as a viral infection, to turn the genes on in order for celiac disease to develop. 

Another route you should consider is getting a genetic test done to see if you have one or more of the genes associated with celiac disease. If you don't have them, you may still have NCGS or some other medical condition causing your anemia, asthma and other symptoms. Have you been tested for pernicious anemia? This is a kind of anemia caused by the inability to absorb vitamin B12 which results in anemia because B12 is necessary to iron assimilation.

Edited September 9, 2023 by trents

[Allegria]

31 minutes ago, trents said:

Allegria,

Cristiana gives good advice. Some experts believe that NCGS (Non Celiac Gluten Sensitivity) can be a precursor to celiac disease and, as Cristiana said, there are overlapping symptoms between the two.

It takes both the genes and some triggering stress event to turn the genes on in order for celiac disease to develop. 

Another route you should consider is getting a genetic test done to see if you have one or more of the genes associated with celiac disease. If you don't have them, you may still have NCGS or some other medical condition causing your anemia, asthma and other symptoms. Have you been tested for pernicious anemia? This is a kind of anemia caused by the inability to absorb vitamin B12 which results in anemia because B12 is necessary to iron assimilation.

Thank you very much for your advice.
I had B12 levels checked twice and they were always normal. 
For now, I will wait for my blood test results. Once I get them, I will talk to my doctor and then think about another steps. 
 

[Allegria]

On 9/9/2023 at 2:56 PM, cristiana said:

You are welcome, Allegria.

Should your blood tests come back negative it is worth remembering that a very small number of coeliacs test negative in blood tests, so if you have ongoing symptoms your gastroenterologist may wish to conduct an endoscopy just to be sure.  The two other main reasons for a negative test could be insufficient consumption of gluten prior to the test, or you may have a similar condition, non celiac gluten sensitivity.  This can give all sorts of symptoms which mirror celiac disease, but there isn't villous atrophy, which is the damage which occurs to celiacs in the gut when glutened is consumed.

Interesting what you say about your father.  Should you test positive, it could indicate you have inherited it from him, although of course people can have it on both sides of the family.  I am the only celiac I know of in my family, but I have my suspicions about several family members on mum and dad's side.

Do come back to us if you need any more support.

Hi! I just got my tests results:

Tissue transglutaminase IGA < 0,15

DPG IGA < 0,15

Total IGA 5,9 (high)

I have idea why my total IGA is higher than normal (I’ve read that norm for adults is power than 4,5 here in my country - Poland). Does it mean that I can still have celiac disease despite low TTG and DPG?

 

 

Sorry, I meant “lower”, not “power”.

[Allegria]

1 minute ago, Allegria said:

Hi! I just got my tests results:

Tissue transglutaminase IGA < 0,15

DPG IGA < 0,15

Total IGA 5,9 (high)

I have idea why my total IGA is higher than normal (I’ve read that norm for adults is power than 4,5 here in my country - Poland). Does it mean that I can still have celiac disease despite low TTG and DPG?

 

 

and “no idea”

[trents]

7 hours ago, Allegria said:

Hi! I just got my tests results:

Tissue transglutaminase IGA < 0,15

DPG IGA < 0,15

Total IGA 5,9 (high)

I have idea why my total IGA is higher than normal (I’ve read that norm for adults is power than 4,5 here in my country - Poland). Does it mean that I can still have celiac disease despite low TTG and DPG?

 

 

Sorry, I meant “lower”, not “power”.

Allegria, in order to make any sense of your tTG-IGA and your DPG IGA scores we would need both the raw score (what you seem to have provided) and the ranges for both (i.e., what is considered negative vs. positive). There is no industry standard for these. Each lab uses their own ranges. That your total IGA is high is insignificant. If it were low, it would likely drag other IGA scores down with it and could create false negatives.

[Allegria]

51 minutes ago, trents said:

Allegria, in order to make any sense of your tTG-IGA and your DPG IGA scores we would need both the raw score (what you seem to have provided) and the ranges for both (i.e., what is considered negative vs. positive). There is no industry standard for these. Each lab uses their own ranges. That your total IGA is high is insignificant. If it were low, it would likely drag other IGA scores down with it and could create false negatives.

Ok, I will give you some more details:

for tTG-IGA you get negative when it is below <0,30 and strongly positive when it is over 4,5. My result for tTG-IGA is <0,15.

For DPG IGA it’s the same, you get negative when it is  below < 0,3 and strongly positive when it is over 4,5. My result is <0,15

 

[trents]

Those test ranges and results are presented in a different format than we are used to seeing. How can a test result be less than 0? 

Is the comma in each couplet equivalent to a decimal point? So like <0,30 is the same as less than 0.3? 

[Allegria]

39 minutes ago, trents said:

Those test ranges and results are presented in a different format than we are used to seeing. How can a test result be less than 0? 

Is the comma in each couplet equivalent to a decimal point? So like <0,30 is the same as less than 0.3? 

I guess that it means that it is less than 0,3 (not less than 0).

I added a file with my test results, but they are in Polish, so I don’t know if it will help you with analysis.

Thank you very much for your effort.

[trents]

I am aware that in many European countries the comma is used like we would use a decimal point in the USA in medicine and science.

So, I guess the easiest thing to do is just to ask you if any of those tests were positive. Or do you know? Has there been any input from the physician since the tests were ordered?

Edited September 13, 2023 by trents

[Allegria]

42 minutes ago, trents said:

I am aware that in many European countries the comma is used like we would use a decimal point in the USA in medicine and science.

So, I guess the easiest thing to do is just to ask you if any of those tests were positive. Or do you know? Has there been any input from the physician since the tests were ordered?

None of these two was positive. Tomorrow I have a doctor’s appointment, so I am sure he will also look at my results and analyse them.

[trents]

One test that should have been run and was not is the "total IGA" which is not per se a celiac antibody test but if it is low it will likely drag down the scores of the celiac antibody tests toward the negative range.

There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test but there is much symptom overlap with celiac disease. NCGS does not damage the villus lining of the small bowel and is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease. Both require a life long commitment to gluten-free eating so in that sense, knowing which one you have is not a deal breaker.

[Allegria]

11 hours ago, trents said:

One test that should have been run and was not is the "total IGA" which is not per se a celiac antibody test but if it is low it will likely drag down the scores of the celiac antibody tests toward the negative range.

There is also the possibility that you have NCGS (Non Celiac Gluten Sensitivity) for which there is no test but there is much symptom overlap with celiac disease. NCGS does not damage the villus lining of the small bowel and is 10x more common than celiac disease. Some experts feel it can be a precursor to celiac disease. Both require a life long commitment to gluten-free eating so in that sense, knowing which one you have is not a deal breaker.

I mentioned total IGA in my first post about the results and it was higher than normal - 5,9. 

I will talk about possible NCGS with my doctor. 
Thank you very much for your help.