6 year old false negative?

[Steph974]

My son was recently screened for coeliac disease due to not having gained any weight in the past 6 months, occasional constipation and stomach aches. He is also irritable and has some enamel defects on his permanent front teeth that have come through this year. His results came back negative and are: 

Tissu transglutaminase IgA level <0.1U/ml

(Reference range 0.1-3.5U/ml)

IgA 0.51 g/L
(reference range 0.27-1.95g/L)

Do you think these definitely rule out coeliac disease or is there still a chance he could have it. I would really appreciate any opinions on this. Thank you

 

 

[cristiana]

Hello Steph and welcome to celiac.com!

I am sorry to hear your son is struggling.

The issue with negative blood tests is they aren't always conclusive proof that someone doesn't have coeliac disease. A small percentage of coeliacs have negative blood tests, even if they have damage to their guts.  The only way to be absolutely sure in these incidences is to have an endoscopy.

The other reason some people have negative blood test results is because they haven't consumed enough gluten to trigger a positive reaction.  Normally, before a coeliac test, it is recommended someone eats the equivalent of 2 slices of normal bread (i.e. containing gluten) for 6-8 weeks before the blood test.  Was your son consuming gluten before he had his blood tests?

I wonder what age your son is?  I have noticed that a few children/young people I know have suffered gastric problems around the age of 10 to early teens, including one of my own children, and it turned out we think to be anxiety driven.  New school, exams, that sort of thing.  One of my friends had this issue with her child and the doctor told her that they see a lot of stomach issues in this age group.  I would not want to dismiss this as "just anxiety" but it is something else to consider.

I hope some of this helps.

Cristiana

 

 

Edited October 3, 2021 by cristiana

[Steph974]

Thanks for your reply, Cristiana!

My son was 6 at the time of the test, 7 now. He is generally a bit anxious (is has sensory issues with his clothes which upset him) so that could be a factor for him. 
He was eating gluten at the time of the test, but 4-6 weeks before the test he was not, because we tried him on a gluten free diet for two weeks. During that time we felt there was an improvement in his behaviour.

I know that I have one of the coeliac genes so he might as well. I have never been tested for coeliac because I don’t have symptoms, but I did do a home test some years ago which was negative. 
 

Also, his lack of weight gain is odd because he eats a lot. I wonder if this points to an absorption issue? 
 

Thanks for your thoughts and taking the time to read! 

[Steph974]

1 hour ago, Steph974 said:

My son was recently screened for coeliac disease due to not having gained any weight in the past 6 months, occasional constipation and stomach aches. He is also irritable and has some enamel defects on his permanent front teeth that have come through this year. His results came back negative and are: 

Tissu transglutaminase IgA level <0.1U/ml

(Reference range 0.1-3.5U/ml)

IgA 0.51 g/L
(reference range 0.27-1.95g/L)

Do you think these definitely rule out coeliac disease or is there still a chance he could have it. I would really appreciate any opinions on this. Thank you

 

 

I forgot to add, is it unusual the the IgA so low that it is below the reference range?

[cristiana]

Hi Steph

Now... that's very interesting that he wasn't eating gluten before the blood tests were done.   This is so often the case.   I think it would be an idea to go back to your GP and ask if he can be retested after eating gluten again for 6-8 weeks.

It is also very interesting that you know you have a coeliac gene.   By way you spell coeliac I imagine you are posting from the UK, or perhaps Australia?  If it is the former, I would like to congratulate you on managing to find that out. This sort of genetic testing is the exception rather than the norm in the UK.  But of course, the fact that someone has the gene doesn't automatically mean they will ever develop symptoms.

Regarding the low reading, I have to admit that although I'm a moderator these blood readings are not my area of expertise (I really ought to do a course!) so I feel that someone else will need to answer that.  I hope someone will get back to you about the IgA question but if that question is missed let me know and I'll contact one of my fellow mods.

But in answer to your other question, coeliac disease will impede absorption so could well explain his symptoms

Cristiana

 

 

Edited October 3, 2021 by cristiana

[RMJ]

On 10/3/2021 at 2:34 AM, Steph974 said:

I forgot to add, is it unusual the the IgA so low that it is below the reference range?

No, that is not unusual for this type of test.  Some labs would give the reference range as 0 to 3.5 but never actually report a zero.  Lab tests such as these have a “limit of quantification” below which the results are too variable to be accurate, so they just report “less than #” like what you posted.

Also, there are other antibodies that can be measured to look for celiac disease.  Some people are only positive for DGP (deamidated gliadin peptide) antibodies.  For both Ttg and DGP there are tests that can look for both IgA and IgG antibodies.  One does not need all the tests to be positive to have celiac disease, one is enough.

[Steph974]

On 10/3/2021 at 10:51 AM, cristiana said:

Hi Steph

Now... that's very interesting that he wasn't eating gluten before the blood tests were done.   This is so often the case.   I think it would be an idea to go back to your GP and ask if he can be retested after eating gluten again for 6-8 weeks.

It is also very interesting that you know you have a coeliac gene.   By way you spell coeliac I imagine you are posting from the UK, or perhaps Australia?  If it is the former, I would like to congratulate you on managing to find that out. This sort of genetic testing is the exception rather than the norm in the UK.  But of course, the fact that someone has the gene doesn't automatically mean they will ever develop symptoms.

Regarding the low reading, I have to admit that although I'm a moderator these blood readings are not my area of expertise (I really ought to do a course!) so I feel that someone else will need to answer that.  I hope someone will get back to you about the IgA question but if that question is missed let me know and I'll contact one of my fellow mods.

But in answer to your other question, coeliac disease will impede absorption so could well explain his symptoms

Cristiana

 

 

Hi Cristiana,

Thanks very much for your reply. You’re right - I am in the UK! However, I didn’t get that DNA test thorough the NHS - I did private testing with DNAFit for general health information which is how I found out I am predisposed to coeliac disease. 
 

My son actually had a blood test last week for his thyroid as his FT4 had been lower than the normal range at his initial blood test so they wanted to retest it. Once the result from that is back, I’ll see what the next steps are with the GP. In the meantime, I have ordered a home test that supposedly tests IgG as well as IgA. https://www.personaldiagnostics.co.uk/coeliacscreen.html I have no idea if that test will be reliable though!

[cristiana]

57 minutes ago, Steph974 said:

Hi Cristiana,

Thanks very much for your reply. You’re right - I am in the UK! However, I didn’t get that DNA test thorough the NHS - I did private testing with DNAFit for general health information which is how I found out I am predisposed to coeliac disease. 
 

My son actually had a blood test last week for his thyroid as his FT4 had been lower than the normal range at his initial blood test so they wanted to retest it. Once the result from that is back, I’ll see what the next steps are with the GP. In the meantime, I have ordered a home test that supposedly tests IgG as well as IgA. https://www.personaldiagnostics.co.uk/coeliacscreen.html I have no idea if that test will be reliable though!

Hiya Steph!

That's really interesting about DNAFit.   I wasn't surprised it wasn't the NHS though as I am not sure they even do coeliac gene testing, but perhaps I'm wrong.

Do keep us posted.  I think the key thing with this is to remember that there won't be a reaction if your son has no gluten in his diet, or very little.  It is normally recommended that gluten needs to be incorporated as 2 slices of bread or the equivalent daily for 6-8 weeks for it to have an effect, prior to a blood test.   If you pursue this "gluten challenge" as we call it and he is still negative he may have something called Non Coeliac Gluten Intolerance, or he may be one of the minority of coeliacs that has damage to his gut but despite this produce negative blood tests.   In adults where there are symptoms but a negative blood test despite a gluten challenge,  an endoscopy is really the only way to rule coeliac disease in or out.  I am not sure what the NICE recommendations are for children in this particular category. 

Hopefully though, if your child should have coeliac disease, the gluten challenge will show in his blood test and no endoscopy would be required.

https://www.coeliac.org.uk/healthcare-professionals/diagnosis/diagnosis-in-children/

I hope your meetings go well with the GP.

Cristiana

Edited October 5, 2021 by cristiana

[Steph974]

Hello again, 

Just an update. My son’s thyroid test came back normal which is great. 
Today the home coeliac test arrived which tests for both IgA and IgG. I can see a VERY faint line but was wondering if others would consider this positive or negative? 

Thanks!

[RMJ]

The only line I see is on the “C” side which I presume is the Control (T for Test).  Was the faint line visible during the time specified by the instructions?  Sometimes a faint line will show up later on this type of test which is not a positive.

[Steph974]

2 hours ago, RMJ said:

The only line I see is on the “C” side which I presume is the Control (T for Test).  Was the faint line visible during the time specified by the instructions?  Sometimes a faint line will show up later on this type of test which is not a positive.

The line was there during the specified time but was very faint and hard to pick up on camera. It is a bit darker and easier to see now (although now outside the specified time)