Elevated Ttg IgG and negative biopsy

[Sarah910]

Hi all, I’m looking for some advice and wisdom. 
Here’s some back story..

My 5 year old son has been suffering with stomach aches, mucusy stools, headaches and joint pains since November last year after a run of nasty winter virus’. Due to having coeliac in the family (my late grandmother and uncle) and feeling his symptoms were autoimmune in nature, we had him tested for coeliac. His first blood test came back as positive (although mildly) at 8.1 (I believe normal is 0-5). 
He had his endoscopy a couple of weeks ago and results are negative from that, although they repeated his blood test and this one came back at 6.8 (so still above normal but not hugely). 
The consultant said he wouldn’t diagnose him as coeliac based on this but would like repeat bloods in 3 months time and will review him then, due to the 2 raised blood tests. 

What is everyone’s thoughts? Is he just early stages of coeliac (I’m not overly confident in the biopsy process!) and the bloods are correct even though low level? Or is it unlikely that he has coeliac? 

thanks 
 

 

 

[trents]

Do you know exactly what antibody tests were run on our son? Children's immune systems are immature and frequently don't respond the same way as an adult's would. We see a lot of this on the forum. Many physicians will only run the tTG-IGA instead of a full celiac panel. Do you have access to more information about what tests were run?

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

If total IGA is low that can also suppress the tTG-IGA.

And it is also possible he has NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms.

[Scott Adams]

I would not call 8.1 on a 0-5 scale, or 6.8, "mildly high." They are solidly positive results for celiac disease, and I believe your doctor would be correct making the celiac disease diagnosis based on these results, especially given your family history of it. You didn't mention weather or not he was eating 2 slices of wheat bread per day for 6-8 weeks leading up to the tests, and at least two weeks before the biopsy, an if not, it could explain the negative biopsy results (or why the blood results were not even higher).

You definitely want to avoid the end stages of celiac disease, which is severe villous atrophy and malabsorption of nutrients, and your son is definitely having an autoimmune reaction to gluten which can lead to this if he keeps eating it.

[Sarah910]

4 hours ago, Scott Adams said:

I would not call 8.1 on a 0-5 scale, or 6.8, "mildly high." They are solidly positive results for celiac disease, and I believe your doctor would be correct making the celiac disease diagnosis based on these results, especially given your family history of it. You didn't mention weather or not he as eating 2 slices of wheat bread per day for 6-8 weeks leading up to the tests, and at least two weeks before the biopsy, an if not, it could explain the negative biopsy results (or why the blood results were not even higher).

You definitely want to avoid the end stages of celiac disease, which is severe villous atrophy and malabsorption of nutrients, and your son is definitely having an autoimmune reaction to gluten which can lead to this if he keeps eating it.

Thanks Scott. 
 

I believe he’s got coeliac based on symptoms and the blood test (it was Ttg IgG that was positive). Given the fact he’s so young, and been suffering a relatively short time, I don’t believe he has enough gut damage to be present on biopsy (for which I’m thankful, of course! but makes this process harder). The consultant won’t diagnose though. He effectively wants him to carry on causing damage so that it’s enough for a biopsy to detect.. 

We had him eating more than the recommended 2 slices of breads worth on the run up. 
 

[Sarah910]

6 hours ago, trents said:

Do you know exactly what antibody tests were run on our son? Children's immune systems are immature and frequently don't respond the same way as an adult's would. We see a lot of this on the forum. Many physicians will only run the tTG-IGA instead of a full celiac panel. Do you have access to more information about what tests were run?

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

If total IGA is low that can also suppress the tTG-IGA.

And it is also possible he has NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms.

It was Ttg IgG I believe? I was told 0-5 was considered normal and anything above was a positive result (although below 10 is ‘weak’ positive). From my research, that scale is the IgG parameters. 
I’m also under the impression that NCGS does not cause raised antibodies on blood test, so I don’t think it accounts for the raised result. 

[Scott Adams]

You may want to look at this research summary, as it does apply to your son's situation.

 

[Russ H]

Other conditions such as arthritis and type 1 diabetes can raise anti-tTG, but it does sound like coeliac disease. Will they do a coeliac gene test for him?