5 year old son's results...still confused!

[Mel43]

Hello! My son has a history of GERD since birth, and was on alimentum formula, was dairy free, and things just didn't really resolve...we were just managing.

Fast forwarding to now...he just had testing done and his DGP IgA was 40.5. Does this usually mean celiacs? 

Back in February he was diagnosed with duodenitis, and the TtG IgA was negative. He was doing a bit better with medication initially, but then this summer got worse. Then at the end of the summer he had rectal bleeding, which has been an isolated incident. 

I know I need to wait on the doctor, but I'm just trying to grasp the possibilities at this point. Thanks for any insights or thoughts!!

[Mel43]

Oh, he also had high fecal calprotectin...it was 135.

[trents]

Welcome to the forum, Mel43.

Can you provide the negative vs. positive range for the DGP-IGA? There is no industry standard and each lab uses their own ranges.

The tTG-IGA test can generate a false negative if total IGA is low. I would ask your physician to run this test. It is often omitted but especially for children it should be run along with tTG-IGA. With children, we often see elevated DGP-IGA even though the tTG-IGA is negative in cases where the child actually does have celiac disease.

It is important that your son not cut back on gluten consumption until all testing for celiac disease is complete, including an endoscopy with biopsy should your physician decide to order that or to refer your son to a GI doc for such.

[Mel43]

Than

14 hours ago, trents said:

Welcome to the forum, Mel43.

Can you provide the negative vs. positive range for the DGP-IGA? There is no industry standard and each lab uses their own ranges.

The tTG-IGA test can generate a false negative if total IGA is low. I would ask your physician to run this test. It is often omitted but especially for children it should be run along with tTG-IGA. With children, we often see elevated DGP-IGA even though the tTG-IGA is negative in cases where the child actually does have celiac disease.

It is important that your son not cut back on gluten consumption until all testing for celiac disease is complete, including an endoscopy with biopsy should your physician decide to order that or to refer your son to a GI doc for such.

Thank you! For the DPG-IGA it lists 0-13.9 as being normal. Max's was 40.5.  His DPG-IGG was 6, with normal being 0-14.9.

His TTG-IGA was <0.5, with normal also being 0-14.9.

[Wheatwacked]

2 hours ago, Mel43 said:

My son has a history of GERD since birth, and was on alimentum formula, was dairy free, and things just didn't really resolve...we were just managing.

When my son was diagnosed with Celiac Disease as soon as he was weaned he was put on Nutramigen.  That was back in 1976 and it is still the best.  Improvement was immediate and he grew up fine and strong. It is the only hypoallergenic baby formula with 100% of all the essential nutrients.  They make a version for toddlers.

[trents]

Let me reiterate that Max should not reduce his gluten intake (wheat, barley and rye) until all testing for celiac disease is done. Withdrawal of gluten before testing will compromise the test results as it will allow inflammation of the small bowel lining to subside (if Max in fact has celiac disease) and antibodies will therefore cease to be produced.

Also, his DGP-IGA is strongly positive. This is often a more reliable indicator of celiac disease in young children than is the tTG-IGA.

Edited October 17, 2023 by trents

[Scott Adams]

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. The next step might be an endoscopy to confirm a celiac disease diagnosis, and if that ends up being negative you may still want to try out a gluten-free diet to see if his symptoms improve.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

 

[Mel43]

On 10/17/2023 at 12:53 PM, Scott Adams said:

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. The next step might be an endoscopy to confirm a celiac disease diagnosis, and if that ends up being negative you may still want to try out a gluten-free diet to see if his symptoms improve.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

 

 

Thank you all so much for the information! We did the genetic testing, and I'm waiting for the doctor to respond. I'm not sure what this means...his results for DQ2/DQX says value III, high. I'm so lost!

[trents]

DQ2 is one of the genes that have been proven to be connected to the potential to develop celiac disease. People with the DQ2 who do develop celiac disease tend to be in the most sensitive, severe reaction to gluten group.