Toddler Testing

[paxmom]

Hello! My 2 year old son recently had some confusing lab results. He has been dealing with chronic constipation and a few other issues since 6 months old and we just started working with a pediatric GI. We got his results back at <.5 TTG, so negative. But his DGP levels came back positive at >250. We are doing a biopsy next week but I am driving myself crazy wondering the likelihood that he has celiac?
 

His doctor said that it could go either way but that his DGP level is very high. He also has had consistently high levels of lipase but we are unsure if that is related to celiac or not. Has anyone had a similar situation?

Thanks so much in advance! 

[trents]

Welcome to the forum, paxmom.

Children's immune systems are immature and often don't respond in the same way to celiac disease. Was there a total serum IGA count done? If total IGS is low then it drives down individual IGA scores. This might be helpful: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Note these statements from the linked article:

"Generally, children at risk for celiac disease are screened at age 2 or 3 unless symptoms are seen beforehand. In children younger than 3, with symptoms, antibody testing may not always be accurate."

"For young children (around age 2 years or below), Deamidated Gliadin IgA and IgG antibodies should also be included. All celiac disease blood tests require that you be on a gluten-containing diet to be accurate."

"Total serum IgA: This test is used to check for IgA deficiency, a condition associated with celiac disease that can cause a false negative tTG-IgA or EMA result. If you are IgA deficient, your doctor can order a DGP or tTG-IgG test."

Whatever you do, don't start your child on a gluten free diet until all testing is complete or the testing will be invalidated.

 

[paxmom]

Hi, yes he did have a total IGA test which came back normal at 52. Is that the one you’re referring to? 
thank you for that info! I keep seeing that young children may not test accurately, I just hope we can get a definitive answer so I know how to help him. We are definitely keeping him on gluten until at least after the biopsy. 

[trents]

Yes, total IGA is what I was referring to.

Have you considered getting a genetic test for celiac done on your son? That would at least establish whether or not he has potential for developing celiac disease. Constipation seem to be a very common symptom for children when they have celiac disease. It is also possible he has NCGS (Non Celiac Gluten Sensitivity) for which there is not currently a test available. Shares many of the same symptoms with celiac disease but does not damage the villi that line the small bowel. 10x more common than celiac disease. So when there are celiac-like symptoms but testing is negative, a diagnosis of NCGS can be made if withdrawal of gluten causes improvement of symptoms.

At any rate, if he has genetic potential to develop celiac disease but currently tests negative I would have the testing repeated at regular intervals. Some expert feel that NCGS can be a precursor to the development of celiac down the road.

Edited November 12, 2022 by trents

[knitty kitty]

@paxmom,

Here's an article from National Institute of Health that says positive DGP tests in children two and under are an accurate diagnosis of Celiac Disease.  Children this young haven't quite developed their immune systems and don't have a Ttg immune response yet.

"The correct way Celiac Disease diagnosis passes through DGP IgG levels in children"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9275736/

Hope this helps!  All first degree relatives should be tested for Celiac, too, since it's genetic.  It's easier to have the whole household gluten free.

[paxmom]

Thank you both so much, this info has been so helpful. I am considering going gluten free even if his biopsy is negative in case he may have the NCGS. I’ll update after we get the results if that’s helpful for anyone else. Thanks again! 

[trents]

If you are interested in getting him genetically tested for celiac disease potential you can get that done through third party home kit suppliers like 123 and Me.

[paxmom]

Update: We found out a few days ago that his biopsies showed no evidence of celiac disease. Definitely feeling thankful that there was no damage but confused by those blood results as well. We’re planning to redo the labs in a couple months at his follow up with GI as well as running the genetic test.

 

Im so thankful that he had healthy biopsy results but wondering what else could cause positive results on the celiac screening or what those results could mean? 

[trents]

I still would not rule out celiac disease. Young children often just do not exhibit the same physiological response to gluten even though they do have celiac disease. I certainly would trial a gluten free diet at this point. If his symptoms improve you have your answer.