Results for 7 year old

[Lauren0204]

Hi there,

My 7 year old son just got blood work back from his pediatrician and although I'm certain he must have Celiacs she wasn't so sure. He won't see a pediatric GI for another two weeks but I was curious if these results were common outside of a celiac disease diagnosis? Thanks! 

 

Transglutaminase IgA 
Your Value <1 U/mL
Standard Range <15.0 U/mL
NEGATIVE

Gliadin Deamidated IgA
Your Value 34 U/mL
Standard Value <15.0 U/mL
Flag: High
POSITIVE

 

[trents]

Welcome to the forum, Lauren0204!

The tTG-IGA is considered to be the centerpiece of celiac antibody testing. That one is negative. But with children, whose immune systems are not fully developed, it will be negative even when they have celiac disease. That is the value of running additional antibody tests as was done for your son. His positive Gliadin Deamidated IgA suggests he does have celiac disease. We often see this same pattern here on the forum when pediatric test results are posted.

There are other antibody tests that can be run in addition to the two that were run. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is also common for the tTG-IGA to be negative when the total serum IGA is low. I wish that value had been tested and reported for your son. The pediatric GI doc may want to order a more complete celiac antibody panel but he/she may also want to do an endoscopy/biopsy to check or damage to the villi that line the small bowel. In the meantime, it is important to make sure your son eats regular amounts of gluten. Otherwise, the test results may be invalid.

Unfortunately, many family physicians are not well-versed on gluten related disorders such as celiac disease and NCGS (Non Celiac Gluten Sensitivity) and many older GI docs are not much better. There has been a tremendous amount of research and discovery done concerning gluten related disorders since they were in med school. Because of that, as a parent you must do your own research and be armed with information when you go to appointments. Be prepared to be appropriately assertive in order to get thorough testing done.

[Lauren0204]

2 hours ago, trents said:

Welcome to the forum, Lauren0204!

The tTG-IGA is considered to be the centerpiece of celiac antibody testing. That one is negative. But with children, whose immune systems are not fully developed, it will be negative even when they have celiac disease. That is the value of running additional antibody tests as was done for your son. His positive Gliadin Deamidated IgA suggests he does have celiac disease. We often see this same pattern here on the forum when pediatric test results are posted.

There are other antibody tests that can be run in addition to the two that were run. Here is a primer: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

It is also common for the tTG-IGA to be negative when the total serum IGA is low. I wish that value had been tested and reported for your son. The pediatric GI doc may want to order a more complete celiac antibody panel but he/she may also want to do an endoscopy/biopsy to check or damage to the villi that line the small bowel. In the meantime, it is important to make sure your son eats regular amounts of gluten. Otherwise, the test results may be invalid.

Unfortunately, many family physicians are not well-versed on gluten related disorders such as celiac disease and NCGS (Non Celiac Gluten Sensitivity) and many older GI docs are not much better. There has been a tremendous amount of research and discovery done concerning gluten related disorders since they were in med school. Because of that, as a parent you must do your own research and be armed with information when you go to appointments. Be prepared to be appropriately assertive in order to get thorough testing done.

Thanks so much for the response, so very informative much more so than the doctor was. They tried to tell me to just put my child on miralax for constipation and that would solve his severe stomach pain, even though he's never been constipated. I had to push for the blood work, so I assume I'll have to continue to advocate for him until I can get a straight answer. 

[trents]

Let me correct something I said here: "The tTG-IGA is considered to be the centerpiece of celiac antibody testing. That one is negative. But with children, whose immune systems are not fully developed, it will may be negative even when they have celiac disease." 

If your pediatric GI doc wants to do an endoscopy with biopsy, ask about how many samples he takes and from where. We frequently have posters on the forum whose doctors only took a couple of samples and declared there was no damage to the villi. But a second, more thorough biopsy was performed by another doc who found damage. The damage can be patchy and easily missed in the early stages of the disease. We would recommend like four samples each from the duodenum and the duodenum bulb. You would not want to have to unnecessarily repeat the procedure.

Edited June 13, 2022 by trents

[trents]

By the way, what are your son's symptoms? What led to this investigation of celiac disease?

[Lauren0204]

6 minutes ago, trents said:

By the way, what are your son's symptoms? What led to this investigation of celiac disease?

He was having severe stomach pains on and off for several weeks and we couldn't find a reason. But now with the possibility of it being caused by celiac disease the more I research the more I understand he could have been showing symptoms for much longer (headaches, allergies, eczema, enamel spots on his new adult teeth etc. ) than just a few weeks. 

[Lauren0204]

I such add too that he lost 5lbs in less than 2months,which was very alarming as well bc he's already a tall skinny child so it was very noticeable. 

[trents]

Someday, you son will be very grateful that his mom (parents?) got on top of this at an early stage of his life. Most of us suffered with it for many years before ever getting diagnosed and by the time we were diagnosed there was damage to body systems that could not be reversed, mainly due to the nutritional deficiencies from malabsorption that celiac disease produces. Ruined teeth, stunted growth, osteopenia/osteoporosis, neurological damage, etc. 

Keep us posted.

[Lauren0204]

Just now, trents said:

Someday, you son will be very grateful that his mom (parents?) got on top of this at an early stage of his life. Most of us suffered with it for many years before ever getting diagnosed and by the time we were diagnosed there was damage to body systems that could not be reversed, mainly due to the nutritional deficiencies from malabsorption that celiac disease produces. Ruined teeth, stunted growth, osteopenia/osteoporosis, neurological damage, etc. 

Keep us posted.

Thanks so much for the kind words. Yes I'm determined to get a diagnosis so no more damage is done. 

[C4Celiac]

keep him away from Dairy 

[Lauren0204]

2 hours ago, C4Celiac said:

keep him away from Dairy 

Why is that? 

[trents]

2 hours ago, Lauren0204 said:

Why is that? 

Lauren, in the celiac population there is a tendency to develop intolerance to some other foods that do not contain gluten. Chief among them are dairy products but also oats and egg intolerance are not uncommon. It may be because of the damage to the small bowel villi or because the proteins found in these other foods mimic the effect of gluten in some people. With dairy there is lactose (the sugar in milk) but also a possibility that the protein casein is the culprit. Research has shown that casein can blunt SB villi like gluten does in some people.

Keep in mind that celiac disease is at heart an immune disorder where the body mistakenly reacts to gluten as an invader. Over time, especially when celiac disease goes undiagnosed and unheeded, the immune system tends to become more dysfunctional so as to include other food proteins in it's list of false invaders. 

Personally, I would not worry about anything but gluten to begin with if it turns out your son does indeed have celiac disease. Chances are he won't have issues with other foods but it's just something to keep in mind if, over a period of weeks and months, he doesn't show much improvement after withdrawing gluten.

[C4Celiac]

because there's cases of children reacting to dairy the same as with gluten... 

and ya maybe lactose intolerance too until healed.