Confused on sons ttg iga test

[Sma1220]

So my son has been having issues with diarrhea, bloating, gas and more. He was tested for alot. He is positive for inflammation in his digestive system. Borderline anemic on certain test. One test shows positive for possible autoimmune disease. His actual iga test I believe was normal! But this ttg/iga test is confusing. The highlight things in orange when it’s flagged and it was highlighted in orange. Normal range says 0-3 and his was <2 and below zero on the scale so I’m super confused on what this means! Any help would be very much appreciated. 

[trents]

Welcome to the forum Sma1220!

How old is your son? The tTG-IGA is not reliable for children and sometimes not for teens as the response of an immature immune system is often different. Were any other celiac antibody tests run?

[Sma1220]

He is 4 years old. The confusing part is it says like negative 2 and is flagged so I was confused. There weren’t any other test because this is just the start. My son’s pediatrician sent a referral for a gi specialist so I’m waiting for that. They are concerned of a autoimmune disease like celiac or ibd. His ESR was positive and a fecal test for inflammation was positive. I guess what’s driving me crazy that if it’s negative 2 why was it flagged like that. Or why would it be below 0. 

[trents]

My guess would be it was flagged because the tTG-IGA is not reliable for children his age, especially in view of the fact that he has classic symptoms for celiac disease. Other antibody tests could have and should have been run, including total IGA, IGG and DGP antibody tests. Here is a primer for celiac disease antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ There is also testing via an endoscopy with biopsy of the small bowel lining to check for damage to the villi that line the small bowel lining produced by the inflammation inherent in celiac disease of that section of the digestive track.

It's important not to withdraw gluten from your son's diet until all testing is complete.

Edited March 24, 2023 by trents

[Sma1220]

24 minutes ago, trents said:

My guess would be it was flagged because the tTG-IGA is not reliable for children his age, especially in view of the fact that he has classic symptoms for celiac disease. Other antibody tests could have and should have been run, including total IGA, IGG and DGP antibody tests. Here is a primer for celiac disease antibody testing: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ There is also testing via an endoscopy with biopsy of the small bowel lining to check for damage to the villi that line the small bowel lining produced by the inflammation inherent in celiac disease of that section of the digestive track.

It's important not to withdraw gluten from your son's diet until all testing is complete.

Yes because it doesn’t make sense. My son is on the spectrum so I guess they were more concerned about IBD. His doctor should be back tomorrow so hopefully she will give me a plan of what’s next. He was fine before almost 2 months ago and he’s gotten in the mood to just eat so much bread… that’s when the issues occurred. I just hope to figure it all out so I can do what’s needed to better his situation. Thank you so much for your insight it definitely calmed down the confusion of what in the world the test meant. Maybe she will order more test since it has seemed to come back inconclusive.

[trents]

I should explain that many doctors are behind the curve when it comes to diagnosing celiac disease. It's better than it was 20 years ago when I was diagnosed but the dearth of knowledge about celiac disease, especially among non GI docs, is still surprising. It took 13 years for me to get diagnosed. By that time, much irreversible damage had been done to my body. Most of the regulars on this forum would advise you to not trust your GP or pediatrician to know what they should know about celiac disease and to go armed with knowledge to appointments and to be prepared to be respectfully assertive to get thorough testing done.

[Sma1220]

2 minutes ago, trents said:

I should explain that many doctors are behind the curve when it comes to diagnosing celiac disease. It's better than it was 20 years ago when I was diagnosed but the dearth of knowledge about celiac disease, especially among non GI docs, is still surprising. It took 13 years for me to get diagnosed. By that time, much irreversible damage had been done to my body. Most of the regulars on this forum would advise you to not trust your GP or pediatrician to know what they should know about celiac disease and to go armed with knowledge to appointments and to be prepared to be respectfully assertive to get thorough testing done.

Yes I am and luckily his pediatrician will be willing to do anything I request and ask. She did tell me that even if the test was negative she isn’t ruling it out. She said since he’s so young and also sadly these are insurances requests in order of her to run more test. She’s the only doctor I’ve trusted. I told one doctor my son was having diarrhea and sometimes he doesn’t go number 2 for an entire day and he disregarded me. His normal doctor said well he has inflammation detected in his stool test that is diarrhea. This lab has been so confusing because they also told me my son is an asymptomatic carrier of E. coli but that’s not what’s causing his diarrhea. I was like well what does that even mean? The doctor is digging into it. She stood behind me with his autism diagnosis and everything. Luckily she’s a great doctor and if I advocate for my son she definitely will listen. So what test should I ask her for? 

[trents]

I would ask for:

1. Total IGA

2. Repeat tTG-IGA

3. EMA (You might get push back on this one as it is an expensive test but is very specific for celiac disease.)

4. DGP IgA and IgGd (These are not as specific for celiac disease as the others but are helpful when dealing with atypical immune system responses.)

Be firm about 1. , 2. and 4. They are relatively inexpensive tests.

There is also the possibility that he has NCGS (Non Celiac Gluten Sensitivity). It shares many of the same symptoms with celiac disease but does not damage the villi of the small bowel. It is 10x more common than celiac disease but there is no test for it. celiac disease must first be ruled out. Same antidote, however, and that is complete avoidance of gluten.

Edited March 24, 2023 by trents

[trents]

Typo: I typed Igpd but meant to type Igp. Refer to the link I supplied above for more complete names as I have used the acronyms.

[Wheatwacked]

The normal results are 0-3. -2 is out of range so was flagged.

3 hours ago, Sma1220 said:

ttg/iga test

When my son was diagnosed as an infant when he was weaned, he was put on Nutramagen for six months. It was the only hypoallergenic formula with choline. That was in 1976.

Swimming is a great sport for him. Mine was on swim teams from 5 till high school. Now works Ocean Lifeguard.

Check out Dr Amen, he has good success with improving autism with gluten free diet.