2.5 years old 1,5 yearof testing accurate blood tests and symptoms

[Papafma]

Hi everyone,

you may have read my previous post .My 2.5 years old son was diagnosed with milk protein allergy when he was 3 months.He had silent reflux.Currently he was diagnosed with peanut and soja allergy.When he was 1 years old his blood tests showed elevated liver enzymes.We repeated the tests 4-5 times and were still elevated.Also his lipase.He never had well shaped poop but always mussy and he has steatorrhea( fatty stools)He is growing normal,he eats well( actually i think he is always hungry) He was tested negative for infections,autoimmune diseases,metabolic disorders,cystic fibrosis.

He tested him for celiac

Anti-transglutaminase iga and Anti-gliadine IgG-came back negative.
first ultrasound showed fatty liver second ultrasound normal.

today we had an appointment with an gastroenterologist specialised to liver diseases and we did some genetic tests(including celiac)He is sure that he doesn’t have celiac because of negative serum tests!!!!I ve asked him how accurate the tests are( its not even the full panel) and he told me there is no way its celiac. I don’t know why but my instinct says it is celiac…maybe because i hope it is celiac and not something more serious 

[Scott Adams]

Did they do DGP-IgA and DGP-IgG (Deamidated Gliadin Peptide) Blood Tests for celiac disease? These tests should always be done in a celiac disease blood panel in children because their immune systems are not fully developed, and other tests may not be accurate.

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. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

Celiac disease does indeed cause liver issues in some people, and you are correct to eliminate this possibility. This section of Celiac.com includes articles about liver issues and celiac disease:
https://www.celiac.com/celiac-disease/celiac-disease-amp-related-diseases-and-disorders/liver-disease-and-celiac-disease/

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. I've not seen any studies on NCGS causing liver issues, but if you can't get further testing for celiac disease it certainly would not hurt to try a gluten-free diet for a few months and then have the liver enzymes re-checked.  

 

[Papafma]

Thank you for all information.They only tested him forAnti-transglutaminase iga and Anti-gliadine IgG-came back negative.

i really don’t understand how is possible in 2023 after 1.5 of testing that they are not able to give us an answer.
once we finish with the tests i will try him a gluten free diet.For now I don’t want as i dont know if they are going to run an endoscopy.My son consumes gluten but not daily.

How they can be sure its not celiac without do all necessary testing…