Please help us decide: does our 3 year old little need an endoscopy?

[solarus]

Hoping to get some advice from this amazing community. Our 3 year old had not been growing well <10% for weight, less than 20% height even though we were both tall. He has also had eczema. Our GI ran a panel and we got the following results:

TTg IGA -18 (normal 0-3) - so 6x upper limit

EMA: positive

Tested homozygous for HLA DQB1*02, (which my understanding is the highest genetic risk config)

The doctor is suggesting an endoscopy next, but we are conflicted. It seems like if the endoscopy is positive, we'll do GFD. If the endoscopy is negative... with the positive blood work above, we'll still do GFD. So it looks GFD either way. Do we really need to put the poor thing through this? 

We are worried about traumatizing him further, as he is now very scared of going to the hospital particularly after the last blood draw  We would be so very grateful for any thoughts or advice!

 

[trents]

My understanding is that the EMA is the most specific antibody test for celiac disease but also the least sensitive. Which means, when that one is positive it's pretty definitive for celiac disease. If it were my kid, I wold skip the endoscopy and trial a gluten free diet. If he improves, you have your answer.

https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/:

"The EMA test has a specificity of almost 100%, making it the most specific test for celiac disease, although it is not as sensitive as the tTG-IgA test. About 5-10% of people with celiac disease do not have a positive EMA test. It is also very expensive in comparison to the tTG-IgA and requires the use of primate esophagus or human umbilical cord. It is usually reserved for difficult to diagnose patients."

[RMJ]

It sounds like you know what you plan to do.  Sometimes endoscopy results (if positive) can help to convince OTHER people that your child needs to be gluten free. But that may not be a good enough reason to put your child through it.

[Scott Adams]

In Europe they routinely diagnose celiac disease without biopsy at 10x over a positive TtG level, but I agree with @trents and think you just have him go gluten-free, but be sure to discuss this with your doctor. The problem with a biopsy at that age is that it may be negative, and then you'll still not be sure about his diagnosis. 

[trents]

Yes, agree with Scott. Young children with celiac disease often don't have damaged villi yet. There bodies are so resilient.