Help needed - What to do next? Ped recommendation?

[Guest guest]

I have Celiac and recently began talking to my son's pediatrician more about

getting him tested b/c he has started showing growth problems and digestive

issues. He had the blood antibodies test done when he was 18 mos and the results

were fine at that time. That was six months ago, but then he started having

these other issues so I asked if we should consider looking at Celiac again.

Anyway, we did the gene test and he tested positive for the HLA allele, and is

homozygous for the DQB1*02 allele. I totally understand that just because he

tested positive for the gene doesn't mean he will develop celiac so I'm not

assuming he has it now.

My dilemma is that I'm not sure where to go from here. My pediatrician will

want to go ahead and do a biopsy now since he's having other issues which I

think makes sense. The thing is, if the biopsy comes back negative, do I just

monitor him closely for the rest of his life to watch for obvious celiac

symptoms and then get him retested? Should I do yearly antibody testing? Aren't

there a lot of people with Celiac that don't show obvious outward symptoms but

are still experiencing internal issues?

I love my pediatrician but I don't think she's all that in the know about Celiac

disease, so I'm also looking for any recommendations for good Pediatrician

should we need one.

Sorry for the long post - I'm just trying to make sense of this all and I don't

want my son to suffer like I did for so many years if he doesn't have too.

ps: Some may say why not just have him go gluten free without the diagnosis, but

that's not an option we are considering. I would want the diagnosis before

putting him on something so restrictive for life.