Wait time for biopsy - teen with growth failure

[CarolineJ]

New here and finding this site helpful, so first of all my thanks to those who post here.

My 13 y/o son had a TTG IgA of 48.8 but where I live (Toronto, Canada) the wait time for pediatric GI specialists is long so I have no idea how long it will take to get a biopsy. His paediatrician and his pediatric endocrinologist are both pretty confident he will get a Celiac diagnosis based on his growth issues which are otherwise unexplained. The problem is we are in a race against time. His bone age shows his growth plates are nearly fused which means he has very little runway left to catch up. They could consider hormone based therapy to delay or extend puberty and give him more time to grow but that’s not standard of care. They won’t entertain it without the formal Dx and we can’t start the gluten-free diet so we are just wasting very valuable and very limited time. The poor kid left the endo’s office in tears today. He was always such a happy, confident kid and his self esteem has taken such a hit. It’s hard to watch. Any experience with growth delay and growth recovery for Celiac patients diagnosed in adolescence? 

[Fenrir]

I'm pretty sure I had Celiac Disease my whole life. I was diagnosed at 37. I was always very small for my age, either the shortest or close to the shortest kid in the class (even girls were bigger most of the time). I ended up being 5'5 (166cm, I believe), that's short when I come from a family of guys mostly 6'2 (188cm) or bigger. The average height for celiac males is about 168cm if diagnosed after 18 years of age.

Turns out recent research shows that celiacs are significantly shorter than normal on average. Actually, males are more affected seeing the biggest difference between celiacs and non-celiac males. 

It's probably socially harder for boys than girls if they're short. I know it was difficult dating as a teen and even into adulthood when you're shorter than the average girl. Other boys didn't respect me as much as normal sized boys either unless but I was small and feisty so that didn't last so long for me. Smaller boys tend to be targeted by bullying more too. 

It isn't the end of the world though, I did become a very good wrestler and abnormally strong for my size. Even being as small as I was I was very athletic and did well in sports. I was one of the top students and by time I got out of high school I had a lot of friends. I got married, had a child and have a good career. 

However, when you're a teen it's very difficult when you standout out for being small. 

As far as how to go forward:
 

Here in the US the wait typically is not more than a month in most areas to get an EGD. Not sure where you are in Canada or if it's financially feasible to have it done in the US but it would probably be faster. On the other hand, if you have a positive Antibody test you could try gluten-free diet and see if he improves. However, like you mentioned in the Canadian health care system you may not be able to get further needed treatments without an official diagnosis. 

Edited March 9, 2020 by Fenrir

[CarolineJ]

Thank you. This is helpful perspective. My son is athletic too and otherwise healthy. He plays competitive hockey and rep soccer so the good news is it’s not impacting his lifestyle too dramatically but growth and energy level are making it harder to compete now so this all makes sense. My main concern is how little time he has left for growth recovery based on the bone scan so I want to get this moving ASAP.  He’s very sensitive about his size and getting picked on so everything you wrote resonates.

We’d make it happen if we had to have the biopsy done in the US, we live in Toronto so it’s less than an hour flight to Boston, NY etc. I just spoke to a pediatrician here who suggested we see a regular gastroenterologist vs. pediatric because this procedure in a 13 y/o isn’t all that specialized compared to a very small child who probably should see a peds specialist. They’re just looking for flattened villi. That gives me a few more names to chase down locally, GIs who he said would be comfortable scoping a teenager with an adult scope. 

[Fenrir]

Yeah, most doctors wouldn't have an issue doing one on a teen I think, that's a good place to start.