Bone Density Testing

[Indigosue]

Hi there! I'm new to this forum. My 6 year-old daughter was diagnosed with Celiac over the summer and we have been gluten-free (with a few cross contamination incidents) since August. At her recent check-in with her GI doctor they ordered a bone density screening (scheduled for January). The Doctor had never mentioned this before and honestly since we had all the testing and biopsy done in the summer and had met our insurance deductible it would have been helpful to have done the test earlier this year. This led me to look into how important the testing is. Since she is so young it did not seem like it would be needed now - but something in a few years we could test. I went to the University of Chicago Celiac Disease Center site and under one of the FAQ's it states a bone density test is not required for children if they have not had any problems with fractures (she has not). I, of course, want to and will do what is best for her but I want to make sure it is absolutely necessary. Does anybody have any experience with this - being that she was diagnosed as a child, not an adult who has been living with the disease undiagnosed for a long time. Thank you in advance!

[StephanieL]

They did a wrist bone x-ray on my 4 yo when he was first dx.  Because he was still growing they believe he'll be fine and haven't done any follow up bone testing.

[nmlove]

I have heard both for the test and it isn't necessary from the doctors. My oldest had it done around the same age. The doctor said he likes to make sure they have time to play catchup before puberty. My son never had fractures, broken bones, etc. and it was found he had ostopenia! The endo wasn't overly concerned as he had celiac and was still healing get but my son did have to increase supplements. We have since moved and the new gi doc didn't feel it was necessary to retest.

[cyclinglady]

1 hour ago, nmlove said:

I have heard both for the test and it isn't necessary from the doctors. My oldest had it done around the same age. The doctor said he likes to make sure they have time to play catchup before puberty. My son never had fractures, broken bones, etc. and it was found he had ostopenia! The endo wasn't overly concerned as he had celiac and was still healing get but my son did have to increase supplements. We have since moved and the new gi doc didn't feel it was necessary to retest.

As a mom and a celiac who has osteoporosis and fractures, I would not worry about new bone scans as long as your son is diet compliant.  You should insist on a complete celiac blood test each year to insure he is adhering to the diet.  Once he hits the teen years this is critical.  My daughter, a teen,  has friend who has celiac.  She's ended up getting really sick just trying to "fit" in.  She strayed from her diet much to her doctor's and parent's dismay.  She had to drop out of marching band because she was passing out!  

Personally, I am holding my own without drugs or supplements and I am post-menopausal.  I expect a child, once healed, will be able to build bone very easily.  Just make sure he remains gluten free!  

 

[nmlove]

6 minutes ago, cyclinglady said:

As a mom and a celiac who has osteoporosis and fractures, I would not worry about new bone scans as long as your son is diet compliant.  You should insist on a complete celiac blood test each year to insure he is adhering to the diet.  Once he hits the teen years this is critical.  My daughter, a teen,  has friend who has celiac.  She's ended up getting really sick just trying to "fit" in.  She strayed from her diet much to her doctor's and parent's dismay.  She had to drop out of marching band because she was passing out!  

Personally, I am holding my own without drugs or supplements and I am post-menopausal.  I expect a child, once healed, will be able to build bone very easily.  Just make sure he remains gluten free!

 

That's great! As I said the endo at the time wasn't overly concerned. He is my one who struggles with keeping up vitamin wise but it could very well be trying to play catch up and all his growth spurts. I hope my son stays on track. I have a good feeling he will. If anything, he tends to worry more about it affecting him than of what others think. And now with T1D, it just adds to it all. Now, one of my children may be more likely to rebel but I hope not!

(I am not sure I did the quote right. On my phone and it doesn't seem right.)