Osteoporosis In 12 Year Old!

[greengirl]

My daughter has just been diagnosed with osteoporosis at age 12! I'm kind of in shock, although it makes sense - with her celiac (just discovered this year) and milk allergy (also discovered this year) she probably has not been absorbing calcium/vit. D at all. She is also very underweight (again, probably malabsorption) and below the 5th percentile for height. And she's broken her arm(s) 3x.

We are so worried about her as she has not had a major growth or weight increase since going gluten free in March and dairy free in the summer. She is feeling much better, though, so we do know the diet is helping. I guess, our concern is regarding what doctor to take her to, to monitor her growth and to decide the course of action for the osteoporosis.

The pediatric endocrinologist that we saw is very focused on a growth hormone issue which I doubt is the case - I think since that is his specialty, that's what he focuses on. He just wants to put her through more growth hormone tests before addressing the osteoporosis. And he's very condescending - I don't think we'll be going back.

Her celiac doctor doesn't even really believe that she is celiac (despite her DQ1 and DQ2 genes and the amazing results of the diet) because his own blood test and biopsy were negative (both done after having been gluten free for 5 months!) He questions the Enterolab results because,"he's never seen anyone with a negative result." (I responded why would he? If it was negative they wouldn't be coming to see him!) He also said that if she did have celiac we would have seen a huge growth spurt by now after being gluten-free. So far, though, he's been wrong about everything - he didn't believe the enterolab result that she was casein intolerant because his own test showed no milk allergy, but later the milk allergy was confirmed by a pediatric allergist. Personally, I am forever grateful to Enterolab for pinpointing her (and my) problem. Without their test, we never would have found out about her underlying osteoporosis, let alone the gluten or casein intolerance.

Anyway, this doctor is recommending an adult endocrinologist specializing in malabsorption/bone issues who is taking a week (so far) to decide whether he'll see my daughter since he usually doesn't treat children.

I feel like we're just getting lost in the shuffle. And since these are the so-called "specialists" from top research hospitals in Chicago, I really don't know where to go next. I feel like we would get better care at a less busy, local doctors office. But, on the other hand, I don't want to gamble with my daughter's health -she is at a critical growth period right now.

Any advice on who to see (in general or specific to Chicago area) and if osteoporosis medication is necessary at her age, or whether weight resistant exercises, calcium/vit. D supplements and the Gluten-free Casein-free diet is enough for her would be greatly appreciated. Even just touching base with other parents of children w/ gluten intolerance and osteoporosis would be reassuring right now. I feel like we're the only ones and no one (doctors) know what to do with us!

Christine

[beaglemania]

I was in exactly the same situation as your daughter. I was diagnosed with osteoporosis at age 12 too. I am now 14. I've been on the Celiac Disease diet currently for about a year-and-a-half. Some of the docotrs are really bad. They could not figure out why I had Celiac Disease until FINALLY we went to a special research children's bone clinic in Ohio. We had to travel across country just to find out I had Celiac Disease! I was tested for a number of problems including Celiac and I tested positive. I've been doing great now though. You should probably consider some kind of drug for your daughter. I've been taking monthly infusions for over a year. Its this drug called pymidronate (i think that's how you spell it) I have been doing so well since taking this drug!! I am in the osteopinia range now! I have now been upgraded to a monthly pill instead of infusions. I take Boniva.

I hope this makes a little sense. Sometimes I'm not very organized. Losts of details in my case. If you need and questions of anything email me. I could have my mom fill you in on more details, since I know some, but not a lot about everything with the doctors and such. Please email me if you have any questions, or need advice about what to do with your daughter. I'll have my mom reply. My emails horsegal1139@bellsouth.net

[ella]

Hi Christine -

I'm sorry about the difficulties you've been having. I have little knowledge about the osteoporosis aspect of things, but I am from the Chicago area and would love to swap doctor names and stories with you. My daughter has had issues for a year, we've been to three peds gi docs and another peds infectious disease specialist. (She started this whole thing with c diff).

To make a long story short, we've been to Rush, Comer, and our doc in the burbs. I've been really frustrated about different aspects of each of the docs we've seen, and I wish we could combine all of their best qualities to get "the perfect doc."

Although I'm not entirely happy with where we are now, my daughter is having a colonoscopy and EGD on Wednesday. After that we are going gluten free.

I'd be happy to share in detail what our various docs have said and I'd love to hear what you have liked or not liked about the ones you've seen as well. Email (lmrichard@hotmail.com) or pm if you want.

Ella