I just found this and it oddly gave me hope that he may have celiac disease:
Low Bone Mass and celiac disease Individuals with bone mineral density more than 2.5 standard deviations below the sexspecific peak bone mass are presumed to have osteoporosis. Low bone mass is common in subjects with newly diagnosed celiac disease. The mechanism for this effect may be due to malabsorption of vitamin D and calcium and decreased intake of calcium due to lactose intolerance. However, low bone mass may be due not only to osteoporosis but also to osteomalacia. While osteomalacia would therefore be expected to be the bone consequence of malabsorption, osteoporosis been described in celiac disease on bone biopsy. A raised alkaline phosphatase and other stigmata of osteomalacia may not always be present. It is possible that low bone mass is the only manifestation of celiac disease in a significant proportion of patients with this disorder and consequently, celiac disease may be an underdiagnosed cause of low bone mass in the general population. There are two ways in which the epidemiology of celiac disease and osteoporosis has been examined. The first is the screening of patients with osteoporosis for celiac disease. A limited number of screening studies for celiac disease among patients with low bone mass have been performed in Europe. celiac disease was found in 3.4 percent of adults with low bone mass. One Scandinavian study screened a pediatric population with low bone density and demonstrated a 5 percent prevalence of celiac disease. However, a carefully performed Canadian study in predominantly postmenopausal women with osteoporosis has not identified an increased prevalence of celiac disease. Why the difference? The early studies were predominantly based in serology alone without biopsy confirmation. It is also not clear if referral bias may have been factor. Our studies in a population-based setting have not identified an increased rate of celiac disease in over 290 patients with osteoporosis. Initial serological tests had a high rate of low-level positivity to tissue transglutaminase antibodies, however followup serological tests and biopsies only conformed celiac disease in 2/25 initially seropositive persons. This yielded an overall positive rate of only 2/290, which is close to the expected general population by screening but greater than that of the diagnosed rate.
Well the endo is now fully engaged since my sons dexa scan showed osteoporosis. It just seems that if he got osteo-p from Celiac he would have low calcium and vit D levels. He has low vit D levels but normal calcium so that has confounded things with other physicians.
Anyway, still waiting for the EGD to be scheduled.
I am praying for Celiac. For once, I would like the easy button. His sister is so clearly affected by gluten and I am betting he is too.
Just an update, all his tests for osteogenesis were negative but because he didn't have significantly low VitD and his is tall (albeit very thin), the endocrinologist didn't tihnk he could have Celiac.
My son's blood work was indeed negative but he also is on a 70% gluten-free diet because he sister is intolerant. There are days when he is gluten-free completely.
We contacted his GI to tell him we were going to put him on a gluten-free diet just to cover our bases and he wanted to see him first. He was very concerned that he has unexplained osteoporosis as a 10 year old. Honestly, it is the first time I have felt like someone was actually concerned. So he ordered an EGD and we are loading him with gluten. The GI wants to do it soon but I would like him to be eating a lot of gluten for at least 2 months before he has it.
I am praying this is celiac disease because the other reasons for osteoporosis in a child aren't all that great and Celiacs with osteo-p that go on GFD reverse their low bone density within a few years. That is a much better outcome.