10 Year Old With Osteoporosis

[researchmomma]

I was here a few years back when I was trying to get testing for my daughter and you all were very helpful.  Especially Irish Heart and a few others and I am still very grateful for their help.  The GI did a gene test to rule out Celiac because of her GI issues with a negative Celiac blood panel.  She does not carry the DQ2 or DQ8 genes.  She was diagnosed as Non-Celiac Gluten Intolerance after we removed gluten even though the GI said there was no reason to go gluten-free.  The transformation when she went gluten-free was simply amazing and the GI was shocked so she gave her that diagnosis.  However, she cheats now and then because she isn't Celiac (we get to suffer with her bad moods because she feels lousy).  

 

I have a son who has been having GI issues and frequent non-traumatic fractures (6 in arm and 1 in his heel).  His Celiac blood work was negative (full panel) but his DEXA came back as 3 STD below normal which is Osteoporosis. He is low in Vit D but not critcally and all other blood work seems fine.

 

He is being tested for Osteogenesis Imperfecta Type V (types I-IV were ruled out by gene testing).  I have a feeling this will come back negative.

 

If that test comes back as negative, I want the GI to do an EGD (without gene testing) because one of the clinical reasons to do an EGD when a Celiac blood panel is negative, is unexplained osteoporosis.  This will be a battle since the GIs at Children's (where we have to go for insurance reasons) really rely on the blood panels (they do run a full blood panel).  

 

My question is this: is there anyone on this forum that had a similar situation with their child? I would love to be able to give the GI some examples of kids with negative blood work but diagnosed osteoporosis and then had positive biopsy for celiac disease.  Shooting for the moon, I am sure.   

 

We had planned to make my son gluten-free in Janaury regardless but now that he has been testing negative for Osteogenesis Imperfecta, I want to get that EGD to help rule out Celiac first.

 

Thank you in advance for your help.

 

 

 

 

[SMRI]

Have they ruled out other causes as well?  I know most go right to Celiac when there are GI issues involved but there are other conditions that could cause this.  Does he have any other symptoms--joint pain??  Have they tested him (and your daughter) for Cushings?

[Fimac]

My oldest had low bone density growing up which had no known cause. He responded to calcium supplements and vit D. The vitamin D supplement had to be quite high to get him to absorb the calcium. He was tested for celiac when he was 12 with a biopsy, which came back negative although he had been on a low gluten diet , which although we did try to give him more gluten may not have been enough. His blood test at that time was negative although in the past he had a positive with the IGG test. 

He did test positive when he turned 16 so I suspect that he has a problem with absorption but not enough damage to get a positive test when he was younger. His younger brother is celiac so there is limited gluten in the house. 

[MitziG]

Curious to see what you find out. He certainly can have a negative panel and still be celiac. I would push for an endoscopy.

[researchmomma]

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.

 

I will keep you posted.

[cyclinglady]

Thanks! Please do keep us posted.

[squirmingitch]

Here is what the U of Chicago Celiac Disease Center (1 of the leading celiac centers) says about the gluten challenge for endoscopy:

Open Original Shared Link

 

"Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten."

[cyclinglady]

I think your Endo is wrong. Just guessing that because your son is tall, he can not have celiac disease. Is this guy still in the dark ages? My friend is tall and slender and has celiac disease! Some folks are over weight and they have celiac disease. BTW, my Vitamin D levels were normal at my diagnosis. Everyone presents differently!

[researchmomma]

Cyclinglady, I have to agree with you completely.

 

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.

 

Thank you!

[researchmomma]

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.

[RMJ]

 He has low vit D levels but normal calcium so that has confounded things with other physicians.

 

The body tries very hard to maintain calcium levels within the proper range - it does this by removing calcium from the bones if necessary. Normal calcium blood levels with low calcium in bones (osteoporosis) is explainable.

[researchmomma]

My sons biopsy came back normal.  I don't have any other info but I will meet with the doctor next week to discuss other reasons for osteoporosis.