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Lorisue5

17 Year Old Distance Runner With Stress Fractures And Recent Diagnosis Of Celiac

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My daughter runs cross country and track.  In the last year she had a stress fracture in her left tibia and this year in her right femoral neck.  When I questioned the ortho. about why 2 in one year he sent us for further work ups.  At that first appointment they did a bone density scan and determined she had osteoporosis.  Many blood tests later they determined she had Celiac and Sjogren's.  Her MD recommended she go gluten-free and see if she felt any better.  She didn't feel bad to start with, just had the osteo.  She also has fatigue, acne and muscle soreness, but these are all fairly normal for a teenage runner.  I know celiac can cause osteoporosis, but all of her vitamin and mineral levels were normal and her iron was a little high.  Vitamin D and calcium were on the low normal side.  No endoscopy.  Is it possible for osteoporosis to be her only symptoms/sign?

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Yes!! My eleven year old daughter was diagnosed in April, and osteoporosis was the reason. By age ten, she had fractured her arms 6 times (4 upper humerus, 2 wrist). I still don't understand why her blood calcium and vitamin D levels have always been normal when her body was obviously not getting the calcium to her bones. That's a question I intend to really get into when we have her 6 month follow-up in October.

 

We are 4 months into the gluten-free diet, and it has made a huge difference. In hindsight, she probably had some mild GI symptoms that we weren't aware of. Her energy level is amazingly different (so much so that on a vacation our older daughter suggested giving her some gluten to wind her down - a joke obviously!). She gained 5 pounds in 3 months (and keeping weight on her was a problem before) and even though she has gained height, her feet are growing so I'm expecting her to spurt up soon! Is your daughter small? Do you know what her t-score (or z-score if she's considered pediatric) was on the DEXA scan? Is your daughter small in stature relative to family expecations? Did she have delayed puberty? How are her teeth?

 

This is an atypical (and perhaps very underlooked) presentation for Celiac in pediatric patients. Genetics, Endocrine, and Orthopedics at a major university hospital missed it in my daughter. It took a visit to Johns Hopkins for us to figure it out. The first hospital has now put it into their testing protocol when kids have frequent fractures. Consider yourself blessed that your orthopedic doctor didn't just blow you off, and found the Celiac after only (!) two fractures. And, since your daughter is a runner, count your blessings that she doesn't play lacrosse or something with more contact. My daughter is a dancer - otherwise who knows how many fractures she would have had!

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Yes!! My eleven year old daughter was diagnosed in April, and osteoporosis was the reason. By age ten, she had fractured her arms 6 times (4 upper humerus, 2 wrist). I still don't understand why her blood calcium and vitamin D levels have always been normal when her body was obviously not getting the calcium to her bones. That's a question I intend to really get into when we have her 6 month follow-up in October.

 

We are 4 months into the gluten-free diet, and it has made a huge difference. In hindsight, she probably had some mild GI symptoms that we weren't aware of. Her energy level is amazingly different (so much so that on a vacation our older daughter suggested giving her some gluten to wind her down - a joke obviously!). She gained 5 pounds in 3 months (and keeping weight on her was a problem before) and even though she has gained height, her feet are growing so I'm expecting her to spurt up soon! Is your daughter small? Do you know what her t-score (or z-score if she's considered pediatric) was on the DEXA scan? Is your daughter small in stature relative to family expecations? Did she have delayed puberty? How are her teeth?

 

This is an atypical (and perhaps very underlooked) presentation for Celiac in pediatric patients. Genetics, Endocrine, and Orthopedics at a major university hospital missed it in my daughter. It took a visit to Johns Hopkins for us to figure it out. The first hospital has now put it into their testing protocol when kids have frequent fractures. Consider yourself blessed that your orthopedic doctor didn't just blow you off, and found the Celiac after only (!) two fractures. And, since your daughter is a runner, count your blessings that she doesn't play lacrosse or something with more contact. My daughter is a dancer - otherwise who knows how many fractures she would have had!

Thank you for sharing.  That makes me feel tremendously better to know there is someone out there with a similar story, but I am sorry that your daughter and your family are having to go through this.  Her spine t-score was -2.8 and her hips were -1.5.  No teeth issues (yet).  She is smaller than everyone else in the family but only about an inch shorter than they predicted her to be.  She would love to have that inch. :)  I am also a PT and have some medical understanding of the calcium issue.  Calcium is a very important mineral in bodily functions and to maintain the correct balance the parathyroid gland goes into action and releases parathyroid hormone to pull calcium from the bones, thus causing the osteoporosis.  But I would expect to see fluctuations in calcium and parathyroid hormone if they did more frequent blood tests.  Trust me when I say everyone wanted to look at her and say osteoporosis, distance runner, teenage girl...she must be anorexic even though she is the opposite of what most runners look like.  She is not super skinny and I would know - I watch her eat all the time and her sister would tell on her.  So we were referred to a dietitian who determined she had no food issues but suggested the celiac test.  So back to the dr. and low and behold she was right.  I can't wait to share this with my daughter.  How long was it into the gluten free diet before she started to feel a change in her energy?

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Yes!  I'm recovering from a fractured vertebrae because of osteopenia resulting from celiac disease.  

 

Please extend my "Get Well" wishes to her.  I'm hoping to be back running and cycling soon!

Thank you so much for your kind reply.  She was off running for 3 months this time and just got to start last Monday.  Her mood is definitely improved!  Good luck and I hope you heal quickly.  It's going to be finding that balance of just enough and not too much for both of you.

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Thank you for sharing.  That makes me feel tremendously better to know there is someone out there with a similar story, but I am sorry that your daughter and your family are having to go through this.  Her spine t-score was -2.8 and her hips were -1.5.  No teeth issues (yet).  She is smaller than everyone else in the family but only about an inch shorter than they predicted her to be.  She would love to have that inch. :)  I am also a PT and have some medical understanding of the calcium issue.  Calcium is a very important mineral in bodily functions and to maintain the correct balance the parathyroid gland goes into action and releases parathyroid hormone to pull calcium from the bones, thus causing the osteoporosis.  But I would expect to see fluctuations in calcium and parathyroid hormone if they did more frequent blood tests.  Trust me when I say everyone wanted to look at her and say osteoporosis, distance runner, teenage girl...she must be anorexic even though she is the opposite of what most runners look like.  She is not super skinny and I would know - I watch her eat all the time and her sister would tell on her.  So we were referred to a dietitian who determined she had no food issues but suggested the celiac test.  So back to the dr. and low and behold she was right.  I can't wait to share this with my daughter.  How long was it into the gluten free diet before she started to feel a change in her energy?

Lorisue- You don't know how excited I was to hear of another osteoporosis-only case. Sorry that they're both going through it, but it's so good to hear that you found a reason relatively quickly. And I notice that's thanks to a dietician, not a doctor. :( We have z-scores (pediatric) for my daughter and hers were -3.4 spine and -2.8 hips. The DEXA was repeated the day she went gluten-free, and had only improved to -3.3 and -2.7 after 9 months of massive calcium and Vit D supplements - because obviously she wasn't absorbing what we were putting into her (and in fact had multiple high urine calcium numbers). We are anxiously awaiting the 6 month DEXA to see how much improvement she gets from the gluten-free diet. There is a lot of talk among the doctors about Bisphosphonate infusions since she is still a ways from puberty (due to a 2.5 year bone age delay caused by the celiac). We really want to avoid that, but understand that it's important to make this decision after the 6 month mark. I guess they want to improve her bone density before she goes through the pre-pubertal growth spurt which could be very fracture-prone with bone density that low. Fingers crossed that she shows enough improvement that we can avoid the infusions.

 

We noticed a difference in her energy level after probably 3 weeks on the gluten-free diet. She has always been a very restless sleeper but seems to be resting much better now. She noticed a difference in her poop within the first week. I guess it had always been pretty soft (and at least twice a day) but now is much firmer and less frequent. I have also had multiple people tell me that she doesn't look so frail anymore - I never knew others thought that, too. I just thought I worried too much! How long has your daughter been gluten-free? I know that it was a little hard for my daughter to accept at first since she hadn't had any apparent digestive issues. But after a month on the diet she (probably) got glutened and threw up. She has been very careful and watchful since then, and if she expresses the desire for something she can't have I remind her of that incident and she says "yeah, you're right". I thought that 11 was a hard age for diagnosis, but I'm sure that 17 is pretty rough, too. 

 

In terms of growth, I would guess that the Celiac is responsible for that inch your daughter is missing! Can you pinpoint when it might have started? A virus or other trauma? We are convinced this is lifelong for our daughter because her first fractures and teeth issues were at age 3. As an infant she was big (98th % in weight!) but steadily lost weight after going on solid food. Since then she has always been very petite, which was out of character for our family. Usual growth charts put her at maxing out at 5'1" or 5'2", but with the 2.5 year adjusted bone age, they say she is going to be 5'7" or 5'8". We've probably had a harder time wrapping our brains around that than anything because she's always been smaller than her older sister but will probably end up taller!

 

I am making it my mission to talk to any and every doctor who we've ever seen (or just who I happen to know!) to tell Lily's story. I even suggested Celiac last September to the Pediatric Endocrinologist who blew me off (one of her dance teachers has Celiac and suggested we look into it). I kick myself now that I didn't push that and that it took until April to get a diagnosis. I remember after 4 fractures (age 7)  talking to the orthopedic doctor about her frequent fractures and he gave me a song and dance about active kids, etc. At that point our pediatrician ran bloodwork but her Calcium and Vit D levels were normal so we dropped it. Fracture #5 (upper humerus) last year is what put me into action, especially when I discovered that humerus fractures only account for 5% of pediatric fractures (and she had broken both sides a total of 4 times). I fought my way and kept pushing and am so thankful that we did. Good for you for getting a diagnosis so quickly!

 

I hope some of this helps. I'll be eager to keep in touch and compare bone density improvements. This seems to be uncharted territory for all the doctors - they just don't know how soon we can expect the bone density to improve.

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Lorisue- You don't know how excited I was to hear of another osteoporosis-only case. Sorry that they're both going through it, but it's so good to hear that you found a reason relatively quickly. And I notice that's thanks to a dietician, not a doctor. :( We have z-scores (pediatric) for my daughter and hers were -3.4 spine and -2.8 hips. The DEXA was repeated the day she went gluten-free, and had only improved to -3.3 and -2.7 after 9 months of massive calcium and Vit D supplements - because obviously she wasn't absorbing what we were putting into her (and in fact had multiple high urine calcium numbers). We are anxiously awaiting the 6 month DEXA to see how much improvement she gets from the gluten-free diet. There is a lot of talk among the doctors about Bisphosphonate infusions since she is still a ways from puberty (due to a 2.5 year bone age delay caused by the celiac). We really want to avoid that, but understand that it's important to make this decision after the 6 month mark. I guess they want to improve her bone density before she goes through the pre-pubertal growth spurt which could be very fracture-prone with bone density that low. Fingers crossed that she shows enough improvement that we can avoid the infusions.

 

We noticed a difference in her energy level after probably 3 weeks on the gluten-free diet. She has always been a very restless sleeper but seems to be resting much better now. She noticed a difference in her poop within the first week. I guess it had always been pretty soft (and at least twice a day) but now is much firmer and less frequent. I have also had multiple people tell me that she doesn't look so frail anymore - I never knew others thought that, too. I just thought I worried too much! How long has your daughter been gluten-free? I know that it was a little hard for my daughter to accept at first since she hadn't had any apparent digestive issues. But after a month on the diet she (probably) got glutened and threw up. She has been very careful and watchful since then, and if she expresses the desire for something she can't have I remind her of that incident and she says "yeah, you're right". I thought that 11 was a hard age for diagnosis, but I'm sure that 17 is pretty rough, too. 

 

In terms of growth, I would guess that the Celiac is responsible for that inch your daughter is missing! Can you pinpoint when it might have started? A virus or other trauma? We are convinced this is lifelong for our daughter because her first fractures and teeth issues were at age 3. As an infant she was big (98th % in weight!) but steadily lost weight after going on solid food. Since then she has always been very petite, which was out of character for our family. Usual growth charts put her at maxing out at 5'1" or 5'2", but with the 2.5 year adjusted bone age, they say she is going to be 5'7" or 5'8". We've probably had a harder time wrapping our brains around that than anything because she's always been smaller than her older sister but will probably end up taller!

 

I am making it my mission to talk to any and every doctor who we've ever seen (or just who I happen to know!) to tell Lily's story. I even suggested Celiac last September to the Pediatric Endocrinologist who blew me off (one of her dance teachers has Celiac and suggested we look into it). I kick myself now that I didn't push that and that it took until April to get a diagnosis. I remember after 4 fractures (age 7)  talking to the orthopedic doctor about her frequent fractures and he gave me a song and dance about active kids, etc. At that point our pediatrician ran bloodwork but her Calcium and Vit D levels were normal so we dropped it. Fracture #5 (upper humerus) last year is what put me into action, especially when I discovered that humerus fractures only account for 5% of pediatric fractures (and she had broken both sides a total of 4 times). I fought my way and kept pushing and am so thankful that we did. Good for you for getting a diagnosis so quickly!

 

I hope some of this helps. I'll be eager to keep in touch and compare bone density improvements. This seems to be uncharted territory for all the doctors - they just don't know how soon we can expect the bone density to improve.

They are not even planning at looking at it until a year because it takes quite a while for a measurable difference to show up.  They talked about Calcitonin, but her rheumatologist was not in favor of it due to not enough evidence that is helps bone density.  They have not talked about the biophosphates and I am unsure what the right thing would be to do in that situation.  Those are not studied on young people, so there is no reliable data to interpret.  However on the other end, as a PT I see a ton of people in there 30s with autoimmune related issues and back pain and they are pretty miserable.  I will pray she gets some good results on her next DEXA.  

 

Megan is going to be a senior this year and I am just thankful we found this out now and not next summer as she is getting ready to head out to college.  She has been gluten-free for 3 weeks and a couple days now and says she hasn't noticed anything.  I can't wait to share all your info with her!  Thanks again so very much!

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They are not even planning at looking at it until a year because it takes quite a while for a measurable difference to show up.  They talked about Calcitonin, but her rheumatologist was not in favor of it due to not enough evidence that is helps bone density.  They have not talked about the biophosphates and I am unsure what the right thing would be to do in that situation.  Those are not studied on young people, so there is no reliable data to interpret.  However on the other end, as a PT I see a ton of people in there 30s with autoimmune related issues and back pain and they are pretty miserable.  I will pray she gets some good results on her next DEXA.  

 

Megan is going to be a senior this year and I am just thankful we found this out now and not next summer as she is getting ready to head out to college.  She has been gluten-free for 3 weeks and a couple days now and says she hasn't noticed anything.  I can't wait to share all your info with her!  Thanks again so very much!

I think we're going with the 6 month DEXA check because of the looming pre-pubertal growth spurt issue. Actually, the recommendation to start bisphosphonate treatment is what sent us to Johns Hopkins. UVA was convinced she had Osteogenesis Imperfecta and talked us into the $3000 DNA test. The head of peds endocrinology kept insisting that we needed to do the infusions, but everything I read said only moderate to severe OI needs to be treated with bisphosphonates (and she would have been a mild case). So while we were waiting for the DNA test, we made an appointment with the director of the OI clinic at Hopkins to get his input on the treatments. Two days before we saw him we got the "normal" DNA test but we went anyway because Genetics said they had "no idea" what was causing her osteoporosis. Ten minutes into our visit with the 80+ year old doctor, he said "why hasn't she been tested for Celiac?". He will forever be our hero!

 

Anyway, we still have our hero doctor involved - he's communicating with our pediatrician and through her to Nephrology at UVA who would actually do the infusions. Since he is one of the world's foremost authorities on using bisphosphonates in pediatric patients, we will probably go with his recommendation. He spent well over an hour with us discussing the whole issue, pluses and minuses. We are just praying that she has shown "some" improvement - but we know it may not be enough. Like you said, we have to worry about her spinal health later in life, not just now. It's an overwhelming decision, and I've just been doing my best not to think about it during these 6 months! 

 

I hope that your daughter starts to notice some changes soon in the way she feels. I think that will make it easier for her to follow the diet. Also, I saw a bunch of lists last Spring of the top gluten-free colleges. You could probably Google that. Even if she isn't interested in those schools, I thought that the descriptions of what those schools do to accomodate the gluten-free diet would probably be a good basis for asking questions at other colleges. Good luck to her and you - hopefully this will be a great, healthy senior year for her!

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I think we're going with the 6 month DEXA check because of the looming pre-pubertal growth spurt issue. Actually, the recommendation to start bisphosphonate treatment is what sent us to Johns Hopkins. UVA was convinced she had Osteogenesis Imperfecta and talked us into the $3000 DNA test. The head of peds endocrinology kept insisting that we needed to do the infusions, but everything I read said only moderate to severe OI needs to be treated with bisphosphonates (and she would have been a mild case). So while we were waiting for the DNA test, we made an appointment with the director of the OI clinic at Hopkins to get his input on the treatments. Two days before we saw him we got the "normal" DNA test but we went anyway because Genetics said they had "no idea" what was causing her osteoporosis. Ten minutes into our visit with the 80+ year old doctor, he said "why hasn't she been tested for Celiac?". He will forever be our hero!

 

Anyway, we still have our hero doctor involved - he's communicating with our pediatrician and through her to Nephrology at UVA who would actually do the infusions. Since he is one of the world's foremost authorities on using bisphosphonates in pediatric patients, we will probably go with his recommendation. He spent well over an hour with us discussing the whole issue, pluses and minuses. We are just praying that she has shown "some" improvement - but we know it may not be enough. Like you said, we have to worry about her spinal health later in life, not just now. It's an overwhelming decision, and I've just been doing my best not to think about it during these 6 months! 

 

I hope that your daughter starts to notice some changes soon in the way she feels. I think that will make it easier for her to follow the diet. Also, I saw a bunch of lists last Spring of the top gluten-free colleges. You could probably Google that. Even if she isn't interested in those schools, I thought that the descriptions of what those schools do to accomodate the gluten-free diet would probably be a good basis for asking questions at other colleges. Good luck to her and you - hopefully this will be a great, healthy senior year for her!

Just checking in on how things are going for your daughter.  Megan is less fatigued now and it is nice to see a bit on energy in her again.  Have they done the 6 month DEXA yet?

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Just checking in on how things are going for your daughter.  Megan is less fatigued now and it is nice to see a bit on energy in her again.  Have they done the 6 month DEXA yet?

Lorisue, 

So glad to hear that Megan is getting more energy! We just got our results this afternoon, so I'm eager to share. The good news is that her TtG went from 99 to 6. It doesn't get much better than that! I've heard that it doesn't always go down that fast after going gluten-free, and I had psyched myself into hoping for at least a 50. So, needless to say, we are thrilled of this evidence that we are doing a good job on the gluten-free diet.

 

The DEXA news isn't so good. Her z-score in her spine is -3.2 (down from -3.3 six months ago). The hip stayed the same at -2.8. I guess we're going to be doing IV Pamidronate infusions now. :( Apparently bisphosphonates work best on growing bone, so it's important (& more valuable) to do the treatments now, before she hits that pre-pubertal growth spurt. We go in to see the doctors on Wednesday, and I'm glad for these few days with the test results to do our research and prepare our questions. This whole area of celiac induced juvenile osteoporosis is just a mystery to the doctors, it seems. Have you heard of any other patients? And where is your daughter getting treated? We're going to UVA hospital in Charlottesville, VA.

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Lorisue, 

So glad to hear that Megan is getting more energy! We just got our results this afternoon, so I'm eager to share. The good news is that her TtG went from 99 to 6. It doesn't get much better than that! I've heard that it doesn't always go down that fast after going gluten-free, and I had psyched myself into hoping for at least a 50. So, needless to say, we are thrilled of this evidence that we are doing a good job on the gluten-free diet.ea

 

The DEXA news isn't so good. Her z-score in her spine is -3.2 (down from -3.3 six months ago). The hip stayed the same at -2.8. I guess we're going to be doing IV Pamidronate infusions now. :( Apparently bisphosphonates work best on growing bone, so it's important (& more valuable) to do the treatments now, before she hits that pre-pubertal growth spurt. We go in to see the doctors on Wednesday, and I'm glad for these few days with the test results to do our research and prepare our questions. This whole area of celiac induced juvenile osteoporosis is just a mystery to the doctors, it seems. Have you heard of any other patients? And where is your daughter getting treated? We're going to UVA hospital in Charlottesville, VA.

please do your research on bisphosphonates!  what are her vitamin d, vit k, and ca, mag, and silca levels???

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We have and are certainly doing our research on bisphosphonates. All of her levels of the other vitamins and minerals you mentioned are normal. Doing our research and getting a second opinion about the bisphosphonates is what finally got us to the celiac diagnosis (she had no GI symptoms). It is why we also gave her bone density 6 months gluten-free to see if it would respond. We are consulting with one of the foremost authorities on bisphosphonate use in children. I know that they scare me, but I also know that pediatric use of bisphosphonate is totally different than adult. To put it simply, bisphosphonates' effect on growing bone is totally different than the effect on mature bone. We are doing our best to make a decision that will not just keep our daughter from more broken bones, but will keep her from having a Dowager's hump at age 40. 

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We have and are certainly doing our research on bisphosphonates. All of her levels of the other vitamins and minerals you mentioned are normal. Doing our research and getting a second opinion about the bisphosphonates is what finally got us to the celiac diagnosis (she had no GI symptoms). It is why we also gave her bone density 6 months gluten-free to see if it would respond. We are consulting with one of the foremost authorities on bisphosphonate use in children. I know that they scare me, but I also know that pediatric use of bisphosphonate is totally different than adult. To put it simply, bisphosphonates' effect on growing bone is totally different than the effect on mature bone. We are doing our best to make a decision that will not just keep our daughter from more broken bones, but will keep her from having a Dowager's hump at age 40. 

what is her Vit D level? esp. D3?  and what is her magnesium level?

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Eloise....your osteoporosis was most likely caused by the Celiac.  I have osteoporosis also but I am 56 years old so it's going to be harder for me to gain bone back.

You are 14 years old and have your hormones, which is important for bone growth.  Once you are gluten-free for awhile, your bone density should improve because you will start absorbing your calcium better.  Give it a little time, though.  I would imagine that they will repeat your DEXA scan in a year.

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Your bones are still in "growing mode" compared to an adult.  Because your system is set to grow bone mass right now, you'll probably strengthen bones faster than an adult who is just maintaining their bone mass at the same size.

 

Best wishes.

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Sorry, Eloise....I should have explained better.  ^_^   Having your hormones means that you have started your menstrual cycle and you do not have to tell anyone here whether that has happened yet or not.  :)   One of the hormones, estrogen, helps with bone growth.  There are other things which help you make good bone too but the hormones contribute.  Later in life, when a woman goes through menopause, her cycles stop and her hormone levels go down.  This is where I am in life so it is harder for me to make bone. I hope that clears things up a bit for you!

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