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Frequent Bone Fractures In 4-Year-Old Celiac Girl

HollyGolightly2

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HollyGolightly2 Newbie
HollyGolightly2
Posted

Hi all,

I have been on this forum before as ButterflyChaser (but forgot my old password!) because of some reactions I had/have to wheat which appear not to be celiac. I remember you all being very helpful at the time, and I need to tap your knowledge for my niece.

My brother's daughter is 4, and has finally been diagnosed with celiac. The poor kid was severely underweight, had bad dermatitis, swollen and tended gut, and was constantly sick (she caught pneumonia three times this year alone). I kind of wanna slap her pediatrician who never thought of testing her, but that is a separate issue.

Since going gluten-free she has vastly improved: she has grown taller, has more energy, her tummy does not hurt anymore and she has a good appetite and is, for the first time, a happy child.

BUT. She appears to have extremely fragile bones. She broke her collarbone a month ago, and no sooner than it had been fixed she broke her arm two days ago. That is simply by slipping and falling because she was bouncing around being happy or playing. She did not fall from a chair or any height, and she did not fall over any hard object that could cause further leverage or trauma.

I am concerned that this level of fragility is not normal in a small child. Does anyone here know of celiac-related bone fragility issues? Or has any resources where I might find info on the topic? We are all getting quite scared at this point.

Thank you for any ideas you might have.

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cyclinglady Grand Master
cyclinglady
Posted

Welcome back! Sorry to hear about your niece. Here is an older thread about this very topic:

https://www.celiac.com/forums/topic/91919-broken-bones/

I am sure that once she has been gluten-free for a while her bones will improve!

HollyGolightly2 Newbie
HollyGolightly2
Posted
  • Author

Thank you for the reference! Would you ask for Vitamin D testing or other types of tests?

I am kind of annoyed because at the hospital they first said the x-rays were not too clear, and then that they would not do another one on a 4-year-old kid...

weluvgators Explorer
weluvgators
Posted

Hi!  I posted in the other thread as well, but thought I would share some additional information.  Our daughter has since broken some additional bones, and our Australian rheumatologist was not terribly surprised.  We are dealing with joint hypermobility which can also contribute to this phenomena of accident/injury proneness.  I assume this is related to the connective tissues disorders that can be associated with the gluten intolerance / celiac spectrum.  We had an amazing rheumatologist in Australia that really seemed to pull some things together for us in understanding our child's condition.

 

Anyway, just wanted to share that our daughter's apparent "bone fragility" seems related to her joint hypermobility (no one in the American healthcare system educated us on this condition, or even told us that this was contributing to her problems!!).  There are physical therapies that can help with it.  While none of our doctors has wanted to do bone density scans/testing yet, her bone density is a discussion that is still happening.  Reading that other thread made me recognize that our daughter struggles to do weight bearing exercise as well - for a myriad of reason, interest and motivation among them . . . but again, she has always been "accident prone" and one tends to err on the side of caution after taking painful spills!  I am still unsure if there are neurological issues that are contributing as well . . . as when she was younger it was if her legs simply didn't do what she thought they would do type of stuff.  And she still struggles with motor control compared to her peers.

 

Please let me know if you have any questions about our experiences.

cyclinglady Grand Master
cyclinglady
Posted

I am not a doctor, but my own four year old broke her elbow while walking on her Dad's back (her version of massage while he was laying on the newly carpeted floor). The ER diagnosed her with a break and splint her arm (it was painful for her and we knew she was not faking it). Her visit to the Ortho doc said that it was hard to tell at that age because their bones are still developing and X-rays can not catch them always on a small child. She did wear the splint for a few weeks and then she was fine. She does not have celiac disease.

On another personal note, at age 2-1/2 I broke my collar bone. Fell from crib height. Apparently, I was trying to climb into the crib to "kill" my baby brother! LOL! My Mom was sad because I was forced to wear a blouse and skirt for Christmas instead of the frilly dress she had purchased.

cyclinglady Grand Master
cyclinglady
Posted

Yes, she should get tested for deficiencies. Read this link from the American College of Gastroenteology (scroll to bottom):

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Gemini Experienced
Gemini
Posted

HollyGolightly2.....love your screen name!  :)

 

It is extremely common for newly diagnosed Celiac's to have fragile bones and as your niece seems to have a more severe case of Celiac ( as do I) it is not surprising that she has fractrured some bones. She probably has not been absorbing calcium much in her 4 short years on the planet. Test for deficiencies but I would guarantee that this will correct itself with time.  She is 4 so her bones will catch up with the gluten-free diet.  It's harder for me....I am 56!  ;)

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HollyGolightly2 Newbie
HollyGolightly2
Posted
  • Author

Thank you all for your informative and reassuring replies! I am very grateful for that, and so is my brother. I hope things will get better soon for her.

Unrelated question: what are the chances of her brother and parents also being celiac? My family (her dad's) has a history of autoimmune disorders: he has scleroderma, I have autoimmune thyroiditis, mum has vitiligo, her mum and some aunts had rheumatoid arthritis, some have Chron's and many have some hard to diagnose bowel issues, even when they test negative for celiac (I tested years ago and I was negative, barely borderline). I assume that it must come from our side of the family, but I don't know what the official statistics are.

kareng Grand Master
kareng
Posted

Thank you all for your informative and reassuring replies! I am very grateful for that, and so is my brother. I hope things will get better soon for her.

Unrelated question: what are the chances of her brother and parents also being celiac? My family (her dad's) has a history of autoimmune disorders: he has scleroderma, I have autoimmune thyroiditis, mum has vitiligo, her mum and some aunts had rheumatoid arthritis, some have Chron's and many have some hard to diagnose bowel issues, even when they test negative for celiac (I tested years ago and I was negative, barely borderline). I assume that it must come from our side of the family, but I don't know what the official statistics are.

 

 

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...Research shows the prevalence for 1st-degree relatives to be between 4-16%. Our own experience when testing for celiac disease in 1st-degree relatives is a prevalence around 5% (or 1:20)....

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