Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Frequent Bone Fractures In 4-Year-Old Celiac Girl

HollyGolightly2

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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):

Open Original Shared Link

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!  ;)

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

 

 

Open Original Shared Link

 

...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)....

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also h...
    2. trents
      - trents replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten...
    3. suek54
      - suek54 replied to Kayla S's topic in Dermatitis Herpetiformis
      4

      Need advice for some relief!

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally...
    4. Scott Adams
      0

      Do Air Filters, Vent Hoods, and HEPA Vacuums Reduce Home Gluten Exposure?

    5. MicG
      - MicG replied to MicG's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Test interpretations

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,655
    • Most Online (within 30 mins)
      7,748
    Coop12
    Newest Member
    Coop12
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Test interpretations

      By Scott Adams · Posted

      Based on those results alone, it’s not possible to say you have celiac disease. The test that is usually most specific for celiac, tTG-IgA, is negative in your results, and the endomysial antibody (EMA) is also negative, which generally argues against active celiac disease. However, your deamidated gliadin IgA is elevated, and your total IgA level is also high, which can sometimes affect how the other antibody tests behave. Another important factor is that you were reducing gluten before the test, which can lower antibody levels and make the results less reliable. Because of that, many doctors recommend a gluten challenge (eating gluten regularly for several weeks) before repeating blood tests or considering an endoscopy if symptoms and labs raise concern. It would be best to review these results with a gastroenterologist, who can interpret them in context and decide whether further testing is needed.
    • trents
      Test interpretations

      By trents · Posted

      Since you compromised the validity of the antibody testing by experimenting with gluten withdrawal ahead of the testing, you are faced with two options: 1. Reintroduce significant amounts of gluten into your diet for a period of weeks, i.e., undertake a "gluten challenge". The most recent guidelines are the daily consumption of at least 10g of gluten (about the amount found in 4-6 slices of wheat-based bread) for at least two weeks leading up to the day of testing. Note: I would certainly give it more than two weeks to be sure. 2. Be willing to live with the ambiguity of not knowing whether gluten causes you problems because you have celiac disease or NCGS (Non Celiac Gluten Sensitivity). There is no test for NCGS. Celiac disease must first be ruled out and we have tests for it. Celiac disease has an autoimmune base. NCGS does not. GI symptoms overlap. In the early stages of celiac disease, other body systems may not be showing stress or damage so, symptomatically, it would be difficult to distinguish between celiac disease and NCGS. Both conditions require elimination of gluten from the diet for symptom relief. Some experts feel that NCGS can be a precursor to celiac disease.
    • suek54
      Need advice for some relief!

      By suek54 · Posted

      Hi Kayla Huge sympathies. I was diagnosed in December, after 8 months of the most awful rash, literally top to toe. Mine is a work in progress. Im on just 50mg dapsone at the moment but probably need an increased dose to properly put the lid on it. As you have been now glutened, I wondered whether it might be worth asking for a skin biopsy to finally get a proper diagnosis? Sue  
    • MicG
      Test interpretations

      By MicG · Posted

      I had been eating reduced gluten until about 3 days before the test. I did realize that wasn’t ideal, but it was experimental to see if gluten was actually bothering me. One slip up with soy sauce and it was quite clear to me that it was, lol. 
    • trents
      Test interpretations

      By trents · Posted

      Possibly. Your total IGA (Immunoglobulin A, Qn, Serum) is actually high so you are not IGA deficient. In the absence of IGA deficiency, the most reliable celiac antibody test would be the t-Transglutaminase (tTG) IgA for which your score is within normal range. There are other things besides celiac disease that might cause an elevated DGP-IGA (Deamidated Gliadin Abs, lgA) for which you do have a positive score. It might also be of concern that your total IGA is elevated as that can indicate some other health problems, some of which are serious.  Had you been practicing a gluten free or a reduced gluten free diet prior to the blood draw? Talk to your physician about these things. I would also seek an endoscopy/biopsy of the small bowel to check for damage to the villous lining, which is the gold standard diagnostic test for celiac disease.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.