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. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,331
    • Most Online (within 30 mins)
      7,748
    Kristy2026
    Newest Member
    Kristy2026
    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

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.