Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

Anyone Else Get The Bone Aches?!

eers03

Recommended Posts

eers03 Explorer
eers03
Posted

Hey all.  I'm an active 32 year old male who was diagnosed last November.  I'm experiencing some bone pain around my ribs and collarbone.  It comes and goes.  Sometimes I notice it more than others.  My bone density is slightly below average and my IGG was 81 two months ago.  I'm not taking any meds.  Does anyone have insights?  Is this common?  My CBC was good and my vitamin panel was fine.  I do have total villous atrophy.  My liver enzymes were elevated but returned well into normal ranges on a strict gluten-free diet.

 

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

When you say your vitamin panel was fine, what was your Vit.D score and range?  If you have lost bone density at your age you probably need to be supplementing D.  Unless you are above average, with osteopenia (which I am assuming - it might not have reached that level but no matter) you need to be supplementing.  5,000 iu/day to bring you above average and then drop back (or stay the same if necessary) to keep it there. :ph34r:

 

Many celiacs experience bone pain/joint pain for some time.  I don't know if this is something new for you.  It is certainly not due to being gluten free, if it is, but may have been coming on anyway.  Sometimes it is rheumatoid-type pain, sometimes it is connective tissue, sometimes it is hard to tell what it is.  Stay and the course and you should see some improvement.  If it gets worse or worries you by all means talk to your doctor. 

 

It sounds like you are on the right path, but with total villous atrophy your body is going to take a while to get back in equilibrium. :)

Takala Enthusiast
Takala
Posted

It may be some mild costochondritis , an inflammation of the softer connective tissue holding the rib cage together. 

Open Original Shared Link

 

There are some forms of arthritis where this is more common, and to say it is painful when it flares up is an understatement.  Sometimes I still get a very slight twinge of it when I have eaten a bit more carefree of processed food (I am off of gluten for a decade now) or have really exercised certain muscles and have not recovered yet.  I have been a lot better since I was accidentally kicked in the sternum by a young horse about 7 years ago, I think the son of a gun broke up some scar adhesions, but at the time, I thought I was going to die until I managed to get my breath again. (older horse nearby did something out of a movie script and intervened as I was laying there and went after the culprit, culprit horse went to trainer, new owner, happily ever after, etc).  I really do not recommend that "cure," it's easier to stick to the gluten free diet, take those vitamin and mineral supplements, and keep the back end of the equine pointing away from you ! 

 

You can also try incorporating more ginger and tumeric, natural anti inflammatories, into your meals and beverages, and when cherry season starts, try eating lots of cherries. 
 

eers03 Explorer
eers03
Posted
  • Author

Thanks for the feedback!  My Vitamin D range is 25-80 and mine is 33.  Great perspectives on the connective tissue inflammation as well.  I am seeing my PCP this week and will run it by him but am confident he won't be too concerned.  It's nothing that really prohibits my daily activity right now but want to make sure I stay on top of things to keep it from digressing.

 

Thanks again for the thoughtful responses.  I do appreciate it.

nora-n Rookie
nora-n
Posted

Bone aches can also be hyperparathyroid, the tests are PTH and calcium. And, yes, the blood tests are way too wide (like with thyroid)

GF Lover Rising Star
GF Lover
Posted

Sitz (spelling) baths can help with bone and muscle and yes, anti inflammatory foods are great all the time.  

 

Good luck. 

 

Colleen 

quincy Contributor
quincy
Posted

Hey all.  I'm an active 32 year old male who was diagnosed last November.  I'm experiencing some bone pain around my ribs and collarbone.  It comes and goes.  Sometimes I notice it more than others.  My bone density is slightly below average and my IGG was 81 two months ago.  I'm not taking any meds.  Does anyone have insights?  Is this common?  My CBC was good and my vitamin panel was fine.  I do have total villous atrophy.  My liver enzymes were elevated but returned well into normal ranges on a strict gluten-free diet.

it could be the osteopenia. I assume you had a bone density test.  I had rib pain when I was first diagnosed and it took a while for it to dissipate. I had a follow up bone scan and found out my density went down in my hip to borderline osteoporosis.  FInally my endocrinologist ordered a 24 hour urine collection to measure the amount of calcium I am excreting. and it turned out to be quite high so I have to take something to try and correct it.

don't assume that as your intestine heals your calcium absorption will improve and and correct your bone density. there could be other things out of whack that might interfere with re-mineralization of your bones.

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

Celiac.com Sponsor (A8-M):


IrishHeart Veteran
IrishHeart
Posted

I had wicked rib cage pain (still do, to an extent) and my collar bone region hurts like heck.

I was told it was costochondritis.

 

I have lots of "itises" --I feel like I am the queen of "itis" :unsure: ---as so many of us can relate to, I'm afraid.

 

It is better after 2 years gluten-free, and I remain hopeful for continued healing. 

I have horrid bone/joint/muscle pain from celiac, but it does improve.

Hang in there. 

 

Your D level (33) is too low. Mine was 17 at one point and every doc told me to get it over 75!!!

Boost your D levels, perhaps? IMHO. 

eers03 Explorer
eers03
Posted
  • Author

it could be the osteopenia. I assume you had a bone density test.  I had rib pain when I was first diagnosed and it took a while for it to dissipate. I had a follow up bone scan and found out my density went down in my hip to borderline osteoporosis.  FInally my endocrinologist ordered a 24 hour urine collection to measure the amount of calcium I am excreting. and it turned out to be quite high so I have to take something to try and correct it.

don't assume that as your intestine heals your calcium absorption will improve and and correct your bone density. there could be other things out of whack that might interfere with re-mineralization of your bones.

Quincy--good looking out.  I think I will mention the idea of a 24 hour urine during my next visit.  I recently did a urine test in office that came back fine from an infection/protein perspective but I'm assuming it would not pick up what you are talking about.  If I were dumping calcium, how does one correct it?

eers03 Explorer
eers03
Posted
  • Author

I had wicked rib cage pain (still do, to an extent) and my collar bone region hurts like heck.

I was told it was costochondritis.

 

I have lots of "itises" --I feel like I am the queen of "itis" :unsure: ---as so many of us can relate to, I'm afraid.

 

It is better after 2 years gluten-free, and I remain hopeful for continued healing. 

I have horrid bone/joint/muscle pain from celiac, but it does improve.

Hang in there. 

 

Your D level (33) is too low. Mine was 17 at one point and every doc told me to get it over 75!!!

Boost your D levels, perhaps? IMHO. 

Thanks for the heads up on the D levels.  I have been slacking on taking my D supplement.  Thats great motivation to get back with it.  Thanks!

  • 2 months later...
IrishHeart Veteran
IrishHeart
Posted

Thanks for the heads up on the D levels.  I have been slacking on taking my D supplement.  Thats great motivation to get back with it.  Thanks!

Just checking in to see if your D is up? did your  doc check your levels again? You can always safely dose with 2,000 Ius daily.

eers03 Explorer
eers03
Posted
  • Author

I haven't had my Vitamin D check since January.  I will most likely have it checked again in July along with some other labs.  I keep forgetting to take my Vitamin D in the morning.  Went for a light jog this evening.  The good news is that the shooting pain around my shoulders during running has gone away.  The bad news is, I'm getting a shooting pain about 2 miles in from my foot which pretty well ends things right there.  

 

I'm SO grateful that I can just jog 1-2 miles.  I couldn't do it last fall.  Too painful. 

 

Currently though, there is a direct connection with me breaking a sweat and sleeping really well.  If I go for a jog for 20 minutes, I sleep well for 2-3 nights in a row.  Go figure...

 

I SWEAR I'm going to take that Vitamin D.  Thanks for checking!

powerofpositivethinking Community Regular
powerofpositivethinking
Posted

i got these pretty tasty Vitamin D tablets from Bluebonnet Open Original Shared Link

 

would that help you remember to take them  :)

I haven't had my Vitamin D check since January.  I will most likely have it checked again in July along with some other labs.  I keep forgetting to take my Vitamin D in the morning.  Went for a light jog this evening.  The good news is that the shooting pain around my shoulders during running has gone away.  The bad news is, I'm getting a shooting pain about 2 miles in from my foot which pretty well ends things right there.  

 

I'm SO grateful that I can just jog 1-2 miles.  I couldn't do it last fall.  Too painful. 

 

Currently though, there is a direct connection with me breaking a sweat and sleeping really well.  If I go for a jog for 20 minutes, I sleep well for 2-3 nights in a row.  Go figure...

 

I SWEAR I'm going to take that Vitamin D.  Thanks for checking!

IrishHeart Veteran
IrishHeart
Posted

I hate to state the obvious solution, but what the heck.....how about you PUT a post- it on your bathroom mirror saying:

 

"DUDE...Take your Vit D!!"

 

;)

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. cristiana
      - cristiana commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      The first symptoms I had of coeliac disease were migraines. I think your doctor needs to test you for coeliac disease. The fact you are having migraines at night is interesting, but I never used to drink enough and my headaches were worse when I woke up in the morning. Dehydration was also a big cause for me.
    2. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      I'll ask the same question that knitty kitty asked? On what basis did your Dr arrive at the conclusion that you have gluten intolerance? But let's be clear about terminology because the terms "gluten intolerance" and "gluten sensitivity" are typically used interchangeably out there in the wild and both are used indiscriminately to speak of two different...
    3. Brandy969
      - Brandy969 replied to Jack Common's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      24

      What should I do with these test results?

      Thank you! I didn’t know this!
    4. Debado
      - Debado commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      Interesting....my Dr says since migranes are my only symptom she says I have gluten intolerance. I have stopped eating gluten. However, it seems to sneak in from time to time. Example: I ate canned mushrooms! Never thought canned mushrooms could have gluten, but they did. I had a migrane for 3 nights straight. Or I eat out, I think I am getting gluten free...
    5. trents
      - trents commented on Debado's blog entry in Debado
      10

      Gluten migranes at night

      What medicine did they give you for migraines? Does it help much? I also suffer from migraines and am on one med for prevention and another for relief after onset. Many times, my headaches start during the night when I'm sleeping but not always. Have you cut back on gluten consumption of late? As knitty kitty explained, you must have been eating generous...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      126,793
    • Most Online (within 30 mins)
      7,748
    natrurespirt
    Newest Member
    natrurespirt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Brandy969
      What should I do with these test results?

      By Brandy969 · Posted

      Thank you! I didn’t know this! 
    • knitty kitty
      Night time migranes

      By knitty kitty · Posted

      Welcome to the forum, @Debado, Migraines at night can be caused by high levels of histamine.  Histamine Intolerance can cause physical symptoms like migraines. Foods contain histamine.  Our bodies make histamine, an important neurotransmitter.  Our bodies naturally produce more histamine at night as part of our circadian rhythm, our sleep-wake cycles.   Some foods like gluten and nuts contain high histamine themselves or trigger our bodies to produce more histamine.  A low histamine diet is helpful, cutting out high histamine foods and histamine-release triggering foods.   Our bodies can breakdown a certain amount of histamine, but sometimes our bodies cannot keep up with the amount of histamine needing to be broken down, and can be overwhelmed by the amount of histamine resulting in Histamine Intolerance and health problems like migraines.   Vitamins C, B12, Pyridoxine B6 and thiamin B1 help lower histamine levels.  Our bodies use these vitamins to make an enzyme DOA (diamond oxidase) that breaks down histamine.  DAO from beef or pork kidney is an over-the-counter supplement that can be taken.   Riboflavin B2 is very helpful for relieving migraines.   Have you been diagnosed with Celiac Disease or suspect you have it?   Happy Holidays!
    • knitty kitty
      Guidance on next steps after the lab tests

      By knitty kitty · Posted

      @ABP2025, Have you thought about having a DNA test to check for known Celiac genes?    I do hope you will make sure that you are getting sufficient gluten to provoke an autoimmune response strong enough that the antibodies can be measured in the blood.  See article below. Celiac disease affects the absorption of nutrients,  including vitamins and minerals.  Your symptoms may be associated with thiamine deficiency.   Migraines and peripheral neuropathy, phimosis (yes, even this), and white spots on the brain are seen in thiamine deficiency.  Celiac disease disrupts the absorption of all the essential nutrients, but thiamine can be quickly depleted, in as little as three days.  Thiamine deficiency can occur even if blood tests show normal levels.  Thiamine deficiency can affect antibody production.      
    • Debado
      Night time migranes

      By Debado · Posted

      Anybody ever heard of getting a migrane from gluten and coconut oil ONLY at night?   If I consume gluten or coconut oil, even in the morning,  I will get a migrane. But not until half way thru the night. I don't get this. Why at night? Why not right after I eat?
    • trents
      What should I do with these test results?

      By trents · Posted

      Early on,  DQ2 and DQ8 were the primary genes that have been connected to the potential to develop celiac genes but more recent genetic research suggests there may be more.
×
×
  • Create New...