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Anyone Else Get The Bone Aches?!

eers03

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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.

 

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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.

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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!!"

 

;)

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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

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    • catnapt
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    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      Welcome, @catnapt! The most recent guidelines are the daily consumption of a minimum of 10g of gluten (about the amount found in 4-6 slices of wheat bread) for a minimum of two weeks. But if possible stretching that out even more would enhance the chances of getting valid test results. These guidelines are for those who have been eating gluten free for a significant amount of time. It's called the "gluten challenge".  Yes, you can develop celiac disease at any stage of life. There is a genetic component but also a stress trigger that is needed to activate the celiac genes. About 30-40% of the general population possesses the genetic potential to develop celiac disease but only about 1% of the general population actually develop celiac disease. For most with the potential, the triggering stress event doesn't happen. It can be many things but often it is a viral infection. Having said that, it is also the case that many, many people who eventually are diagnosed with celiac disease probably experienced the actual onset years before. Many celiacs are of the "silent" type, meaning that symptoms are largely missing or very minor and get overlooked until damage to the small bowel lining becomes advanced or they develop iron deficiency anemia or some other medical problem associated with celiac disease. Many, many are never diagnosed or are diagnosed later in life because they did not experience classic symptoms. And many physicians are only looking for classic symptoms. We now know that there are over 200 symptoms/medical problems associated with celiac disease but many docs are only looking for things like boating, gas, diarrhea. I certainly understand your concerns about not wanting to damage your body by taking on a gluten challenge. Your other option is to totally commit to gluten free eating and see if your symptoms improve. It can take two years or more for complete healing of the small bowel lining once going gluten free but usually people experience significant improvement well before then. If their is significant improvement in your symptoms when going seriously gluten free, then you likely have your answer. You would either have celiac disease or NCGS (Non Celiac Gluten Sensitivity).
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
    • trents
      Accuracy of testing concerns

      By trents · Posted

      The biopsy looks for damage to the mucosal lining of the small bowel from the inflammation caused by celiac disease when gluten is ingested. Once you remove gluten from the diet, inflammation subsides and the mucosal lining begins to heal. 
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