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      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Anyone Else Get The Bone Aches?!
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eers03    20

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    1,205

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. :)

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Takala    413

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

http://www.webmd.com/pain-management/costochondritis

 

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. 
 

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eers03    20

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.

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nora_n    60

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

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GF Lover    201

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

 

Good luck. 

 

Colleen 

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quincy    9

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    1,633

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. 

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eers03    20

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?

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eers03    20

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!

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IrishHeart    1,633

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.

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eers03    20

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!

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i got these pretty tasty Vitamin D tablets from Bluebonnet http://www.amazon.com/Bluebonnet-EarthSweet-Chewable-Vitamin-2000/dp/B002NV4XOI/ref=sr_1_2?ie=UTF8&qid=1370574358&sr=8-2&keywords=bluebonnet+vitamin+d3+2000+iu

 

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!

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IrishHeart    1,633

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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