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.
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.
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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Neroli
"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein
"Life is not weathering the storm; it is learning to dance in the rain"
"Whatever the question, the answer is always chocolate." Nigella Lawson
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Caffeine free 1973 Lactose free 1990 (Mis)diagnosed IBS, fibromyalgia '80's and '90's Diagnosed psoriatic arthritis 2004 Self-diagnosed gluten intolerant, gluten-free Nov. 2007 Soy free March 2008 Nightshade free Feb 2009 Citric acid free June 2009 Potato starch free July 2009 (Totally) corn free Nov. 2009 Legume free March 2010 Now tolerant of lactose
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.
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.
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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gluten-free since may 06 after neg. biopsy symptoms went away and DH symptoms which I had since 03 got gradually better.
daughter officially diagnosed celiac and casein intolerant.
non-DQ2 or DQ8. Maybe DQ1? Updated: Yes, double DQ5
Hypothyroid since 2000, thyroxine first started to work well 06 on a low-carb and gluten-free diet
Lost 20 kg after going gluten-free and weighing 53 kg now. neg. biopsy for DH. Found out afterwards from this forum that it should have been taken during an outbreak but it was taken two weeks after. vitaminD was 57 nmol/l in may08)
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.
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" ---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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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?
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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
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!
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!
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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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir
"It isn't for the moment you are struck that you need courage, but for the long uphill climb back to sanity, faith and security." Anne Morrow Lindbergh
"Kindness in words creates confidence. Kindness in thinking creates profoundness. Kindness in giving creates love." Lao Tzu
"The strongest of all warriors are these two - time and patience." Leo Tolstoy
Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
---as so many of us can relate to, I'm afraid.
