Bone Density

[bluelotus]

Hi all,

Has anyone followed up on the recommendations and had a bone density test done? I will be picking up my referral tomorrow to have one done. What do they do during the test? Is it painful? I am only 24, but my knees and ankles ache from gluten; also, my mom (dx'd with celiac disease too, 50+ yrs old) has osteoporosis (sp?), so I want to make sure that my body's alright.

By the way, I was doing so well and hadn't been glutened in about a month. Ever since the holidays though, something has been bothering me and I feel so crappy. Makes the holidays much less enjoyable.

That reminds me too, how many of you all have gotten a second blood test or biopsy after going gluten free? I am particularly interested in you all that are still symptomatic. Maybe I should get another blood test done to see if it really is gluten making me sick at the moment.....

Thanks in advance for the help/advice!

[Guest CD_Surviver]

from what i have heard is that these test are very painful because they take a biopsy of your bone marrow and a few other things. i have not had one done but all celiacs should be tested no matter what.

Hope this helps.

Lauren

[Felidae]

I want to get the test done too, but I don't know anything about it either. My mom said it doesn't hurt at all. She said you don't feel anything.

[bluelotus]

Oh, yuck....bone biopsies (pathetic that I am a biologist, but have a weak stomach, guess that explains why I didn't got the vet. route). No offense, but I am keeping my fingers crossed that you are wrong about that

[Rachel--24]

As far as I know the test is painless. You just lay there while a machine goes over you. My mom says its gotta be the easiest test ever...totally painless. I think I should get one eventually since I also have Graves Disease. I think people with Graves are suppossed to get this test done but none of my doctors have ever mentioned it to me....not that thats surprising or anything.

[stef-the-kicking-cuty]

from what i have heard is that these test are very painful because they take a biopsy of your bone marrow and a few other things.

What? Who? Where? Did I miss something there? I didn't have any pain .

I want to get the test done too, but I don't know anything about it either. My mom said it doesn't hurt at all. She said you don't feel anything.

Your mom is right, it doesn't hurt at all. I had it done, because I needed a physical for the world championships and my doctor recommended it. This way we where sure, that my bones would hold pretty much.

There are two known tests (what I know about at least). The old one is the one, where you lie down on one of these ex-ray tables and this machine, that Rachel mentioned goes over you. It's sort of an ex-ray, but the rays are so weak, that they won't harm your body. And the modern way of doing this (I heard), is measuring the bone of your heal. Don't ask me, why it's the heal .

My husband tried to threaten me by telling me, that they stick a needle into your bone. I told this to the nurse and she said, "send him to me I'll stick a needle into his sorry butt" . She just wanted to cheer me up, I thought it was kind of cute .

So, don't be afraid, it really doesn't hurt.

Lauren, what you probably confused it with is the test they do to test you for Multiple Sclerosis. They suck out some of the brain liquid (or what it's called in english) out of your spine and examine it or so. I know what it is, I just don't know how to describe it with english technical terms. It's very painful though. And my cousin has MS, she told me about it...

[de caps]

I was diagnosed withcd in August of 2005 and my GI doctor had me do a bone density test. A very simple pain less test. They just basically xray three parts of your body. Your wrist, hip, and spine.

My bone sensity came back showing severe osteoporosis. I could not believe it, because I'm only 38. No one can agree on the right treatment for me. The endocrinologist feels all that I need is rx strength vit D- I am deficient with extra calcium daily. The GI doctor and my primary think Fosamax is the way to go. I'm not sure since I thought these drugs were for post menopausal women only. I going to give the vitamins a try for now. Hopefully with the gluten free diet I will see some improvemet on my next bone density test.

[skoki-mom]

No, no, no, it's not painful at all! It's like an x-ray, it takes about 5 minutes to do. I only had my hips done, they just did some views with my leg straight, flexed 90 degrees, that's about it. I had mine actually before my scope, since my sister's first symptom was a fracture. Mine came back totally normal. Don't be scared!

[Ursa Major]

Well, I have had my bone density test requisition for about a month now. But because of the holidays and too much stress, I keep forgetting to make the appointment at the hospital to have it done. But having been tested to have low vitamin D, I expect that my calcium and magnesium must be low too. So, osteoporosis is a good possibility.

I'll try to remember to book the appointment tomorrow, thanks for reminding me with your post.

When my mother was about my age (and she undoubtedly had Celiac disease) my dad hugged her once (not very hard) and broke two of her ribs! I am sure she must have had osteoporosis.

My daughter has some Celiac friends, and told me how they do the test, and as others here said, it is definitely not painful.

[Guest schmenge]

I just had my scan done a little over 2 weeks ago. The test is a snap. I am at the low end of normal and my GI was surprised it was that good.

[bluelotus]

Thanks for all the replies and reassurance! I appreciate it. No doctor ever recommended a bone density test for me either, but I have read that it is important to have. When I called to get the referral yesterday, the nurse had no idea what celiac was, why a bone density test was needed, etc.....Not really suprising, I suppose, just sad b/c of the lack of information these people have.

[jenvan]

lotus--

good chance for you to educate i had bone density test too...easy, no biggie.

[Claire]

One more reassurance. I will be having my third test very soon.

It's a lot better than a mammogram!

Totally painless - you are lying down all the time (in different positions). It takes a half hour or more.

No big noise like the MRI.

Go for it! Claire

[Nevadan]

Since this looks like a "Ladies" thread, I thought I would mention that us guys also have a significant risk of osteo - at least 20% of those with osteo are male. A good reference: Open Original Shared Link . It's definitely a silent killer. I watched my father-in-law die of complications of a hip fracture almost certainly due to osteo and it wasn't pretty.

The test is painless - male or female: get it done! The earlier it is discovered, the more options you have for treatment.

Oh yes, I'm a male dx'ed with osteo at 55.

George

[MACE]

Hi all,

Has anyone followed up on the recommendations and had a bone density test done? I will be picking up my referral tomorrow to have one done. What do they do during the test? Is it painful? I am only 24, but my knees and ankles ache from gluten; also, my mom (dx'd with celiac disease too, 50+ yrs old) has osteoporosis (sp?), so I want to make sure that my body's alright.

By the way, I was doing so well and hadn't been glutened in about a month. Ever since the holidays though, something has been bothering me and I feel so crappy. Makes the holidays much less enjoyable.

That reminds me too, how many of you all have gotten a second blood test or biopsy after going gluten free? I am particularly interested in you all that are still symptomatic. Maybe I should get another blood test done to see if it really is gluten making me sick at the moment.....

Thanks in advance for the help/advice!

I HAVE HAD THE TEST MANY TIMES. IT IS NOTHING. YOU JUST LAY ON A TABLE FOR A FEW MINUTES. KIND OF LIKE AND X-RAY. YOU FEEL NOTHING AND IT ONLY TAKES A FEW MINUTES. IT IS ABOUT ONE OF THE LEAST PAINFUL TEST I CAN THINK OF. I HAVE OSTEOPOROSIS ALSO. HAD IT LONG BEFORE I KNEW I HAD CELIAC PROBLEMS. GOOD LUCK

[bluelotus]

Thanks again all. And, George, good mention of it being a men's issue too, not many people realize that (same with breast cancer, though that is much less frequent in men).

The doc office called me yesterday before I stopped by to pick up the referral in the morning. The nurse working said that the doc would not give me a referral because I was too young!!! Grrrrrr..... This was after I was told that I could have a referral. I guess my normal (equally ignorant) doctor was out of town this week and the sub felt I was too young. I told the nurse that I have celiac disease, I understand the doc knows nothing about it (obviously), but if he spent 5 min on the internet, he would understand why this is such an important test. The nurse was convinced (who the heck knows about the doctor though) and I will be picking up the referral today....finally.

Jeez.... no wonder it takes years to dx celiac disease! Ignorance abounds! I am still floored that most of us have to go through this, convincing docs of tests needed, etc. When I feel like I have to do someone else's job for them, I get very frustrated. I tell myself that doctors should be able to tell me what I need to do - I mean, we all have our own lives and all that comes with that to worry about without celiac disease. Ugh..... Sorry for the above rant. As you can tell, I am just working out some anger/frustration. Thanks for listening (or reading).

[stef-the-kicking-cuty]

One more reassurance. I will be having my third test very soon.

It's a lot better than a mammogram!

Totally painless - you are lying down all the time (in different positions). It takes a half hour or more.

No big noise like the MRI.

Go for it! Claire

It's waaaay better than a mammogram . And you can even joke with the nurse . Btw, when my mother visited me in the states in September 2005 for the entire months, she lived glutenfree with me the entire time. On her flight back home she ate normal. I think, it was a pasta soup and at the airport going through customs was the least of her concern. What she needed was a bathroom. She said, she was exploding with the big "D" and gas. And then back home her family doc said, that the osteo has improved so much, that she has green light now. It's like almost gone, she can't believe it.

He also ran the blood test for celiac (after I urged her to do it like a million times) and the results came back positive. Yike! She's scheduled for a biopsy now. That's so cool, we never would have found out, if she wouldn't have eaten glutenfree the entire month.