Bone Density Question

[mainekitty]

Hi all,

So I have had back pain (lower back especially) for the past few years, particularly since having my daughter 3 years ago. I also have very low levels of vitamin D (13-17). My gastro just referred me for a bone density scan because of this, the Crohn's, and the several courses of steroids I've had over the past 15 years of having this disease (I'm only 31). Just had the scan this morning.

My question is this: has anyone else had problems with bone density? What is "normal" - and what is not-so-normal? I am concerned, because osteoporosis run in my family, and because of all of the back pain. Also (and I know this is dumb) I got a good long look at the scan, and it looked like the lower portion looked significantly different from the upper portion. The upper portion had a thick layer of white around the bone, and the lower seemed to be much grayer, and missing this. Now I am paranoid, and I won't get the results of the scan back for a few weeks.

So, in this state of panic, I'm turning to this board...can anyone put my mind at rest that I'm not necessarily going to get osteoporosis?

Thank you for reading!

 

[Ihurt]

I would try not to worry too much. My husband had a bone density scan done last year and it showed osteopenia. Well he had it redone this year and now he has full blown osteoporosis in his hip! He is a 33 year old male so this is very unusual. He is seeing a endocrinologist right now for it. They have no clue why he has this. He just had another bone density test done a few days ago so we have to wait for those results now.

One thing to know is that we were told that osteoporosis does NOT cause pain at all. Only when you fracture does it cause pain. Your back pain likely is Not due to osteoporosis. I was severely Vit D deficient a few years back( I was like at a 9) and I did not have any bone issues or osteoporosis. Try not to worry too much. When we saw the endocrinologist he told us that he was even reluctant to do another test on my husband. He said these scans can be very unreliable. He said they are usually done on women who are 50 years old and up. Though they do do them on younger people too. The only reason my husband had one done was because our doctor has a machine in the office and we only pay our co-pay. I would try not to worry. If your scan shows signs of osteopenia or osteoporosis, they will likely offer you one of those Boniva type meds to help restore bone. That or you could just start taking extra calcium and VitD. My MIL has osteoporosis and she said when she started taking the calcium daily it helped her. He last scan showed improvement. In any event, if you get the results and are worried, I would work with a rheumatologist or an endocrinologist who specializes in osteoporosis. They are geared to deal with these issues. Until then I would try not to worry....

Hi all,

So I have had back pain (lower back especially) for the past few years, particularly since having my daughter 3 years ago. I also have very low levels of vitamin D (13-17). My gastro just referred me for a bone density scan because of this, the Crohn's, and the several courses of steroids I've had over the past 15 years of having this disease (I'm only 31). Just had the scan this morning.

My question is this: has anyone else had problems with bone density? What is "normal" - and what is not-so-normal? I am concerned, because osteoporosis run in my family, and because of all of the back pain. Also (and I know this is dumb) I got a good long look at the scan, and it looked like the lower portion looked significantly different from the upper portion. The upper portion had a thick layer of white around the bone, and the lower seemed to be much grayer, and missing this. Now I am paranoid, and I won't get the results of the scan back for a few weeks.

So, in this state of panic, I'm turning to this board...can anyone put my mind at rest that I'm not necessarily going to get osteoporosis?

Thank you for reading!

 

[mainekitty]

This is a really helpful response, thank you! I guess I just don't have any idea about bone issues, and so was getting jittery, but it sounds as though chronic low vit D doesn't necessarily mean bone issues, and bone issues aren't necessarily irreparable - this is honestly the kind of reassurance I needed

 

[Beach]

Along with checking vitamin D levels and correcting as needed, as you have done, here are a few other ideas that might be helpful in keeping bones strong. It is something I've been concerned about the last few years as I've read bone weakness being common for us with IBD conditions.

As mentioned in the article, personally I think weight resistance exercising and possibly taking or eating foods rich in vitamin K2 can be greatly beneficial also for improving bone strength.

"Homegrown osteoporosis prevention and reversal"

http://blog.trackyourplaque.com/2010/09/homegrown-osteoporosis-prevention-and-reversal.html

 

[nogutsnoglory]

Don't stress out till you hear from the doctor. Why a few weeks? I always hear from a doctor within 48 hours and then get the results mailed to me.

I have has the DEXA scan which showed osteopenia. I haven't had the scan in a few years because quite frankly I have so many other problems I'd rather live in the dark right now. Once everything else is in working order ill look into it but I refuse to take anything not natural for bone supplementation.

 

[CrohnsChicago]

Do you take calcium supplements or eat high calcium foods.

You should be consuming extra calcium especially when on steroids for a long period of time since it zaps your body of it.

Until a few weeks ago, I had been on steroids for a good 7 months or so out of the past year. My GI always encouraged me to take calcium supplements and I did. I got my bone density scan back after stopping prednisone and things appear to be normal according to him.

 

[mainekitty]

Thanks so much for this info everyone! I am guessing a few weeks, because that's when I see the gastro next, but maybe she will call? She is a new doctor for me, and this is the first time I've had the text, so I'm not sure actually.

 

[nogutsnoglory]

I think you can call and ask for the results 2 days after.

 

[Ihurt]

Hope you get your results soon. I Hate waiting for results. My husband had his bone density test done last Friday. We called the dr.'s office and the results are in according to his assistant but the doctor just has not looked at them yet so we have to wait! I hate the waiting game, so nerve wracking....

 

[normawood]

I am a geriatric ARNP (and a Crohn's patient, recnetly diagnosed with osteoporosis after 6 years diagnosed with osteopenia). Dexa scans, which are the most common way of testing for bone density in the US, measure bone density according to a T score that reflects how far below normal your bone density is. Bone density is measured in both the spine and hips, as well as occasionally in other areas. Osteopenia or low bone density is a score from -1 to -2.5. Lower than that is considered osteoporosis.
If you have osteopenia only, your doctor(s) may recommend calcium and vitamin D supplements only. Since you are so young, they may recommend stronger medicine. If they recommend something stronger, make sure you read up on the medication and feel comfortable taking it. This is not an emergency! Your bones won't get softer overnight if you need a little time to decide. However, weight bearing exercise is also helpful, and if you are otherwise healthy, you can start that right away. Treating your Crohn's so you can absorb nutrients like calcium also will help.
Although endocrinologists are specialists in osteoporosis, a good GI doc, who is familiar with Crohn's, can treat it just as well. A very good website to read up on this is web MD.
Hope this helps. I know another diagnosis is always very upsetting. My GI doc called me with the results of my scan within the week. Why don't you call and ask for results so at least you don't have to stress out over this?

 

[upsetmom]

Hi Sarah

Try not to worry.
As said above they usually prescribe Vit D and calcium.

My 15 year old daughters bone density is very low but her GI isn't concerned as her bone age is only 13...He said he'll retest her in a year or two.

 

[sickofcrohns]

For the record, I was on prednisone for 10.5 years. I had maybe 3 or 4 bone density scans during that time. My first few were all scary -- I was in my 20s but had osteopenia and the doctor told me my bones looked like a 60-year-old's. BUT I was very good about taking extra calcium, Vitamin D, zinc and magnesium, and by the time of my last scan -- before I got off the prednisone for good -- my bone density was in the normal range. So taking regular calcium and Vit. D supplements can reverse the course of bone loss, even while still on steroids!

Another thing to mention: if you have osteopenia, it might not be a good idea for you to participate in high-impact sports. This doesn't mean that you can't exercise -- actually, exercise can be quite helpful -- only that you shouldn't do things that put the bones under such stress that you could get a fracture. For instance, you might not be allowed to run, but you could use an elliptical, so that your feet aren't banging down.

This is something to talk about with your doctor.

Good luck!

 

[purdueCrohns]

Make sure you get that vitamin D level up.

 

[mainekitty]

Update: I heard back from the doc - the Vit D is still low (19), so we're going to do a course of (did I hear this right?) 50,000 per week for eight weeks, and then just regular supplements again after that. Still waiting on the density scan results, but she said it would be soon, you're right. Is the low Vit D because of the Crohn's? I have a good diet and have been taking supplements and really working on getting into the sun since I learned about the low levels last year. Why is this so persistent?

sickofcrohns: I had NO idea that it could be reversed! That is extremely reassuring!

 

[sickofcrohns]

mainekitty, your body needs vitamin D to process calcium. If you didn't have adequate vitamin D, you could eat calcium all day and it still wouldn't get incorporated into your bones. The high dose of vitamin your doctor gave you is probably his/her way of kickstarting the bone rebuilding process for you.

As to what causes low vitamin D -- vitamin D is something that the body makes when it's exposed to sunlight (UVB in particular -- the same wavelengths that cause wrinkles and cancer in large amounts). Lack of sun exposure can lead to inadequate vitamin D. It's actually pretty common in people in northern climates because we wear clothes and/or stay indoors most of the time.

 

[nogutsnoglory]

Bone destruction cannot always be reversed. It is very common for those with IBD to be low in Vitamin D. Definitely keep supplementing and discuss with your doctors what amount you may need.

 

[sickofcrohns]

Bone destruction cannot always be reversed.

It can't always be reversed, but it can often be reversed, particularly if caught early.

 

[Beach]

I've heard of doctors prescribing 50,000ius of vitamin D at a time, for a number of week but I'm not sure why that done. I've read that vitamin D2, the plant form of vitamin D, is poorly utilized by the body and much more is needed to be taken to raise circulating vitamin D levels. Possibly this is why the higher dose of 50,000ius is being recommended.

Possibly also a reason why tests of D3 are low, and having difficulty raising vitamin D levels is due to eating wheat (if you eat wheat). A few studies have found consuming wheat accelerates vitamin D use in the body at a faster rate.

A write up on that topic I recall ~

"Gluten Sensitivity: Celiac Disease is the Tip of the Iceberg"

http://wholehealthsource.blogspot.com/2008/12/gluten-sensitivity-celiac-disease-is.html

excerpt from the article:

Celiac disease is a degeneration of the lining of the small intestine caused by a sensitivity to gluten. Gluten is the protein portion of wheat, rye, barley, and wheat relatives (spelt, kamut, emmer, einkorn and triticale). I found an interesting paper recently on the impact of celiac disease on nutrient status and bone density. Researchers compared 54 Northern Italian children with untreated celiac disease to 60 presumably healthy children. The celiac patients had extremely poor vitamin D status, with a deficiency rate of 35.18% compared to 5% in the control group. This was using the lenient cut-off point of 20 ng/mL. Average serum 25(OH)D3 in celiac patients was less than half the level of the control group. The celiac patients also had low serum calcium and magnesium, and elevated parathyroid hormone. Celiac children had lower bone mineral density. All parameters returned to normal after 6 months on a gluten-free diet.

This confirms what has been shown numerous times before: celiac disease interferes with nutrient status, including the all-important fat-soluble vitamins. It's not surprising, since it flattens the villi, finger-like structures necessary for efficient nutrient absorption in the small intestine. But wait, the overwhelming majority of our vitamin D comes from the effect of sunlight on our skin, not through our small intestine! So gluten sensitivity must be doing something besides just flattening villi. Perhaps it does. Feeding wheat bran to "healthy" volunteers caused them to burn through their vitamin D reserves at an accelerated rate. I think this underlines what I've come to believe about wheat: it's problematic for a large proportion of the population, perhaps the majority....

 

[purdueCrohns]

People with Crohn's have low vitamin D for many reasons:
1) People with Crohn's have a harder time absorbing vitamins due to active inflammation, scar tissue, surgeries, and the accelerated digestive system speed during a flare.
2) People who are ill with a chronic illness may spend more time indoors thus getting less sun exposure thus limiting your vitamin D from the sun. Our bodies were also not designed to be inside all day. Vitamin D deficiency affects people without any chronic illness as well.
3) Doctors also believe that there are systemic issues unique to people with Crohn's that make it difficult to maintain appropriate vitamin D levels.

 

[mainekitty]

Just thought I'd update with the good news that the bone density scan was normal! Yay!!

 

[CronoMush]

Glad to hear the scan was normal!

I had one about 3 years ago because I had been on a long course of stereoids and my result at the time was borderline. I had to take Alendronic acid for a few weeks as a preventative measure and that was the end of the matter.

I have had another DEXA scan more recently. The doctor didn't say specifically why he was sending me though other than I've not had one for a while, although I am low on vit D at present and have been perscribed supplements. I'm still waiting for the results which I will probably not get until I see him again in a few months time.

 

[Mountaingem]

Glad to hear it turned out OK!