So Scared....bone Density Scan Showed Osteoporosis

[chgomom]

Soooooooo I went to my doc who is a researcher and expert in Celiac disease.

At the University of Chicago

Anyway...she took a look at me today....did the standard once over and right away was pull things like deficiencies....and so on from my symptoms...

Then she sends me for a STAT Dexxa scan...bone density thing...and showed that I have osteoporosis clearly in my spine and my hips showed osteopenia....

Sooo scared....anybody know anything about this.....anybopdy have this????

So she ran all labs again....and said its a serious problem and may mean IV supplementation....or a cocktail of supplements,,,,

Oy vey...

[tarnalberry]

I'm sorry about the results, but I know many people here are battling that proble, regardless of age.

Don't forget to get magnesium and D with that calcium (studies showing magnesium possibly MORE important than calcium for celiacs), and weight bearing exercise, as recommended by the doc.

[Ursa Major]

I am sorry about the osteoporosis and osteopenia, and understand that you're scared. It is very likely that you are deficient in vitamin D, Calcium and Magnesium. Supplementing vitamin D and Magnesium is even more important than calcium supplementation, because your body can't use calcium without the D and magnesium.

Depending on your age, it may still be largely reversible by supplementation, exercise and diet. The problems with the prescription pills is, that they don't really build bone (even though they look denser in x-rays), but rather prevent your body from replacing existing bone. In the end there is higher density, but it won't be stronger, because it's old bone your body is hanging onto. Plus, the medicine may cause necrosis of the jaw (your jaw rotting away), which is, as far as I am concerned, much more serious than osteoporosis.

[chgomom]

Well I am 28 yrs old....

and I have been geting stress fractures in my ankles and feet....

As a kid I always broke something altough when I was a kid...Celiac was still one of those "you'll never see it in a dr. practice" kind of a thing...

and the doc said she wants to do a supplement cocktail before she sends me on my way with a boniva or somehting similar....

She also said she can tell right away I have some major issue with Zinc? and A......I haven't looked those up yet....

So based on all of that.....she said....were base lining it all again...

Ahe also said...the results of the scan today explain the aching and back pain and that its almost hand in hand with Celiac who have gone many years without a proper diagnosis....

[tarnalberry]

She also said she can tell right away I have some major issue with Zinc? and A......I haven't looked those up yet....

yah.... zinc is also vital for bone formation. you'll probably want to do a fair amount of research into the complimentary minerals needed for bone formation. the good news is that, from what I've read and what people on the board here have said, if it's a nutritional deficiency, and given your age, I would think that there are very good odds for significant improvement. you may never have 'bones of steel', but I would think there should be reason for hope.

[Ursa Major]

It sounds like you have an amazing doctor, can we all switch to her? One 12-year-old girl on this site replied to somebody else, saying that she had been diagnosed with osteoporosis already, which sounds like might have been the case with you as well.

But at your age, I agree with your doctor, a cocktail of the right combination of supplements, some weight bearing exercise, and being gluten-free might still reverse the osteoporosis. But even if it won't be completely reversed, it can surely be arrested and stopped from getting worse.

I am very glad for you that this was diagnosed now, and not twenty or more years down the road, when it would be too late to reverse it. So, try not to be scared, and consider the diagnosis a blessing. Hopefully the treatment will prevent any more fractures from happening.

[chgomom]

Yeah...what I liked.....was actually being infront a a human being who looked at me and said....

yep....yep, uh huh...nope you're not crazy. This is a very serious disease, but one that can be mananged.

And yes....osteoporosis and osteopenia are serious...but we canmanage those too.

All this garbage for year, and I mean the better part of 5 yrs now...being shuffled from one doc to another till finally I get mad and say enough is enough...I don't feel well I'm not listening to you guys any more and I am referringmyself out (which is how back in June I found out I had it positive Anti Gliadins and TTG with high complement levels....and crp levels....and a complete response to a gluten free diet)

She also said....she beleives that from the albs and my history I am part of a "sub group of people" that become violently ill when challenged and or experience cross contamination...so she absolutely no challanges....because its just nto worth it....and that we're not even going to go there with it.

Soo....all that for me boils down to I am sooo happy to have an explanation for everything....but scared.....because I ache...ALL the time....in my back...and legs....and...she said probably the reason its nto so bad in my hips...is because I walk all the time and they are constantly challanged.....

*sighs*

Sorry for rambling....its just scary...

[chgomom]

Ursula....

thats the other thought...I also am looking at it as a blessing that I was fortunate to be able to get into a doctor like that...that it was a University Hospital where she could get on the phone and say I need to send a 28 yr old....celiac patient down for a stat scan...and with in 30 min I knew what all this pain was.....

and also as a blessing that.....with the celiac dx and this...there is a path to follow....all the pieces fit,,,,

She also laughed....she was going to bring a nutritionist.....and she said tell me what you know about the diet.....and I did...and I said...whats hard for me....is the modofied food starch. Depending on who makes it....or what batch...it could be from corn...it could be form wheat....I said......She said ok...you're already pretty advanced there....but just limit producst made in Europe that are gluten free and try to keep them made in the US, Canada or Australia....because of the regulations....I dunno...but I will try it out...

[chgomom]

*sighs*

Today everyone was saying....wow....you're like an 80 yr old woman.....people your age don't get that.

I said it has to do with the celiac.

Uggghhh...

Then the doc "reassured" me, as much as I like her*lol*, that you can get worse be fore you get better, and it really can take atleast a year, to two years to be considered "healed" and she said you're never healed its just your body has repaired and its stopped being out of control.

Wow.....

[Rusla]

First off osteoporosis in the spine is a major contributor to stature shrinkage. Caltrate chews have vitamin D in them and taste okay.

[Lexis]

I am 15 and have been diagnosed with osteopinia (sp) about 5 months ago, my doctor said it was because the weight loss/low body fat (because of celiac diagnosed about 7 months ago) and no menstrual cycle which was because my body stopped producing hormones, so bones can't absorb calcium, so I was put on birth control to level out/produce hormones.

[Lexis]

i use Yasmin, my nutritionist checked and it's gluten free

[jkmunchkin]

Well I am 28 yrs old....

and I have been geting stress fractures in my ankles and feet....

As a kid I always broke something altough when I was a kid...Celiac was still one of those "you'll never see it in a dr. practice" kind of a thing...

and the doc said she wants to do a supplement cocktail before she sends me on my way with a boniva or somehting similar....

She also said she can tell right away I have some major issue with Zinc? and A......I haven't looked those up yet....

So based on all of that.....she said....were base lining it all again...

Ahe also said...the results of the scan today explain the aching and back pain and that its almost hand in hand with Celiac who have gone many years without a proper diagnosis....

I am 29 and also showed that I had osteopenia a couple months ago when my doctor sent me for bone density tests. I've heard it can be a serious problem, but she told me to take calcium with vitamin D 3x a day. I have trouble remembering 3x a day, but I try and take it atleast twice.

I guess I don't really have that much info except to say, I know how you feel and hopefully you can just take the supplements and be ok.

*sighs*

Today everyone was saying....wow....you're like an 80 yr old woman.....people your age don't get that.

I said it has to do with the celiac.

Uggghhh...

Oh geez, I get the exact same comment!!! My stepmom told me I'm like a senior citizen. I guess all I can do is take the pills and laugh at myself.

[chgomom]

well yeah....ya know...its not like I asked for it...*lol*

I would love to nothave any pain....I would love to be able to go out on a Friday night,...have a beer and some spicy bonless chick wings...then go to a movie have big bag of buttered popcorn....and wash it down with some.....ahhh you know...

Its weird...i think I said this before....I am happy I know....but at the same time....its just like ehhhh geez.....now. this kind of a thing...

[par18]

Soooooooo I went to my doc who is a researcher and expert in Celiac disease.

At the University of Chicago

Anyway...she took a look at me today....did the standard once over and right away was pull things like deficiencies....and so on from my symptoms...

Then she sends me for a STAT Dexxa scan...bone density thing...and showed that I have osteoporosis clearly in my spine and my hips showed osteopenia....

Sooo scared....anybody know anything about this.....anybopdy have this????

So she ran all labs again....and said its a serious problem and may mean IV supplementation....or a cocktail of supplements,,,,

Oy vey...

I had my one and only bone scan last year shortly after Dx for Celiac. I had not had any pain related to my bones. I was told I had the mild beginnings of osteoporosis. The whole time I was getting the procedure done the person doing it sounded like a salesperson for Fosomax (sp). It was like I had to start taking this medicine the next day. I had no intention of taking anything except a calcium supplement (Oscal) and a multi-vitamin. I feel fine and do my best to try to get as much nutrition as I can through my "new" diet. If I were in a lot of pain or did not respond to the gluten-free diet maybe I would feel differently but I think some of the people doing these tests are nothing more than extentions of the drug companies. I recall the area where the tests were preformed as being covered with the advertising of the various prescription drugs related to osteoporosis. I'll admit when I first left the testing site I was somewhat afraid but maybe that was the intention. I will get a follow-up scan done one of these days. Meanwhile I feel perfectly healthy and continue to be very active.

Tom

[CantEvenEatRice]

I am 28 years old also and have osteoporosis of the spine and osteopenia in other areas. Whatever you do, do not take the Fosamax or other drugs if you plan on having children. A lot of doctors do not realize that those drugs are only tested on post-menopausal women. The best thing is calcium and Vit. D. The good news is is that with diet and vitamins you could reverse some of the damage. I just had a recent bone density after my first one 3 years ago and my numbers were pretty much the same, maybe slightly better. No one believes me when I say I have it because they assume you have to be over 80. Hang in there!

[Suzie-GFfamily]

I'm scared too- the bone problems worry me sooooooo much more than anything else.

The diet is something I can learn and can live with. The damage in the digestive system can heal- but my bones..... that's another story. I'm still waiting to see an endocrinologist to discuss treatments.

I'm 38 and have osteoporosis in my spine too (t score of -3.4), and the t score for my hip was only 0.1 away from being in the osteoporosis range (= -2.4).

It's probably partly due to deficiencies- things like calcium, vit D, vit K, etc. But there is more to it than that. There is evidence that the imflammatory mediators can migrate from the digestive system to other parts of the body, such as the bones, and lead to problems with bone density. It's sort of like the bones become collateral damage in the war the immune system is waging against gluten in the intestines.

There are some research papers by Dr. Charles Bernstein that describe how gastrointestinal disease (celiac as well as things such as IBD) can cause bone disease. You can probably find these papers by searching a medical database like PubMed if you want to read about this in more detail.

There are also guidelines on osteoporosis in celiac disease published by the American Gastroenterological Association.

Open Original Shared Link

The reading I've done so far suggests that a gluten-free diet can lead to some improvement, but I don't know how much better my bones will get. I'm also breastfeeding my baby, which is something that is very important to me, but I worry about how this might be affecting my bones.

Another thing I've read is that celiac disease can sometimes cause osteomalacia. Apparently osteomalacia can look like osteoporosis on a bone density scan.... but I don't know what the difference is between these 2 conditions. Would the treatment be any different if I have osteomalacia? Would the prognosis be any different?

I'd love to hear from anyone who has been some experience with these bone problems, it's all very new to me, and very, very scary.

[chgomom]

This is all really good info, and its also really good to knwo I;'m not alone out there!

I'm not a grandma,,,,and it sure as heck isn't going to run the show....sheesh!

I am just so very glad I have a doc who wants supplements and longer on the diet before a pill for the bone issues....

[Kaycee]

I'm not a grandma,,,,and it sure as heck isn't going to run the show....sheesh!

chgomom

I really feel for you and everyone else who has osteoporosis. It is not fair.

I admire your positive attitudes, and the thoughts that this will not "run the show"

All the best

Catherine

[nikki-uk]

Cecile,have you had a Dexa scan yet???

[chgomom]

I asked my doc about these antidepressents and she said all they do by their very nature is make you not really "care" or pay attention to the problem. She said they don't help and they just mask everything. She also said anti-depressents are a leading cause of osteoporosis, as are um stuff like prednisone, anti biotic like tetractcline(sp), and there is new research showing even synthetic estrogen.

I dunno....like they say we can only control what come out of our mouths, and what we put into our mouths.

Until someone says there are no other options.....I'm sticking with no pills. I don't want to add to anything.

[Suzie-GFfamily]

I asked my doc about these antidepressents and she said all they do by their very nature is make you not really "care" or pay attention to the problem. She said they don't help and they just mask everything. She also said anti-depressents are a leading cause of osteoporosis, as are um stuff like prednisone, anti biotic like tetractcline(sp), and there is new research showing even synthetic estrogen.

I dunno....like they say we can only control what come out of our mouths, and what we put into our mouths.

Until someone says there are no other options.....I'm sticking with no pills. I don't want to add to anything.

I feel the same way. For some reason, a reason I can't even explain, I feel very much against any drug treatments right now. Maybe if there is a drug treatment that seems suitable for my bone disease and isn't designed specifically for post-menopausal women I might consider it. There are some warnings about using drugs which prevent calcium resorption from bone (eg Fosamex) in Dr. Green's book "Celiac Disease: A Hidden Epidemic" if you are newly diagnosed and your intestine hasn't healed yet. If you aren't absorbing calcium sufficiently from your diet (because of a damaged digestive system) it can be dangerous to prevent calcium resorption from bone. This could lead to a drop in blood calcium levels- and calcium is crucial for muscle function (this includes the heart) and for brain and nerve function.

I'm making adjustments to my diet that might help with bone building (more fruits, vegetables, beans, lentils, nuts and seeds.... luckily this works really, really well with the gluten-free diet ). There is some informaton about an alkaline diet on the following website by Dr. Susan Brown, as well as info about dietary sources of vit K:

Open Original Shared Link

Plus, I've been making more yogurt smoothies and I've been eating tin salmon a bit more often than I did before.

I'm also planning to start working on muscle strengthening by doing some weight lifting at the Y on their

variable resistance machines (eg Medex, Nautilus or Cybex). Increased muscle strength can lead to stronger bones. I've found some recommendations weight-lifting exercises in a book called "Stand Tall", with specific instructions for choosing the appropriate weight and instuctions for # of reps, etc.

Does anyone have the book called "Walk Tall: An exercise program for the prevention & treatment of osteoporosis" by Sara Meeks. I'd like to read this one but it's not in my local public library.

Suzie

[2wheels4eyes]

I am 29 and also showed that I had osteopenia a couple months ago when my doctor sent me for bone density tests. I've heard it can be a serious problem, but she told me to take calcium with vitamin D 3x a day. I have trouble remembering 3x a day, but I try and take it atleast twice.

I too, according to the almighty Dexxa scan, have osteopenia (I'm 29 too). I confessed to my dr. last week that I was having a hard time remembering to take calcium/D 4x/day (4 smaller doses to aid absorption). He said I was *way* better off doubling up doses than missing doses altogether. Just don't take it with iron supplements because these compete with the calcium for absorption.

The other thing is lifestyle-cigarettes, alcohol, also some medications are risk factors for osteoporosis.

[Robina]

Soooooooo I went to my doc who is a researcher and expert in Celiac disease.

At the University of Chicago

Anyway...she took a look at me today....did the standard once over and right away was pull things like deficiencies....and so on from my symptoms...

Then she sends me for a STAT Dexxa scan...bone density thing...and showed that I have osteoporosis clearly in my spine and my hips showed osteopenia....

Sooo scared....anybody know anything about this.....anybopdy have this????

So she ran all labs again....and said its a serious problem and may mean IV supplementation....or a cocktail of supplements,,,,

Oy vey...

Is there anyway possible for you to start doing some resistance training (w/ weights or machines)?

Resistance training has been scientifically proven to improve bone density...

[beaglemania]

"It sounds like you have an amazing doctor, can we all switch to her? One 12-year-old girl on this site replied to somebody else, saying that she had been diagnosed with osteoporosis already, which sounds like might have been the case with you as well."

That was probably me:) But I'm 14. I do have osteoporosis, now osteopinia, getting bone scan on Thursday, can't wait, hopefully in normal range now!!! And yeah, my doctor, along with the help of my diet, I have monthly infusions of a drug called, pymidronate (probably spelled wrong, but something like that) In fact, I actually had an infusion this morning!! Hopefully my last one, I've been taking it for over a year!! But it has improved my bone density incredibly. My feet and bones used to ache all the time when I was 12-13 yrs. oldbut now they don't at all!! So don't worry, there's hope!!! Adults can get pymidronate too, I believe. Its not that bad, though really annoying. But hopefully, that was my last infusion ever today!!

(Hope this makes some sense.) Anyways, good luck, and I hope your doctor can help improve your bones!!