Newly Diagnosed Osteopenia

[cmom]

I was diagnosed with osteopenia yesterday. I believe my T score was -2.35. At what point do they switch the diagnosis to osteoporosis? My doctor said I was a special case b/c she doesn't treat people my age (46) for this. Normally it is senior citizens. She said the celiac was the culprit due to malabsorption of calcium. She gave me 3 choices of medication. Actually 4 but I do not want to start estrogen/hormone replacement. Choices are: Evista, Fosamax, and Actonel. She didn't know if they were gluten-free. Any advice you can give me would be greatly appreciated. Supposedly, I have the bones of a 65 year old and am at the fracture line. Am interested in side effects you have experienced with the above, etc. Also, must begin a calcium/vitamin D regimen of 1,000-1,500 mg per day. What brands do you recommend. I have to let her know what med I want to start with. She is giving me time to decide. I anxiously await the advice of the experienced! Thanks.

[Nevadan]

Hi Robin,

I was diagnosed with osteophorosis 5 yrs ago at age 54 after my much older brother was diagnosed. I first did the wrist scan at a local drugstore during osteo awareness week which showed low density; I subsequently requested a DXA bone density scan which confirmed it. I am not celiac and don't have the genes to become celiac (no DQ2 or DQ8); however I have the DQ1 gene for gluten sensitivity. From what I have been able to research on this matter, it appears that just being gluten sensitive with DQ1 and consuming gluten even without celiac somehow interferes with the absorption of various nutrients such as calcium, so I suspect this may account for my osteo even though there are many other things that can cause it. For many yrs I've been borderline anemic as well and am looking forward to checking this again via blood testing after being gluten-free for a little longer (gluten-free for 2 month so far). Since osteo is such a slow responding disease, I'm not sure how long it would take before an improvement would show up; meanwhile, I'll continue the Fosamax.

Re the difference between osteophorosis and osteopenia, according to the Mayo Clinic website, T>-1 is normal, T<-2.5 is osteophorosis, and T between -1 and -2.5 is osteopenia. I have been taking Fosamax (one 70 mg tablet per week) and found a list of gluten-free prescriptions drugs indicating that it is ok. I take 600 mg of calcium/vitamin D daily; I take Caltrate brand and it's list of contents look ok. There is a cheaper brand, "Today's Health" available with the same amount of calcium/D but it's contents specifies "gluten", so beware.

Good luck.

George

[cmom]

Thanks, George. I appreciate your response. I had various tests done for different ailments and suspected anything but this. I was surprised but will take your advice. Thanks, again.

[tasha]

My doctor said I was a special case b/c she doesn't treat people my age (46) for this.  Normally it is senior citizens.

Hehe don't worry you're not the only one! I'm 20 and i just got diagnosed with osteopenia last week. I was told to have 1500 mg of elemental calcium daily. I use the Jamieson vitamin brand for my calcium supplement and also take a multivitamin daily (Quest brand) that has calcium and vit D in it too. Both are gluten free.

I don't take any medication, only the supplements so I can't help you with the other stuff. The doctor did strongly encourage me to do resistance exercise --walking, weight lifting, etc. (basically anything but biking or swimming) to help out the bones. Hopefully that will help too.

Good luck with everything!

[cdford]

I am 46 and have been dealing with it for several years. I was told to take calcium supplements with magnesium and vitamin d in them. I would do the exercises but that is a problem from a wheelchair. After a year and a half of being gluten-free, my numbers have begun to climb again. Hopefully yours will as well. I am hoping to avoid yet another medication.

[tarnalberry]

It's been found that, for celiacs, getting a magnesium supplement is important as well, so you may want to ask your doctor or look into that. (Magnesium is important for the proper use of calcium in bone formation and most people - even on a healthy gluten-free diet - don't get enough.)

[cmom]

Thanks guys for the responses. I appreciate them all. I knew I wasn't alone.

[WRowland]

It's also important to address calcium balance. Google this.

[kevsmom]

I also am 46 (Is this a magic number?) I am on Foxamax. My doctor told me that this medication actually can reverse bone loss. You may want to talk to your doctor again, or see another doctor for more advice. You may not want to ignore something that you can actually do something about.

Good luck!

[tarnalberry]

Also, must begin a calcium/vitamin D regimen of 1,000-1,500 mg per day.  What brands do you recommend.

<{POST_SNAPBACK}>

On the vitamin front, I recomment Rainbow Light's Food Based Calicum. It is gluten-free (and CF and the rest), and has, per tablet, 500mg calcium citrate (the more absorbable form), 250mg magnesium (vital - particularly for celiacs - for bone health; some studies suggest that, for celics, magnesium is more important than calcium), and 100IU Vit D3 (the more useable form).

[shimma]

I have osteopenia (I'm 27) and the doctor who diagnosed it recommended calcium and magnesium. My latest doctor though said that calcium should always be taken with vitamin D to increase absorption, which I hadn't heard before. So I take all three just to be sure. I get my vitamins from Whole Foods and Trader Joes, which are good about labelling their gluten-free products.

[elisabet]

It's been found that, for celiacs, getting a magnesium supplement is important as well, so you may want to ask your doctor or look into that. (Magnesium is important for the proper use of calcium in bone formation and most people - even on a healthy gluten-free diet - don't get enough.)

<{POST_SNAPBACK}>

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can a blood test show the lack of magnesium?or no matter what the blood tast says people with celiac disease need more magnesium?

[floridanative]

I've been playing phone tag with my doctor regarding my bone scan for a week so today in the mail arrives a letter from her. I have osteopenia as well - I'm almost 43. What a drag, guess I'll be trading my iron, folic acid and b-12 for magnesium, vit. D and some calcium prescription. Thanks to all above with the good advice....doc only mentioned the vit. D and calcium....not the magnesium but I did read about that in a Celaic book somewhere.

[ravenwoodglass]

In addition to the supplements recommended make sure you do some weight bearing exercises also. I have osteoporosis, it was diagnosed about 3 years ago. I've mainly done diet and exercise changes, I didn't like the possible side effects of the drugs. I'll be getting another scan soon and hope I haven't lost any ground. On the bright side I have overly flexible joints and those usually go before my bones

[flagbabyds]

Hehe don't worry you're not the only one! I'm 20 and i just got diagnosed with osteopenia last week.

NO ONE can beat me on this one, diagnosed with osteoperosis when i was 11

[trents]

There is also a parathyroid hormone simulating drug for bone building called Forteo. It is administered by daily injection and is quite expensive. Can be the ticket for folks who don't respond to the orals like Fosomax or can't tolerate them from an upper GI perpective. I have osteopenia. I'm 56. I was on Fosomax for about two years but took myself off recently because I suspected it was causing bad morning headaches. Dexascans didn't show it was helping much anyway.

Steve

[nikki-uk]

NO ONE can beat me on this one, diagnosed with osteoperosis when i was 11

Oh my gosh Molly,you really have had more than your fair share of medical problems!

My husbands results for his dexa came in a couple of weeks ago (he's 42yrs)-it showed Osteoporosis (not sure what the score was)

He has been on calcium/magnesium supplements since his celiac disease dx-but now has to take Actonel once a week too.

So far no side effects -but he does have to stand upright for 30mins after taking Actonel as it can cause ulcers in the upper G.I tract (that's what it tells you to do on the packet!!)

Gentle exercise is also supposed to help strengthen bones.

As my hubbie also has arthritis,and can be very stiff and slow,I am worried in case he has a fall-I'm sure bones are made of stronger stuff though !

[floridanative]

Wow Molly - yes I think you won this one!!

I have a question for those of you who understand bone scan results since I do not. I had three scores ranging from -.9 to -1.6. My GI doc told me to take Oscal D, 500mg and that I did not need an rx. I don't want an rx but I also don't want to be taking something otc that is not strong enough to help me keep from getting osterperosis. Thoughts anyone? I'm seeing my pcp next week so I'm going to get her thoughts as well to see if she agrees with the GI or not.

[powderprincess]

I'm in the club now, whether I like it or not. Had a bone scan last Wed. Doc called this morning to tell me to take 1500mg of cal a day because I've got osteopenia. I don't know the results in detail; they'll mail them to me. Just turned 28 a week ago. Happy birthday to me.

I guess it's good to know now and try to reverse it. I would have never guessed until being dx with celiac. I never ever drink soda, have had oj with calcium since it's invention, I eat spinach, from age 16 until recently I would regularly lift weights, used to run competitively (running hurts now). I used to be careful and actually work on not giving myself an eating disorder or poor body image, I was around that stuff a lot. Thought I was doing things correctly, little did I know about the gluten.

arrrrrrrrr.

Sorry to hear you were dx at 11 Molly! Have you made progress rebuilding bone mass? Has anyone?

[lindalee]

It's been found that, for celiacs, getting a magnesium supplement is important as well, so you may want to ask your doctor or look into that. (Magnesium is important for the proper use of calcium in bone formation and most people - even on a healthy gluten-free diet - don't get enough.)

So true about the magnesium. Did anyone read my thread on Ipriflavones? LindaLee

[NicoleAJ]

I'm 27, and I also have osteopenia. I'm starting Fosamax tomorrow. Does anyone have any comments on whether or not it has rebuilt your bone mass and whether the side effects are worth it?

[CaraLouise]

I'm 22 and have celiac, but have been on a gluten-free diet for almost 4 years and just had a bone density test today. my numbers were -1.7, -1.7, and -2.1 so I definitely have osteopenia. I do exercise and weight-bearing exercises already. I started taking a calcium citrate supplement tonight. I have read that Fosamax (sp?) is not good for celiacs. Does anyone have any good ideas or advice on what to do??

[Ursa Major]

One of the side effects of Fosamax is necrosis (rotting) of the jaw. Not a nice idea.

I believe the way those meds work is, that they prevent the bone from renewing itself. It won't get rid of the old cells, but just adds new ones. The problem with this is, that even though the bone looks denser on the scans, it is also more brittle and more prone to fractures.

It is much better to take appropriate amounts of vitamin D, calcium and magnesium. In fact, low vitamin D levels are usually the culprit, as your body can't convert sunshine into vitamin D when your villi are damaged. If you can't make vitamin D, you also can't absorb calcium and magnesium.

All of you need to have your vitamin D level checked, as well as your calcium and magnesium levels. The best (and most natural) way of getting your vitamin D levels up is by taking cod liver oil (the Carlson Brand is the best, and doesn't taste bad). Also, it might be a good idea to take a supplement that has a 1-1 ratio of calcium and magnesium along with vitamin D.

Osteopenia is reversible with the above measures along with weight bearing exercise and a gluten-free diet, and osteoporosis can be halted and in many cases (depending on age) also reversed, without any drugs.

[DingoGirl]

One of the side effects of Fosamax is necrosis (rotting) of the jaw. Not a nice idea.

oh my gosh, I just started Foxamax yesterday.......and could have chosen Actonel if I'd wanted....but didn't know.

Well, I am 45, have SEVERE and increasing back pain (decades now), so last week had spinal xray, which revealed advanced degenerative disc disease (bone scraping bone all over the place), and advanced arthritis in lower, middle and upper back. The pain is getting so severe I am really struggling to do normal things.....and I was an extreme weightlifter for 20 years. Also a very avid technical climber for many years, and an obsessed gardener....things got quite bad in the last couple of years as I dug and dug and dug more holes after moving into this place, with hardpan clay soil....I have ruined myself.

So a few months ago I joined a (climbing) gym again, I was ecstatic, been lifting weights, and I just started doing a bit of gentle climbing and jumped off the bouldering wall two weeks ago - - STABBING spinal pain and I was flat on my back for nearly a week.

Tomorrow, two MRI's of spine, lasting 40 minutes each....in that slim tube.

Bone density scan revealed medium-risk bone loss......

Can anyone offer hope that things MIGHT get better? I am absolutely grief-stricken, since I"ve gained my strength and vigor back after being gluten-free for 18 months, and now my doctor tells me I have the back of a 90-year-old......

I am hoping for surgery.

[Ursa Major]

oh my gosh, I just started Foxamax yesterday.......and could have chosen Actonel if I'd wanted....but didn't know.

Well, I am 45, have SEVERE and increasing back pain (decades now), so last week had spinal xray, which revealed advanced degenerative disc disease (bone scraping bone all over the place), and advanced arthritis in lower, middle and upper back. The pain is getting so severe I am really struggling to do normal things.....and I was an extreme weightlifter for 20 years. Also a very avid technical climber for many years, and an obsessed gardener....things got quite bad in the last couple of years as I dug and dug and dug more holes after moving into this place, with hardpan clay soil....I have ruined myself.

So a few months ago I joined a (climbing) gym again, I was ecstatic, been lifting weights, and I just started doing a bit of gentle climbing and jumped off the bouldering wall two weeks ago - - STABBING spinal pain and I was flat on my back for nearly a week.

Tomorrow, two MRI's of spine, lasting 40 minutes each....in that slim tube.

Bone density scan revealed medium-risk bone loss......

Can anyone offer hope that things MIGHT get better? I am absolutely grief-stricken, since I"ve gained my strength and vigor back after being gluten-free for 18 months, and now my doctor tells me I have the back of a 90-year-old......

I am hoping for surgery.

I should have said POSSIBLE side effects. But nevertheless, it is devastating for the people it hits. I don't know how high the risk is, but for something like that, any risk is too high.

I am sorry your back is that bad. Chiropractic may halt some of those problems, but I am afraid that nothing can fix your back, it is probably too late for that. I hate saying it, as I would love to give you hope, but the truth is the truth. I don't know if surgery would help, either. Maybe fusing your vertebra?

It wouldn't help your poor nerves going through your spine (they are probably in bad shape, too), but it would stop your bones grinding against each other.

I really hope that something can be done for you. To have that bad a back at your age already must be devastating.