<<Disclaimer: Verify this information before applying it to your situation.>>
Hi to all, First, thanks to all who responded to my questions. Your
information was extremely helpful and almost all of you told me the same
things. I enjoyed reading your stories, and wish that I could of replied
to all of you, but I received over 45 replies. Here is what I asked........
"Could someone tell me what a bone density test consists of? Are there
different types of testing? And perhaps one method is more accurate
than another? Do they check the density in just one area? Are the
results objective?....like 77%? Or are they subjective?...like "You
show some signs of osteoporosis." Do I need to drink any special dye or
take any medication to have the test done? I am 41 years old. How
should the results read for me...what is the average % for a 41 yo
female that has strong bones?"
And here is my summary followed by some of your replies...
1. 99% of you said to GET TESTED and said that everyone that has CD
should have this test done.
2. The test is very simple. It is similar to an X-ray. You need not
drink anything before hand or prepare for it in any way. You can keep
your clothes on so long as you don't have any metal snaps, zippers,
etc. You climb onto a table and then the machine scans your hips and
spine area. You may need to turn on your side.
3. Most recommended getting the hip and spine done and that there is a
less accurate test that can be done of the wrist or ankle (you don't
need to climb on a table for the wrist and ankle and it is sometimes
offered at supermarkets during a health day awareness). Very few
recommended getting the wrist or ankle test because it's just not as
accurate. Same holds true for a finger test that can also be
done....not very accurate.
4. The results are objective and will come back in % or as a decimal
(like 1.0), but you need to ask the Dr. to explain the results or ask
for the results to be sent to your home (or both). The Dr. will explain
what is normal for your gender and age.
5. Besides the objective results, the Dr. may say that because of the %
that you have osteoporosis which is more severe or be at the stage just
before this which is called osteopenia. The 3 stages are Osteoporosis,
Osteopenia, or Pre osteo...
6. Your Dr. will recommend calcium supplements as he feels appropriate.
Some of you take calcium supplements, Fosamax, Miacalcin nasal spray,
and Citracal/day.
7. You can't feel osteoprosis, so it's important to have the test done.
You may feel stong, but then you walk along and one of your leg bones
just breaks.....then your tested and it doesn't look good.
And now for some of your replies (I only chose some because you tended
to consistently say the same things, which is a good thing).
Pat in USA
PS I called to schedule my test and will let you know how I make out.
*************************************************************
DEXA testing(the most thorough)takes just a few minutes in a
radiologist's office. You lay on a table and a bar passes over you. The
most thorough type tests check spine and one hip. If just the spine is
checked, there can be a misdiagnoses is arthritis is present. Some
shopping center portable tests will just check a wrist.
The tests are objective and the results are given as the % and standard
deviation for your age group and sex. For woman, they ask about period
history and if you are in menopause, etc.
**************************************************************
I had one done shortly after I was diagnosed with cd. Showed some bone
loss in the pelvis. I had one done recently (3 years later). All areas
are now within normal range for my age (53). So going gf and exercising
worked for me.
*************************************************************
I fell and broke my leg one year after diagnosis, (I was 58 at
diagnosis) and the leg broke into a million pieces, tibia, fibula. I
destroyed the tibial plateau, where the knee rotates, which required a
knee replacement after the break healed. It took a very long, 8",
titanium plate and several screws to put the leg together to heal.
After the knee replace, and after having been in that cast for 4 months,
I had minimal range of motion in the knee (a straight leg, basically)
... so I went in two months later and they anesthetize you, manipulate
the leg to break through the scar tissue. Whenever they tinker with the
knee, it goes to building scar tissue. Well, in the process, my femur
broke just above the knee appliance. Since the femur is the largest
bone in the body, and very very hard to break, they figured I had a
problem.
Osteo is not visible to the naked eye ... looking at the broken end of
a bone will not show it. So, they sent me to the endocrinologist, as
his firm had one of the few dexascan machines in the US at that time.
(1996) I had severe osteo. Have been on Fosamax ever since and now have
normal bone density.
*****************************************************
I had one last year when I was diagnosed with celiac disease at age 48.
My results were "normal for my age". I do take calcium - 1000 mg per day
by supplement plus whatever I eat or drink in foods. This is the normal
recommendation per my OB/GYN and my gastro is in agreement.
*****************************************************
My initial numbers were -2.6 and -2.7. After only one year of Fosamax
the latest numbers are -1.1 and -1.6, which means I'm no longer
osteoporotic, but now have osteopenia. Dramatic improvement. Looking
forward to next summer's test. I'm now 53, female and was tested 2
months after my DX of CD. I think I had CD all my life, so I probably
got little benefit from many things I ate.
********************************************************
My results were within normal limits, much to my surprise and relief.
This year, I just had the heel screening. I had to take one shoe off,
and it took just a few seconds for the scan. The results were again OK. :-)
Not bad for a 57 y.o. woman who's only been gf 3 years!
I've always loved milk and dairy products, in spite of my mother telling
me I couldn't absorb calcium since I was a kid. (She blamed lots of my
tummy troubles on drinking too much milk; we didn't know a thing about
gluten.) I must have been absorbing enough in spite of the condition,
plus my work has demanded a lot of physical activity, lifting, and
walking until quite recently. I'd better not let my current sedentary
job let me get out of shape! And I've had to give up milk and dairy too
:-( so I'm trying to take supplements and drink fortified soy milk instead.
*************************************************************
My doctor stated on the results the first time I had it that, "there was
some bone loss," and actually called it osteopenia. My doctor put me on
1500 mg of calcium a day plus D. A year later, another bone scan showed
no additional bone loss, so the supplements are working to keep it from
getting worse.
**************************************************************
I'm a 43 year-old female and was biopsy diagnosed 8 years ago. I've had
2 bone density tests. My doctor schedules me for bone densitometry every
2 years. As far as the results go, I never actually asked percentages,
but was told I was slightly under normal range in the lumbar spine
(osteopenia, i.e., softening of the bones).
***********************************************************
It gives you a rating 1. is the norm for a 40 year old woman. Another
above is great...anything below is not so good. At 57, mine was a 1.50
which was excellent and due to my walking a great deal.
***********************************************************
My daughter has celiac, 26 months now, In January her new peditrican did
a bone density test, cuz I took her we were always concerned about her
petiteness, so they did an xray of her hand, and the results came back,
her bones were at a 9 month old when she was 17 months old at the time,
now her specialist ask if they did the xray of her knee, so I don't know
if they check everyone the same way or not.
*************************************************
First was routine cuz I was 50. It showed severe osteoporosis. I had
not yet been diagnosed with CD. The next year it showed no improvement
although I was put on HRT and calcium supplement (still not diagnosed
with CD). The last one showed 27% improvement in bone density and an
upgrading from osteoporosis to osteopenia, with recommendation that the
test be repeated in 2 years. I had been diagnosed with CD by then, and
obviously, being able to absorb the calcium I was ingesting made a big
difference.
Since my DR (bless his heart) thinks there is no reason I should not
have normal bones (and I strongly agree), I am currently on HRT and
Didrocal (bone metabolism regulator). He suspects I should have normal
bone density in another year or two. My bones did hurt before, but I
thought it was just because I had turned the dreaded 50. My bones do not
hurt now.
I'm 55, female, biopsy diagnosed almost 2 years ago, and am totally
convinced I had osteoporosis only because I had CD and didn't know it.
********************************************************************
I'm 47 female and live in England. I was born with celiac disease but
my gluten free diet was stopped at the age of 10 on the advice of my
doctor. I resumed a gf diet at age 38 when I was getting digestive
problems and severe anaemia. I had a densa scan on my hip and wrist two
years ago and was told I had lost 14 percent of my bone density. I am
keeping to a strict gluten free diet now and hoping things will improve.
I don't like dairy products ( they upset my digestion even more) so I
eat almonds, tinned fish and green vegetables for my calcium and in the
past few months also take a calcium tablet 800 mg daily.
********************************************************************
I was undiagnosed for celiac for 10 years, and I have severe
osteoporosis.
I fell in 1991 when I was 62 years old and broke my left hip off just
below the ball socket. I was visiting in Spain at the time, and I had
to have a prosthetic replacement which was cemented in because my
orthopedist told me I had osteoporosis because my bones (from his x-
rays) were like that of a woman 85 years old. With osteoporosis so
severe there was no possibility that I could grow new bone into a
prosthetic replacement. When I got back home, I went to the bone health
clinic and learned that my osteoporosis was so bad that I am just 4
points above the spontaneous fracture line, meaning that if I loose more
density and reach that line or go below it, I could have a vertebrae
fracture from bending over to pick up a piece of lint on the floor.
There is absolutely no way that you yourself can tell whether you have
osteoporosis or not because there are no symptoms etc. until you
fall and break a bone.
****************************************************************
I too (female) have been gluten free for two years but on a recent bone
density scan I found out that I have osteopenia-not quite at the level
of osteroporosis.
**************************************************************
I am a male, 49 yo, and had a bone density test done two years ago. It
came back that I have osteoporosis. I have been on a gf diet for 25
years and have regularly taken supplements (although not additional
calcium) and drank milk daily. For the past two years, I have been on
high doses of calcium and vit. D. My doctor said that if this years
dexa scan does not show more improvement, then he will consider Fosomax.
*******************************************************************
I have had two done, about 3 years apart. Mine showed slight improvement.
I'm 47.
*****************************************************
I was diagnosed with CD at 40; had my first scan three months later. It
was bad - severe osteoporosis for my age. A year later after being GF
for about 15 months, I had my second one. It showed major improvement!
Only minimal osteopenia in two locations. This was all with a GF and
vegetarian diet (with no milk), and supplements. I am now the same age
as you and before I had the second bone scan, my new doctor wanted to
put me on Fosamax. I'm not thrilled with meds so I requested the scan
first. Lo and behold, now I don't have to take Fosamax! I am hoping
for continued improvement at least until menopause.
*******************************************************
I had one done in Dec. 1999 (age 48) after being diagnosed as celiac. I
was shocked to find that I have mild bone loss in my hips (1.44 standard
deviations below the mean). My spine and forearms were normal.
Thankfully, for many years of my adult life, until age 43, I jogged
several times each week, and have always worked out. Since age 12, I
have not been able to tolerate dairy products.
***********************************************************
One of the first things I had done following my diagnosis of CD (about 5
years ago) was a bone density test. The doctor said that then I had the
bones of a 70-year-old (I was about 50 at the time).
******************************************************
at age 35, three years ago, i had a bone density test in which you lay
on a table similar to an xray table, and the machine scanned my left
leg, hip and lower back.
in May of this year, now 38, I had the quicker method where you put your
foot, up to the ankle, into a water bath device which reads the bone
density.
In neither test do you drink any dye, or feel anything at all. Both
take about 5-7 minutes.
Both results were the same for me, showing about a 28% bone loss.
Yikes!
But I did have a complete hysterectomy at age 28. I am not celiac, my
husband is.
Seems like both tests work the same, since my results were almost
identical.
By the way, my celiac husband, diagnosed last October, had normal bone
density, the bum!!!
*********************************************************
I did a lot of sports as I grew up and ate well. However when I took
the test at age 56, having gone gluten free the previous month, both I
and the endocrinologist were amazed to learn that I have osteoporosis.
She couldn't believe it particularly because I was gaining 5 pounds a
month on this diet.
I now take Fosomax every morning and then go through my e-mails (as I am
doing right this minute) and then go to the gym for an hour - aerobic
and weights, the latter being almost demanded by my internist.
***********************************************************
I had a 27% bone loss at diagnosis. After 1 year, 1200 units of
Citracal daily and Mycaltrin nasal spray, I only have a 3% bone loss. I
have had a total of 3 scans to see the progress.
*************************************************************
I know what I speak of!!! I broke my hip, spine and pelvis at the age
of 47. That is how I found out I had osteoporosis!!! Not a good way to
find out. I tripped on the side walk while out walking!!! Osteoporosis
now colors my life in everything I do. It is painful at times and always
very scary!!! I am now 52 . I take Fosamax , Miacalcin and estrogen.
I went gluten free at the age of 40 but so many years of malasorption
had drained my bones of calcium. PLEASE start taking calcium again. I
use One-a-Day's Bone Strength. It is gluten free and does not upset my stomach.
I have tried hundreds and most of them make my stomach upset or
constipate me.
*************************************************************
I am 71 yrs old. Had two bone density tests 10 months ago when I was
diagnosed. One gave me just the results that I had osteoporosis,
severe.
This was done with an ex-ray of the hip area only. I was told to
continue estrogen take Fosamex and to take calcium, vitamin d etc. The
second test was done as part of a study being conducted on Celiacs only.
They took two ex-rays, one of the spine and one of the hip. They gave
percentages of remaining bone in each area. My spine was at 73% (not
too bad) and my hip was at 59% (very bad). The diagnosis was the same
and the prescription for improvement the same.
*********************************************************************8
Both my husband (the celiac) and I had Bone Density scans last fall.
They are completely painless. You just lay on a table and the machine
passes over your body -- no dyes, nothing to drink, etc.
Within a couple of days, we had the results. Mine was ok, but his
showed some low bone mass in some areas of his body. He was
undiagnosed/misdiagnosed for at least 18 years that I know of. He is GF
for 1 year now and taking Citracal D and Miacalcin nasal spray to
rebuild the bone. He also takes Freeda QuintabM multi-vitamin
-- infact, we both do. he is almost 59 and we are sure that his
results of low bone mass were because of misdiagnosis for so many years.
******************************************************
I had a bone density test about two hours ago. It was a followup to the
one I had a year ago, which showed I had osteopenia (bone loss
intermediate between normal and osteoporosis). I have been on Fosamax
and calcium for the last year, and the test this morning was to see if
they've had any effect. I am a 54 y/o male. My internist tells me that
low bone density in a male my age is EXTREMELY rare. As I told him-
"except for celiacs".
****************************************************************************
Mine came out normal. I think so because I didn't get real sick until I
was 29 and I had almost always take calcium tablets.
**************************************************
I gained on the 2nd/improved and then on this last one I didn't, infact
it was worse. So, I've been good about doing weight bearing exercises,
1500 mg calcium, 500 at a time as thats all the body can absorb, and my
internist put me on miacalcin nasal spray as well. Coffee is said to
cut the effects of calcium, and as I have Barrotts Syndrome, I now only
have one + each morning. I used to drink about 3-4 glasses of wine and
now its perhaps 2 and am going for only one each evening. I eat
broccoli, and have a least a cup of yogurt w/ a banana at lunch most
days, etc. Am making myself have cereal each morning with milk and
alittle flax on top, etc. plus I purposely eat foods that have calcium in them.
***************************************************************
I am 45 and started having auto-immune problems since age 15) I have no
symptoms from the osteo. I take Fosamax. My dx of celiac came about
because I failed to respond to the ++calcium intake and Fosamax therapy;
the osteo had stayed in my hip bone - no better no worse - and it had
not spread to the lower lumbar region of my spine The rheumatologist
said failure to respond to therapy is sometimes due to undetected celiac
disease - she had other patients who boned up after switching their
diets to gluten-free. I still take Fosamax, ++ calcium, and I am now on
a gluten-free diet.
*********************************************
I am 44 years old and have been a Diabetic for 39 years and
a gluten intolerant for 5 years.
I first had a bone density test 3 years ago because I broke a bone in my
foot by stumbling and coming down hard on my foot. I just babied my foot
and limped around, thinking I just pulled a muscle. Well, I was walking
and heard a loud "snap" in my other foot. I could hardly walk. I went to
the Dr. and found that I had a hairline fracture in the first foot and a
complete break in the second. I got a cast for 8 weeks. When the cast
came off, the bone had not healed a single bit!! My Dr. sent me for a
bone density test and he said the results showed that I had "severe"
osteoporosis. He feels that long term Diabetes along with my gluten
intolerance brought it on at an early age. I now take Fosamax, which
helps build your bone denisty, but is very slow. I have had bone
density tests every year since and it is showing improvement. I never
knew I had any problem before breaking my bones. I feel very fortunate
that it was my feet, not my back or hips!!
***************************************************************
I am a 44 year old female, diagnosed one year ago and insisted on a
bone density scan so that I could fully assess the damage to my system,
not knowing how long I was undiagnosed. I showed osteopenesis (a
precursor of osteoporosis). My doctor explained to me that osteopenesis
means that though I have the mechanism to produce bone mass, it wasn't
recieving the calcium....so that when I went GF and my intestine started
to absorb again, I should start producing bone again.
***********************************************************
I just had a bone density test done. I was diagnosed celiac three years
ago - but was diagnosed with osteoporosis about 10 years ago. I had
suffered a back injury (crushed vertebrae) several years previously and
was having some back pain, so saw a bone specialist. He did an MRI to
check my back and told me that the MRI had shown that I had "some
osteoporosis". I was already on Premarin (estrogen replacement therapy)
and my Gyn doctor told me to increase my calcium supplement to at last
2400 mg per day, since at that time I smoked and smoking seems to prevent
the body from absorbing calcium the way it should. I quit smoking 6
years ago, but had never changed my calcium intake. Then when I was
diagnosed with celiac three years ago, my GI said to continue with the
calcium. Both my Gyn and GI suggested I get a bone density test to see
where I stood, since osteoporosis is a worry with celiace. my test had
come out so much better than he had thought it would. I have some slight
signs of osteopenosis - which is, I assume, not as bad as osteoporosis.
He told me to continue what I'm doing - the estrogen replacement therapy
and the high doses of calcium. I don't even exercise very much - and am
overweight by about 40 pounds.
*****************************************************************************
On my first one, I got 87 per cent and they said that was good for my
age (I was just starting menopause). My second one was lower but I
don't know the per cent. It was not so good and my doctor told me to get
extra calcium.
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