<<Disclaimer: Verify this information before applying it to your situation.>>
I went to a naturopath who recommended the supplement strontium. My
physician looked it up and found many studies showing that it can be effective in
improving bones. I've only been taking it for a month, but I'm like you -
trying everything I can to avoid medications like forteo. I also doing more
weight bearing exercise. (I also waited 2 years, thinking it had to be
improving, only to find that it was worse. Very frustrating.)
I have a friend who was on Forteo and was taken off of it recently. It
really didn't help her too much. Now she is on Fosamax.
I have osteoporosis and was on Evista for quite a few years then the
docotr
added Boniva once a month. Howoever, my bones were getting worse instead
of
better so I went to a Osteoporosis specialist and asked him about Reclast.
He did a lot of tests and then said that I was a candidate for it. That
was
last April. That same month I had the Reclast, which is once a year. He
took me off of Evista and Boniva but you do have to keep taking calcium. I
went back to the doctor in November and he did a bone density. It turned
out that my bones are very much improved so I will go back this coming
April
and have Reclast administered again.
My mother has been on Forteo for 18 months. The biggest side effect? NO
PAIN. She was really suffering before but now her bones have strengthened and
she no longer has to take the injections.
Everyone is different. It may be that my mother just didn't have the
negative reactions but others do. I can ask her directly if you want.
Carolyn Ormsbee
As I read your note, I almost thought I had written it myself. I just had a
bone density 2 weeks ago, and mine isn't as good as I had hoped. I'm still
only at -3.2 though. I just refuse to go the traditional way, since I took
Actonel for 2 years prior to getting dx'd and getting off gluten. I did
improve from the initial -3.4 to -3.2 but had so many issues with calcium
depositing in wrong places (hand joints and optic nerve "pseudopapilledema"
that I'm now stuck with). My doctor isn't demanding, but he suggested the
Reclast IV infusion. I sure don't like the reviews on it either, as I am VERY
sensitive to "sin-"thetic "poisions." in the form of medical procedures
and prescriptions. I got off all Rx's and now I depend on alternative and
homeopathics for all my digestive and other health issues. I am also in the
process of starting on a new herbal supplement that my alternative health
adviser has suggested for building bones - in difficult cases. When I start
on it, I'd be happy to let you know what it is. I really feel like trying to
find the best alternative is MUCH better than taking a chance on getting
into a pain/damaged condition that I can't reverse. My family has't really
gone to the doctor in nearly 3 years, except for annual exams.
I took it with no problems. I took it for the full 18 months.
I had problems with Vitamin D deficiency while I was taking it (side
effect was severe pain in my joints - like when you have the flu), but Vitamin D
supplementation solved the problems I was having.
Hormones helped my ( cream and only bio-identical hormones) with an
anti-aging doctor. Then weights, walking and swimming as well as Oseo
Density BLEND by Lifetime ( I believe) and Magnesium drinks ( CALM) each
evening.
The trick I feel is getting the body to ABSORB the calcium.
My orthopedist can not explain why my bones were better last year than he
had seen in 20 years.
I think it was my drinking green tea, stopped eating red meat and actually
got off the synthetic hormones. I also started walking, LOTS. I started
raising Guide Dog Puppies for the blind so I had to get out several
times/day. (I've been raising the puppies now for 7 years) I also started seeing a
chiropractor 3 years ago.
I've had a total hip replacement, a revision and early osteoporosis/low
bone density. I am only 48 and have had these issues since my early 20's. I
was only diagnosed Celiac last fall, it explains a lot.
My bone density has increased, but it's hard to be sure just why. My gyn,
who may be the very best doctor I've ever had (very rigorous scientifically,
very smart, listens carefully, well thought-of by patients as well as
colleagues....can't say enough for her) is not very much impressed by my
improved numbers. "I don't believe in regeneration", she says. She didn't
mention my age (I am 67) but I'd bet she was thinking I'm a little old to be
building new bone.
It's important to note that the bone density scan is just a measure of
what we know how to measure. It is not necessarily an indication of bone
health, but doctors don't know how to measure other variables. Bones can be in
quite bad shape and still measure as dense.
That said, my numbers at the hip have improved from osteoporosis to minor
osteopenia, and my spine number is now NORMAL! At the very least, it's good
that I haven't lost ground.
My approach is lots of exercise, enough to raise a good sweat: aerobics,
weights, balance, isometric, more weights. My routine is an hour a day, four
days a week. My diet is heavy on fruits and vegetables and light on meat
and fish. I eat a fair amount of whole grain in the form of Lundberg rice
cakes.
My hypothesis is that even years after blood tests showing no antibodies
and a follow-up endoscopy showing complete healing, small changes continue to
happen and the ability to absorb nutrients...trace minerals, for
instance...continues gradually to improve. Peter Green, who is my Celiac doc,
agrees that even the completely healed Celiac gut is unlikely to be perfect. My
gyn. thinks my hypothesis is plausible: if absorption improves over time,
then maybe there can be some bone rebuilding.
Bone building and re-absorption is cyclical. The trick is to make the build
part of the cycle match or surpass the reabsorption part. Apologies to
doctors and scientists...my explanation probably leaves a lot to be desired.
But roughly speaking, if lack of nutrients have cheated the build cycle,
then their introduction, via a better-healed gut, might help it. In any event,
the reabsorption outstrips the build part of the cycle as we get older.
The overwhelming fact, though, is that Celiac is a highly variable
condition, and what works for one of us does not necessarily work for others.
Excercise can't hurt, though. Nor can green vegetables.
Everyone is different, of course.
I am 66, female, caucasian, celiac. Live in NY City.
I have refused to go on the osteo drugs.
I follow a very strict regimen 3-4 times a week of exercises
specifically designed to stregthen my spine, hips, wrists etc.
It is time consuming and sometimes painful.
I also follow a very strict diet which includes quarts and quarts of
goat yogurt each week, calcium citrate , D3, TRACE amounts of estradial.
I eat huge amounts of fresh swiss chard or other greens on the same
level.
Also consume large amounts of high quality salmon (fresh and canned).
I eat no sugar, drink no coffee or alcohol, I eat no processed foods
(at all except an occasional potato chip, salt free), eat a virtually
salt free diet.
I believe the special exercises, weights (again in tamdem with the
exercises), swimming, walking, along with diet, D3 and calcium has
not only kept me from slipping, but I have shown a slow but steady
increase over the past three years on the same scanning equipment.
Good timing. I didn't want to start taking forteo because it's an
injection.
My prednisone from asthma is making my progress evaporate, so I need to do
more than Evista, calcium/mg/D3 supplements and exercise.
I was just pre-certified (insurance) to start Boniva infusions (every
three
months). I'm absolutely terrified, but like you, my numbers got worse very
suddenly, probably related to my struggle to absorb Vit. D.
Good luck with the Forteo. My OB/GYN, rheumatologist and endocrinologist
all
suggested Forteo. When I said no to needles, they suggested Reclast, but
that's a 1x a year infusion, which has higher side effects, so I asked
about
the Boniva...lower dose, less side effect. They all said yes, but I'm
still
scared.
I would like to thank everyone for all the advice, as you can see I had
many responses and hope this helps everyone. I'm not a computer genius, so I
hope this worked.
I had my apt with specialist and am having blood work done. She
recommends Forteo, because my bones keep getting worse. she said that after
menopause our bones drop for awhile but then they should stabilize, but mine don't.
So that is probably what I will do, I just pray this all works out.
Thanks again to everyone and if you would like to e-mail me personally,
that would be fine
* Send administrative questions to mailto:[log in to unmask] *
Archives are at: Http://Listserv.icors.org/SCRIPTS/WA-ICORS.EXE?LIST=CELIAC
|