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BoydBT

Fosamax

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I tried to take this for my osteopenia but I felt flu like, and generally bad. When I started to read about the drug there are all kinds of serious side effects so I stopped taking it.

Any opinions?

I am taking Jarrow Formula Bone Up instead and have no SE's with this. It lists as such

Supplement Facts

Serving Size 6 capsules

Servings Per Container 40

Amount Per Serving

Vitamin C (as ascorbic acid)

200 mg

Vitamin D3 (as cholecalciferol)

1000 IU

Vitamin K1 (as phylloquinone)

100 mcg

MK-7 (vitamin K2 as menaquinone-7)

10 mcg

B12 (as methylcobalamin)

100 mcg

Microcrystalline Hydroxyapatite (MCHA)

4762 mg

Calcium (from MCHA)

1000 mg

Phosphorus (from MCHA)

510 mg

Protein (from MCHA)

1514 mg

Magnesium (as magnesium oxide)

500 mg

Zinc (as zinc monomethionate)

10 mg

Copper (as copper gluconate)

1 mg

Manganese (as manganese citrate)

1 mg

Potassium (as potassium citrate)

99 mg

Boron (as boron citrate)

3 mg

Other ingredients: magnesium stearate (vegetable source), and silicon dioxide.

Contains soy.

No wheat, no gluten, no dairy, no egg, no fish/shellfish, no peanuts/tree nuts.

All of these seem like everything I have read here that a person with celiac should supplement their diet with.

What do you think?

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My mom refused to take Fosamax for her osteopenia because of the side effects. She takes Vitamin D and eats veggies with calcium every day and has had improvements on her bone scans.


"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

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My mom can not take any of the drugs to treat osteopenia/osteoporosis because they affected her jaw and the side effects.


Me:
Celiac disease(positive blood work/biopsy- 10/2008), gluten free oat intolerent, Hashimoto's Thyroiditis/Disease, Raynaud's Disease


DS2(age 9):
celiac disease(positive IgA tTG, no biopsy- 11/2010)


DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

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I never recommend taking bio-phosphonates for anyone, unless you are 90 years old and are doing it solely to prevent further fractures. At that age, you won't live long enough to experience severe side effects. All of these supplements are good but exercise is key if your weight is low. For a woman, that is less than 126 pounds and for men it's less than 150 pounds. I have osteoporosis in my spine and osteopenia in my hip from lifetime, undiagnosed Celiac. I am only 51 years old and that is unacceptable to me. I also will never weigh anything close to 126 pounds so I am now doing weight training, in the gym, twice a week. This, coupled with large dose supplements, will hopefully fully reverse the bone loss.

I recently had a dental implant started and was pleased to find out that the bone grafting I had done in preparation for the post installation went exceedingly well. I generated good, solid bone so my hopes are high that the same will occur in my spine and hip.

Ditch the Fosamax...it doesn't work as advertised. It deposits bone on the outside of your bones and not in the matrix, where the bone loss occurs. Sure, it makes your bones look thicker on the scan but your bone matrix is still weak. Weight training and supplements will build bone the natural way and build it where it counts! Good luck to you!

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Gemini,

Thank you very much for the input. You mentioned that you take a big dose of supplements. May I ask which? I am 59 about 155#. I have read everywhere that weights and exercise is helpful. I am under motivated with working out. Just lazy maybe. I used to rollerblade every day, this was before I was nailed with an onslaught of celiac disease symptoms. Now it is winter. I plan on getting back into form this spring. This whole celiac disease experience has been life changing for me, in every sense of the word.

Soon i am heading to Utah for Snowboarding soon.

I was wondering how bad my osteopenia is, all I have is the fact that I have it. I wonder how bad it is? I am now very heathy. I see many great new foods to eat, Whole Foods!

Organic everything, lol.

Good luck to you too.

Gemini.

Let's all pray for Gabrielle Giffords, and all the injured In Az. How terrible! Somehow she seems to be recovering.

Boyd

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Yea they tried to push Fosamax on me too. I refused it as I had heard of so many problems with it and with my teeth in such bad shape from so many years of undiagnosed celiac it just wasn't worth the risk. I also do supplements and weight bearing excercise. I am overdue for another scan as in the last 2 undiagnosed years I went from osteopenia to full osteoporosis but that will have to wait until I can get some form of health insurance.

To the person who wanted to know how advanced their osteoporosis is your doctor will have the records and in the US you have a legal right to any and all of your records. Just call your doctors office, you may need to sign a release but they have to give the report to you.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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I've had osteoporosis and osteopenia since I was 35, due to undiagnosed celiac until I was 43. I took Reclast annual injections for years, with no side effects, but no improvements either. I was due for another injection in July 2008, but I was too sick to get it, as I had just finally learned I had celiac. I started Caltrate twice per day, 5000IU vitamin D daily, and weight bearing exercise. One year later, I had a bone scan which showed "dramatic improvement" in every area. Soley due to a strict gluten free diet, exercise and good nutrition. My doc said he had never seen such dramatic improvement.

BTW, I hate exercise, too, but we all got bikes from Santa last year and we ride all day long on the weekends (So Cal). I go to Curves 5-6 times a week. Since they do Zumba now, it's finally fun. The first exercise I have ever done that did not suck :P


Gluten free is not so bad! If you are new, hang it there, it gets easier!

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I'm guessing this is why I had osteopenia at age 42. I always thought I had it because it ran in my family, now I know better. This is the age I had my last period, too. I always blamed the early menopause on the stress of raising a child with autism, again, now I know better.

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I tried to take this for my osteopenia but I felt flu like, and generally bad. When I started to read about the drug there are all kinds of serious side effects so I stopped taking it.

Any opinions?

I am taking Jarrow Formula Bone Up instead and have no SE's with this. It lists as such

Supplement Facts

Serving Size 6 capsules

Servings Per Container 40

Amount Per Serving

Vitamin C (as ascorbic acid)

200 mg

Vitamin D3 (as cholecalciferol)

1000 IU

Vitamin K1 (as phylloquinone)

100 mcg

MK-7 (vitamin K2 as menaquinone-7)

10 mcg

B12 (as methylcobalamin)

100 mcg

Microcrystalline Hydroxyapatite (MCHA)

4762 mg

Calcium (from MCHA)

1000 mg

Phosphorus (from MCHA)

510 mg

Protein (from MCHA)

1514 mg

Magnesium (as magnesium oxide)

500 mg

Zinc (as zinc monomethionate)

10 mg

Copper (as copper gluconate)

1 mg

Manganese (as manganese citrate)

1 mg

Potassium (as potassium citrate)

99 mg

Boron (as boron citrate)

3 mg

Other ingredients: magnesium stearate (vegetable source), and silicon dioxide.

Contains soy.

No wheat, no gluten, no dairy, no egg, no fish/shellfish, no peanuts/tree nuts.

All of these seem like everything I have read here that a person with celiac should supplement their diet with.

What do you think?

I am 54 and have osteoporosis in my spine

this supplement contains soy ,,which I can not take,,,what supplements would you guys suggest for me ??,,,


Gluten free Oct/09
Soy free Nov/10

 

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Gemini,

Thank you very much for the input. You mentioned that you take a big dose of supplements. May I ask which? I am 59 about 155#. I have read everywhere that weights and exercise is helpful. I am under motivated with working out. Just lazy maybe. I used to rollerblade every day, this was before I was nailed with an onslaught of celiac disease symptoms. Now it is winter. I plan on getting back into form this spring. This whole celiac disease experience has been life changing for me, in every sense of the word.

Soon i am heading to Utah for Snowboarding soon.

I was wondering how bad my osteopenia is, all I have is the fact that I have it. I wonder how bad it is? I am now very heathy. I see many great new foods to eat, Whole Foods!

Organic everything, lol.

Good luck to you too.

Gemini.

Let's all pray for Gabrielle Giffords, and all the injured In Az. How terrible! Somehow she seems to be recovering.

Boyd

I take Metagenics Cal Matrix, which are calcium supplements. I take the recommended dose of 1500 mg. per day. I also use their Vitamin D3 called D3 1000 and I take 2000 mg per day. I also include magnesium glycinate chelate tabs and usually take 1 per day at 300 mg. I follow the recommended amounts for optimal results but some people may have to take differing

doses. I got these from my doctor.

You claim to be lazy but are doing snowboarding? I wouldn't even attempt that! Good for you! Have you had a bone density test yet? That will tell you how bad your bone issues are. I had to just make the time for the weight training but found that I love it. I am getting stronger and actually have some muscles, for the first time in my life. That is what keeps me motivated. You can reverse this if a little effort is put into it and it comes with great benefits on the fitness side.

Yes, Celiac can be life changing but for the better. You eat well and you'll be well. I have make remarkable progress over the past 6 years. It's work at times but good health can be achieved. Now I just want to fix my bones!

Yes, all prayers to the AZ congresswoman and all the others so tragically affected by this A-hole's selfish behavior.

A 9 year old girl was murdered also......this guy should get the death penalty.

Have fun in Utah....I love the snow!

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Don't get me going on this type of drug! My doctor put me on Fosamax and within three weeks I could no longer walk around the block without feeling like I was going to collapse. By the 3rd or 4th week, I had to stay in bed a day every week.

Then I started putting two and two together and realized these symptoms hit me 2 to 3 days after I took the weekly dose. By the time I was feeling fine, it was time for the next dose. I refused to take any more.

The following year, my doctor put me on Boniva, saying it was much better and she was sure I could tolerate it. Big mistake! That stuff is poison.

One morning it felt like somebody hit me with a sledge hammer in the back. I had to go to bed and my entire body started aching. It was like having the flu and in 24 hours I was okay. Then the migraines started happening every 10 - 12 days. I hadn't had a migraine since going on Toprol XL years before!

Soon I was pretty much laid up 3 to 4 days a month. It was like having the worst case of the flu ever. I stopped taking it and will not take any more of these drugs. I'm convinced it would have killed me and I only took it for about 5 months.

I take calcium, extra D3, and walk at least 1 1/2 miles a day. If this isn't enough, then so be it.

The sad part about these drugs is most people don't realize their problems are connected to the drugs. My side effects occurred several days after taking the pill so most would think it was something else. I'm sure this is why most doctors won't believe us when we tell them.


Beth in Florida

Gluten-free since 7/19/08

Alcohol free since 6/28/10

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Don't get me going on this type of drug! My doctor put me on Fosamax and within three weeks I could no longer walk around the block without feeling like I was going to collapse. By the 3rd or 4th week, I had to stay in bed a day every week.

Then I started putting two and two together and realized these symptoms hit me 2 to 3 days after I took the weekly dose. By the time I was feeling fine, it was time for the next dose. I refused to take any more.

The following year, my doctor put me on Boniva, saying it was much better and she was sure I could tolerate it. Big mistake! That stuff is poison.

One morning it felt like somebody hit me with a sledge hammer in the back. I had to go to bed and my entire body started aching. It was like having the flu and in 24 hours I was okay. Then the migraines started happening every 10 - 12 days. I hadn't had a migraine since going on Toprol XL years before!

Soon I was pretty much laid up 3 to 4 days a month. It was like having the worst case of the flu ever. I stopped taking it and will not take any more of these drugs. I'm convinced it would have killed me and I only took it for about 5 months.

I take calcium, extra D3, and walk at least 1 1/2 miles a day. If this isn't enough, then so be it.

The sad part about these drugs is most people don't realize their problems are connected to the drugs. My side effects occurred several days after taking the pill so most would think it was something else. I'm sure this is why most doctors won't believe us when we tell them.

this is one of the reasons I am looking for a new doctor... I refused to take boniva and my doc has tried to 'STRONG ARM' me into taking it..

the other reason i am looking for a new doc is when she FINALLY start to recognize some of my symptoms as possibility Celiac's related she said to me"" it doesnt matter that you have been gluten free for 8 months it will still show in the blood test if you have Celiac's "" :blink: ...


Gluten free Oct/09
Soy free Nov/10

 

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Don't get me going on this type of drug! My doctor put me on Fosamax and within three weeks I could no longer walk around the block without feeling like I was going to collapse. By the 3rd or 4th week, I had to stay in bed a day every week.

Then I started putting two and two together and realized these symptoms hit me 2 to 3 days after I took the weekly dose. By the time I was feeling fine, it was time for the next dose. I refused to take any more.

The following year, my doctor put me on Boniva, saying it was much better and she was sure I could tolerate it. Big mistake! That stuff is poison.

One morning it felt like somebody hit me with a sledge hammer in the back. I had to go to bed and my entire body started aching. It was like having the flu and in 24 hours I was okay. Then the migraines started happening every 10 - 12 days. I hadn't had a migraine since going on Toprol XL years before!

Soon I was pretty much laid up 3 to 4 days a month. It was like having the worst case of the flu ever. I stopped taking it and will not take any more of these drugs. I'm convinced it would have killed me and I only took it for about 5 months.

I take calcium, extra D3, and walk at least 1 1/2 miles a day. If this isn't enough, then so be it.

The sad part about these drugs is most people don't realize their problems are connected to the drugs. My side effects occurred several days after taking the pill so most would think it was something else. I'm sure this is why most doctors won't believe us when we tell them.

I'm so sorry that you went through this. I agree.....the side effects with these are worse and more common than a doctor will tell you. Good for you for sticking to your guns.

Add some weights to your walks and you'll most likely reverse the bone loss. It is not impossible to build bone at any age, if you ask me.

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In my mother's case, her doctor kept pushing and pushing for Fosamax. All the while, her exam room was festooned with Fosamax coffee mugs, notepads, pens, signs, and posters. Ugh.


"My experience has been that there is, surprisingly, always hope." - Eleven

Positive blood test & endoscopy / Gluten-free 10-07-10 / Dairy-free / Soy-free

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Good info Gemini. Thanks. I going to pick up some of this stuff. LOL. You saved me some research time.

Metagenics Cal Matrix, which are calcium supplements. I take the recommended dose of 1500 mg. per day. I also use their Vitamin D3 called D3 1000 and I take 2000 mg per day. I also include magnesium glycinate chelate tabs and usually take 1 per day at 300 mg. I follow the recommended amounts for optimal results but some people may have to take differing

doses. I got these from my doctor.

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In my mother's case, her doctor kept pushing and pushing for Fosamax. All the while, her exam room was festooned with Fosamax coffee mugs, notepads, pens, signs, and posters. Ugh.

Oh, how I hate that! I like my PCP, for the most part, except that I am opinionated about certain things (which I'm sure you have all noticed!) :P and I always do my homework before agreeing to anything. I absolutely refused to take any bio-phosphonates and my PCP was not too happy about that. I researched it and spoke with my dentist because I have so many Celiac dental issues and am in the midst of 2 dental implants. He implored me not to take them because it can trigger jaw necrosis in those having a lot of dental work done, not to mention the fact it doesn't work like a doctor will try to sell to you. Jaw necrosis means tissue death so you basically develop gangrene of the jaw.

Not that doctors are bad people, they are not. Most are really trying to help their patients but I have learned over 50 years that they tell little lies to coerce people into taking meds they don't want to take or may not necessarily need. My solution was to start weight training classes and the biggest thrill for me was finding out I loved the classes and look forward to going. Not only am I building bone (hopefully), it's a great stress reducer and I now am the proud owner of muscles, which this skinny Celiac never, ever had before!

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Before perscribing Fosamax Drs are advised to rule out Celiac Disease. Studies have shown that it is ineffective for gluten related osteoporosis and many celiacs have reactions when they take it. Yet many Drs are still perscribing Fosamax and related meds. My Dr wanted me to take this so I told her it was not indicated, well she didn't believe me but finally she looked it up and by golly I was right.


DQ6/DQ8

HLA-DQ B allele 1 *0602: HLA-DQ B allele 2 *0302

Gluten free and Cow Dairy free since 2006

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Before perscribing Fosamax Drs are advised to rule out Celiac Disease. Studies have shown that it is ineffective for gluten related osteoporosis and many celiacs have reactions when they take it. Yet many Drs are still perscribing Fosamax and related meds. My Dr wanted me to take this so I told her it was not indicated, well she didn't believe me but finally she looked it up and by golly I was right.

Wow, this explains a lot. No wonder I was so sick on Fosamax and Boniva. I didn't realize I was celiac or gluten intolerant at that time. In fact, I was sort of blaming the drugs for being the "trigger" in activating the disease.

I fully expect my doctor to try pushing those drugs on me again so now I have some ammunition. Thanks!


Beth in Florida

Gluten-free since 7/19/08

Alcohol free since 6/28/10

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Before perscribing Fosamax Drs are advised to rule out Celiac Disease. Studies have shown that it is ineffective for gluten related osteoporosis and many celiacs have reactions when they take it. Yet many Drs are still perscribing Fosamax and related meds. My Dr wanted me to take this so I told her it was not indicated, well she didn't believe me but finally she looked it up and by golly I was right.

I would imagine that the reason for the non-response to treatment in Celiac would be due to non-absorption, at least prior to diagnosis. Fosamax and all those other bone meds are highly irritating to the GI tract, which explains why you have to stand for 30 minutes after taking it. This probably is the cause for the reactions to it. Is this drug listed as gluten-free at all?

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Fosamax in England is called Alendronic Acid just a generic of same drug.

This drug I took for 6 weeks made me severely ill and I stopped it myself.

my osteporosis was the first find by my doc and she put me straight on it .

Coeliac was found few months later by another doctor.

I tried to do some research on fosamax, looked on ....askapatient.com and typed in fosamax......over a thousand patients with horror stories on there....I added mine.

Apart from all the stomach and digestive issues that drug causes no one with coeliac should be given bisphosphonates because of that very reason and I am pretty sure I found somewhere its NOT gluten free.

Wish they had found the coeliac first and yes coeliac should be ruled out before drugs are given but how many look for causes?

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In North America, the branded drug Fosamax is gluten-free. If a generic version is not it is because of inactive ingredients, but I haven't found one in Canada that isn't gluten-free.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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Before perscribing Fosamax Drs are advised to rule out Celiac Disease. Studies have shown that it is ineffective for gluten related osteoporosis and many celiacs have reactions when they take it. Yet many Drs are still perscribing Fosamax and related meds. My Dr wanted me to take this so I told her it was not indicated, well she didn't believe me but finally she looked it up and by golly I was right.

Amazing. I was just getting back checking in and the fact that Fosamax is not indicated is hard to believe, yet I believe. LOL. :rolleyes:

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