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Newbie-43 With Osteoporosis


Suzysliw

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Suzysliw Rookie

Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan


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wowzer Community Regular

I haven't heard about being tested for a vitamin D deficiency. I supposed it could tie into osteoporosis if you think about it. I had no gastric symptoms, but many different skin symptoms over the years. I did get my doctor to do the blood test which came back negative. He did agree that I could still have it. I finally tried the gluten free diet the first of the year. I had many improvements, some of which I saw in the first few weeks. You could try going to another doctor. I kind of lucked out when I brought it up to my family doctor because he had been to a seminar a few days before. He still had the literature in his car, which he made copies for me. Good Luck Wendy

Nancym Enthusiast

You should get the rash biopsied, you might not have any other evidence of the disease.

HawkFire Explorer

Please give up dairy asap. This runs counter to what the FDA and American medicine tells us. Do you own research on line. I will not bother to tell you here. Look into the myths of dairy, the truth of calcium absorption being blocked by too much protein. Consider the strong bones of animals who do not consume dairy. The green leafy vegetables are where the calcium your body can use is. Vitamin C is necessary for calcium absorption. If you get your calcium in a dairy/protein source, your body flushes it away! You sound like you are interested in why this has happened to you. The american diet, the food pyramid, the misinformation of the dairy industry and their cohorts at the FDA are why this is happening to you.

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Suzie-GFfamily Apprentice
Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan

I'm just a few years younger than you, I found out about my osteoporosis after I tested pos for celiac. I had constipation for several months after the births of my children, but just thought it was related to pregnancy and birth, it resolved on it's own before I was diagnosed.

A test for celiac would be a reasonable test to run based on the conditions and symptoms you have. I'd also suggest that you ask your physician to check your parathyroid hormone (PTH) levels, or maybe they've already done that? Undiagnosed celiacs with low bone mineral density often have elevated PTH levels.

You might find it interesting to read the World Gastroenterology Organization Practice Guideline: "Osteoporosis and gastrointestinal diseases"

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There is also a good article in the journal Gastroenterology (2003) vol 124 pages 791-4

"American Gastroenterological Association Medical Position Statement: Guidelines on Osteoporosis in Gastrointestinal Diseases"

Suzie

Suzie-GFfamily Apprentice

In case you are looking for any additional info about celiac and osteoporosis- you might like this information from the University of Chicago Celiac Disease Program:

Open Original Shared Link

larry mac Enthusiast
Please give up dairy asap. This runs counter to what the FDA and American medicine tells us. Do you own research on line. I will not bother to tell you here. Look into the myths of dairy, the truth of calcium absorption being blocked by too much protein. Consider the strong bones of animals who do not consume dairy. The green leafy vegetables are where the calcium your body can use is. Vitamin C is necessary for calcium absorption. If you get your calcium in a dairy/protein source, your body flushes it away! You sound like you are interested in why this has happened to you. The american diet, the food pyramid, the misinformation of the dairy industry and their cohorts at the FDA are why this is happening to you....

Boy, I'm glad my mother didn't breast feed me. To think I could've been poisoned.

The american diet, the food pyramid, the dairy industry, the FDA, and American medicine?

My my, that's a pretty big conspiracy!

Sorry, but margaritas aren't near as much fun without nachos.


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jacqui Apprentice
Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan

I would definately think the doc should order the Celiac Panel now! I was dx'd last April and had bugged my sister (10 mon. later at her physical she requested the blood work - she too had "no symptoms") to get checked - long story short - her doc did the celiac panel; all her tests were >100, next EGD = villi completely flattened with I think scalloping; more labs ordered = totally deficient in B, D, Calcium and Iron --->doc never saw labs sooo low! No she didn't tell me what they were ---> I'll have e-mail her b/c she sees him very soon; next DEXA scan = Osteoporosis, did I say my sister is an active Mom, High School teacher, loves to garden and is only 35 y/o. At first she was completely devastated, but then she said she'll just do what she has to to get better... and she has great support.

Let us know how things go! We'll be crossing our fingers that he orders the panel...

Ursa Major Collaborator
Boy, I'm glad my mother didn't breast feed me. To think I could've been poisoned.

The american diet, the food pyramid, the dairy industry, the FDA, and American medicine?

My my, that's a pretty big conspiracy!

Sorry, but margaritas aren't near as much fun without nachos.

You know, Larry, what you say here is insulting, to say the least. Breast milk is the best food for babies. Milk from cows is the best thing for calves. It is terrible for humans.

The food pyramid is the biggest joke in history, and the cause of the high rates of obesity in America. If you believe it, you would need to eat an awful lot of grain each day, as well as dairy, in order to be healthy. No wonder so many people are so sick.

And the FDA is a fraud, with a lot of people in it that shouldn't be allowed to be, with conflicts of interest. And you know perfectly well how ignorant American doctors are, all they know is prescribe drugs the pharmaceutical industry is pushing.

So, maybe the next time you ought to do a little research on what people say, rather than belittling them. You may find that they have a point.

Ursa Major Collaborator
Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan

Susan, it is definitely possible that you may have celiac disease. If you do, it is likely that you are deficient in vitamin D. It is needed for your body to absorb calcium and magnesium, hence the osteoporosis. What you need is to be tested for celiac disease, as well as the tests he wanted to do first.

On the other hand, a lot of Americans are deficient in vitamin D, due to lack of sunshine, especially in the winter. But even in the summer most people don't get enough of it. Low levels of vitamin D can cause depression.

You are right, of course, osteoporosis is a secondary condition, a symptom. You need to find the cause and fix that, in order to improve your bone density.

larry mac Enthusiast

UM,

Your a very nice person, I'm sorry I insulted you. Of course you and HF may have some valid points. My post was simply meant to be a tongue-in-cheek response to HF's rather radical preachings. Again, my sincerest apologies to you and HF.

lm

HawkFire Explorer
UM,

Your a very nice person, I'm sorry I insulted you. Of course you and HF may have some valid points. My post was simply meant to be a tongue-in-cheek response to HF's rather radical preachings. Again, my sincerest apologies to you and HF.

lm

No one worry about me. I am preaching an entirely new gospel, as it were... I expect skepticism. I know I sound crazy. ;) We are programmed to view those who disagree with the health mandates of the fda as enemies of common sense. Larry, your mother's breast milk was the best food for you as a baby. Unfortunately, so many mothers have been convinced by soothing television ads depicting loving mothes bottle feeding babies, that bottle feeding is comparable nutrition. It is not. They cannot create something in a Lab that is equal to breast milk. They can, however, create a milky substance that allows a baby to feel full longer, let the mother sleep, go to work and leave her baby with strangers in order to make money to spend on crap American consumers don't need. Capitalizm is furthered by two working parents. No interruption by a useless baby.

jacqui Apprentice
No one worry about me. I am preaching an entirely new gospel, as it were... I expect skepticism. I know I sound crazy. ;) We are programmed to view those who disagree with the health mandates of the fda as enemies of common sense. Larry, your mother's breast milk was the best food for you as a baby. Unfortunately, so many mothers have been convinced by soothing television ads depicting loving mothes bottle feeding babies, that bottle feeding is comparable nutrition. It is not. They cannot create something in a Lab that is equal to breast milk. They can, however, create a milky substance that allows a baby to feel full longer, let the mother sleep, go to work and leave her baby with strangers in order to make money to spend on crap American consumers don't need. Capitalizm is furthered by two working parents. No interruption by a useless baby.

I have no idea what the whole thread is about but I just wanted mention...

Back when I was born ('68) my Mom said they NEVER mentioned anything about breast feeding. They (medical professionals) automatically gave her a shot to absorb the milk/help stop engourgement!

It is awful that is what doctors felt back then...

disneyfan Apprentice
Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan

beaglemania Rookie
Hi, (Great forum!)

I'm hoping and searching for some answers. I was diagnosed with osteoporosis. I'm a healthy active 43 yr old that has a T-score of -2.5 (hips). Other than being a caucasian female of short stature I do not have any other risk factors. I do believe the Osteo is a secondary condition. I'm on a mission to search out the hidden culprit of this disease. Though I do not have any gastrointestinal problems there are a few risk factors that might apply to me. I have an occasional skin rash(for 15 years) that has never been diagnosed but looks exactly like DH. I have had some slight tooth enamel problems and have been dx with depression and anxiety. I insisited my GP order a celiac panel but he assured me that the first step is to have a Vit D test,PTH test first. He said that I would definetly need to be Vit D deficient if he were to consider the Celiac test. I haven't come across and evidence that this is true. Any info.advice or suggestions would be greatly appreciated.

Thanks Susan

Hi Susan welcome to forum. Your osteoporosis is a secondary condition of Celiac and I know because I also have Celiac and also have osteoporosis. I'm glad you found the cause of your osteoporosis. I do not think you have any other hidden culprit because all your problems I have. I have osteoporosis which I know is a direct link to my Celiac Disease beacuse I am now in the osteopenia range with the help of my diet and some medication. I take Boniva right now but I used to be on I.V. treatments. I take Citrical Vitamin D+ because I have a vitamin deficiency also. Also I have had some teeth problem also such as some teeth have never been formed. Perhaps you think you might have some other factor leading to your Celiac Disease but I think not. You have the same factors and symptoms like I do and I know mine did not come from any other factor because I am only 15 years old. So I highly doubt my osteoporosis came from old age!! I hope this helps. If you have any questions I shall check back on this forum and you can send me a personal message If you'd like.

Parker's mom Newbie

I know about parathyroid disease but I am still learning about celiac. Osteoporosis can also be caused by parathyroid disease. I had parathyroid disease when I was 25. Too much PTH and calcium in your blood messes with you emotionally and physically. You can get depressed and have anxiety. It can cause your heart to beat too fast and my favorite was the kidney stones. I just think that the PTH test is a good place to start. If it is your parathyroid it is a fairly straight forward diagnosis and a very easy fix. If your doc suspects parathyroid disease the nest step is a scan to find which glands are enlarged, causing the elevated levels. Then they go in and take them out. You actually feel better within hours after surgery.

Good luck,

Sarah

Suzie-GFfamily Apprentice
I know about parathyroid disease but I am still learning about celiac. Osteoporosis can also be caused by parathyroid disease. I had parathyroid disease when I was 25. Too much PTH and calcium in your blood messes with you emotionally and physically. You can get depressed and have anxiety. It can cause your heart to beat too fast and my favorite was the kidney stones. I just think that the PTH test is a good place to start. If it is your parathyroid it is a fairly straight forward diagnosis and a very easy fix. If your doc suspects parathyroid disease the nest step is a scan to find which glands are enlarged, causing the elevated levels. Then they go in and take them out. You actually feel better within hours after surgery.

Good luck,

Sarah

If celiac disease is the underlying cause of the reduced bone density, there may be an elevation of PTH due to secondary hyperparathyroidism.

This is different from primary hyperparathyroidism- in which the glands oversecrete PTH because there is a problem with the parathyroid glands themselves.

Secondary hyperparathyroidism should resolve once the underlying cause (eg osteoporosis induced by celiac disease) is dealt with.

Suzysliw Rookie

Thank you to all that have replied. I did insist that my doc ordered the celiac panel and I will have the results of the Vit D test, Calcium,PTH test and Celiac on Monday. Is there anything that I should know before I discuss the results? I don't just want to take an answer everything seems ok.

Susan

Suzie-GFfamily Apprentice
Thank you to all that have replied. I did insist that my doc ordered the celiac panel and I will have the results of the Vit D test, Calcium,PTH test and Celiac on Monday. Is there anything that I should know before I discuss the results? I don't just want to take an answer everything seems ok.

Susan

You have osteoporosis and you are only 43- everything is not OK.

If the results for the tests are normal, insist that they keep looking for a cause. If they haven't done a total serum IgA ask for it. Some celiacs are IgA deficient and this will cause a false negative on the celiac blood screening test.

Suzysliw Rookie

Vitamin D tests just came back at 18. 32-100 is norm. Doc says PTH and Celiac panel is Fine.

Help-what does this mean?? What should I do??

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    • knitty kitty
      You're right, doctors usually only test Vitamin D and B12.  Both are really important, but they're not good indicators of deficiencies in the other B vitamins.  Our bodies are able to store Vitamin B12 and Vitamin D in the liver for up to a year or longer.  The other B vitamins can only be stored for much shorter periods of time.  Pyridoxine B 6 can be stored for several months, but the others only a month or two at the longest.  Thiamine stores can be depleted in as little as three days.  There's no correlation between B12 levels and the other B vitamins' levels.  Blood tests can't measure the amount of vitamins stored inside cells where they are used.  There's disagreement as to what optimal vitamin levels are.  The Recommended Daily Allowance is based on the minimum daily amount needed to prevent disease set back in the forties when people ate a totally different diet and gruesome experiments were done on people.  Folate  requirements had to be updated in the nineties after spina bifida increased and synthetic folic acid was mandated to be added to grain products.  Vitamin D requirements have been updated only in the past few years.   Doctors aren't required to take as many hours of nutritional education as in the past.  They're educated in learning institutions funded by pharmaceutical corporations.  Natural substances like vitamins can't be patented, so there's more money to be made prescribing pharmaceuticals than vitamins.   Also, look into the Autoimmune Protocol Diet, developed by Dr. Sarah Ballantyne, a Celiac herself.  Her book The Paleo Approach has been most helpful to me.  You're very welcome.  I'm glad I can help you around some stumbling blocks while on this journey.    Keep me posted on your progress!  Best wishes! P.S.  interesting reading: Thiamine, gastrointestinal beriberi and acetylcholine signaling https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/
    • NanceK
      So interesting that you stated you had sub clinical vitamin deficiencies. When I was first diagnosed with celiac disease (silent), the vitamin levels my doctor did test for were mostly within normal range (lower end) with the exception of vitamin D. I believe he tested D, B12, magnesium, and iron.  I wondered how it was possible that I had celiac disease without being deficient in everything!  I’m wondering now if I have subclinical vitamin deficiencies as well, because even though I remain gluten free, I struggle with insomnia, low energy, body aches, etc.  It’s truly frustrating when you stay true to the gluten-free diet, yet feel fatigued most days. I’ll definitely try the B-complex, and the Benfotiamine again, and will keep you posted. Thanks once again!
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