# Osteoporosis and bone pain



## mablenc (Feb 26, 2013)

Hello,

I'm in my early 30's and I have had osteoporosis for over 7 years. At first no doctor wanted to run a bone density on me because of my age, but finally found a doctor that did and confirmed. The reason I was supsious is that my bones would and still hurt when I exercise. I'm not talking shin splits or joint pain. I'm talking about pain inside the bones arms, legs, spine, and it's so painful it keeps me up all night and last for days. I find that I can only tolerate swimming, but sometimes even that will make me hurt. It's rare to have bone pain with osteoporosis according to my dr but all other tests came back good. I do know that I had a vitamin d deficiency that caused the osteoporosis. While I took care of bringing it up to normal levels the pain did not go away.

The problem is I need to work out but it's too painful, anyone out there that can relate and advice?


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## coffee4me (Feb 6, 2013)

What you explained sounds like osteoporosis caused by parathyroid disease. That's been checked ?
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## mablenc (Feb 26, 2013)

coffee4me said:


> What you explained sounds like osteoporosis caused by parathyroid disease. That's been checked ?
> _Posted via Mobile Device_


No, I have not heard that term mentioned before.


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## coffee4me (Feb 6, 2013)

Read about it at Osteoporosis and Osteoporosis Caused by Parathyroid Disease. Osteopenia and Osteoporosis Due to Calcium Removed from Bones by Parathyroid Hormone.
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## coffee4me (Feb 6, 2013)

I can hear my doctor saying don't self diagnose. Lol! I prefer to look at it as being proactive in my health.
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## doubletrouble (Apr 23, 2013)

I can sympathize but I have only occasional knee pain from occasional flare-ups of arthritis. Enough to keep me from flying any more (especially in small jumpseats, ugh!). 

I wonder why the Vitamin D doesn't help, when it's in the normal range?


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## mablenc (Feb 26, 2013)

Thank you I am reading on it and  many things sound familiar, I have had thyroid test, but apparently this wont come up on those test.
Plus my doctor is a bit more open minded, after all he's the only one who took me serious when the other ones told me I was too young to worry about osteoporosis.


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## mablenc (Feb 26, 2013)

I'm suspicious because he said he was really surprised and happy with my calcium levels. :scratchhead:meaning they were too good for a osteoporosis gal?

i'm going to look for my lab test results.


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## southern wife (Jul 22, 2011)

mablenc, I'm so sorry for all your pain.  

As for the parathyroid, my husband has his removed due it causing higher levels of uric acid/kidney stones. The surgery is minor, in and out the same day, and a barely visible scar on his neck. He's felt much better since having it removed. Might be worth looking into...


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## mablenc (Feb 26, 2013)

southern wife said:


> mablenc, I'm so sorry for all your pain.
> 
> As for the parathyroid, my husband has his removed due it causing higher levels of uric acid/kidney stones. The surgery is minor, in and out the same day, and a barely visible scar on his neck. He's felt much better since having it removed. Might be worth looking into...


Thanks, this is something I am going to ask about. I match basically all the symptoms. He did want me to follow up if the pain continued so, guess its time for that.

Made an appointment for monday. Thank you for information!


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## coffee4me (Feb 6, 2013)

I don't want to say I hope that's the problem but at the same time it would be good news if there was a source that could be treated. So much better for you in the long run. Fingers crossed for some steps in the right direction on Monday!!


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## mablenc (Feb 26, 2013)

coffee4me said:


> I don't want to say I hope that's the problem but at the same time it would be good news if there was a source that could be treated. So much better for you in the long run. Fingers crossed for some steps in the right direction on Monday!!


I think I will be more disappointed if it's not, its very frustrating to live like this and have no hope.


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## coffee4me (Feb 6, 2013)

There's always hope. I busted up one of my leg bones very badly. The bone pain you describe reminded me of how it felt for years. Literally the bone hurt for years. I knew it had mended as much as it was going to and thought I just live like this. 

I noticed changes that lessened pain and swelling, increased my mobility. This took 8 years and I still have set backs. I have to be very careful with what kind of shoes I wear but it makes such a huge difference. 

The pain you describe walking on the beach is still typical for me and walking through water for any period will cause pain and stiffness. 

What I learned is that our bodies may make changes to compensate for some of our health issues it just sometimes takes years.


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## bunny23 (May 19, 2011)

Hi, I can relate.

I was treated like a mental patient or drug seeker for 4 years before I was diagnosed with a super rare spinal cord disorder at age 27. BTW it was visible on MRI I had but the docs never looked at actual disc only report that said my spine aka discs were fine.

It's frustrating being in pain.

Even after surgery and the scarring it caused my docs were still unwilling to figure things out. But I finally stood my ground, got on 1 (kinda controversial med) and have been feeling phenomenal.

It's sad but you have to be your own advocate and research everything. 

Since your condition is so atypical I'm sure you can keep pushing for more testing. Someone will listen 

I hope you get this figured out, I am a totally different person without crazy pain that has dominated my life. My physician and I were balling our eyes out when I noticed my pain went from a 7-8 to a 1-3. I went from (no joke) 7 meds to 1 I take daily and another for occasional muscle spasms.

Don't give up hope


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## mablenc (Feb 26, 2013)

bunny23 said:


> Hi, I can relate.
> 
> I was treated like a mental patient or drug seeker for 4 years before I was diagnosed with a super rare spinal cord disorder at age 27. BTW it was visible on MRI I had but the docs never looked at actual disc only report that said my spine aka discs were fine.
> 
> ...


Thank you for posting this, It's frustrating when you know something is wrong but you are treated like you are crazy. I am glad to have found my current doctor. He's the only one willing to do a bone density test on me at my age. I am off to see him.
I wont give up now, knowing that I should not settle for this pain.

thank you.


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## mablenc (Feb 26, 2013)

Updated, sigh so I went to see an endocrinologist last month ran some test, vitamin D low again and high cortisol on 24 hour uriine, I hate to be treated like I'm crazy by the way. I felt she didnt really belive me, upon the first visit she said I wouldn't need any follow up. This was before labs. 

So the doctor sends me to get two saliva collection and a overnight dexametasome suppression test. These come back normal range.

So I'm back to square one and frustrated. She also put in letter that she hopes I'm feeling better, how I'm a supposed to feel better? Magic? Because she didn't do anything to help!


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## coffee4me (Feb 6, 2013)

Mablenc, I'm so sorry. Can't give up hope. Have you been to a pain management dr?
_Posted via Mobile Device_


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## mablenc (Feb 26, 2013)

coffee4me said:


> Mablenc, I'm so sorry. Can't give up hope. Have you been to a pain management dr?
> _Posted via Mobile Device_


No, maybe I'm sticking to the stereotype that they will just give me drugs. I want to know why I have osteoporosis at my age, why I'm so fatigued, and why my bones hurt. Seems that something is not working but, it's a sneaky problem.


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## coffee4me (Feb 6, 2013)

I would get another opinion, especially if you felt like the dr blew you off. The pain management dr can be about preserving quality of life while you try to get some answers. Not all pain management is drug therapy. Meditation, acupuncture other avenues to explore. Chin up, be persistent and proactive if this dr isn't willing to help you find some answers find another who will.
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## mablenc (Feb 26, 2013)

coffee4me said:


> I would get another opinion, especially if you felt like the dr blew you off. The pain management dr can be about preserving quality of life while you try to get some answers. Not all pain management is drug therapy. Meditation, acupuncture other avenues to explore. Chin up, be persistent and proactive if this dr isn't willing to help you find some answers find another who will.
> _Posted via Mobile Device_


Its hard, I've taken so many test, I just want to have a normal life, no extreme fatigue and no pain. I also wanted another child but there's no way I could like this.


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## mablenc (Feb 26, 2013)

drerio said:


> Mablenc,
> 
> You said your primary was testing for Lyme disease. Is there a reason other than symptoms? Usually this is something that would only be suspected along with some some activity and the typical incubation period were noted with that activity to symptoms. I am not suggesting Lyme disease (since that seems to be ruled out), but wondering on something else based on the same line of thought.
> 
> ...


Never Been an outdoors person, Lyme diseases was ruled out just becuse of the symptoms. 

I'm suspiosus that there's a malabsorption issue going on. That's causing the problems. My thyroid and parathyroid have been tested and are fine.

Only contant issues is the low vitamin D.


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## Ikaika (Apr 23, 2012)

mablenc said:


> Never Been an outdoors person, Lyme diseases was ruled out just becuse of the symptoms.
> 
> I'm suspiosus that there's a malabsorption issue going on. That's causing the problems. My thyroid and parathyroid have been tested and are fine.
> 
> Only contant issues is the low vitamin D.


I just keeping going back to the kidneys. Here is the thing with malabsorption of vitamin D in the intestine:

The health of your gut. The vitamin D that is consumed in food or as a supplement is absorbed in the part of the small intestine immediately downstream from the stomach. Stomach juices, pancreatic secretions, bile from the liver, the integrity of the wall of the intestine — they all have some influence on how much of the vitamin is absorbed. Therefore, conditions that affect the gut and digestion, like celiac disease, chronic pancreatitis, Crohn’s disease, and cystic fibrosis, can reduce vitamin D absorption. Thus you would like see other associated absorptive and digestive issues. 

While the liver could be an issue, again it would like elicit other very dramatic symptoms that would be a bigger focus than your bones. From the diagram you can see that there is a conversion process from the Vitamin D we consume to the activated (hormone-like) form that is utilized in helping the form the inorganic component of bone. 










I still think they could run an extensive battery of kidney function tests, just to rule it out.


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## coffee4me (Feb 6, 2013)

Mablenc is it just your vitamin D levels or are your calcium and phosphorous levels low as well? The pain you describe can be attributed to osteomalacia which is a condition in which you are low on these. However, with proper supplementation and maintaining your Levels you should feel better in approx 6 months. But if there's a condition like drerio describes which makes it impossible for your body to maintain the desired levels that must be treated. What kind of supplements are you currently on?
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## mablenc (Feb 26, 2013)

coffee4me said:


> Mablenc is it just your vitamin D levels or are your calcium and phosphorous levels low as well? The pain you describe can be attributed to osteomalacia which is a condition in which you are low on these. However, with proper supplementation and maintaining your Levels you should feel better in approx 6 months. But if there's a condition like drerio describes which makes it impossible for your body to maintain the desired levels that must be treated. What kind of supplements are you currently on?
> _Posted via Mobile Device_


Calcium levels are always normal, they RX me 50,000 IU of D once a week for 2 months, then 2,000 daily.


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## mablenc (Feb 26, 2013)

One thing I haven't mentioned is that my gallbladder has been removed, problems surfacing right after. They said I wouldn't miss it, I beg to differ.


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## Ikaika (Apr 23, 2012)

mablenc said:


> One thing I haven't mentioned is that my gallbladder has been removed, problems surfacing right after. They said I wouldn't miss it, I beg to differ.


Gallbladder stores and concentrates bile to emulsify fats for more efficient absorption of fat soluble substances (vitamin D is fat soluble) but should not affect your vitamin D levels unless you have an issue with your liver. 

Have your doctor do a hepatitis screen.


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## mablenc (Feb 26, 2013)

drerio said:


> Gallbladder stores and concentrates bile to emulsify fats for more efficient absorption of fat soluble substances (vitamin D is fat soluble) but should not affect your vitamin D levels unless you have an issue with your liver.
> 
> Have your doctor do a hepatitis screen.


I don't recall a hepatitis screening ever done, I'll ask Him. Liver function yes.


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## Ikaika (Apr 23, 2012)

mablenc said:


> I don't recall a hepatitis screen. Liver function yes.


You probably don't have Hep B or C given your lifestyle and age, and A is associated with water and food borne infections. Just to be on the safe side would not hurt to check.


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## mablenc (Feb 26, 2013)

drerio said:


> You probably don't have Hep B or C given your lifestyle and age, and A is associated with water and food borne infections. Just to be on the safe side would not hurt to check.


Lately one drink of alcohol will have me hurting bad worse than the exerciseing, I worry whatever is happening is getting worse. Hence no more drinking, couldn't tolerate much and I started on my 30's anyway so don't think I'll miss it.


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## Ikaika (Apr 23, 2012)

mablenc said:


> Lately one drink of alcohol will have me hurting bad worse than the exerciseing, I worry whatever is happening is getting worse. Hence no more drinking, couldn't tolerate much and I started on my 30's anyway so don't think I'll miss it.


Interesting: ask doctor to run liver and kidney functional test. And, still as for a hep screen.


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## Ikaika (Apr 23, 2012)

How are things going?


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## LadyDee (Oct 1, 2013)

mablenc said:


> Never Been an outdoors person, Lyme diseases was ruled out just becuse of the symptoms.
> 
> I'm suspiosus that there's a malabsorption issue going on. That's causing the problems. My thyroid and parathyroid have been tested and are fine.
> 
> Only contant issues is the low vitamin D.


How extensive were your tests for thyroid? Did they do more than just the normal TSH tests?

I have recently been diagnosed with thyroid disease, after YEARS of doctors telling me I am just fine and healthy, but knowing that something was very wrong.

Your low D and other symptoms are all signs of thyroid disease. Your low D could cause many symptoms too.

Go to FB and search for a page *thyroid sexy* see if there is an integrative dr. in your area and check it out. You may find many other women that have your symptoms there and get some very beneficial information.


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## mablenc (Feb 26, 2013)

Drerio- I been. Struggling with a bit of depression do to being back on square one. I'm also taking look and googling all my lab work. I need to get ahold of last years test.

LadyDee, yes thyroid had been checked even with a scan, comes back normal. I will check out the website, thanks.
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## Ikaika (Apr 23, 2012)

Next time you see your doctor ask them to screen your osteocalcin levels (screen you for hypophosphatasia).


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## mablenc (Feb 26, 2013)

I'm going to give the vitamin D treatment it's course of two months already finished week 2. I'm thinking of asking for a referral to a orthopedic.
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## indiecat (Sep 24, 2012)

Depression can cause widespread pain. Are there any signs of that? You've probably seen the Cymbalta commercials.
Has fibromyalgia been ruled out, or Chronic Fatigue? 
You can have more than one thing going on at a time.


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## mablenc (Feb 26, 2013)

Well it does get worse with depression I'll tell you that, at first we thought it was fibromyalgia and I was put on cymblata but that didn't help the bone pain and the side effects were not worth it. It was a nightmare to get off of it, I would advice anyone about to get on it to research it. 

True, it can be a mix of things, I'm a bit more worried about the bone pain and my future since it seem that whatever it is, it's getting worse.
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## Ikaika (Apr 23, 2012)

Mab, how are things going? I know healing of any kind is a slow train down the track, but just wanted to check in.


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## mablenc (Feb 26, 2013)

drerio said:


> Mab, how are things going? I know healing of any kind is a slow train down the track, but just wanted to check in.


I'm still weighing my options, I got billed close to $700 for last time deductible and labs  I've started a supplement for adrenal support not a life changing thing but, it's been two days since I ran out and I'm very fatigued. I realize now it was helping. I hit a dead end, I've been talking my vitamin d as prescribed too.
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## Ikaika (Apr 23, 2012)

mablenc said:


> I'm still weighing my options, I got billed close to $700 for last time deductible and labs  I've started a supplement for adrenal support not a life changing thing but, it's been two days since I ran out and I'm very fatigued. I realize now it was helping. I hit a dead end, I've been talking my vitamin d as prescribed too.
> _Posted via Mobile Device_


So sorry to hear. I know it has to frustrating. So will you be making any follow up visits soon?


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## mablenc (Feb 26, 2013)

drerio said:


> So sorry to hear. I know it has to frustrating. So will you be making any follow up visits soon?


, I want to pay down the bills, unemployed here so I know it's important but, I hate to burden the family. Also, I'm not sure which route to take Bone doctor? Internal medicine? Witch dr


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## Ikaika (Apr 23, 2012)

mablenc said:


> , I want to pay down the bills, unemployed here so I know it's important but, I hate to burden the family. Also, I'm not sure which route to take Bone doctor? Internal medicine? Witch dr


So yea, the issue of you endocrine profile seems interesting, because normally on the issue of bones I would take the endocrine route or the kidney route. I understand the money issue and complete sympathize with you situation.


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## doubletrouble (Apr 23, 2013)

Sounds like the adrenal support works, then. Bone pain can be a real drag on your life. My X has a chronic form of leukemia, and bone pain associated with it, so I've seen it first hand although not suffered from it. If a supplement will do the trick, I'd buy a HUGE bottle and keep a stash nearby. 

My prayers are with you.


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## mablenc (Feb 26, 2013)

doubletrouble said:


> Sounds like the adrenal support works, then. Bone pain can be a real drag on your life. My X has a chronic form of leukemia, and bone pain associated with it, so I've seen it first hand although not suffered from it. If a supplement will do the trick, I'd buy a HUGE bottle and keep a stash nearby.
> 
> My prayers are with you.


Thank you,

It seems the vitamin D is helping, I need to try exercising to make sure but I am scared to try as the pain is bad. But I have not had a bone pain episode from just shopping so it seems like progress.


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## mablenc (Feb 26, 2013)

Updating, well I can now exercise with minimal pain. I also feel less fatigued since I started with the vitamin D.


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## Ikaika (Apr 23, 2012)

Awesome. sometimes solutions are just as important as the diagnosis.


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## doubletrouble (Apr 23, 2013)

That's wonderful news, Queenie! You can get your whipping arm back into shape! 

:whip:


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## mablenc (Feb 26, 2013)

doubletrouble said:


> That's wonderful news, Queenie! You can get your whipping arm back into shape!
> 
> :whip:



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## Bellavista (May 29, 2012)

Have you also tried going completely gluten free? Gluten messes with me badly, it makes my joints ache to the point I cannot make a fist.


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## mablenc (Feb 26, 2013)

Bellavista said:


> Have you also tried going completely gluten free? Gluten messes with me badly, it makes my joints ache to the point I cannot make a fist.


 Should be as I tested positive to gluten sensitivity  but it's hard, maybe this is a good time to do so.


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## Ikaika (Apr 23, 2012)

mablenc said:


> Should be as I tested positive to gluten sensitivity  but it's hard, maybe this is a good time to do so.


It is a good time, if you are sensitive to it.


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## mablenc (Feb 26, 2013)

drerio said:


> It is a good time, if you are sensitive to it.


Honestly, I don't know whether to trust the doctor, he had me tested and said it was a gene. This chiropractor is the type that was pushing for lots of test and supplements. While I do like supplements, he goes over board and everything is doom and gloom. 
Him--> 😱
I'm glad you bring it up, is there really possible to find genes for gluten sensitvity?


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## Ikaika (Apr 23, 2012)

mablenc said:


> Honestly, I don't know whether to trust the doctor, he had me tested and said it was a gene. This chiropractor is the type that was pushing for lots of test and supplements. While I do like supplements, he goes over board and everything is doom and gloom.
> Him--> 😱
> I*'m glad you bring it up, is there really possible to find genes for gluten sensitvity?*


Well, there is a definitive test for certain sensitivities, like Celiac disease, Chron's Disease (somewhat unrelated to your condition) and a few other sensitivities. Simply being sensitive to gluten only takes a simple antibody test. 

Some sensitivities are actually related to your gut microflora, the microbes that live in your colon. There have been some cases where people have resolved a host of symptoms by going through procedure that replaces "bad" microflora with "good" microflora. I don't know if there are experts in your area, but getting a fecal test for the microflora may not be a bad idea. Just a suggestion.


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## mablenc (Feb 26, 2013)

drerio said:


> Well, there is a definitive test for certain sensitivities, like Celiac disease, Chron's Disease (somewhat unrelated to your condition) and a few other sensitivities. Simply being sensitive to gluten only takes a simple antibody test.
> 
> Some sensitivities are actually related to your gut microflora, the microbes that live in your colon. There have been some cases where people have resolved a host of symptoms by going through procedure that replaces "bad" microflora with "good" microflora. I don't know if there are experts in your area, but getting a fecal test for the microflora may not be a bad idea. Just a suggestion.


Thank you, as always


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## norajane (Feb 7, 2012)

mablenc said:


> Honestly, I don't know whether to trust the doctor, he had me tested and said it was a gene. This chiropractor is the type that was pushing for lots of test and supplements. While I do like supplements, he goes over board and everything is doom and gloom.
> Him--> 😱
> I'm glad you bring it up, is there really possible to find genes for gluten sensitvity?


According to the National Foundation for Celiac Awareness, they say there is no test for non-celiac gluten sensitivity. There is no gene. I think you are right about your chiropractor. He's charging you for a test that does not exist.

Diagnosis of Non-Celiac Gluten Sensitivity | NFCA


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## mablenc (Feb 26, 2013)

norajane said:


> According to the National Foundation for Celiac Awareness, they say there is no test for non-celiac gluten sensitivity. There is no gene. I think you are right about your chiropractor. He's charging you for a test that does not exist.
> 
> Diagnosis of Non-Celiac Gluten Sensitivity | NFCA


Thank you, it felt like walking through a Mexican market at his office. They were always trying to sell you something. I stopped seeing him, my red flags went up right away. He also seemed to want to scare me with my autistic son, he would claim he could cure him  but I needed to act right away. Found a better one that sells nothing, and does a great job.


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## Bellavista (May 29, 2012)

I did an elimination diet to see what was causing my joint pain. Within 2 weeks of eliminating gluten from my diet I had no joint pain, far less fluid retention and my foggy brain cleared. To make sure it was not a fluke, I reintroduced gluten. For the first week I did not feel too bad, by the time a month had passed I was back in a dark, hurty place again. It really messed with my body and emotions.

I did not want to have the test for celiac as I have heard there can be a high rate of false negatives. My doc said if I am better without the gluten then just don't have it. It is not uncommon for people with hashimotos (thyroid) to do better without gluten.


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## mablenc (Feb 26, 2013)

Bellavista said:


> I did an elimination diet to see what was causing my joint pain. Within 2 weeks of eliminating gluten from my diet I had no joint pain, far less fluid retention and my foggy brain cleared. To make sure it was not a fluke, I reintroduced gluten. For the first week I did not feel too bad, by the time a month had passed I was back in a dark, hurty place again. It really messed with my body and emotions.
> 
> I did not want to have the test for celiac as I have heard there can be a high rate of false negatives. My doc said if I am better without the gluten then just don't have it. It is not uncommon for people with hashimotos (thyroid) to do better without gluten.


Well, your body won't lie to you if you feel better, that means you are doing the right thing.


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