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Vitamin D


JerryK

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JerryK Community Regular

See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

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I hurt ALL over and it took until noon or longer to feel a little better. I was taking 6 tylenol a day and advil too. I don


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ravenwoodglass Mentor

I am so glad to hear that he is doing better.

Yea they have never to my knowledge tested my Vit D levels. I do know that since I started taking it a month ago my moods have been better and a toe that I broke back in Sept that just wasn't healing is finally pretty much pain free.

The D3 along with calcium and magnesium seem to have really made a difference. Maybe it will help my bone density too...I hope.

ang1e0251 Contributor

That's pretty interesting. How much D do you take for that kind of relief?

DeerGirl Apprentice

See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

-------------

They miss it b/c traditionally not tested for unless they suspect rickets, house-bound people, or others who don't go outside. It is the rare doctor who thinks to check for it for any reason, in my experience. That said, glad your brother got tested and he is feeling better. I know how miserable being Vit D deficient is, as I too had problems with.

DeerGirl Apprentice

Vit D & calcium will help with bone density.

Supplemental levels are guided by what your starting levels are. My doctor had me take a prescription of D3 when my very low levels were first found. Since stabilizing and going gluten-free, I am now on a lower maintenance dose that is available OTC.

tarnalberry Community Regular

I've had four different doctors test me for it, without asking, with the symptoms of fatigue and joint/muscle pains. (Gyn, two different GPs, and my rheumatologist.) Maybe it's because I'm young(ish), maybe it's because I've lived in the PacNorthwest for the past three and a half years. But it's never been an issue.

DeerGirl Apprentice
I've had four different doctors test me for it, without asking, with the symptoms of fatigue and joint/muscle pains. (Gyn, two different GPs, and my rheumatologist.) Maybe it's because I'm young(ish), maybe it's because I've lived in the PacNorthwest for the past three and a half years. But it's never been an issue.

Tarnalberry- that's excellent! I was tested only by 2 docs, and one was to check for hypo/hyperparathyroidism (or to rule it out) and the other was follow-ups with celiac specialists. I know more awareness is growing about the role Vit D has in many diseases and physical symptoms, so hopefully more people will get as comprehensive testing as you did.


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I hate gluten Apprentice

OMGolly. I know what that person is feeling. I begged my doctor to run the test for vit deficiencies. He rolled his eyes and did it to please me while saying " Only gereatric people and menopause people have vit deficiency" Well when the results came back I needed b12 injections and a D perscription. I felt good after my diet change, better after my b12 and ready to take on the world with my D. I know I have wrote my story a few times but it has been a week and I can not beleive how well I feel and I can say it has been at least 6 years since feeling this way. I can very much relate to him. I hope he is on the road to feeling better.

mushroom Proficient

I got tested because I asked for it, was told that my low, low normal was okay, then insisted on prescription, then was told by my rheumatologist that I needed to be taking more than once a month, that I "needed to fill up the tank" first before dropping back to monthly, otherwise I was just sustaining my low level.

GlutenGuy36 Contributor
See his email below: How can this be so? How can Dr's miss this. How many people out there with Fibro have low vitamin D and no one bothered to check? Anyone out there feel like crap...hurt all over and no one bothered to check your vitamin D levels??

-------------

I hurt ALL over and it took until noon or longer to feel a little better. I was taking 6 tylenol a day and advil too. I don

holiday16 Enthusiast

I was diagnosed 2 or 3 years ago with borderline low D. I think it was 21. The test has been changed to where that is not considered normal anymore. I just retested last month and it's back down to 35 which is considered normal, but I was having trouble sleeping and pain again. Playing around with it I found I feel best at 80, but without supplementing my levels plummet no matter how much time I spend in the sun. The NP I talked w/ thinks for some reason I can't absorb it. All other vitamin levels are great. It's just the D. Tell your brother to make sure and keep checking it even after it's back up!

Look up Fibro and D and you'll see that there are many articles questioning if some people that are diagnosed really just have low D. I've also read that people w/ Fibro tend to have low D and they don't know why. My FM is totally under control and the pain I was getting w/ low D was different. Over time you begin to recognize the symptoms. One big one for me is if I cough and I feel a pop or cracking feeling in my chest. NP says that probably the start of osteomalacia. Goes away as my D levels go up.

BTW, even at a level of 21 I could barely get out of bed and felt half dead. Can't imagine how bad your brother must have felt!

Paulette

JerryK Community Regular
BTW, even at a level of 21 I could barely get out of bed and felt half dead. Can't imagine how bad your brother must have felt!

Paulette

They said at his level, they had never seen anyone walking around...(less than 4)

mbrookes Community Regular

I was diagnosed Jan of 2008. A few months later my Dr. started me on B12 shots (I give to myself once a month) and more recently on prescription D. I just keep feeling better and better, unless I slip up and poison myself.

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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!
    • knitty kitty
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    • trents
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    • Scott Adams
      Wheat in cow feed would not equal gluten in the milk, @Wheatwacked, please back up extraordinary claims like this with some scientific backing, as I've never heard that cow's milk could contain gluten due to what the cow eats.
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