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Vitamin D

JerryK

By JerryK
in Coping with Celiac Disease

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JerryK Community Regular
JerryK
Posted

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

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ravenwoodglass Mentor
ravenwoodglass
Posted

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
ang1e0251
Posted

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

DeerGirl Apprentice
DeerGirl
Posted

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
DeerGirl
Posted

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
tarnalberry
Posted

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
DeerGirl
Posted
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
I hate gluten
Posted

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
mushroom
Posted

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
GlutenGuy36
Posted
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
holiday16
Posted

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
JerryK
Posted
  • Author
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
mbrookes
Posted

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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    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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