Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Vitamin D

JerryK

By JerryK
in Coping with Celiac Disease

Recommended Posts

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

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    2. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    3. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
    4. trents
      - trents commented on Jefferson Adams's article in Other Diseases and Disorders Associated with Celiac Disease
      6

      Celiac Disease Patients Face Higher Risk of Systemic Lupus

      What kind of practitioner did the blood test? Was this a medical doctor, a naturopathic doctor, a GI doc? I would certainly follow up with them and ask why they advised you not to eat red meat. I mean, it could be something like they, themselves, are a vegetarian and give that advice to everyone. Have you had an endoscopy with biopsy of the small bowel...
    5. knitty kitty
      - knitty kitty replied to EndlessSummer's topic in Food Intolerance & Leaky Gut
      2

      Dizziness after eating green beans?

      @EndlessSummer, You said you had an allergy to trees. People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits. Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease. Switching to a low histamine diet for a while can give your body time to rid itself of...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,692
    • Most Online (within 30 mins)
      7,748
    Ali Zaib
    Newest Member
    Ali Zaib
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
    • sha1091a
      Issues before diagnosis

      By sha1091a · Posted

      I found out the age of 68 that I am a celiac. When I was 16, I had my gallbladder removed when I was 24 I was put on a medication because I was told I had fibromyalgia.   going to Doctor’s over many years, not one of them thought to check me out for celiac disease. I am aware that it only started being tested by bloodwork I believe in the late 90s, but still I’m kind of confused why my gallbladder my joint pain flatulent that I complained of constantly was totally ignored. Is it not something that is taught to our medical system? It wasn’t a Doctor Who asked for the test to be done. I asked for it because of something I had read and my test came back positive. My number was quite high.Are there other people out here that had this kind of problems and they were ignored? 
    • trents
      Dizziness after eating green beans?

      By trents · Posted

      Welcome to celiac.com, @EndlessSummer! Do you react to all vegetables or just specific kinds or families of them? What you describe with green beans sounds like it has an anaphylaxis component. Like you, walnuts are a problem for me. They will often give me a scratchy throat so I try to avoid them. Does it matter if the vegies are raw or will-cooked in how you react to them?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.