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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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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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