Hi, I was diagnosed with celiac disease 3 years ago. About a year ago, I began experiencing weakness on the right side of my body, starting with pain in my right temple and dryness in my right eye. Two months ago, discomfort began in my lower back and right arm. I had poor concentration and brain fog. Thankfully my gp tested me for low vit d and results came back with a reading of 9. I was told to supplement with vit d3 granules (60,000) iu per week for 8 weeks and take 1,000 mg calcium per day. After that stop supplementation for a month then retest. I have now completed the 8 week dosage but have started to feel the weakness return on the right hand side of my body. I feel I should be on a maintenance dosage of vit d3 now, unsure how much I should take and how much calcium and magnesium I should take daily to stop symptoms returning. ( please note I am of Asian origin with dark skin and my exposure to sun is limited) thanks

Asked by  auzmac29432600 on May 3, 2015

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  • auzmac29432600
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     auzmac29432600 on

    See title

    Answered by  auzmac29432600 on

  • IAW
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     IAW on

    When you say “completed” the 8 weeks, how much time has gone by? I was wondering how fast the “symptoms” started to come back?
    He was very wrong to tell you to stop supplementation! You are correct in that you need a maintenance dosage or you will go right back to being “low”. The 60,000iu translates to 8500iu a day. He should have retested when you were done with the 8 weeks and then we would know how far your level has increased. So I would put yourself back on the 8000 – 9000iu and depending how long you stopped for, I would then give you a retest date. Since you are already having symptoms maybe wait until they subside again and then retest. I think with all your health issues you may need to take this amount for awhile. With Celiac disease we do not even know how much you are absorbing so a retest is essential. (Most people need about 5000iu to reach 50ng/ml which is our recommended level to maintain. Some people may need more than this and it depends if you were sick or overweight to begin with.)
    If you think you get enough calcium in your diet, then cut back on the supplements. We promote a lot of magnesium and daily intake for a woman should be 500mg or as much as you can tolerate without getting loose bowels. Very important reading at http://www.vitamindcouncil.org/about-vitamin-d/vitamin-d-and-other-vitamins-and-minerals/.
    How is your Celiac doing after taking the Vitamin D? Is it any better?

    Answered by  IAW on

  • auzmac29432600
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     auzmac29432600 on

    Hi, thanks for the quick response. It has been 2 weeks since I completed my 8 week course of vitamin d3. Since then, I did notice the weakness slowly returning to the right hand side of my body. I also frequently suffer from colds and allergies. Fortunately, I was told that despite my celiac, I am absorbing vitamins well as my levels of iron and b vitamins were satisfactory.

    Otherwise, my celiac does seem to be quite settled since I began vitamin d supplementation. Curiously, symptoms associated with low vitamin d are more troublesome than the celiac!
    I will definitely get retested and resume a maintenance dose right away. Thanks

    Answered by  auzmac29432600 on

  • auzmac29432600
    Participant
     auzmac29432600 on

    Hi, thanks for the quick response. It has been 2 weeks since I completed the 8 week course of vit d3. In those two weeks, I have noticed a slow return of deficiency symptoms ( right hand side weakness, brain fog, poor memory). I also seem to suffer generally from constant colds and allergies and a huge lack of energy.

    Curiously, my celiac symptoms are fairly settled and vit d deficiency symptoms are causing greater discomfort! My gp was confident that I was absorbing well despite the celiac as my iron and b vitamin levels were satisfactory.

    I will definitely arrange for a retest and begin a maintenance dose straight away. My go emphasised that calcium was important to take along side d3 but there was no mention of magnesium. Should I insist that my magnesium and calcium levels are retested too?

    Thanks

    Answered by  auzmac29432600 on

  • IAW
    Participant
     IAW on

    If you are not aware already, Celiac disease is connected to low vitamin d levels. Raising your levels should ease symptoms or even cure it. Vitamin D should also improve the low energy, you should get less colds and allergies should improve.
    Calcium levels are usually checked in general blood work to make sure they are not too high or too low. You could ask for a Magnesium RBC. This will give you a general idea how your levels are. My doctor always wants this in the upper part of the range not just “in range”.
    Calcium is important but not any more important than many other vitamins and minerals you need to go with the D, like magnesium. (Reference the above link in my first reply!)
    If you would please let me know once you eventually retest, what your level is. Make sure you include the unit of measurement whether it is ng/ml or nmol/l.

    Answered by  IAW on

  • auzmac29432600
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     auzmac29432600 on

    -Hi I have a query which I hope you can help with. When I was prescribed vit d3 3months ago it was in granular form so I mixed in milk and had 10,000 Iu a day. After completing my course, I stopped supplementing and my symptoms returned. I then tried 5,000 in soft gel capsules daily but these caused acidity. I have coeliac and small sliding hiatus hernia so. Just wanted to know which type of vit d3 is best for someone with my sensitive stomach conditions and if there is a particular make you can recommend.
    -Also, is it possible the reason why my d3 level 9 NG/ml was so low is because of coeliac and what is the connection between the two?
    -lastly my doc told me for life I need to take a calcium supplement because of coeliac….is this necessary or is just d3 and 500mg magnesium per day sufficient for bone health?

    Thx in advance for your assistance.

    Answered by  auzmac29432600 on

  • IAW
    Participant
     IAW on

    Biotech makes good Vitamin D supplements. They are capsules but not gel capsules. I suppose if capsules give you problems you could break them open and dump the contents into something. Carlson’s also makes drops that you can add to something.
    At this point in time it appears that having low levels of Vitamin D will cause Celiac disease. Also once the Celiac starts I would assume malsorption could make it hard to absorb Vitamin D supplements. This would perpetuate the problem.
    I cannot really comment on the calcium. Someone with Celiac may need the extra supplement because of absorption issues.

    Answered by  IAW on

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