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Vitamin D Deficiency--Poll

PainfulSpaghetti

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cahill Collaborator
cahill
Posted

I take 50,000 IU weekly, + 2000 daily and I am out side a minimum of 45 min a day and my vitamin D is FINALLY up to 28

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color-me-confused Explorer
color-me-confused
Posted

Tested at 15, 8 weeks of 50,000 weekly and 2000 daily, along with only sunscreening my face, got me to 27. Now on 1000 daily.

Reba32 Rookie
Reba32
Posted

I had all my vitimin and mineral levels tested after my Celiac dx, and everything was deficient. Everything, not just D (though that one seems to be the fashionable one to test most commonly these days, there are several other very important vits and minerals that should be tested).

Even with mega-doses of supplements, while your villi are healing, you'll probably still be low or deficient because of continuing malabsorption issues. I've read it can take as long as 5 years to fully heal, IF you don't get glutened.

I've been gluten-free since Dec. 2009, and I go for my physical next month, so will have all my vitimin and mineral levels tested. I'm hoping they're up a bit from last time, but I'm not expecting anything miraculous just yet. ;)

tennisman Contributor
tennisman
Posted

Mine is low , it started to go up than stopped going up . I take sometimes quadruple my dose and it does nothing :S

akceliac Newbie
akceliac
Posted

I too was dx with D deficiency, but only after 11 years of bone pain and other side effects due to other serious vitamin and mineral deficiencies which were not even considered by the local medical community until I presented with life threatening symptoms.

As a last ditch effort to "get me out of the office", the doctor finally tested my Vit D levels. The total D2 & D3 was 12. At first she said to take 400 IU daily. After consulting with her colleagues she wrote a prescription for oral D2 at 16,000 IU daily for three months.

I couldn't afford the over $100/week cost of the Rx, so I researched the internet for Vit D deficiencies and found that D3 is the most effective form to take and I started taking 10,000 IU daily. It's very inexpensive to purchase OTC. My numbers finally increased to 75. The Rheumatologist wants to see 80.

Most doctors assume that I'm going to overdose on Vit D3 because I take larger than AMA recommended doses; but it's been 4 years since I started taking the Vit D3 supplementation and my numbers are still between 65-75 and my bones are no longer hurting.

PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

Again, Thank you all so much for your replies. It's always heartbreaking to learn that so many of us struggle, but at least we aren't alone!

thleensd Enthusiast
thleensd
Posted

Yup. Was 18 and falling (no one told me until an observant doc looked back at the numbers months later), went on 50K for 6 weeks-brought to 59, supplemented at 2k/day, dropped to 46 (still normal, but didn't like the direction), now I take 5k multiple times per week (3-6) and I seem to be holding pretty steady: 56. Consider looking into taking magnesium with the D.

Now if I could only get my iron stable...

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PainfulSpaghetti Newbie
PainfulSpaghetti
Posted
  • Author

Now if I could only get my iron stable...

Nor-TX Enthusiast
Nor-TX
Posted

My Vit D stays in the mid 20s even though I take 5,000 a day and I get 200 mg of Venofer every 5 weeks with my Remicade infusion. Iron levels are improving slowly...

AVR1962 Collaborator
AVR1962
Posted

I am curious as to how many of us have Vitamin D defiencies. Mine was severe, and I struggle to raise my count, and have been all year. Anyone else?

Yes, caused me all kinds of trouble.

Sarah Alli Apprentice
Sarah Alli
Posted

I was tested for vitamin D deficiency when all this first started, it was quite low. But everyone that I know that's been tested was low- I think it's baseline, especially in Alaska where I was living at the time.

I was retested about two months after gluten-free, now within normal limits! Still on the low end, but it's a victory for sure. Just need to get my iron up, now.

Lori2 Contributor
Lori2
Posted

It has taken me four years to get my vitamin D levels up to mid-range taking 5,000 units a day plus an extra 50,000 weekly. I've just been gluten free since January.

mushroom Proficient
mushroom
Posted

I just gave hub a wakeup kick. He has osteopenia and has (supposedly) been taking calcium and magnesium along with 50,000 units D and I made him get retested for D - his level was only 30 :o He said well that was normal. I told him if he were one point lower he would be insufficient, that he needs LOTS of D, like 70 or 80. He was all, like, HUH??? Exasperation!!!!!

Cattknap Rookie
Cattknap
Posted

Vitamin D, Iron and thyroid - all very low because of celiac.....but all things that will improve or become normal as I remain gluten free,

watata Apprentice
watata
Posted

I was diagnosed by my cardiologist in March. My level was 13. Put on 50000 a week , after 4 months went up to 26 , moved up to 50000 every 5 days and now at 48. Diagnosed with Celiac 5 days ago. Vit B12 is low edge of normal, magnesium ok, they didn't test folic acid and iron is right at 12. was 8 last august. Crazy, but will keep an eye on it all.

JoshB Apprentice
JoshB
Posted

38 which counts as sufficient, they say. I drink a good bit of milk, try to get some sun and take some supplements (just over the counter).

Worth noting that Wikipedia says 30~50 is the desired range, and that anything over 50 doesn't provide increased benefit and is in fact a little risky.

domesticactivist Collaborator
domesticactivist
Posted

We take fermented cod liver oil from green pastures. It is the most nutitional available source.

T.H. Community Regular
T.H.
Posted

My vitamin D levels were low and continued dropping for a year when I was on the gluten-free diet, even though I am outside in the sun quite a bit on a daily basis. I reacted to all the vitamin D supplements, as well as all food that is vitamin D supplemented, so I was pretty worried where this was going to lead.

Then I got rid of as much gluten cc as I possibly could, even that which is allowed in gluten-free products (my only processed food right now is oil, salt, and one whole grain), and after a year of that, my vitamin D levels are up to high-normal levels. Very happy that this is now the case, phew!

jemms Apprentice
jemms
Posted

mine was very low and I now take liquid Vitamin D...no wonder I was feeling so depressed and overall sluggish...

  • 2 weeks later...
anabananakins Explorer
anabananakins
Posted

I was diagnosed with Vit D deficiency a year ago July... 22 with a reference range of 51-140. I used to feel like death warmed up. Retested in July and I was 107 - woot! I think I take 3000 a day (it's three pills anyway).

I live in Sydney, Australia too - you'd think I'd be getting enough sunshine. I don't go and lie in the sun, but just walking to the bus stop in the morning, and walking up the street a few times a week at lunch time gets me enough sun to tan my face arms and feet. Nope. Craziness. I don't know how people going through long dark winters have any vit D at all.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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