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Vitamin D Deficiency--Poll


PainfulSpaghetti

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cahill Collaborator

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

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

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

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

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

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

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

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

Nor-TX Enthusiast

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

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

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

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

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

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

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

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

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

T.H. Community Regular

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

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

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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    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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