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Vitamin D


detritus

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detritus Apprentice

I just got blood tests back that show I'm extremely deficient in Vitamin D. I started doing a little research on the internet about vitamin D, and found an interesting study about vitamin D and MS. They mentioned that Vitamin D helps the body to differentiate between "self" and "enemy". Since between the Celiac's and my RA, my body is definitely attacking itself, I found this very intriguing. Has anyone else come up vitamin D deficient?


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kareng Grand Master

I did. I think a lot of us have. Take your supplement and feel better. I know of people who are deficient and don't have celiac disease. We don't get it in our diets and we don't go in the sun without sunscreen. Also, in most of the US and Canada the sun isn't intense enough many months of the year.

Looking for answers Contributor

Unfortunately, yes. I began becoming interested in this years ago, thanks to Dr. Mercola. He has written a lot about the connection between Vitamin D deficiency and autoimmune disorders, cancers, etc. I believe this contributed a lot to my health problems...not that it causes gluten intolerances, but it may be enough to trigger or "activate" the gene if you have it. Same with RA, MS. Check out mercola.com....you'll probably become as fascinated by it as I did.

kayo Explorer

I live in New England where the sun is sometimes more absent than present. I'm outside soaking up vitamin D (and freckles) whenever that orange globe makes an appearance. Despite my attempts at getting natural vitamin D and taking supplements I've struggled with vitamin D deficiency for years and the only advice my RA doc gave me was 'take vitamin D'. I had a range of 11-20 for years despite taking 1000mg of D daily. Normal range is 25-80. I think he was under the impression I wasn't taking it. You'd think that he would have been clued that something was going on, right? Sigh :angry: It wasn't until I saw the celiac specialist did she make the connection. She put me on 50k units weekly for 8 weeks. That's over and I now take 2000 mg daily. My level is now a healthy 36. :) This a great clue that the diet changes are working. I still have some things going on that are unknown (maybe fructose intolerance, maybe bacterial overgrowth) but I'm healing.

Roda Rising Star

I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70. When I started supplementation about 1 1/2 years ago my level was around 17. It is up past 60 now. I have been taking prescription 50,000 iu of vitamin D since then and all my doctors said for me to stay on it year round.

tictax707 Apprentice

I can't remember what my levels are, but they were also pretty low. I have osteopenia, but it's not just celiac related... I am also an endurance athlete, and some days I'll burn more calories in a workout than I do in a typical day. It's hard to keep on top of the caloric outgo versus income. My doctor also put me on supplements, but the ones that were really high in vitamin D also gave me wicked gas. :( So I am trying to keep on top of it with my old caltrate supplement, soymilk, and time in the sun. I get about 1700-1800 daily. It's been less than a year since I found out about the osteopenia, but I am not sure how long it would take to turn the vitamin D levels around.

frieze Community Regular

Vitamin D is measured in IUs (international units) the prescription ones, the little kelly green gel caps, are D2--- not the better of the two commonly available forms. What you really want is D3 which you can get at the health food store, and probably the grocery. The dosage i have seen suggested is 1000 units per 25# of body wt, daily, until levels are up where the need to be.


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mushroom Proficient

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

detritus Apprentice

I don't believe 1700-1800 is a day is enough to start with. That's a good maintenance dose though.

The way my rheumatologist described it to me, if your gas tank is empty, you don't put in just one gallon - that will barely get you to the next gas station. You need to fill up your tank first, and then keep it topped up, otherwise you are always running on empty. So I was taking 50,000 iu every week initially, and now every month (of D3). 50,000 iu seems to be the normal kick-start dose.

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

quincy Contributor

Yes, that's what I was given-the 50,000, iu one per week. I'm supposed to take it for 8 weeks. I'm wondering if eventually my body will be able to extract the vitamins it needs naturally, once my villi are healed. Also, my RBC count is low, but my iron levels are ok......what would I take to increase my red blood cells?

Thanks for all the responses, by the way:)

my endo doc put me on 50,000 iu's twice a week for 6 weeks, then a re test of my levels. I wanted the D3 but she told me it wasnt available in this dosage. once you get your levels up then you can do maintenance at 2000 or so a day with D3.

it is also recommended to get a bone density test and to take calcium plus D twice a day. my bone density test revealed osteopnenia in my right hip bone and I am a male who works out and runs... it was quite a shock.

red meat is good for red blood cells and so is spinach etc.

sb2178 Enthusiast

RBC: possibly folate or B12 (or both)

You'd have to have your dr look at the size of your RBC (it helps if you have a baseline) or other bloodwork.

Yeah, I've been deficient/low now and previously despite OTC supplementation. And no, I don't wear sunscreen but I do live in the cold dark north. It's fairly common. The high dose did bring me back up to normal, but then my levels drop again... I'm now just on 4,000 IU/day endlessly.

The connections btwn D and autoimmune diseases are interesting, but given the length of time needed to study the development of AI diseases, it's difficult to clearly establish a causal association rather than a correlation (present!) in humans.

  • 1 month later...
anabananakins Explorer
I've been told by my endocrinologist, gyn and gi doctor that my vitamin D level should be a minimal of 50 and optimal at 70.

My endocrinologist (I'm insulin resistant) called me today with my results and gave those exact ranges. And mine was 2! And I live in Australia! I was so surprised but now that I've been reading about it, I'm freaked that more people aren't aware. I can't work out what my dosage is compared to yours, but I'm supposed to take 3 tablets and the bottle says the recommended dosage is only one.

This will bring me up to a nice round 20 (various) pills to take each day. Packing for 4 weeks away is going to be fun...

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • 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 
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