Vitamin D Deficiency?

[Seamuskitty]

Hello everyone.

Forgive my newbie-ness but I would like to know what the relationship is between Celiac Disease and Vitamin D deficiency?

My blood test came back saying my Vitamin D level was 23.2 and I was taking a B vitamin, De and Folic acid supplement at the time. The test also showed my hemoglobin to be normal and my Vitamin B12 to be very high (776!!).

I don't know what it all means except that the Vitamin D is considered to be too low.

I am in the diagnosis stage, right now eating a couple of pieces of bread a day in anticipation of a biopsy. My Celiac Panel was taken when I was eating gluten-free and was a weak positive--posted on another thread. Oh, how much gluten should I be eating in order to show "enough" damage in my biopsy for a proper diagnosis...that sounds like such a stupid question...but is 1 or two pieces of bread a day enough..I don't want to eat it at all! Yuck!

I have an appointment with a gastro doc who was recommended by my local support group and I will see him on July 15.

Meanwhile I feel terrible. The regular doc gave me samples of Amini-3 and they have run out but hopefully in light of this blood test, she will prescribe me some Vitamin supplements.

Is it true that as long as I am eating gluten in anticipation of my biopsy, I may not be able to absorb the vitamins anyway..? I feel like the walking dead!

Thanks!

Julie

[ang1e0251]

You're right, you may not be able to absorb them now. There's no way of knowing for sure but you are probably deficiant because you cannot absorb them now. My friend's daughter had to re-test(don't ask) and they had her eat one piece of bread a day. Her endoscopy was positive.

[Foxfire62]

The whole point to celiac disease is that gluten destroys the villi of the small intestine. Without the villi, you will have difficulty absorbing nutrients. So, if you have a deficiency, by all means take supplements. Taking the supplements will not affect the outcome of your biopsy.

Eating the gluten is necessary to ensure a proper biopsy, especially after you've been gluten-free. How long you need to do this is a topic I'm not sure about. Many say eat at least 2-4 pieces of bread daily for about 2-4 weeks.

I know what it's like to feel miserable until you're diagnosed. But if you need a confirmation, then absolutely do it. Otherwise, just assume you're a celiac and remain on a gluten-free diet for life.

[Seamuskitty]

Thanks for the replies.

I am just going to have to keep it together for another couple of weeks. I just keep telling myself that once this part is over, I will stay on the gluten-free diet and I will feel better then.

I just keep imagining myself healthy and vibrant!

[trents]

Back to you main question; the relationship between Vit D deficiency and Celiac Disease. Vit D is one of the fat souable vitamins. Destrucition of the nutrient absorbing micro villi seems to particularly affect the absorbption of fat soluable nutrients, which is exacebated if you also have chronic diarehah. Many celiacs notice the undigested fat floating in their stool.

[mushroom]

I'm so glad you are on to the Vitamin D problem right away. I wasn't. Three years ago my Vit. D was borderline low, and my DEXA scan showed I had lost bone density quite rapidly but still not into osteopenia. I didn't know enough then. 18 months later I self-diagnosed with at least gluten intolerance, if not celiac; later found this forum, started putting two and two together, got retested for D, B12, folate, etc. Started supplementation with D, B12 and folate amongst other things, but it was too late--a year ago I had a compression fracture of my spine, just diagnosed last month after a year of back misery. So 2 yrs after the scan, I had a fracture which my doc says is diagnostic of osteoporosis. Going in for another DEXA scan on Friday to see how bad the osteoporosis is. Vit.D is not something to mess around with. Start taking major supplementation right away. And initially you will need to take higher dosages to "fill up the tank" (about 50,000 iu every week for the first month; later 50,000 iu once a month should be sufficient (have them check your levels). It's like you have an empty gas tank; put in one gallon and it will be barely enough to get to the next gas station and you will always be running on low. Put in 10 gallons, and keep toppiing up with one gallon and you will be running on full all the time. Your car doesn't know it is running low, but your body does. I hope you are able to preserve your bone mass

[MGoers37]

Spend a little time in the sun, sunscreen free. Sunscreen blocks a large amount of vitamin D production

[spanish-road]

My whole family including myself that lives up in way north alaska has a very low D. We were supper sick since well no sun in the winter and its just to damn cold to expose yourself to the sun.

[Seamuskitty]

Its funny that intuitively I have always been convinced that if I could just take a week off and hang out on the beach, I would feel all better...

I really do crave sunshine but I am extremely fair anyway and my pallor now is a shocking gray/green...with dark circles under my eyes...Not attractive.

The doctor doesn't seem to be in a hurry to get me a prescription for supplements so I am trying to sit out in the sun for a little while each day. And I have some over the counter gluten-free supplements made by Nature Made that have Vitamin D, B6. B12 and Folic Acid. I may not be able to absorb them right now because I am still eating gluten, but they seem to be making me feel a bit better.

Hopefully when I see the doc again, she will prescibe the high dose Vitamin D that I need.

Gosh I don't like talking about poo...but I guess if everyone else does, its ok...

What does it mean to have frothy poo? I think mine is right now...nasty stuff...all kind of broken up and airy--floaty...speckly. Yuck.

I can't tell if its fatty...I swear I wouldn't know a normal poo anyway. This has been going on for so long, I probably haven't had one for ages.

[Bman23]

hi. I haven't been diagnosed as celiac (although I'm suspicious), but I was diagnosed with a vitamin D deficiency about six or so months ago. it took a few months of 50,000 units twice a week to bring it up. Then my doctor dropped it down to once a week. And now every other week.

The main difference I noticed with my vitamin D back up was reduced joint pain, although it's still there from time to time.

initially, I used the vitamin D2 prescribed, but then I found a website and got a bottle of D3.

Here's the one I used:

Open Original Shared Link

also, here are a bunch of links connecting vitamin D to celiac:

Open Original Shared Link

[Seamuskitty]

Very interesting about putting it ON the skin. I didn't know you could do that...

I will be eating gluten for another week or so...not sure when the endoscopy is yet. Hopefully after I quit eating gluten and start to heal I will be able to take a supplement and it will be absorbed.

Full on tanning isn't possible out in the break area at work... But I have been sitting out there during my lunch break. I won't let myself burn because I can't stand it out there for very long. Its extremely hot and sunny where I am.

Thanks very much for the info.

[Roda]

I am afraid that doctors only prescribe D2 the vegetable form of the vitamin and that is fine for people with wooden heads but not for humans. The form the human body uses is D3 and although it's true that young people are better at converting D2 into the D3 that is required it's possible, indeed quite common for older people not to be able to do that.

Open Original Shared Link sets out the science

Open Original Shared Link sets out the common sense point of view.

Open Original Shared Link they also do 5000iu pretty cheap.

I have absolutely no financial or other connection with that company. I just think it's the only source of 50,000iu online. If you know different than please let me know.

I tend to disagree with this. I have been taking the D2 rx since Jan. My vit D level was around 17 and by Apr. it was 47. It probably is higher now so it does work and I don't have a wooden head. All joking aside here are a couple of other threads with links to support the vit D2 and the one article was published this year.

https://www.celiac.com/gluten-free/index.ph...mp;#entry534409

https://www.celiac.com/gluten-free/index.ph...c=58652&hl=

There are links out to supporting articles.

[Roda]

I have set out my thoughts on why the paper Vitamin D2 is as effective as vitamin D3 in maintaining circulating concentrations of 25-hydroxyvitamin D is flawed and should not be relied on here.

The only use D2 if your a plant or have a Woodenhead wasn't directed at anyone here but comes from Dr Davis of the heartscanblog. I can't find that actual comment at the moment but this post is relevant here.

Open Original Shared Link

What the pharmacist means is that you should replace your vitamin D3, or cholecalciferol--the form recognized as vitamin D by the human body--with the plant form of vitamin D, vitamin D2 or ergocalciferol.

Since when is a plant form of a hormone (vitamin D is a potent hormone, not a vitamin; it was misnamed) better than the human form?

I've previously talked about this issue in a blog post called Vitamin D for the pharmaceutically challenged.

The notion that D2 is somehow superior to the real thing, D3, is absurd. I use D3 only in my practice and have checked blood levels thousands of times. As long as the D3 comes as a gelcap, drops, or powder in a capsule, it works great, yielding predictable and substantial increases in blood levels of 25-hydroxy vitamin D. If it comes as prescription D2 (or over-the-counter D2), I have seen many failures: no increase in blood levels of vitamin D or meager increases.

Prescription status is no guarantee of effectiveness.

We can disagree all day long and that is alright. I'm not here to change anybodys mind or give advice. I'm simply giving my exerience. For me the prescription dose has worked and for others it has too. I'm not disputing the D3 as it has a very proven track record, but this study imho warrents further investigation into the effectiveness of the D2.

[Seamuskitty]

I tend to disagree with this. I have been taking the D2 rx since Jan. My vit D level was around 17 and by Apr. it was 47. It probably is higher now so it does work and I don't have a wooden head. All joking aside here are a couple of other threads with links to support the vit D2 and the one article was published this year.

https://www.celiac.com/gluten-free/index.ph...mp;#entry534409

https://www.celiac.com/gluten-free/index.ph...c=58652&hl=

There are links out to supporting articles.

Thanks for posting more info and the links Roda. Sometimes its hard to sift through previous threads. There is so much info on this forum that when you search for something like "Vitamin D Deficiency" you get thousands of results. I'll read the links!!

[Tiff]

Hi there,

In January I had a vitamin D deficiency of 6. I am only 30 years old and I have had Hashimotos Thyroid Disease since the age of 14 and I've never had this problem before. The doctor prescribed 50,000 icu of Vitamin D once a week for 3 months and I started to feel better halfway through the process. I am off of the Vitamin D now and I'm slowly feeling the way I was before, and I think I need more Vitamin D. The sun does help, but sometimes (at least for me) the sun isn't enough.

I hope you feel better soon!

TIFF

[Seamuskitty]

Hi there,

In January I had a vitamin D deficiency of 6. I am only 30 years old and I have had Hashimotos Thyroid Disease since the age of 14 and I've never had this problem before. The doctor prescribed 50,000 icu of Vitamin D once a week for 3 months and I started to feel better halfway through the process. I am off of the Vitamin D now and I'm slowly feeling the way I was before, and I think I need more Vitamin D. The sun does help, but sometimes (at least for me) the sun isn't enough.

I hope you feel better soon!

TIFF

Thanks Tiff--

Wow you must have felt terrible with that deficiency! I'm glad you felt better eventually. I hope it doesn't drop down again though.

Its good to know that there are folks who care!! Being deficient in Vitamin D really makes you feel rotten!

I am seeing the "regular" doctor tomorrow and hopefully she will prescribe something for me. Meanwhile I sat on our screened in porch for most of the weekend and got as much sun as I could stand. I have been taking an over the counter supplement too. I do feel a bit better already--

[Seamuskitty]

Hi there,

In January I had a vitamin D deficiency of 6. I am only 30 years old and I have had Hashimotos Thyroid Disease since the age of 14 and I've never had this problem before. The doctor prescribed 50,000 icu of Vitamin D once a week for 3 months and I started to feel better halfway through the process. I am off of the Vitamin D now and I'm slowly feeling the way I was before, and I think I need more Vitamin D. The sun does help, but sometimes (at least for me) the sun isn't enough.

I hope you feel better soon!

TIFF

Hi again--I think I was prescribed the same thing you were. 50,000 units ergocalciferol once a week for 12 weeks, then I have another test...then I'll probably take then once a month...we'll see.

Hopefully I will feel better soon!

I noticed people disagreed about treatments rather heatedly on this thread and some others...

All the disagreement about which Vitamin D is better is extremely confusing for a new person... I'm just sayin'.

What's a newbie to do?

[Roda]

I would just ask your doctor. I started to feel better about a month after taking my prescription I couldn't believe the difference. I am not against D3 it just happens that the doctor prescribed the D2 (at the time I did not know the difference and since have looked into it). In looking into it majority of research does agree that D3 is better than D2 but when the article I found about them being both just as effective it caught my attention. I do think the study has merit and warrents more research. I had my labs redone 3 months after the rx supplementation and my levels increased alot (17 to 47). So for me I'm sticking with it. Also I my insurance pays for most of it and I have a copay of $10 for a three months supply then I can turn around and claim the copay to my FSA for reimbursement. OTC supplements are not eligible unless you get a statement of necessity from your doctor. I may need to do that in the future if necessary.

[Seamuskitty]

I would just ask your doctor. I started to feel better about a month after taking my prescription I couldn't believe the difference. I am not against D3 it just happens that the doctor prescribed the D2 (at the time I did not know the difference and since have looked into it). In looking into it majority of research does agree that D3 is better than D2 but when the article I found about them being both just as effective it caught my attention. I do think the study has merit and warrents more research. I had my labs redone 3 months after the rx supplementation and my levels increased alot (17 to 47). So for me I'm sticking with it. Also I my insurance pays for most of it and I have a copay of $10 for a three months supply then I can turn around and claim the copay to my FSA for reimbursement. OTC supplements are not eligible unless you get a statement of necessity from your doctor. I may need to do that in the future if necessary.

Thanks Roda--I feel good about this doctor and figure she has prescibed the appropriate thing for me. If I don't feel better and if my level doesn't go up, I will look into something else.

I am just so glad to be getting some help!

[Roda]

I probably will be going to once a month too. I still have refills left and talk about cost effective! I hope it works for you.

[mushroom]

While I do appreciate that this is a cost effective way of supplementing with D3 it really isn't ideal.

Without a doubt daily supplementation with an amount that brings your total daily intake to just above the amount your body uses daily is the most effective.

One of the problems with Vitamin D is that it enables so many other very different functions to operate properly. Of particular importance is the immune system. Having a high dose of vitamin D monthly means there is a greater spread from low to high and then declining to low again.

The fine tuning of the immune system works best if there aren't sudden changes. There is no catching up to do.

What we often hear is people who go away for a winter sunshine break and get a good dose of vitamin D sunshine only to catch a cold when packed in the aircraft breathing other peoples germs. Why didn't the new vitamin D protect them well it's probably because the fine tuning of the immune system hasn't caught up yet with the new plasma levels. It would be better if people took their vitamin D before going on holiday so their bodies had adjusted to the higher levels before being challenged.

In the same way knowing the half life is only just 3 weeks this means you are going from replete to low status every month. Supplementing daily is far better because you attain and maintain a safe level which your body adjusts to throughout the year.

Wow that does make a lot of sense to me, Ted. I didn't know about the three-week half life. I had been taking the monthly dose (cholecalciferol) but was told to take it weekly for a while "to fill up the tank". Then they said it was too high and not to take it for a couple of months and I dropped way back down to borderline. I also have osteoporosis and am on Humira so my immune system is in the dumps anyway. I need to find an alternative to this yo-yoing.

[mushroom]

Thanks Ted. Interesting links. My D had dropped right back down to 32 and I could tell the difference in the way I felt. Sunbeds are not an option for me with northern skin type and various skin cancers including melanoma. This is a problem for me as it makes me avoid the sun

Living at a low (southern hemisphere latitude) with a hole in the ozone layer is even more complicating. I just have to find the right supplement to keep me in a steady state

[darlindeb25]

My Vit D was 26, and my neuro said it was fine. I know it's not fine, I know optimum is 50, so I am taking Vit D3, 2000IU's. I've been told by a few that 2000IU's will not cut it. I am asking for bloodwork to be done again in August.

The test also showed my hemoglobin to be normal and my Vitamin B12 to be very high (776!!).

Your B12 is not high! I take 5000mcg of B12 methylcobalamin daily, and my level is 1016, down from 1237. My neuropathy is finally beginning to show a little improvement, I have been taking B12 for almost 5 yrs now. My neuro told me to stay on the prescribed dose, which wasn't prescribed, I did this myself finally. If you were taking B12 when tested, your test is showing a level with your B12 supplement. Chances are, you definitely need to be taking the B12 supplement.

[darlindeb25]

Thanks for the Vit D advice...I was thinking I probably need to increase it. So, would you take it all at one time, or divide it up over the day? I do try to get some sun, yet it's difficult. The best sun here is when I am inside working. Then, you throw in the fact that it rained 26 of 30 days in June here...wasn't much sun then.

[pele]

Yikes!! I hardly know where to jump in here.

The study supposedly supporting D2 that one finds by following the links was published by science daily.com a while back. Here it is:

Open Original Shared Link

Before you cite this article to support D2, please read it! It clearly states that there were 3 groups:

1) placebo.

2) D3.

3) D2 AND D3

Both groups 2 and 3 improved and both groups received D3. NO group in this study received only D2.

Other research has shown that D2 doesn't stay in the body very long.