Vitamin Deficiencies And Celiac

[samuella]

I found out a few months ago I have celiac; been gluten-free ever since. Had various vitamin levels tested then and was low in Vitamin D and iron. Have been taking supplements for both for last couple of months. Had my iron re-tested last week and it's still low. (We re-tested so early because I'm breastfeeding and my baby is having trouble gaining weight and we are wondering if there's a connection, so we are keeping a close eye on it.)

Am wondering how long after going gluten-free does it take for vitamin levels to return to normal? I understand that it can take months or even years for the villi to become normal, but is that the same for vitamin levels? Or do I just need a better supplement? Would iron injections help, or if my body isn't absorbing iron well then it doesn't matter what form I take it in, and I just need to wait longer for my body to heal?

I am seeing my doctor next week to discuss all this, but any experience/opinions from you guys would be much appreciated!

Thanks!

[mushroom]

The iron injections bypass the gut where the lack of absorption occurs, so yes, they are better at getting your levels back up.

[Newbee]

My vitamin D level is low as well. I'm waiting to see the doctor for the next appointment but not sure he's even going to want to talk about vitamins. Can you tell me how much D you are taking? I'm just trying to take a lot but not sure how much I should really be consuming.

[mushroom]

I have told this tale before, but the way my rheumatologist explained it, if you are low in D you have to take a lot to start with and then taper of with a maintenance dose. She likened it to an empty gas tank. When you get to the gas station you don't buy just a dollar's worth, which will barely get you to the next gas station; you need to try to fill up, and keep it filled, and since you are relying on your non-absorbing gut you have to realize that not all of it is going to go in the tank. I was taking 50,000 iu once a week for about six months; now I take it every month with supplemental D every day at a maintenance dose. You need Vitamin D3, cholecaliferol.

[cassP]

oh boy, these can be hard to answer- especially since you're breastfeeding- which i know nothing about. in my own personal experience- it seems to take quite some time to heal and to absorb correctly. ive been gluten free for just over a year now- and i am seriously supplementing.

6 months after going gluten free- my D tested at 26, ive been taking 49,000 to 56,000 iu a week (6-8000iu a day of D3) for about 5 months now. i just got my iron tested- i think it was 45, but my Ferritin was 11 which is critically low. for about 2 months now ive been taking 72 elemental mg of Chelated Iron every day (some online say i should be taking more, or getting transfusions-> but this is the most i can take without getting constipated or throwing up).

for the most part my digestive tract feels pretty good.. ive only been glutened once in the last year- but it was pretty bad. Still-> with some digestive issues, with my continued use of dairy, and many years of undiagnosed Hypothyroid - i am still not getting adequate vitamins... things arent working right... we're still getting the dosage figured out- and whenever i slip back into Hypo- i eat less.. so will just have to supplement and retest for a while i guess.

just be careful with the nursing- and get continuously tested... i think it's probably more important to retest the Iron/ferritin more than the D.... it can be really bad to have your ferritin to high.. it's best to get your Ferritin to about 70-80. im not sure what the optimum level for D is.... my freakin doctors dont help me much on getting my levels up to where im healthy and feel good- i have to research it all myself.

how's your B 12???

OH- also its smart to take some B12 & 500mg vit. C with your Iron- helps to absorb-> AVOID Calcium with your iron

[samuella]

THanks everyone! That makes sense about the injections bypassing the gut - hadn't thought of that! My B12 is fine, and I'm taking 3000 Vit D a day (which some people say is high and other people say is low!). My iron isn't really low, so normally not something you'd consider injections for, but since we don't know if it's affecting breastfeeding it may be something to consider. I'll talk to the doc about it.

So for taking supplements orally you do need to wait until your villi are back to normal before you really start absorbing the supplements? I guess that makes sense - otherwise why would we be low in vitamins anyhow - but it's frustrating not knowing how long it'll take the villi to repair! Actually this is all really frustrating. Grrrrrrr!!!

So just so I'm clear - really the best way to get my iron up right now while I'm waiting for the villi to heal is iron injections, since it doesn't depend on absorption via the gut?

Thanks!

[cassP]

theoretically, it would be better to get iron infusions... but i dont know just how low u are... and i dont know how it affects nursing... so its best to ask your doctor

[samuella]

theoretically, it would be better to get iron infusions... but i dont know just how low u are... and i dont know how it affects nursing... so its best to ask your doctor

Yup! Seeing my doctor tomorrow to discuss - just wanted to get some 'theoretically' info from the other type of experts on here!

[Nurse Belly Blues]

When you're nursing you should still be taking your pre-natal vitamins. The usual dosage for low D depends on how low you are. If you are in the 'under 30' range they will usually prescribe 50,000U a week for 4 weeks then once a month. 3000 a day is not that high, you can safely take up to 4000 a day.

[vawksel]

I have told this tale before, but the way my rheumatologist explained it, if you are low in D you have to take a lot to start with and then taper of with a maintenance dose. She likened it to an empty gas tank. When you get to the gas station you don't buy just a dollar's worth, which will barely get you to the next gas station; you need to try to fill up, and keep it filled, and since you are relying on your non-absorbing gut you have to realize that not all of it is going to go in the tank. I was taking 50,000 iu once a week for about six months; now I take it every month with supplemental D every day at a maintenance dose. You need Vitamin D3, cholecaliferol.

I was at 4 ng/L, basically NO vitamin D in my body.

I took 25 drops of 2,000 IU Cholecaliferol a day (50,000 IU a Day) for 30 days. Then I took 5,000 IU's a day for 30 days more. I had my Hydroxy-25 Vit D levels tested, and I was at a mere 54 ng/L. Normal is between 30-80.

So, over the course of 60 days I took 1,650,000 IU's and my levels hit 54.

It also changed my life. I was out of energy, napping every day, unable to focus and felt like crap. It only took a week or two to start feeling much better.

Your Vitamin D3 levels won't change because you fixed your gluten intolerance (original poster). You either need 20 mins outside in the sun EVERY DAY, or you need supplementation like I did.

I don't recommend taking 50k IU's a day like I did. Doctors max prescribe 50k a WEEK. I did it on my own accord without doctors supervision. I don't recommend that. I am just stating what I did as historical fact :-)

Go get some Liquid Cholecaliferol Drops. Talk to your doc.

[samuella]

Your Vitamin D3 levels won't change because you fixed your gluten intolerance (original poster). You either need 20 mins outside in the sun EVERY DAY, or you need supplementation like I did.

I realize that. I never suggested that my vitamin levels would change just because I'm off gluten, but rather now that I'm off gluten AND supplementing how long is it reasonable to expect for my vitamin levels to return to normal.

Anyhow, I had my appointment with my GI. He thinks because my iron is going down rather than up (and I'm supplementing) and I haven't had any change of GI symptoms that I am still getting some gluten somehow through cross contamination. We are retesting my ttG level to see where it's at. And I'm continuing with the zillion supplements that I'm taking. Joy!

[vawksel]

I realize that. I never suggested that my vitamin levels would change just because I'm off gluten, but rather now that I'm off gluten AND supplementing how long is it reasonable to expect for my vitamin levels to return to normal.

Anyhow, I had my appointment with my GI. He thinks because my iron is going down rather than up (and I'm supplementing) and I haven't had any change of GI symptoms that I am still getting some gluten somehow through cross contamination. We are retesting my ttG level to see where it's at. And I'm continuing with the zillion supplements that I'm taking. Joy!

My wife didn't respond to iron pills. She _only_ responded to Liquid Iron.

Note there are two kinds that I know of:

1) Floravital IS Gluten Free -> Open Original Shared Link

2) Floradix is NOT Gluten Free -> Open Original Shared Link

You could try the first one and see if that works. My wife is also gluten intolerant. Once she started this liquid form, her Iron returned to normal levels pretty quickly. I don't have the exact time frame, but I believe it was well under a month.