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Vitamin D Leve - 4.5 -!

carolinamom

By carolinamom
in Coping with Celiac Disease

Recommended Posts

carolinamom Newbie
carolinamom
Posted

Hi there,

I recently had labs done because I had been feeling awful, skin eruptions, tired, sore all over and gaining weight rapidly ( I gained 23 lbs in a month) despite lots of escercise and strict adherence to my gluten free diet ( I have celiac disease and also osteoporosis). They had avoided retesting the vitamin D which was a 9 when I was first disgnosed saying I must be cheating on my diet. Topday they call me and say OMG your level is 4.5 we've never seen on this low where someone was standing....you need to start the 50,000iu therapy today.

I'm frustrated that they ignored me and tried to say the weight gain must have been my fault.

Anyone ever been on this therapy.....any thinsg to look for....I took the pill about an hours ago and I have a it of a head ache and indigestion.

:((

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carolinamom Newbie
carolinamom
Posted
  • Author

Just to clarify....yes, the level is 4.5 ...

Its under 5.0

o.O

Mother of Jibril Enthusiast
Mother of Jibril
Posted

I'm sorry it took so long for your doctor to respond!! :angry:

This website has really great information about vitamin D, plus links to research on just about every aspect of vitamin D you can imagine:

Open Original Shared Link

carolinamom Newbie
carolinamom
Posted
  • Author

Thank for your reply. I still dont get why docs in this day and age are so apt to say you must not really be sick, ya know?

Any other advice to help me cope would be terrific...or sharing your experiences or links to info on vitamin D.

Oh...I do have osteoporosis and zinc, and A deficiency as well.

Blah. Some days, I swear.

Roda Rising Star
Roda
Posted

"you need to start the 50,000iu therapy today"

My vitamin D is not as low as yours but i think it was around 17 ish. My Dr. put me on 50,000 iu of vitamin D also. I take one pill once a week. I personally have not noticed any problem with taking it. I don't follow up with either my gi or endocrinologist until April so I am assuming I am to keep taking it this way till then. I have not had a bmd done so I can't say if I have any osteopenia, etc or not. I am also overweight by about 20lb and haven't had any luck taking it off. I am starting to feel better with less fatigue, so I'm hoping when the weather gets nice to do some biking.

pele Rookie
pele
Posted

I was diagnosed with "osteopenia" about 12 years ago and told to eat Tums. Thanks a lot, doc. In 2007 a NP tested me for Vit D. It was below normal but not as bad as yours. I started supplementing and have been retested several times. My Vit D level did not increase until I started lying in the sun in my Vitamin D suit. Fortunately I have a very private garden.

I also read here on this site that cod liver oil will get your levels up. I use about a tablespoon per day in addition to my regular 5000 units and call it sunshine in a bottle.

I hope you will get back to us in a few months and tell us about your success.

bakingbarb Enthusiast
bakingbarb
Posted
Hi there,

I recently had labs done because I had been feeling awful, skin eruptions, tired, sore all over and gaining weight rapidly ( I gained 23 lbs in a month) despite lots of escercise and strict adherence to my gluten free diet ( I have celiac disease and also osteoporosis). They had avoided retesting the vitamin D which was a 9 when I was first disgnosed saying I must be cheating on my diet. Topday they call me and say OMG your level is 4.5 we've never seen on this low where someone was standing....you need to start the 50,000iu therapy today.

I'm frustrated that they ignored me and tried to say the weight gain must have been my fault.

Anyone ever been on this therapy.....any thinsg to look for....I took the pill about an hours ago and I have a it of a head ache and indigestion.

:( (

I just got done with that dose of D. My levels were not as low as yours, just the same the treatment seems to be the same. I doubt there are any side effects either.

I had no issues with the D and checked the ingredients and they were fine. My biggest issue was when I ran out. Quite frankly the D made a huge difference in my life and how I felt, the difference was amazing. Until I ran out. After 2 weeks of not taking it I went and bought a 2000 iu, I take 2 a day and feel much better.

For sure check out that site that was listed, Open Original Shared Link

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carolinamom Newbie
carolinamom
Posted
  • Author

Now I'm starting to get angry...why do docs let things go for so long trying to prove something else.

All the research I am seeing says once you get to like 12 its dangerous. I'm 4.5 . 4.5!!

Sorry....I'm just not coping well. It caused rapid weight gain 24 lbs in a month and the doc tried blaming it oin my eating habits, which includes completely strict diet and a 1 to 2 mile run per day.

:((

lizard00 Enthusiast
lizard00
Posted

My vitamin D was low, too; like most others, though, not as low as yours. I started taking 2500iu a day, and I saw a remarkable difference in 1 week. No other side effects. So, take the mega dose and just concentrate on getting your level back up to a healthy range.

Sometimes I think doctors have a hard time believing that we might actually know what's going on with our bodies, especially if this is not satisfied by their answer and we keep pressing for more. I always try to remember that while someone had to graduate at the head of the class, someone else barely made it through. And some choose to keep up with new information moreso than others. It doesn't make it right, it's just the way it is.

It's a pain, but if you're not happy with this one, find another one. That's what I've done-twice. It's my health, not theirs.

I have wondered, though, if doctors are increasingly being asked for rx's because of the pharm companies advertising their drugs, and telling you to ask your doctor if it's right for you without even saying what it's treating. We are a society of seeking a fix in a pill. So, for those of us who legitimately have problems and we're asking for specific tests and the such, they may see us as just another person seeking a quick fix. (That's just me playing devil's advocate. Take it for what it's worth.)

flowerchild Newbie
flowerchild
Posted

Hi Carolinamom

I feel your frustration.

My vitamin D level measured 5 about 8 months ago and I was put on the 50,000IU prescription twice a week plus 1000IU a day d3. 5 months later my levels rose a bit (to 15) but not into the safety range and the doctor wanted to increase it to 3 prescription pills a week plus 1000/ day.

I didn't want to do that because the prescription is so expensive (and I was already under pressure from my husband to get off it) so she told me to go to a specific pharmacy and ask for a 5000IU non-prescription D3 which they (and many) pharmacies keep behind the counter. She also said it was more absorbable than the prescription and a lot of her patients did better on it than the prescription. (so why even prescribe??)

You might ask your doctor about it. It's D3-5 cholicalciferol by BioTech. If you have a small mom and pop type pharmacy, or one attached to a hospital - they'd be more likely to carry it than a chain pharmacy.

I took the 5000IU every day for a month and now take it every other day and as of a week ago my D level had risen to 30 and I'm starting to feel wonderful - much less tired and actually energized when I exercise - something I hadn't felt for a very long time. My blood pressure and weight are both dropping and the muscle cramping and heart palpitations are almost non-existent. My hair has stopped falling out and my nails are growing in strong again. I don't know which of my symptoms were attributable to the D deficiency and which to other deficiencies caused by malabsorption, but something is definitely working. I also had low levels of calcium and B vitamins, all of which have come back up with supplementation and a gluten-free diet.

Hang in there, you'll get there. It won't happen overnight but positive things will begin to happen.

JerryK Community Regular
JerryK
Posted

I just noticed this thread. My identical twin brother (who refuses to go Gluten Free) has been diagnosed with Fibromyalgia. He claims he hurts so bad he can't work some days (office job!). The Dr. has put him on Lyrica....Amtriptaline (sp)...and various other stuff trying to

help him. I keep telling him it's the Gluten in his diet....

Dr. finally decides to test his Vitamin D levels and it is less than 4. We've both had to have all our teeth crowned.......

I think now he is starting to believe me. He's taken 50,000 IUs of D per week, for a couple weeks now and says his

pain is 95% resolved.

I'd made a connection between what happened to my teeth and Gluten, but it never ocurred to me that it was vitamin D that could be

the culprit. We live in the Pac NW....where we maybe get enough sunshine 5 months out of a year, to make D, if it's sunny.

I keep on learning....

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