Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Not Absorbing After Year And A Half

platinumpony49

Recommended Posts

platinumpony49 Newbie
platinumpony49
Posted

Hello, I just had a dexa scan the second in 14 months. I went from having a trace of osteopenia in 8/02 to osteoporsis now. I have been gluten-free the whole time and taking calcium. I also have bood tests for calcium levels which came back very good. I just don't know what to think much less what to do about it. If Iam not absorbing the calcium yet it shows up in my blood then where is it going?? If anyone can help please do. Thanks

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest gillian502
Guest gillian502
Posted

I don't understand it myself, although it may be time now to try one of the fancier drugs such as Evista or Fosamax to reverse some of the osteoporosis. I hope your doctor has some theories on this...it is strange to be worse off than where you started!

tarnalberry Community Regular
tarnalberry
Posted

are you getting sufficient magnesium, zinc, and vit D with the calcium? there was a study (it's linked on this site somewhere) that magnesium is far more important for celiacs for bone health than calcium... (and too many calcium supplements don't have enough of it! bah on them!)

gf4life Enthusiast
gf4life
Posted

Tiffany is right. You need a balance of those supplements. Calcium alone is not enough to make strong bones, but for some reason that is the one that is pushed on the vitamin market. I would check into it.

God bless,

Mariann

platinumpony49 Newbie
platinumpony49
Posted
  • Author

Thanks so much to all for your input. I have been taking a liquid calcium and magnesium called Eniva. When I told this to the doctor he said that there was no proof that magnesium helped. I tell you what everyone that a person talks to tells youa different story. Health store people and chiropractor don't want you to take Fosamax. It really leaves one wondering what is the best thing to do. I have to find someone to put my trust in besides the good Lord. I just wish there was a doctor in our area for Celiac. I had it with out knowing what it was for over 30 years..............does that tell you anything. Thanks again.

tarnalberry Community Regular
tarnalberry
Posted

Are you also getting plenty of weight bearing exercise? That's crucial to stimulate bone growth.

platinumpony49 Newbie
platinumpony49
Posted
  • Author

Yes, thanks Tiffany Iam doing strength training usually 4 times a week. I have been on that program for around 4 years. I probably should add walking to that. I have a stand on my feet job but don't move that much. Let me know if anyone has the same problem or any suggestions.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


andyc Newbie
andyc
Posted

After being diagnosed with celiac disease I had a bone scan and I had osteoporosis - I went on Evista and then went to an endocrinologist. He did a 24 hour urine test and a lot of other test - I am now a mega doses of vitamin d(from the doctor)and evista I get get tested every 6 months and on my last dexa scan i no longer have osteoporosis but have osteopenia. Be careful with fosamax(?) if there is uncontrolled malabsorbtion this drug should not be taken(check with your doctor) -I found this out in a celiac meeting that hosted Dr Green from Columbia Pres hospital.

carolyno Newbie
carolyno
Posted

I'll add my two cents worth. Calcium citrate is more absorbable than Calcium carbonate (I don't know what you've got in your Calcium supplements.) It's a pain in the butt because a human body can only absorb 500 mg at a time so I have to take it many times during the day. BUT it works for me! My blood levels are good AND I have stabilized my osteopenia.

I also take about 800 IU of vitamin D with my calcium (Harvard has increased units recommended for women from 400 to 800 IU). And yes, I take magnesium as well.

If your doctor does not understand vitamins (many do not take any nutritional courses in med school), then a naturopath may be helpful.

Carolyn

LUAP Newbie
LUAP
Posted

14 MONTHS

THAT'S A LOT...

BUT YOU SHOULDN'T FOCUS ON CALCIUM. YOU SHOULD FOCUS ON LYSINE. LYSINE IS THE PROTEIN THAT MAKE YOUR BODY ABSORB CALCIUM. WHY DO YOU MISS LYSINE? PART OF IT BECAUSE OF YOUR TRANSGLUTAMINASE (LYSINE+GLUTAMINE) ANTIBODY.

SO I THINK YOU SHOULD RATHER FOCUS ON LYSINE...

platinumpony49 Newbie
platinumpony49
Posted
  • Author

To All, Thanks but now am really confused!! Never heard of lysine and the person that did the scan said that evista is never recomended anymore!?!?! She said that I should take Fosmax. Andy, why would that add to malabsorption problem?? How does one know if they have malabsorption?? Like I said in above link my boold test for calcium and vit D and vit B came back normal. But then this dexa scan was bad. I so wish I had a doctor that delt with the problems of celiac. The closest one is 3 hours from here.

plantime Contributor
plantime
Posted

It just might be worth a three hour drive for answers!

tarnalberry Community Regular
tarnalberry
Posted

Yep, the gyn for my vulvar vestibulitis is 90 miles away (3.5 hours during traffic! blah!), as is the sex therapist whom I see for the condition. A doctor who can help you is worth the time. (It's a pain coordinating with work, but eh... my health is more important.)

Guest gillian502
Guest gillian502
Posted

That's strange that Evista isn't recommended anymore. My Mother has taken it for years with great results.

platinumpony49 Newbie
platinumpony49
Posted
  • Author

Hi Gillian, I don't know that for sure because I was only told that by the woman that gave me my dexa scan. If it has helped your mom that is great! I still am reading about different possibilities.

andyc Newbie
andyc
Posted

Sorry it took so long to get back and answer your questions about evista, fosamax and malabsorption. The women who gave you your dexa scan was probably referring to people who do not have any malabsorption problems. Since celiac disease is a malabsorption disease as well as a auto immune disease there is the greatest of possibilities that you still have a malabsorption problem. fosamax works in such a way that it breaks the bone down faster so that the bone will rebuild at a faster rate- ithink -if you go on the web an search osteoporosis you will find out how bone is built up. If you are not absorbing the vits and minerals the body cannot build bone the same way as a person who is absorbing. Evista does not work the same way as fosamax and therefore does not have the same problems for us. If you have not been given a 24 hour urine test there is no way to know what is really going on. It measures the amount of calcium in the urine - If most of the calcium is not being used you might have a deficiency. Also - if there is a lot of calcium in the urine it could be caused by secondary hyperparathyrodism ( not absorbing vit d ). You should find yourself a good doctor one who is aware of celiac and the problems we have. Were do you live - it might be worth the trip to see Dr. Green at columbia pres hospital in new york - he is a leading authority on celiac disease and has a staff that will advise you on all of the ins and outs of staying healthy. Most importantly - we are too young to have osteoporosis and if given the wrong course of treatment the effects could be horrible. Please find a doctor that can help you.

Andrea

platinumpony49 Newbie
platinumpony49
Posted
  • Author

Andy, Just GREAT info!!! Iam so thankful for people like you that help those of us that need such information. I don't know a single person with celiac disease in my area so most of the time I only know what I read. Even the doctors dont seem to know much. I live in Indiana. I will continue to read these boards and whatever else I can find to get the answers. Thank you so very much as well as all the others that responded to this.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      321

      Terrible Neurological Symptoms

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are...
    2. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins. I am 10-days into taking this already. My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day. I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where...
    3. knitty kitty
      - knitty kitty replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

      Oh, dear, the niacin flush! I've heard repeatedly that the worse the flush, the more your body needs the niacin. If you stick with it, the flushing will not be as bad in a few days. Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days. I've done this myself, and...
    4. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      321

      Terrible Neurological Symptoms

      @HectorConvector, Step off the gas. I'm in the U. S. That was what I remember my doctor telling me thirty years ago. Things may have changed since then. If I've "misremembered," I apologize. I'm human. Things are different on the other side of the pond. Here we go by mg/dl. The smaller incremental changes are more noticeable using mg/dl....
    5. Known1
      - Known1 replied to Known1's topic in Introduce Yourself / Share Stuff
      18

      Diagnosed Marsh stage 3C in January 2026

      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up. My multi-vitamin already has 25mg of Niacin. The b-complex adds another 100mg on top of that. My face, neck, and ears look like the Cardinal I use for my profile pic. I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day. I think I...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,590
    • Most Online (within 30 mins)
      7,748
    Danny Mc
    Newest Member
    Danny Mc
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      The conversion factor for mg/dl and mmol/L is 18. So 5 = 90, 7 = 126, and so on. In the US, blood sugar regulations now are the same as what we use in the UK except for this difference in units. In terms of how they compare in the past, the numbers today that I quoted are stricter than they used to be. Blood sugar numbers for +1 and +2 hour postprandial are measured from the beginning of a meal in these official numbers. In regards to the thiamin supplement I have: it says it is thiamine mononitrate. I had not until now been aware there were different types (it seems I find that is the case with everything, including the magnesium I take!) and this one I have is the only one available in my local stores. I know it makes my pee smell strong when I take it which would seem to indicate my body is absorbing enough that the remainder gets ejected, but I could be wrong. Of course, I'm willing to try anything reasonable to correct this long standing condition, whatever it might be so I will try and get thiamin hydrochloride.      
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty For me, the flushing lasts about 10 hours and not just 60-90 minutes after consuming the vitamins.  I am 10-days into taking this already.  My urine is neon colored around the clock and I drink between 1/2 to 3/4 of a gallon of water per day.  I'll stick with 2 a day for now, but am honestly quite hesitant to do so. I am curious, where are you reading "the worse the flush, the more your body needs the niacin"?  I have been searching for that, but haven't found that anywhere.  
    • knitty kitty
      Diagnosed Marsh stage 3C in January 2026

      By knitty kitty · Posted

      Oh, dear, the niacin flush!  I've heard repeatedly that the worse the flush, the more your body needs the niacin.  If you stick with it, the flushing will not be as bad in a few days.   Another way to correct low Niacin level is to take 100 mg of Niacin (nicotinic acid, the flushing kind) every three hours for several days.  I've done this myself, and found the flushing is very short lived.   Stay hydrated.  The B's are water soluble, so if not needed, they'll be excreted. Hang tight, you'll be okay!
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Step off the gas. I'm in the U. S.  That was what I remember my doctor telling me thirty years ago.  Things may have changed since then.  If I've "misremembered," I apologize.  I'm human.  Things are different on the other side of the pond.  Here we go by mg/dl.  The smaller incremental changes are more noticeable using mg/dl.   Also, I adopted a Ketogenic diet.  Ketogenic diets don't spike blood glucose as much, and therefore return to fasting levels sooner.  My own experience is my postprandial blood glucose level returned to fasting levels an hour after the end of a meal on a Ketogenic diet.  I was asking if the thiamine you take is thiamine hydrochloride or Benfotiamine or Thiamine TTFD.  Thiamine Mononitrate is not well absorbed nor utilized by the body.  I learned that amounts larger than 100 mgs of thiamine hydrochloride needs to be taken in thiamine deficiency.   500mgs thiamine hydrochloride is recommended by the World Health Organization for several days and look for health improvement.  Thiamine is safe and nontoxic even in higher amounts. When thiamine is taken in high doses, there's a big change in energy availability, especially in the brain, where pain is registered.  A twenty percent increase in dietary thiamine results in an eighty percent increase in brain function.  Thiamine has analgesic properties.   I learned about high dose thiamine from Dr. Derek Lonsdale and Dr. Chandler Marrs through their website hormonesmatter.com.  I have taken high dose thiamine to correct my deficiency about fifteen years ago.  I could feel myself dying, I was so sick and in pain.  I was grasping at straws.  No harm, no foul, just to try it and see, right?  I tried it and that made all the difference.  High dose thiamine made astounding health improvements within a very short period of time for me.  I wonder if 500 mg of thiamine hydrochloride would have the same effect on you.
    • Known1
      Diagnosed Marsh stage 3C in January 2026

      By Known1 · Posted

      @knitty kitty Holy smokes, that Life Extension B-Complex is burning me up.  My multi-vitamin already has 25mg of Niacin.  The b-complex adds another 100mg on top of that.  My face, neck, and ears look like the Cardinal I use for my profile pic.  I have been on the b-complex for 10-days now and it seems to get a bit worse with each passing day.  I think I am going to drop down to taking 1/2 of the serving size.  In other words, 1 capsule instead of 2.  Hopefully dropping to one does the trick. Have you noticed any side effects from that B-complex?  It is WAY over the daily recommended values: Thanks for your time, Known1
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.