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Not Absorbing After Year And A Half

platinumpony49

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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

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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.

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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.

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
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      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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