• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
platinumpony49

Not Absorbing After Year And A Half

Rate this topic

Recommended Posts

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

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Guest gillian502

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!

Share this post


Link to post
Share on other sites

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!)

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites
Ads by Google:


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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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...

Share this post


Link to post
Share on other sites


Ads by Google:


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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.)

Share this post


Link to post
Share on other sites
Guest gillian502

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

0

  • Forum Statistics

    • Total Topics
      108,922
    • Total Posts
      943,518
  • Member Statistics

    • Total Members
      67,122
    • Most Online
      3,093

    Newest Member
    Momma Bear13
    Joined
  • Popular Now

  • Topics

  • Posts

    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
    • My MRI has been clear. They did a spinal tap back in May which was also good.  MS ruled out many times. All my symptoms match Gluten Ataxia, but I don't know for sure since I don't have a dx. However, I DO have Hashimotos so at least going Gluten Free is necessary for that. I go to my Rheumatologist on Jan. 30th, 2018. Can a Rheumatologist determine Gluten Ataxia? If so how long should I be back on Gluten for testing?  Thanks for the heads up on Free and Clear products. I will look into that.
    • tTG-IgA Tissue Transglutaminase Immunoglobulin A Self The enzyme TTG deamidates gliadin (a broken-down component of gluten). In reaction to the presence of TTG, the antibody immunoglobulin A (IgA) is produced. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.   Not 100% specific: there are other causes of a positive test, including diabetes, heart failure, Crohn’s and others. Also, people who have celiac disease can get a negative result with this test. Machine-read. tTG-IgG Tissue Transglutaminase Immunoglobulin G Self In reaction to TTG, IgG is produced. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from 3-6 months, sometimes up to a year, preceding test.   Valuable in diagnosing Celiac in patients with selective IgA deficiency. DGP-IgG   Deamidated Gliadin Peptide Immunoglobulin G   Newer, excellent test that detects an immune response to a very specific fragment of the gluten molecule (gliadin peptide).   If both DGP are high, celiac disease almost certain. Accurate for detecting gut damage of celiac disease, so good it is likely to make endoscopy redundant. Does not replace the IgG-gliadin test. DGP-IgA Deamidated Gliadin Peptide Immunoglobulin A   (ELISA) measures antibodies directed against deamidated Gliadin peptides (DGP) in human serum or plasma. AGA-IgG Anti-Gliadin Antibody Immunoglobulin G Anti-self (Older gliadin test.) The antibody immunoglobulin G (IgG) is produced in response to gliadin. Raised IgG antibodies demonstrate long-term immune response, indicating ingestion of gluten from three to six months, sometimes up to a year, preceding the test.   Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction AGA-IgA Antigliadin Antibody Immunoglobulin A Anti-self The antibody immunoglobulin A (IgA) is produced in response to gliadin. Raised IgA antibodies indicate short-term immune response, indicating ingestion of gluten 2-4 weeks preceding the test.   Not specific & sensitive for Celiac, but accurate as an inexpensive test for evidence of a gluten reaction Total IgA Immunoglobulin A Self The celiac blood test panel includes the total serum IgA test because some people (3%) are IgA-deficient. If you have a very low total serum IgA, that can invalidate the three blood tests that rely on your IgA levels. People with celiac disease suffer from low total IgA levels about 10 to 15 times more frequently than people in the general population. EMA IgA Anti-endomysial antibody IgA Self EMA stands for antiendomysial antibodies, which are antibodies produced by the body that attack the body's own tissue. When the EMA-IgA is positive, the patient almost certainly has celiac disease. However, the test also can produce false negative results in patients with celiac disease but only partial villous atrophy.   Highly specific (>95%), and >90% sensitive. The EMA antibodies correlate to degree of villous atrophy. Observer-dependent.
  • Upcoming Events