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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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    • marion wheaton
      Are Lindt chocolate balls gluten free?

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      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
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      Are Lindt chocolate balls gluten free?

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      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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