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      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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Osteoporosis
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6 posts in this topic

I am a 46 year old woman who has scoliosis (not too bad - 40 degreee top/36 degree bottom). About a year ago my spine doctor told me to go get a bone density test done because they've found that people w/ scoliosis have a higher prevalence of osteoporosis. So I did. My gynocologist told me I had the worst levels he's seen in someone my age. I have severe osteoporosis in my hips (-3.1) and osteopenia in my spine. I have NOT GONE through MENOPAUSE yet... Anyway, I was told to go to an endocrinologist because the osteo was so extreme. She ran a battery of tests and was baffled because she suspected Celiac or a problem w/ my parathyroid but her tests, other than a weak positive for the IGG came back negative. She told me to go to see another endocrinologist in NYC at Columbia Presbyterian Hospital. I had more tests done for this new endo. & just went this past Tuesday. Although I didn't test positive for the basic IGG & IGA tests, my vitamin D (hydroxy test) was very high and my parathyroid level high too... making her suspect Celiac. She then had more blood taken for the Prometheus Celiac Serology.

Other than osteoporosis, I don't have concrete stomach issues... I'd often been constipated... but I thought that was due to my diet (too much cheese here and there, not enough roughage, etc.). I have often gotten bloated... but thought that was not too unusual.

Anyway, anyone else out there have osteoporosis for not the "typical reason" such as menopause, being anorexic, taking certain drugs, not having normal periods, etc? ANYONE HAVE OSTEOPOROSIS DUE TO celiac disease?

I actually hope I have Celiac... then I will know WHY I have osteoporosis so bad at only 46!

Thanks!

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If you have osteoporosis, there is a very good chance you also have celiac. Osteoporosis is one common long-term effect of gluten on a celiac's body.

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Hello,

Low bone density prior to menopause can certainly happen and could certainly be related to celiac disease.

I discovered I have celiac disease about 9 months ago. I am now 28. At the age of 22, a dexa scan demonstrated osteopenia in my lower spine. I was told that I was 1/2 a standard deviation away from osteoporosis at 22. I suspect that my low bone density is related to undiagnosed celiac disease. This is quite a scary problem, as celiac disease was not determined for an additional 6 years. Who knows how much further my bones have deteriorated b/c I was not able to absorb nutrients properly. I am currently checking out the status of my bone density.

I've been taking a fabulous Calcium supplement - Calcium Apatite. It is expensive, but it is one the best out there. Certainly, there are prescription medications that you can take, such as fosomax. Good luck and take care.

Sara Gardiner

Philadelphia

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Hi Sara... yes I too am taking a great calcium supplement - but as for Fosomax, it is definitely NOT RECOMMENDED for premenopausal women! My new endocrinologist (a metobolic bone disease specialist at Columbian University Med Ctr in NYC) expressed her anger and frustration of doctors prescribing Fosomax to women not yet in menopause.

Thanks,

Lisa

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Hi there. My mother is also Celiac and she has the worst case of Osteoporosis her Doctor said he has ever seen. She has fractured her back on two occasions just from odd movements and in one case sneezing too hard. She is still able to walk, but she is currently on Morphine for pain. Take your Calcium folks!!!

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It is my understanding that osteoporosis is common in celiacs, due to the malnutrition that is characteristiic of the disease. I have been diagnosed as having osteoporosis, although my bone mineral density is improving with calcium supplements, vitamin supplements and Fosamax. I am a male, age 50, who was diagnosed as celiac four and one-half years ago, after many years of incorrect diagnoses. The clue to osteoporosis was a triple compression fracture of the lower back. My doctor said that should happen to a man my age :o

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    • Weird Reaction
      Hi Richie I've put the above in quotes as you have described in the first and second sentence how I felt six months prior to my DX.   In my own case, in the end I concluded it was anxiety after consulting Dr Google!  It was such an alien feeling to me, I couldn't even think what it was, particularly as life was pretty good at the time.  Anxiety is a problem for a lot of celiacs prior to diagnosis, and often after glutening after going gluten-free. You mention breathlessness, this of course can be for reasons such as anaemia (again a common celiac problem, I had this prior to DX) but of course also can arise if you are anxious.   Re 'gluten free' - Flowerqueen is right, from what I have read on this forum some people really do seem to react with less than 20ppm.    But perhaps some other things to consider...  could there be something wrong with the batch you have consumed?  Might it be worth contacting the manufacturers?   That said, you could , as Flowerqueen suggests, have a problem with another ingredient, in the product or something else you consumed. In the past I have had a terrible reaction - fever, trembling, diarrhea, stomach cramps that lasted up to three hours the last three times I ate..... broccoli, of all things.    Who would have thought that possible?  I have often thought I should try it again, just to be sure it was the broccoli, as it is a 'super food' that I ought to have in my diet, that I like very much, but the thought of having such a reaction again has put me off. I do hope you will find some answers soon.  
    • Weird Reaction
      Hi Richie,  I've not heard of this drink before, as I live in the UK, but any drink made from barley is something you should avoid.  There's a brand in the UK that makes lemon and barley water and orange and barley water and Coeliac UK say it is not safe for people with Coeliac disease.  (Our labelling laws in the UK changed a couple of years ago).  You say the drink you had was under 20 ppm, which is acceptable (usually) for coeliacs, but a lot of people are super-sensitive to gluten even in very small amounts.  I recently had a similar problem with something which was supposed to be okay for coeliacs, but when I checked the website of the product, for all it said there were no gluten containing ingredients, it was produced in an area where gluten was present, which was enough to put me off and must admit, the symptoms you describe sound very much like I experienced at the time.  (Personally I'd be avoiding that particular drink like the plague from now on). One other thing though,  have you checked the ingredients to see if there could be anything else in it which you may be intolerant to? 
    • Confused
      I have not. I'll talk to my doctor about it
    • High Positive Test Results - Your thoughts please...
      With blood results like these, your husband most definitely has Celiac Disease.  The biopsy is just to check to see how much damage.  Keep in mind that even with high, high test scores like these, damage can still be patchy. Although I would be very surprised if they didn't find enough with numbers like these!  Thank goodness he was able to have a definitive diagnosis and reason for his symptoms!  Good luck!
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