Gluten Free Guerrillas
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Osteoporosis and Coeliac Disease

Has anyone been diagnosed with osteoporosis after their coeliac diagnosis? I have just had a bone scan and the result has shocked me. I have been told that I have significant bone thinning. I was expecting to have some as I was 59 when I discovered I had coeliac. I have always been very active - walking and cycling everywhere and I have a physical job where I am on my feet and walking all day so I find this really depressing. It also makes me very nervous of having a fall. I will be starting treatment for this but would be grateful for any advice. As I wrote in my last post, my IgA ttg result was 13 after a year and a half of being on a gluten free diet. Has anyone else had treatment for osteoporosis and have you had any improvement with treatment? Thanks.

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Hi Shirleywhirl,

I had the same diagnosis following confirmation I had CD. I was prescribed Fosamax, which I took for approximately 5 years. I then found out that there was a risk of jaw disease (as a result of taking Fosamax) if my dentist performed certain procedures on my teeth.

So read the possible implications of any medication and make your mind up what is best for you. I no longer take Fosamax and use lifestyle/diet as my ‘medication’ and surprisingly my codex scans show marginal improvement over time.

Best of luck

Peter

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Yes i was diagnosed with Osteoporosis. I had Coeliac for at leased 18 yrs before i was diagnosed so not surprised really. I went to the doctors for years with symptoms but they didn't do anything about it.

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Hi benmaise. I was the same. I must have had Coeliac for years before being diagnosed. Are you having any treatment for osteoporosis?

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Hi Shirleywhirl I take Calcium D twice a day on prescription. I did take another one just once a week , but can't remember what it was called. I didn't like taking it because i couldn't eat or drink for an hour on a morning .Also had t keep upright for 30 mins at least before taking the pill.I took it for 5 years then i read you didn't need it after that length of time. Doc said i could stop it.

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Hi I am on the same medication is it anderolc accid if that is how you spell I've been taking it 4 years now an gp sending me for another bone scan to see if I can come off it which I hope so as I know s lot of people have said it gains your weight which I have did you find same with weight gain

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Hi Dippsy. Yes it was alendronic acid . Cant remember it causing weight gain.

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.... you may wish to read my post below :-)

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Hi Peter. Thanks for your reply. I will certainly look into the treatments for osteoporosis. Medication is not always the answer I know. I am very active in my daily life. So hoping my muscles will hold me together to some extent!! What lifestyle /diet tips do you have?

Thanks Shirley

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Hi Shirleywhirl,

My diagnosis has been so beneficial, in that it was the catalyst for me becoming a lot more knowledgable about what I put into my body. Hardly ever eat processed food. Try to think like a cave person in terms of eating; nuts/fruit/meat/etc.. Also I don’t know subscribe to the “three meals a day” mantra. Our bodies are still designed for living as hunter gatherers and I’d pretty sure I would have gaps in my intake of food. So I try to miss say breakfast or lunch every so often.

I also exercise, swim, go to exercise classes and have been going to yoga classes for years. I also walk a lot and used to cycle more, but regrettable my cycling partner became unwell and bang goes my motivation!

Hope this helps?

Peter

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Oh forgot to mention I am, more recently, a lot more keen on sunshine. Again it mimics cave life. A blog I read (Dr Malcolm Kendrick) recently suggested the three most important things for healthy bodies, particularly hearts, were; don’t smoke, take exercise and gets lots of sun on your body!

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Thanks very much for your comments Peter. It makes sense to make changes to your way of life. I already do a lot of walking and cycling as it is the only mode of transport I have. I must admit that my diet although gluten free sometimes leaves a lot to be desired. I am going to look into my diet and improve it I hope. But I have a very sweet tooth unfortunately! Thanks for all your help.

Shirley

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Just to add to this, caffeine strips our bodies of calcium which is worth bearing in mind. Also if you take calcium its good to take vitamin D and magnesium as well, lots of people are deficient in magnesium so when they take it d they get a head ache because of magnesium deficiency, chelated magnesium is the best for digestion and the cream/oil is good as it's absorbed by our skin.

Also worth thinking about is good natural sources of calcium and sesame seeds pack a punch so are worth adding to cooking and baking.

And remember it may be a shock but you felt fine until you were told, so now that know you can do something positive about it.

And good luck,

Jerry,

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... you may wish to read my post below :-)

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My Coeliac Disease does not follow the expected having been in remission for 45 years. But to answer your question I was first diagnosed as having osteoporosis then on the second dexa scan told it was osteopenia borderline osteoporosis. There was no comment having had a bone scan and two full skeleton MRI scans about either so I just carry on as normal, very little dairy or calcium treatment since 2007.

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You may wish to read my post below ..... :-)

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Thanks everyone for your replies. There is a lot of info which has been very helpful. I think it was the initial shock of discovering that I have osteoporosis that threw me. Thanks again.

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Vitamin k is really important for bones as well as vitamin d. Please look into that angle. On a very quick look I found this:

ncbi.nlm.nih.gov/pubmed/153...

Incidentally, as regards alendronic acid which others refer to, my daughter knows a woman who suffered severe burns to her throat when a tablet didn't go down properly. She was unable to speak for some time and then discovered that a combination of D, K and calcium was more effective. There are supplements such as Bonestrength and TrueOsteo that combine these things.

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Following on from the PubMed reference in Hil101’s post, there are some recent studies that have shown an improvement in bone health from eating dried plums/ prunes.

ncbi.nlm.nih.gov/pubmed/285...

This article contains a useful table of recommended foods (table 2).

ncbi.nlm.nih.gov/pmc/articl...

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Please do your research carefully. The drugs prescribed containing calcium could misfire - as calcium is required in the breaking down of old bone and not used in creating new bone - osteoblasts and osteoclasts. Check out Dr Sarah Myhill below ....

drmyhill.co.uk/wiki/Osteopo...

Bone is much more than calcium - in fact B12 is also involved so ensure your level is above 500. When testing B12 ensure you also test Folate as they work together in the body. VitK2 - a vitamin that is missing in our diets - is key to the distribution of calcium in the body - it directs it away from the arteries and soft tissues and into the bones and teeth. Atherosclerosis is linked to too much calcium and in fact in the book I am currently reading mentions - it should be described as K2 Deficiency :-)

Also if you are prescribed VitD GP's often prescribe too little and your levels will never rise. You should dose according to your results. VitD supplements require the co-factors - magnesium and VitK2-MK7 as D3 improves the uptake of dairy from foods. I take 5000-10,000 daily of D3 and also live in Crete ! - another paradox !

grassrootshealth.net

vitamindcouncil.org

Vitamin K2 and the Calcium Paradox - how a little known vitamin could save your life - is the title of the book written by Kate Rheaume-Bleue. Such an informative read.

Lastly also missed by GP's - do you know your thyroid levels ? You can have a perfectly good functioning thyroid that produces T4 - a storage hormone - but does it convert into the Active Thyroid Hormone T3 - a hormone needed in every cell of your body. Sadly this is rarely tested in the NHS and can cause so many Hypo symptoms - even for people who are diagnosed and on treatment. I have been on the Thyroid UK Forum for over six years - so have read and learnt so much from others.

thyroiduk.org

Happy to help :-)

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Hi Marz. Thanks for all the information. It is such a complicated subject. I will be looking into all aspects. I will be having a look on the Thyroid UK Forum too. From being an undiagnosed coeliac for so many years, I am only just beginning to realise all the complications that can arise from this. Thanks once again.xxx

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Sorry did not mean to overwhelm you with information. From my own experiences ( you can click onto my name above in blue and read my Bio ) - I know how I have had to work away on my own - joining up all the dots - and realising how everything is connected. I was 59 before the Thyroid issue was diagnosed here in Crete back in 2005 - and have galloped away into good health since then. I was diagnosed with Crohns over 43 years ago after Gut TB :-) It has been a bumpy journey ....

Now a healthier 71 year old - teaching yoga - swimming loads - and trying hard to lose weight before summer reveals all !

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My dexa scan results are due next week. Hope mine are better.

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I have osteopenia thinning of the bones as I hadn't been absorbing calcium and my levels were very low despite all the food I was eating like cheese yogurts milk drinks. Was put on calcium tablets but then my levels went to high. I know 6 yrs ago I had scans and they were looking for cancer but didn't find any. Took me off the tablets. My levels are good and my bones have not determined over the last year. I was diagnosed with breast cancer and finished chemo and surgery last December. I just try to follow a balanced diet but am waiting to go into hospital for a tooth extraction as the tooth has 3 roots instead of 2 which could make it difficult to get out. I'm high risk for jaw fracture because of thinning bones. Like you when it's icy I'm afraid if falling over and breaking something though.

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Hi Shirley whirl

I was diagnosed coeliac last year age 69. I am sure I had it for years but no doctor was interested in my problems until I found myself that gluten was the culprit then they tested and found coeliac. About 10 years ago my ankle broke so easily I insisted on a bone density test which showed osteoporosis. I was given Ibandronate (alendrnic acid) and calcium/vitamin D daily. The acid worked and latest scans show osteopenia which is milder than osteoporosis. However you are not supposed to take Ibandronate for longer than 5 years as it can affect the jaw (I took it for 8 years before I was told this!!!

I understand that because coeliac disease stops absorption of vitamin D this could have caused osteoporosis. In all I have broken 5 bones so this is very significant.

I would advise you to take calcium and vitamin D daily and to take alendrnic acid for as long as you can. Wear sensible footwear and don't take unnecessary risks for the sake of your bones. Having done all you can, eat well and enjoy your life. Good luck and let us know how you get on. Diane

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