Does anyone have experience of/know anything about celiac(sp) or osteoporosis?

[agalch]

I am really worried about my mum.Has been ill for about 5/6 years.Have had all sorts of doctors and diagnoses,from osteoarthritis to fibromyalgia.

Now her gp is testing for celiacs(sp) and wants a bone scan done to test for early onset osteoporosis.My mum is only 54 and is becoming really depressed about being ill for so long and pisses off with being referred to one doctor after another and not opne of them has helped.They have her on loads of pills inc ad's which she had decided to stop taking.

Any advice gratefully recieved.

I don't personally have experience of it, but i know a couple of people who are coeliac. It's pretty rotten, but once all gluten is cut out, the symptoms can be controlled. If it is what's wrong with her, a different diet should make her feel better.

I don't blame her for being down, but at least the doctors are testing her for lots of possibilities.

Hope someone else comes along with more experience than me for you.

Sorry to hear your mum is going through such a tough time. My mum was diagnosed with coeliac disease in her fifties too, and it actually came as a huge relieve to at last find out what was wrong with her - she also had loads of tests/misdiagnoses before they eventually worked out what it was. She had to do the thing where you swallow a camera to see inside you - which she found really distressing because she was so scared, but at least is got to find out what the problem was.

If it is coeliac disease, it is quite common and relatively easy to treat by just cutting out all gluten from her diet. My mum gets bread and pasta on prescription but also buys cakes, pizza bases, etc from supermarkets, most things are now marked gluten free. She was told there can be a link between coeliacs and osteoporosis so maybe thats why they're testing your mum for it as well.

My mum is absolutely fine on the gluten free diet now - she's travelled a lot and found that everywhere is really accommodating in providing gluten free food. If you do a search for coeliacs society they have a website with more info - and a food list (although you may have to subscribe to see that).

Hope your mum feels better soon.

The other possibility is that she might have a rheumatoid condition such as Shogrens syndrome or Hughes syndrome - these are autoimmune conditions and are very often missed by GPs and mimic other conditions. She is about the right age for it. Try googling these - i can't do links, but the thing about Shogrens is that it affects every system of the body and goes round all of them in turn, so can easily be misdiagnosed. Sufferers can have digestive symptoms, arthritis, muscle pain, exhaustion, dry mouth, dry eyes, chest/ear/nose problems, skin problems - the list is endless. the diagnosis is made by a blood test for Rheumatoid factors and there is treatment. I may be completely on the wrong track - but if a simple blood test is all that is required, it might be worth checking out.

Thanks girls

3littlefrogs thanks for that.Will google when i have time,got 4 dc's 2 of whom are still up and wanting on the pc.

Don't understand why it's taken 6 bloody years tho.

Thanks detentiongrrrl and i would go out tonight.I will do a search for your coeliacs society.Do you worry that you will have it too iwouldgoouttonight? Apparently it can be heriditary.

Hi Agalch,

I have a ds with coeliac. He also has diabetes and as the two conditions are closely linked it was picked up by routine screening before he showed any real symptoms. When my Dad went on the internet to find out about ds's condition he found that all the symptoms he had been suffering with for ten years (diagnosed as IBS) matched coeliac, and so asked for a biopsy and was found to have it. As soon as he went gluten free he felt a lot better. I can sympathise with your Mum, as my Dad felt he had lost ten years of his life through misdiagnosis. He lost inches off his waist as the bloating he had been suffering from went away. I have been tested but am negative so far.

Apparently there was a pull-out section one day in this weeks Times about coeliac (I was told about it but haven't seen it). Maybe worth trying to get hold of?

The gluten free diet can be a bit of a pain (ds ends up living on baked potatoes if we are eating out) but more and more stuff is becoming available and labelling is far better than it was even a couple of years ago. And if it is coeliac, your Mum;s quaity of life will improve very quickly.

One final thing - the only way of finding out for sure is by biopsy (the blood tests are only suggestive rather than conclusive). If she does need a biopsy your Mum should stay on gluten she has it, otherwise her gut will start to heal and it will appear healthy.

If its osteoporosis then she should get referred for physio apt to talk about exercise. After the age of 30 you can't lay down more bone mass you can only try and conserve what is left.

If it take a while she can get a rpivate bone scan done for that - I did before i got pregnant as I have osteoporosis (anorexia meant i had swiss cheese bones aged 21). It cost £125 but it was very quick and it gave me the info I needed - that my bones were okay for childbirth.

Yes I know it can be hereditary - hopefully if I started showing the symptoms I would know what it was as my mum has it. I'm veggie too so would end up with hardly anything I could eat! I'm not going to let DS have anything with gluten in until he's at least a year old to try and decrease the chances of him getting it.

The Times supplement on Wednesday was about Coeliac disease.

It mimics so many other conditions, esp. irritable bowel, that it takes on average in the UK 11 years to diagnose. Quite incredible. The good thing is that once diagnosed and gluten eliminated from the diet it should be a matter of weeks before things start improving (up to 6 months in some).

God my poor mum I am really hoping it is coeliac and we can see her get better,if it's not could take another few years while the gp fannys around.

My ds1 has severe constipation,bloating,pain etc.IBS maybe? Hope it's nothing like my mum has.

The osteoporosis sounds awful too,thanks for the info everyone.

Algach, my dh is coeliac and we think ds is too - we're going through the diagnosis process.

I started this thread here to help gather together info about coeliac disease.

People with coeliac disease really do feel much better once they go on a gluten free diet - unfortunately, depression can be one of the symptoms. You may have to press for a biopsy if the blood tests are inconclusive.

If you have any other questions, post them and I'll get dh to answer.

Algach - dont worry too much, my mum was diagnosed at 60 with coeliac disease - except its improtant to remember it isn't a disease but an intolerance and so symptoms disappear quickly with a careful diet. The reason your GP is testing for early onset osteoporosis is that undiagnosed coeliac disease can cause osteoporosis as the damaged gut doesn't absorb sufficient calcium. This happened to my mum, but it is very important to find out asap.