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Older but not wiser

Posted , 6 users are following.

susan878
susan878

I am 57 yrs old and after years of being a seven stone weekling and always tired and down I was finally diagnosed with celosia s disease in September. My doctor told me they could do nothing for me and told me to join the celiac society,which I did. Through them I had to badger my gp to send me  for an endoscopy and they told me I was born with the condition. I was sent for a bone scan which revealed that I was osteopatic . My bones are about 20 years older than me, simply by living with undiagnosed celosiacs.

i am still getting a lot of the symptoms I had before. Has any one else had trouble with their g.p. and how long before I start feeling better, this is my first time talking about this and I'm looking forward help thankshelp thanks

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1 like, 13 replies

13 Replies

  • maggot123
    maggot123 susan878

    Posted

    ... (Pressed send too soon!)

    but even though I'm told it is just a formality both the hospital and my GP don't seem to be at all concerned about osteoporosis.  To my surprise, given the guidelines on coeliac uk, neither is keen to refer me for a DEXA scan as it is not something they "usually do". I'm going to request a bone scan too because I'm concerned about bone density after at least 28 years undiagnosed.

    It is difficult (and draining) to keep pushing for answers, especially when you're not 100% yet because you're newly diagnosed and just starting to go gluten free.

    Keep going! Keep asking questions, especially of the coeliac uk helpline staff and if you're still not happy ask for a second opinion or a referral to a specialist who will take your concerns about osteoporosis seriously. Good luck!

  • maggot123
    maggot123 susan878

    Posted

    Hi Susan,

    Sorry, but I'm new to posting and keep deleting what I type!

    I just wanted to say well done to you for pushing for the endoscopy and the bone scan.  

    You must be really frustrated on finding out you've been undiagnosed for your whole life. On the other hand I'm sure you will be feeling relieved to have found out the cause of your symptoms.

    At least now you can go gluten free and also get the right support and health care.  I'm no expert but I believe there are drug treatments available for post menopausal women to reduce the risk of fracture later on.

    I think you should push for that now: you deserve the very best of care from now forward. 

    I'm waiting for the results of my endoscopy, so I'm a little way off the point you have reached.  I'm realising we need to keep asking questions and taking to others who have been through it.

    .... See othe post for the rest of my reply ( sorry)

    • susan878
      susan878 maggot123

      Posted

      Dear maggot 123

      thank you so much for your reply. Once you have your endoscopy results you should be seen by a rheumatologist , he will send you for the bone scan but all of your results will be sent to your gp.that is where the problems start,gp,s have no idea what to do with the results and end up doing nothing ask for your results to be sent to you too take them to your gp and insist that whatever actions the bone scan shows you want them done. I have spent all morning arguing with my gp to get the extra scans they suggested. I intend to keep fighting until I know everything about my condition.make sure you are prescribed all the vitamins you need. You can get a three months supply for one prescription charge. Don't  let them tell you to buy them yourself,(as mine did). Celiac s are not an illness that makes the news as people think that we,re just fussy eaters. I think we shoul change people's attitude and let them know that this auto-immune disease can ruin your life.

       

    • maggot123
      maggot123 susan878

      Posted

      Thanks Susan, that's very helpful information.  I wasn't aware of the rheumatologist's role in all this! I totally agree with you about changing people's attitudes and explaining what coeliac disease means. Thanks for the advice.  Please let me know how you get on.  MaggotMaggot
  • rachael2014
    rachael2014 susan878

    Posted

    I was seven and a half stone from age 17 to 26 until I stopped being a vegan. I put it down to my strict diet, which probably didn't help, but I believe I was coeliac all that time. In the last 18 years, I have put on weight, now 10 stone, but that thankfully didn't stop me being diagnosed.

    I am now literally becoming a new woman: I may need to buy some bigger bras.

  • natcann
    natcann susan878

    Posted

    Sorry to hear about your troubles. We all seem to have such different histories. When I was diagnosed in 1998 after being ill for years my GP was lovely but told me a lot of damage had been done and that he was doubtful if I would be able to work again. I was osteopaenic ( which is what happens before full blown osteoporosis) only weighed 7 stone and was very depressed about it all. However, I am now 70 and been working as a night sister in a hospice since 2001. It did take a while after going GF to feel good about myself and get my energy levels back. I am retiring now and looking forward to it now that I feel healthy.So there is light at the end of the tunnel.I just wish it didn't take so long for all GP's to be as good as mine was. Hope you feel better soon
    • susan878
      susan878 natcann

      Posted

      Thank you so much for your comments. It sounds like you have a great g.p. how is your osteopathic , do you still suffer with the aches and pains that I am going through at the moment? I have had the same job for 22 years and until 6 months ago I was coping really well but I'm now finding it really tiring and I'm seriously thinking about going part time. I really hope that you enjoy your retirement and thank you once again for your lovely comments and letting me see the light at the end of the tunnel.
    • natcann
      natcann susan878

      Posted

      I don't get the muscle pains much now. I used to have them constantly before I went GF. I have a full blood count every year. I don't have regular bone density tests but did have a repeat when I broke my arm about 5 years ago and it had deteriorated very slightly. I take calcium for this but decided not to take the other treatment which is a weekly tablet. If my bones started aching again I suppose I would have to consider this. My old GP is retired now but I still have the same practice so they know my history well. I have to say that as soon as I was GF I was a new person. Do use the coeliac helpline. They are great
  • MaggieBgood
    MaggieBgood susan878

    Posted

    Hi Susan

    I am sorry for your plight. I started to feel really fantastic after a few months of being gluten free. The difference was astonishing,  I really did feel like a different person. So, with a bit of luck, you've got that to look forward to. I think in your shoes, I might be considering changing my GP., which you are perfectly entitled to do. It sounds  to me like you are not really getting the follow-up care that you should be getting. My GP sent me for a bone scan immediately. And I get yearly full blood counts, all as a result of my diagnosis. I'm assuming that if I'd had an oesteoporosis result, that I would have received the treatment that is definitely available to people with the disease. Best of luck Susan.

  • exdancer
    exdancer susan878

    Posted

    I'm 75 and I'm pretty certain I haven't had coeliac disease all my life but developed it around the menapause.  I know many people are born with CD and others just develop it for no known reason.  I also know we are all very different.

    Most of us have had 'trouble' with our GP as many of them just haven't a clue about the problem and treat it as an alergy rather than a lifetime condition.  Never mind, you've found this site and there ate others on here if you look, also there are groups who meet locally and are a great help.

    Have you followed all the advice from the Coeliac Society?  Seperate workstation, seperate toaster, chopping board, utensils, breadmaker and so on?  Have you considered you may have developed a lactose intolerance (many people do) or are eating gluten without realising it?

    Another useful site is thecoeliac and DH messageboard.

    • susan878
      susan878 exdancer

      Posted

      Thank you so much for your message, I have done all of the advice from the celiac society and have my kitchen color coded so I know which are my utensils. I don't know if I'm lactose intolorant I assume I will be tested for that. I know that I'm not eating gluten (I get very ill if I do ) I think my main problem at the moment it trying to get my vitamin levels up (vit d, b and iron) I still don't seem to be able to absorb them. I'm waiting for some more blood test results.
  • exdancer
    exdancer susan878

    Posted

    Is there a test for lactose intolerance?  I wonder why I wasn't offered it ..... I'm not sure doctors really take us seriously just fobbing us off with a diagnosis of IBS.

     

    • susan878
      susan878 exdancer

      Posted

      I just googled lactose intolerance and there isn't a test although the symptoms are exactly the same as celiac . 
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