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New & Feeling Lost!

Posted , 5 users are following.

lisa38877
lisa38877

Hi, I'm new to the forum concept but I'm hoping someone will be able to shed some light on my condition, or at least make me feel less alone!

I am a 34 year old female. After 2 years in and out of hospital and numerous blood tests and after 8 years of anaemia treatment, I was finally diagnosed with Celiac 8 months ago. I have had a strict gluten free diet since and have regular blood infusions. Whilst the tiredness, fainting, loss of hair, muscle problems and chest pains have subsided a little I am still exhausted and feel emotionally and physically drained most days. I struggle to exercise due to low energy which has been frustrating because I have always led a sporty lifestyle.

I recently received my latest blood results and whilst my iron has increased from 5 to over 300 thanks to the infusion, my calcium, folate and vitamin D have gone abnormally low. I had a DEXA scan in February which concluded that I have osteoporosis (hips, lumbar and upper spine) and overall my bone density is weak. I know this can be common for people with celiac but I wonder if it is for people so young?

Sadly I have not noticed any real significant change on the gluten free diet and I have just been told that my celiac indicators from my recent blood test has increased further which isn't good and I am being sent back to a gastro consultant for even more tests!!!!

I have completely changed and adapted my lifestyle and I really just want to try and at least feel normal on some days but I feel like I'm constantly fighting a battle and getting nowhere - I've not had any positive news from tests etc to suggest that my strict approach to coping with celiac is working and the more I read up the more I panic so I am feeling very alone and a little lost with the entire thing!

Has anyone suffered similar or have any advice?

Thank you :-)

1 like, 7 replies

7 Replies

  • maggot123
    maggot123 lisa38877

    Posted

    Hi Lisa, sorry to hear you're having such a tough time. 

    Have you joined the Coeliac uk? Their helpline is really good and there's a wealth of information on the website.  I can't help with the bone density results at all, but I understand why you are so worried. You could talk to an expert on the helpline. I'm a long way behind you in terms of diagnosis, but suspect I've been mis-diagnosed for 28 years, so I too am concerned about my bone density.

    The links on the website under community are quite useful too.  This one, by a bloke called Andy, is funny and informative and may help you feel less isolated:

    http://www.coeliacdiseasediagnosis.co.uk

    Hang in there and good luck.  You seem to be doing everything right. 

  • bettyboop4
    bettyboop4 lisa38877

    Posted

    You poor soul

    I hope you feel better soon

    Recovery from vit D deficiency is slow unfortunately - just persevere even though it is frustrating 

    I hope they get to the bottom of all this for you ...

    • lisa38877
      lisa38877 bettyboop4

      Posted

      Thank you so much. Fingers crossed time and peseverance will be the key! :-)
    • bettyboop4
      bettyboop4 lisa38877

      Posted

      Another suggestion

      Be careful about medication as well as some can contain gluten apparently

      Also re exercise - I find a few minutes gentle swimming helps as the water is supportive -

      Good luck  

  • MaggieBgood
    MaggieBgood lisa38877

    Posted

    Lisa you poor thing! You're doing all the right things though, keeping close to the doctor and following up with tests. I am not a doctor, but I would hazard a guess (and that is all it is) that you have been malabsorbing nutrients for many years (your osteoporosis is the big clue there)  and your body is doing it's best to recover but 8 months is not too long if there has been a serious problem for years. Exhaustion can be the body's way of making you rest while it heals.   Another thing to consider: is there any way you could be eating gluten by mistake? It is hidden very well in some foods, like soy sauce, for example.  I do wish you well. Persevere, because I can well remember feeling utterly awful, but I stuck to the diet and one day I thought "I haven't felt as good as this for YEARS". It took a while though.
    • lisa38877
      lisa38877 MaggieBgood

      Posted

      Thank you so much for the response. Yep, I'm thinking the same, it may be that I've spent years undiagnosed so I just need time.

      No hidden gluten as I only eat fresh organic veggies and fruit with fresh fish, I eat eggs and lacto free milk. I just avoid anything processed. Very healthy and balanced.

      I'm dreaming of that "I feel great day" - it's comforting to hear that what I'm feeling is common so thank you for your kind wishes

    • exdancer
      exdancer lisa38877

      Posted

      You poor thing!  You must be really intolerant to have such violent symptoms, but there is help out there.  Forums such as this one and also _____ (link broken) are really helpful (google useful coeliac forums) and give lots of sensible advice and suggestions.

      Stick with it and you will feel better.

      Patient Moderator Note: Removed a broken URL (a link). 

       

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