Do you get any strange symptoms?

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Hi all!!! 

I was diagnosed with Coeliac Disease in 2015.

I have since been on a gf diet but I still experience odd symptoms.

It’s hard to get any good help from Drs in Australia... I’ve had one Dr ask me what it is and prescribe medication with gluten in it....

Do any of you get strange or abnormal symptoms like:

Internal vibrating 

Extreme fatigue

Anxiety

Heart palpitations 

Etc???

Thank you 😊 

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6 Replies

  • Posted

    How long have you been following a gf diet? It can take a while for symptoms to go. However have you tested vitamin d and iron/ferritin? Symptoms sound like could be low vitamin d & iron deficiency anemia. The latter can be caused by malabsorption from coeliac disease

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    • Posted

      I’ve been following it since I was diagnosed but I had times when I ate normal food... I’m much stricter now I’ve had my Daughter. I only make my own stuff and have a great diet.

      My ferritin levels are low but not overly low they are 24 since last testing so Dr is giving me a course of iron injections.

      I’ve always had low Vit D but that hasn’t been tested in so long so might ask for that, B12 and trace minerals too

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  • Posted

    Hi Louise,

    Yes, Ive experienced all the things you mention and loads more. I was diagnosed three and a half years ago and it has been a long and difficult journey.

    I finally feel like I'm getting there. I follow a FODMAP diet (developed in Australia)fairly rigidly and for me this was the only way forward.

    Often the gut is so destroyed by gluten that it becomes intollerant to lots of other foods too as I found out when eating brocolli.

    My diet is very limited but after being so restricted for about 18 months now I not only feel better but can now break it occasionally (gf mince pie and cream at xmas!)without devastating effect.

    I haven't found doctors to be that helpful or indeed knowledgeable about Coeliac and I have spent many hours researching. There is a lot of information abut FODMAP on the internet and your dietician should also be able to advise you.

    Make sure you are not vitamin deficient too especially Bs and iron. If you do need iron I would recommend ferrum phos tissue salts as they absorb well and do not make you constipated.

    It does get easier and although the diet is restrictive it's so worth it to feel 'normal' again.

    Best Wishes

    Lyn

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    • Posted

      Hi Linda  I noticed how you say you can break yr diet occasionally.. just want to say if you have something with gluten and don't feel any effects it is actually still doing damage to your gut..  Also you will find that the older you get symptoms and effects can change.. and the worsen..

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  • Posted

    Hi Louise .. Undiagnosed Coeliacs become deficient in many vitamins and minerals and mostly have to take supplements still after going gluten free.  Calcium may help you sleep better (it cured my husbands sleep apnoea and resulted in lots more energy).  Vit B for anxiety/heart palpitations. The 'internal vibrating' could be lack of magnesium.   Take the calcium through the day.. and magnesium later and at night time. (separately)  Hope this helps!

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  • Posted

    I never ever break the gluten free diet........I meant the FODMAP! eg. I am mainly dairy free but had cream at Christmas. 

    No sadly once diagnosed as Coeliac that means Gluten free for life including being very careful of contamination.

    Lyn smile

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