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Coping with Celiac Disease

Share stories, techniques, and information to help others deal with the disease and the gluten-free diet.


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  • Posts

    • Sarah Grace
      I've was diagnosed celiac over 10 years ago when in mid 50s.  For a long time I have been getting headaches at night and in the morning and I suffer a lot of insomnia.  The headaches can be very severe and sometimes develop into a full migraine but other times they wear off within an hour of getting up and eating breakfast.  I have self diagnosed this a hypoglycaemia.  The medical profession in UK, where I live, does not seem to know anything of this and simply tests me for diabetes, which I do not have.  I know this condition is diet related and caused by carbohydrates, I avoid eating in the evenings.  Whatever I do, this condition seems to be getting worse and is very difficult to control.  Any advice would be much appreciated.
    • trents
      But that's the point Scott is trying to make. It is up to you. You do not have to go forward with another biopsy simply because your doctor wants you to. They work for you, not the other way around.
    • Jammer
      Hi Kate,   I am unsure if this is helpful or not. I have Webber calcium citrate everyday. I also react to less than 20 ppm of gluten. I have not reacted to Webber ever. (Fingers crossed it stays that way). Also, I get my blood tested every 6 months to ensure I have zero gluten exposure. It consistently comes back negative(0) to gluten.  A few years ago, my stomach would feel nauseous after taking Ca+  but thankfully that doesn’t happen anymore. Good luck and I hope you find something that works for you.    all the best,    J 
    • J1707
      Honestly that's a good question, but I would like an official answer since I'm not a professional and my doctor's in my opinion no offense to them I'd say gone about it in a unprofessional way unless other's have been told to go gluten free, get a biopsy, just to go back gluten due to a possible false reading and then gotta go back for another biopsy But if it really was up to me per say then I'd definitely stay gluten free like this diet change has really helped me a lot in a lot of ways, not just for health reasons, but discipline toward not indulging to much on things i used too, not to mention being more aware of what I'm intaking by reading labels more and calling the manufacturers to find more answers if needed.
    • captaincrab55
      iceicebritney,  I read where you were referred to John's Hopkins.  If you live in that area/suburb and still have the rash, I can give you my Dermatologist's name(https://www.brderm.com/dr-robinson.html I se Dr Robinson, who diagnosed me with dermatitis herpetiformis/celiac disease 2 weeks after my first visit)
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