I was diagnosed with CD 2 years ago and am coming up for my annual check at the hospital next week.

I was undiagnosed by my doctor for 8 years during this time I was trying to conceive not realising that CD may be one of the key factors as to why I wasn't able to conceive even after trying IVF 3 times.  When I self diagnosed myself after being really badly anaemic and just so poorely for so long, I requested that my doctor perform the extra blood test which confirmed my doubts.  When I contacted my doctor with the results, she was totally oblivious to what Coeliac Disease was!  I feel that had she been more up to date with this disease, my chances of conceiving may have been much greater as I would have given my body a better chance of absorbing all the right nutrients.  In stead I have now severe osteoporosis in my spine and am having to undergo long term treatment.  I am only 39 years and feel let down badly.  What training do  you provide for the doctors to have a better understanding of this disease?  I went on to learn that as this can be genetic, I provided my sister with a better understanding that infants with diabetics also are at risk and my neice who is now 3 is checked regularly by her doctor and nurse.

Not only that but your chance of ever recovering is lower because of this according to research by Dr. Fine

http://www.enterolab.com/Essay/

Sara,

Your  story sounds very much like mine.  I was diagnosed 1.5 years ago and I am now 39 years old.  It took five doctors and the one who did diagnose the disease is a Professor at one of the most prestigious hospitals in Paris. (GPs really are not aware!) I was badly anemic and sufferred from various symptoms including irregular heartbeat, blurry vision, bad stomach cramps, diarrhea, faintness, fatigue, weightloss... I also was having problems conceiving.  Since I started the gluten free diet I am feeling like myself again although I have to take mineral supplements as I have lost the ability to digest them. I am also now the mother of a beautiful little boy.  I have kept him away from all gluten so far and I have to admit I am not looking forward to introducing gluten in his diet.  I have learned to live with coeliac and it isn't all that bad except for occasional cravings for beer, pizza and all the gluten rich foods which I have left behind.  Awareness must be raised across the medical profession.  This is a disease that is becoming increasingly common.

Just out of interest Natalie was that the Georges Pompedieu ? 

My old French Dr. refused to accept I had CD even with the results of the biopsy since he said it was a 'childhood disease' only!!

Hi Steve,

It was Saint Antoine Hospital in Paris.  I was referred by my friend who had recto colitis and has to have regular check-ups and who truly believes that this is the best hospital in France for gastroentorology.

Thanks Nathalie,

I will ask my generalist for a referral .. (I have two one who is very good but very business oriented and the other who is a much better listener and better for liong term things)  The former diagnosed my kidney infection before I knew about it last time I got glutened... but she is very much strictly 10 mins per appt since she is in La Defense and has people who take 15 mins out of work to see her. 

Sara, re beer, there are now GF beers available, please see:

http://coeliac.info/suppboard/viewtopic.php?t=112