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Despair at doctor's attitude


FiveSecondWarning

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FiveSecondWarning Newbie

I am a diagnosed celiac.  After years of increasing lethargy and unceasing diarrhoea, I finally tried life without gluten - and recovered.  I then got a blood test done (DGP) which confirmed that I was a celiac.  My father has had explosive diarrhoea for as long as anyone can remember.  He and my mother were very dismissive of my frequent suggestions, after my own confirmed diagnosis, that he trial a gluten-free diet for a week to see if there would be any improvement (as I suspected he too was celiac).  I don't have a very good relationship with either of them, but I do want to help: particularly as my father is now obliged to stay in bed all the time and has a succession of full-time carers attending to his personal care needs.  

The first carer I broached the subject with was, I thought, well-meaning but misguided.  She had correctly identified there was a problem and her response was to put my father on rye bread instead of wheatflhour bread and assiduously made him porridge every morning for breakfast.  When I said that rye and oats contained gluten and so would not stop the diarrhoea, it made no difference to what she did.  

The latest carer did, however, take my suggestion on board.  I was pleased yesterday when my mother rung me and told me that she had bought her first loaf of gluten-free bread.  She added, a bit aggressively: "I ran it past the doctor first and she said she thought it was very unlikely it would turn out he had celiac disease because he's always been heavy (i.e. big build).  She said there were much more important things to think about than this for him.  But she said the gluten-free diet wouldn't do him any harm".  I was so disappointed by the doctor's attitude, considering that she must know this is an inherited disorder and his daughter is diagnosed with it.  And all the more so as my father's fall last year happened when he was making one of his then very-frequent trips to the bathroom.  You go on the internet and one of the first things you read is 'not all pre-gluten free diet celiacs look thin'.

 

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manasota Explorer

Welcome!  You are right that not all Celiacs are thin.  You are also right that there are doctors who know nothing about Celiac Disease.

It's a wonderful thing to try to help others.  However, you can only do what you can do.

Sometimes the best thing you can do is to help yourself.  Most of my family is also in denial.  I know it's frustrating, and hard, and sad.

Try to take the best care of yourself that you can.  Just keep doing your best.  Churchill said, "Just keep going"!

Good luck!

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  • 3 weeks later...
Nicki Raeleen Rookie

In my experience, be pushy girly!! it took me over 8 months to get diagnosed. they said the tests were not needed, that there was NO WAY i would have it. I agree with Manasota, do the best you can. A lot of my friends thought i was faking it for attention ( I was in high school, what do you expect), and it took along time for even my boyfriend to really understand. 

Remember though, if he does get approved for the blood test( and he is eating gluten free), make him eat A LOT of gluten other wise the test will come out negative. 

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