Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Despair at doctor's attitude


FiveSecondWarning

Recommended Posts

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'.

 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



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!

  • 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. 

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,612
    • Most Online (within 30 mins)
      7,748

    Rotary
    Newest Member
    Rotary
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • itsdunerie
      Dang......did it again and yeah I should admit I am 63 with clumsy phone thumbs. I started feeling better quickly and a doctor a year later said I had to eat  poison (gluten) every day for a month so he could formally diagnose me and NO FREAKING WAY. I couldn't then and can't imagine putting my body through that crap (no pun intended) on purpose ever again.  Why ingest poison for a month to have some doctor say Hey, All you Have To Do Is Never Eat poison Again.. 
    • itsdunerie
      Poop head, sorry, but I accidentally posted and can't figure out how to continue my post. My long winded post was going to tell you that after I figu
    • itsdunerie
      15 years ago my best friend 'diagnosed' me as Celiac. Her little nephew had been formally diagnosed and her observations of me dealing with brain fog, stomach problems and other stuff had her convincing me to try going gluten free. Oh my heavens, within 3 days, no lie, I felt human again. Took me about a y
    • Scott Adams
      It seems like you have two choices--do a proper gluten challenge and get re-tested, or just go gluten-free because you already know that it is gluten that is causing your symptoms. In order to screen someone for celiac disease they need to be eating gluten daily, a lot of it--they usually recommend at least 2 slices of wheat bread daily for 6-8 weeks before a blood screening, and at least 2 weeks before an endoscopy (a colonoscopy is no used to diagnose celiac disease). Normally the blood panel is your first step, and if you have ANY positive results there for celiac disease the next step would be to take biopsies of your villi via an endoscopy given by a gastroenterologist.  More info on the blood tests and the gluten challenge beforehand is below: The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate. Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy: and this recent study recommends 4-6 slices of wheat bread per day:   Not to discourage you from a formal diagnosis, but once you are diagnosed it may lead to higher life and medical insurance rates (things will be changing quickly in the USA with the ACA starting in 2026), as well as the need to disclose it on job applications. While I do think it's best to know for sure--especially because all of your first degree relatives should also get screened for it--I also want to disclose some negative possibilities around a formal diagnosis that you may want to also consider.  
    • Wheatwacked
      Yes.  Now, if you hit your finger with a hammer once, wouldn't you do your best not to do it again?  You have identified a direct connection between gluten and pain.  Gluten is your hammer.  Now you have to decide if you need a medical diagnosis.  Some countries have aid benefits tgat you can get if you have the diagnosis, but you must continue eating a gluten-normal diet while pursuing the diagnosis. Otherwise the only reason to continue eating gluten is social. There are over 200 symptoms that could be a result of celiac disease.. Celiac Disease and Non Celiac Gluten Sensitivity  both cause multiple vitamin and mineral deficiency.  Dealing with that should help your recovery, even while eating gluten.  Phosphatidyl Choline supplements can help your gut if digesting fats is a problem,  Consider that any medications you take could be causing some of the symptoms, aside from gluten.        
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.