Jump to content

Follow Us:  Twitter Facebook RSS Feed            




   arrowShare this page:
   

   Get email alerts  Subscribe to FREE Celiac.com email alerts

 
Celiac.com Sponsor:                                    


Photo
- - - - -

'patients Become Experts'


  • Please log in to reply

16 replies to this topic

#1 KCG91

 
KCG91

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 238 posts
 

Posted 10 February 2014 - 03:12 AM

A lot of my friends here at uni are medical students and happened to be studying coeliac disease when I was diagnosed. They are amused by my growing medical knowledge and while revising for their midway exams one of them pointed out that their textbook actually states that 'patients become experts in their symptoms, causes and care'. Couldn't resist explaining to them that this was because so few of them are ;) On the plus side, they all seem pretty clued up on it so let's hope it stays that way when they are practicing! 


  • 0

Katie

 

Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


Celiac.com Sponsor:

#2 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,220 posts
 

Posted 10 February 2014 - 05:31 AM

It is good to know that they are getting this at school-at last.  I have a daughter studying to go to Med School. 

 

Ha!  My MD told me once that she always grabs her computer before coming to talk to me.  She is afraid I will ask too hard of a question!  Yeah, one learns their disease from the inside out.  I feel driven to study and understand, so that possibly I can get relief and optimize what is left!

 

D


  • 0

#3 KCG91

 
KCG91

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 238 posts
 

Posted 10 February 2014 - 05:39 AM

Haha yes my doctor originally thought I was a medical student too! Funny. I just hope they don't see this as shifting the responsibility for treatment etc to us patients (or doing so 'formally' as many of us seem to do it anyway!) 

Yep, they do seem to be getting a good grounding on it, specifically because it is being diagnosed more and more. 


  • 0

Katie

 

Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


#4 a1956chill

 
a1956chill

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,365 posts
 

Posted 10 February 2014 - 05:45 AM

My current PCP has told me more than once that she " needed to do some research" because of things  we were dealing with. She has acknowledged ( more than once) that I knew more about things I am dealing with then she does.

That is why she is my PCP   ;) she is not afraid to say she  doesn't know and lets learn together .She is a keeper :D


  • 0

Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#5 GottaSki

 
GottaSki

    "The past is the past...I've got places to be."

  • Advanced Members
  • PipPipPipPipPipPip
  • 5,100 posts
 

Posted 10 February 2014 - 07:17 AM

This thread made me giggle.  During my first year post dx my celiac doctor asked me where I worked ... at the time I worked only part time at a top research/graduate school.  He then asked what my area of research was as we had had several very lengthy scientific conversations regarding celiac, fibromyalgia and other AIs and I always brought him copies of interesting papers I found on PubMed....his face was priceless when I told him my degree was business, my profession was prop mgmt but I was.working part time in admin as my health limited my ability to work.

 

Very very very glad to hear medical schools are starting to educate future doctors with regard to celiac...it's about time!!!

 

Would have been nice to have been diagnosed while I still had a thriving business.


  • 0

-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#6 dilettantesteph

 
dilettantesteph

    Advanced Community Member

  • Banned
  • PipPipPipPipPipPip
  • 3,035 posts
 

Posted 10 February 2014 - 07:19 AM

I hope that more doctors are taught so that they will stop dismissing the concerns of their patients.  I was told a story last night of a young woman who had gone to doctors several times with stomach pain and diarrhea and was told that her symptoms were psychosomatic.  She later died of colon cancer at age 32.  It's sad.


  • 0

#7 luvs2eat

 
luvs2eat

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 1,114 posts
 

Posted 10 February 2014 - 11:49 AM

When I was diagnosed (10+ years ago), my doc suggested I call the dietician/nutritionist at the hospital for food advice. By the time I got to her and we talked, she told me I already knew way more than she did about being gluten free.


  • 1
luvs2eat
Living in the beautiful Ozark mountains in Arkansas
positive blood tests and later, positive biopsy
diagnosed 8/5/02, gluten-free (after lots of mistakes!) since that day
Dairy free since July 2010 and NOT happy about it!!

#8 KCG91

 
KCG91

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 238 posts
 

Posted 10 February 2014 - 12:48 PM

I hope that more doctors are taught so that they will stop dismissing the concerns of their patients.  I was told a story last night of a young woman who had gone to doctors several times with stomach pain and diarrhea and was told that her symptoms were psychosomatic.  She later died of colon cancer at age 32.  It's sad.

I agree - there are a few students I've met who I wouldn't be happy being treated by. However, it's taught me to be skeptical of doctors and go with my (grumpy) gut!


  • 0

Katie

 

Diagnosed with Coeliac and severe anaemia in September 2013

Gluten free 11/10/13

 

 

 


#9 powerofpositivethinking

 
powerofpositivethinking

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 636 posts
 

Posted 10 February 2014 - 03:10 PM

never did I think reading articles on PubMed would become a hobby.  In fact, I didn't even know what PubMed was before joining this forum.  I gave my GI doctor the World Gastroenterology Report which discussed DGP IgG and its relationship to celiac, and at my last appointment last week it was clear he had been doing his own research.  Change is a great thing!


  • 1

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#10 1desperateladysaved

 
1desperateladysaved

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,220 posts
 

Posted 11 February 2014 - 03:30 PM

My practitioner told me she went to the doctor she works and said, "Now what do I do, she knows more than I do about it."  I didn't hear how he replied.  The thing about what I know is that is very directed toward my specific symptoms.  I am missing a broad overall view of what is going on in the body, how things work together, and where to look for correct information that is helpful.  It is so good to have someone to bounce ideas off of and they will in turn try to educate themselves.  Nobody can be expected to know it all.

 

D


  • 0

#11 GFAnnie

 
GFAnnie

    Community Member

  • Advanced Members
  • PipPipPip
  • 42 posts
 

Posted 13 February 2014 - 01:14 PM

Not sure if this sad or positive, but I'm finding the "patients become the experts" to apply to many medical issues these days.  Positive because patients are able to be so well infomed now, mostly thanks to the internet, but also quite sad and frustrating to go to the doctor when having a medical issue and coming to the realization that you know more than your doctor about it.  We're having this issue with my husbands struggles with getting off a prescription medication.  They know how to prescribe but have NO IDEA about coming off of it safely.  Thank goodness for the internet and forums like this. It's scary to imagine where my family would be right now if we had continued to follow doctors orders!


  • 0

#12 GFAnnie

 
GFAnnie

    Community Member

  • Advanced Members
  • PipPipPip
  • 42 posts
 

Posted 13 February 2014 - 01:16 PM

Nobody can be expected to know it all.

 

Very true.  Seems as though we're reaching an age where more specialists are needed in more fields, and should be relied on much more heavily.


  • 0

#13 bartfull

 
bartfull

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 2,605 posts
 

Posted 13 February 2014 - 01:25 PM

But you know, GI doctors are SUPPOSED to be experts in the field of GI illnesses, yet how many folks right here have complained about GI doctors who know NOTHING about celiac, nor how to test for it? That is inexcusable, especially considering all of the recent attention to the illness. You would THINK that these doctors would investigate all of the new information about it. But I guess that would be asking too much. <_<


  • 0

gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#14 powerofpositivethinking

 
powerofpositivethinking

    Advanced Community Member

  • Advanced Members
  • PipPipPipPipPipPip
  • 636 posts
 

Posted 13 February 2014 - 04:26 PM

I truly believe that if there were a magic pill that pharmaceutical reps could advertise/push onto doctors for symptom suppression, all GI doctors would know how to properly test for celiac.  that's my two cents  :)

 

But you know, GI doctors are SUPPOSED to be experts in the field of GI illnesses, yet how many folks right here have complained about GI doctors who know NOTHING about celiac, nor how to test for it? That is inexcusable, especially considering all of the recent attention to the illness. You would THINK that these doctors would investigate all of the new information about it. But I guess that would be asking too much. <_<


  • 0

Diagnosed with celiac disease, but my fat malabsoption, EPI and Vitamin K deficiency have finally cleared themselves up do to the help from Creon!

Thankful for all the help I've received from members on this board!

Happy to have answers  :) 


#15 IrishHeart

 
IrishHeart

    Warrior Princess

  • Advanced Members
  • PipPipPipPipPipPip
  • 10,558 posts
 

Posted 14 February 2014 - 06:12 PM

My very savvy celiac GI doc told me flat out "You know more about this disease than any of my colleagues. Please, write a book"

 

(I will) But why did I have to almost die and figure this shyte out for myself? My own PCP doc has 3 kids with celiac, for pete's sake. He symptom treated me for 12 years!Sent me to dozens of specialists.

He "did not know how it manifests in adults", he said after the fact.

 BS!! he should know (he knows now, I assure you)

 

Not bragging, just telling the truth. I said  to my GI doc..."But, this is very sad, doc. What can we do to promote celiac awareness?  no one should go unDxed for 20, 30, 40 years..."

He said "Just keep doing what you do,"

 

I love him because he receives all the articles I send with excitement and has accepted all the people I send to him.... and 7 out of 8 were celiacs and one has ulcerative colitis with NCGS,

 

I know one when I see one....

and I did not go to medical school.


  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif





0 user(s) are reading this topic

0 members, 0 guests, 0 anonymous users

Celiac.com Sponsors: