'patients Become Experts'

[KCG91]

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! 

[1desperateladysaved]

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

[KCG91]

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. 

[cahill]

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

[GottaSki]

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.

[dilettantesteph]

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.

[luvs2eat]

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.

[KCG91]

  On 2/10/2014 at 3:19 PM, dilettantesteph said:

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!

[powerofpositivethinking]

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!

[1desperateladysaved]

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

[GFAnnie]

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!

[GFAnnie]

  Quote

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.

[bartfull]

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.

[powerofpositivethinking]

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 

 

  On 2/13/2014 at 9:25 PM, bartfull said:

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.

[IrishHeart]

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.

[powerofpositivethinking]

I look for the super bloated belly    Would you agree that any man with a beer belly probably has celiac disease or NCGS?

 

  On 2/15/2014 at 2:12 AM, IrishHeart said:

I know one when I see one....

and I did not go to medical school.

[IrishHeart]

  On 2/15/2014 at 3:21 AM, powerofpositivethinking said:

I look for the super bloated belly    Would you agree that any man with a beer belly probably has celiac disease or NCGS?

 

lol  I do not think I would not necessarily assume that. If he is a beer drinker, he's probably got beer belly, but it does not exclude anything either.

 

I know plenty of chubsters (i was once one myself) who could be celiacs, for sure. One of the biggest mistakes doctors make is

thinking "you can't have celiac if you're overweight".  WRONG!

 

The other is "But no one in your family has celiac, so why would you?"...well, duh, someone has to be diagnosed first for it to be 

a documented familial disease. I bet most of us are the "first" but you can be sure you are not really the 'first" at all. 

The ones before us were just undiagnosed all their lives. (like my Dad)