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

'patients Become Experts'

KCG91

By KCG91
in Doctors

Recommended Posts

KCG91 Enthusiast
KCG91
Posted

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! 

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

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 Enthusiast
KCG91
Posted
  • Author

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 Collaborator
cahill
Posted

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

GottaSki Mentor
GottaSki
Posted

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 Collaborator
dilettantesteph
Posted

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 Collaborator
luvs2eat
Posted

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.

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

Celiac.com Sponsor (A8-M):


KCG91 Enthusiast
KCG91
Posted
  • Author

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 Community Regular
powerofpositivethinking
Posted

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 Proficient
1desperateladysaved
Posted

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 Explorer
GFAnnie
Posted

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 Explorer
GFAnnie
Posted
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 Rising Star
bartfull
Posted

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 Community Regular
powerofpositivethinking
Posted

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. <_<

IrishHeart Veteran
IrishHeart
Posted

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 Community Regular
powerofpositivethinking
Posted

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

 

I know one when I see one....

and I did not go to medical school.

IrishHeart Veteran
IrishHeart
Posted

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) 

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      how much gluten do I need to eat before blood tests?

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen...
    2. Scott Adams
      - Scott Adams replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      IBS-D vs Celiac

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that y...
    3. Scott Adams
      - Scott Adams replied to Amy Barnett's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Question

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid mul...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Multiple Sclerosis and Celiac Disease
      2

      Gluten-Free Diet Linked to Reduced Inflammation and Improved Outcomes in Multiple Sclerosis (+Video)

      Better to know late than never, and it is too bad they did not test you for it earlier!
    5. Scott Adams
      0

      Koikoi Trading Inc., Issues Allergy Alert on Undeclared Wheat and Sesame in FU ZHOU FISH BALL

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,323
    • Most Online (within 30 mins)
      7,748
    bttyknight83
    Newest Member
    bttyknight83
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      how much gluten do I need to eat before blood tests?

      By trents · Posted

      I might suggest you consider buckwheat groats. https://www.amazon.com/Anthonys-Organic-Hulled-Buckwheat-Groats/dp/B0D15QDVW7/ref=sr_1_4_pp?crid=GOFG11A8ZUMU&dib=eyJ2IjoiMSJ9.bk-hCrXgLpHqKS8QJnfKJLKbKzm2BS9tIFv3P9HjJ5swL1-02C3V819UZ845_kAwnxTUM8Qa69hKl0DfHAucO827k_rh7ZclIOPtAA9KjvEEYtaeUV06FJQyCoi5dwcfXRt8dx3cJ6ctEn2VIPaaFd0nOye2TkASgSRtdtKgvXEEXknFVYURBjXen1Nc7EtAlJyJbU8EhB89ElCGFPRavEQkTFHv9V2Zh1EMAPRno7UajBpLCQ-1JfC5jKUyzfgsf7jN5L6yfZSgjhnwEbg6KKwWrKeghga8W_CAhEEw9N0.eDBrhYWsjgEFud6ZE03iun0-AEaGfNS1q4ILLjZz7Fs&dib_tag=se&keywords=buckwheat%2Bgroats&qid=1769980587&s=grocery&sprefix=buchwheat%2Bgroats%2Cgrocery%2C249&sr=1-4&th=1 Takes about 10 minutes to cook. Incidentally, I don't like quinoa either. Reminds me and smells to me like wet grass seed. When its not washed before cooking it makes me ill because of saponins in the seed coat. Yes, it can be difficult to get much dietary calcium without dairy. But in many cases, it's not the amount of calcium in the diet that is the problem but the poor uptake of it. And too much calcium supplementation can interfere with the absorption of vitamins and minerals in general because it raises gut pH.
    • Scott Adams
      IBS-D vs Celiac

      By Scott Adams · Posted

      What you’re describing really does not read like typical IBS-D. The dramatic, rapid normalization of stool frequency and form after removing wheat, along with improved tolerance of legumes and plant foods, is a classic pattern seen in gluten-driven disease rather than functional IBS. IBS usually worsens with fiber and beans, not improves. The fact that you carry HLA-DQ2.2 means celiac disease is absolutely possible, even if it’s less common than DQ2.5, and many people with DQ2.2 present later and are under-diagnosed. Your hesitation to reintroduce gluten is completely understandable — quality of life matters — and many people in your position choose to remain strictly gluten-free and treat it as medically necessary even without formal biopsy confirmation. If and when you’re ready, a physician can help you weigh options like limited gluten challenge, serology history, or documentation as “probable celiac.” What’s clear is that this wasn’t just random IBS — you identified the trigger, and your body has been very consistent in its response.
    • Scott Adams
      Question

      By Scott Adams · Posted

      Here are some results from a search: Top Liquid Multivitamin Picks for Celiac Needs MaryRuth's Liquid Morning Multivitamin Essentials+ – Excellent daily choice with a broad vitamin/mineral profile, easy to absorb, gluten-free, vegan, and great overall value. MaryRuth's Liquid Morning Multivitamin – Classic, well-reviewed gluten-free liquid multivitamin with essential nutrients in a readily absorbable form. MaryRuth's Morning Multivitamin w/ Hair Growth – Adds beauty-supporting ingredients (biotin, B vitamins), also gluten-free and easy to take. New Chapter Liquid Multivitamin and New Chapter Liquid Multivitamin Orange Mango – Fermented liquid form with extra nutrients and good tolerability if you prefer a whole-food-based formula. Nature's Plus Source Of Life Gold Liquid – Premium option with a broad spectrum of vitamins and plant-based nutrients. Floradix Epresat Adult Liquid Multivitamin – Highly rated gluten-free German-made liquid, good choice if taste and natural ingredients matter. NOW Foods Liquid Multi Tropical Orange – Budget-friendly liquid multivitamin with solid nutrient coverage.
    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      IBS-D vs Celiac

      By trents · Posted

      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
×
×
  • 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.