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. FannyRD
      - FannyRD replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      Thanks for the resource! I will check it out!
    2. Scott Adams
      - Scott Adams replied to FannyRD's topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance"...
    3. Scott Adams
      - Scott Adams replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten ...
    4. trents
      - trents replied to Cecile's topic in Related Issues & Disorders
      2

      Symptoms

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on...
    5. FannyRD
      - FannyRD posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      2

      Gluten free phosphate binders for dialysis patients

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac. Ferric citrate (Auryxia) Sucroferric oxyhydroxide (Velphoro) lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela) ...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,180
    • Most Online (within 30 mins)
      7,748
    Eldret419
    Newest Member
    Eldret419
    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

    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      Thanks for the resource! I will check it out!
    • Scott Adams
      Gluten free phosphate binders for dialysis patients

      By Scott Adams · Posted

      You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Symptoms

      By Scott Adams · Posted

      Living with celiac disease can be especially hard when you’re in a smaller town and don’t have many people around who truly understand it, so you’re definitely not alone in feeling this way. Ongoing fatigue, joint pain, and headaches are unfortunately common in people with celiac disease, even years after diagnosis, and they aren’t always caused by gluten exposure alone. Many people find that issues like low iron, low vitamin D, thyroid problems, other autoimmune conditions, or lingering inflammation can contribute to that deep exhaustion, so it’s reasonable to push your doctor for more thorough blood work beyond just vitamin B. As for eggs, it’s also not unusual for people with celiac disease to develop additional food intolerances over time; tolerating eggs as an ingredient but not on their own can point to sensitivity to the proteins when they’re concentrated. Some people do better avoiding eggs for a while, then carefully testing them again later. Most importantly, trust your body—if something consistently makes you feel awful, it’s okay to avoid it even if it’s technically “allowed.” Many of us have had to advocate hard for ourselves medically, and connecting with other people with celiac disease, even online, can make a huge difference in feeling supported and less isolated.
    • trents
      Symptoms

      By trents · Posted

      Welcome to the celiac.com community, @Cecile! It is common for those with celiac disease to develop sensitivity/intolerance to non-gluten containing foods. There is a high incidence of this with particularly with regard to dairy products and oats but soy, eggs and corn are also fairy common offenders. Like you eggs give me problems depending on how they are cooked. I don't do well with them when fried or scrambled but they don't give me an issue when included in baked and cooked food dishes or when poached. I have done some research on this strange phenomenon and it seems that when eggs are cooked with water, there is a hydrolysis process that occurs which alters the egg protein such that it does not trigger the sensitivity/intolerance reaction. Same thing happens when eggs are included in baked goods or other cooked dishes since those recipes provide moisture.  So, let me encourage you to try poaching your eggs when you have them for breakfast. You can buy inexpensive egg poacher devices that make this easy in the microwave. For instance:  https://www.amazon.com/Poacher-Microwave-Nonstick-Specialty-Cookware/dp/B0D72VLFJR/ Crack the eggs into the cups of the poacher and then "spritz" some water on top of them after getting your fingers wet under the faucet. About 1/4 teaspoon on each side seems to work. Sprinkle some salt and pepper on top and then snap the poacher shut. I find that with a 1000 watt microwave, cooking for about 2 minutes or slightly more is about right. I give them about 130 seconds. Fatigue and joint pain are well-established health problems related to celiac disease.  Are you diligent to eat gluten-free? Have you been checked recently for vitamin and mineral deficiencies? Especially iron stores, B12 and D3. Have you had your thyroid enzyme levels checked? Are you taking any vitamin and mineral supplements? If not, you probably should be. Celiac disease is also a nutrient deficiency disease because it reduces the efficiency of nutrient absorption by the small bowel. We routinely recommend celiacs to supplement with a high potency B-complex vitamin, D3, Magnesium glycinate (the "glycinate" is important) and Zinc. Make sure all supplements are gluten-free. Finally, don't rule out other medical problems that may or may be associated with your celiac disease. We celiacs often focus on our celaic disease and assume it is the reason for all other ailments and it may not be. What about chronic fatigue syndrome for instance?
    • FannyRD
      Gluten free phosphate binders for dialysis patients

      By FannyRD · Posted

      I work as a renal RD and have a Celiac pt which has been rare for me (I might have had 3-4 Celiac pts in 15 years). I wondered if anyone can confirm that these medications are gluten free and safe for Celiac.  Ferric citrate (Auryxia)  Sucroferric oxyhydroxide (Velphoro)  lanthanum carbonate (Fosrenol) sevelamer carbonate (Renvela)   Thank you!
×
×
  • 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.