Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

The Stuff Doctors Tell Their People...sad


Lisa

Recommended Posts

Lisa Mentor

What patients are told, still mystifies me.  This is from a friend....

 

"Lisa, you are in worse shape than me if you have Celiac. i was heading in that direction and my doc told me if I didn't get off gluten that would probably be my final outcome. Basically, I was having an auto immune reaction to gluten. When I ate it I hurt all over...like rheumatoid (sp) arthritis. Gut also messed up all the time. Anyway..I could go on and on. Feeling so much better though."

 

...stupid doctor!


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



Celiac.com Sponsor (A8-M):



powerofpositivethinking Community Regular

wow  :o

kareng Grand Master

What does that even mean?  :wacko:

 

What an idiot!

Fire Fairy Enthusiast

:wacko: Ever want to grab a Doctor and shake him? Maybe make his brain rattle back into place. 

pricklypear1971 Community Regular

What patients are told, still mystifies me. This is from a friend....

"Lisa, you are in worse shape than me if you have Celiac. i was heading in that direction and my doc told me if I didn't get off gluten that would probably be my final outcome. Basically, I was having an auto immune reaction to gluten. When I ate it I hurt all over...like rheumatoid (sp) arthritis. Gut also messed up all the time. Anyway..I could go on and on. Feeling so much better though."

...stupid doctor!

This sounds like one of the new explanations about ncgi??? Have no idea if your friend went through traditional testing, but we read/hear explanations like this all the time on this board re: ncgi.

Lisa Mentor

This sounds like one of the new explanations about ncgi??? Have no idea if your friend went through traditional testing, but we read/hear explanations like this all the time on this board re: ncgi.

I do not know what test she has had and I will post them later if I find out.  But, as you all know Non Celiac Gluten Intolerance and Celiac Disease can rival each other in the level of severety of symptoms and damage.

pricklypear1971 Community Regular

I do not know what test she has had and I will post them later if I find out. But, as you all know Non Celiac Gluten Intolerance and Celiac Disease can rival each other in the level of severety of symptoms and damage.

I don't think anyone doubts the problems gluten can cause, and that symptoms are not diagnostic of one or the other...

My point is that the explanation sounds eerily familiar as an explanation of ncgi. What I hate about the explanation if ncgi (most of the time) is that it comes off as being "lesser" in the dietary requirements as well as effects - when really, studies have not been done and the medical community really doesn't know.


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



Celiac.com Sponsor (A8-M):



CaliSparrow Collaborator

I had a doctor tell me in passing that Celiac wasn't an autoimmune condition. I told him Celiac is the only autoimmune condition with a known trigger. He had to turn around in order to gather himself. It was a good day.

nvsmom Community Regular

Yep. I recently had a doctor tesll me celiac wasn't an autoimmune disease either, and then he gave me a pamphlet that discussed how eating papaya digestive aids would allow people to eat gluten again.... Uh huh. Riiiiiiight.  :blink:  :huh:  :rolleyes:

Lisa Mentor

Yep. I recently had a doctor tesll me celiac wasn't an autoimmune disease either, and then he gave me a pamphlet that discussed how eating papaya digestive aids would allow people to eat gluten again.... Uh huh. Riiiiiiight.  :blink:  :huh:  :rolleyes:

A family member doctor said they are pressured all the time to push pharm's (within the law).  Just as a tire store are solicited to sell the best tires from various tire manufactures. It's just business.

 

I should have married a doctor.....OH, what a goodie bag I would have.  :lol: :lol: :lol:

nvsmom Community Regular
:D LOL
surviormom Rookie

So is that why the GI wants me on Prilosec and the GP wants me on Zantac, both want me on Gaviscon, and I just want Betaine and Slippery Elm.

 

When did it switch from healing people to money money money.  That is just wrong.

TGK112 Contributor

When I was first diagnosed my primary care dr told me, despite my bone loss "Celiac has nothing to do with osteoporosis".

 

After being on the diet, I had a follow up endoscopy. My GI told me that because I healed so quickly "You could treat yourself on occasion with a (gluten) treat"

 

I live in Seattle - anyone know of good doctors here?!?

Fire Fairy Enthusiast

So is that why the GI wants me on Prilosec and the GP wants me on Zantac, both want me on Gaviscon, and I just want Betaine and Slippery Elm.

 

When did it switch from healing people to money money money.  That is just wrong.

I've always wondered when the Hippocratic Oath became the hypocritical oath.

GlutenStinks15 Explorer

Just to add to this, my neice was diagnosed via bloodwork and her parents took her to a GI who said, "I want to do an endoscopy to see the level of damage. Then we can see how much gluten she can eat."

 

WHAT?!? I was practically screaming at my brother in law when he told me that. I said, "SHE CAN'T HAVE GLUTEN!"

 

They are going to another GI now. Ridiculous!

Ollie's Mom Apprentice

My cousin's son was diagnosed at 9 months. He was in rough shape at the time...

Fast forward 4 years, and the doc tells his parents that he's all healed, and can get off this ridiculously restrictive gluten-free diet since he has now healed and, thus, grown out of it.

Argh... So he's eating gluten again!!

His mom should know better. Her grandfather had celiac... His entire life (of course!)

tarnalberry Community Regular

You want to read bad stuff people's docs tell them (though not about celiac), check out Open Original Shared Link.  But don't check it out if you're having a baby soon, or you might scare yourself.

Ollie's Mom Apprentice

You want to read bad stuff people's docs tell them (though not about celiac), check out Open Original Shared Link. But don't check it out if you're having a baby soon, or you might scare yourself.

Wow. I made it to the second page and read the ones about the stillborn and the miscarriage. And I had to stop. Terrible. It makes me sad.

tarnalberry Community Regular

The recent story on there, which had a few quotes, where the docs were really just covering their butts (and later admitted to it, but lied to the mother at first) just helps me remember that there is so much more in "medicine" than actually medicine.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,176
    • Most Online (within 30 mins)
      7,748

    Cassiedawn16
    Newest Member
    Cassiedawn16
    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

    • Heatherisle
      Daughter has started gluten free diet this week as per gastroenterologists suggestion. However says she feels more tired and like she’s been hit by a train. I suggested it could be the change to gluten free or just stress from the endoscopy last week catching up with her. Just wondering if feeling more tired is a normal reaction at this stage. I suppose it’s possible some gluten might have been present without realising. Have tried to reassure her it’s not going to resolve symptoms overnight
    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
×
×
  • Create New...