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

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
      133,204
    • Most Online (within 30 mins)
      7,748

    JaymeC
    Newest Member
    JaymeC
    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

    • Scott Adams
      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • 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.