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The Stuff Doctors Tell Their People...sad


Lisa

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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!


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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.


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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.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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