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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

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kareng Grand Master

What does that even mean?  :wacko:

 

What an idiot!

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Fire Fairy Enthusiast

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

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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.

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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.

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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.

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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:

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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:

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nvsmom Community Regular
:D LOL
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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.

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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?!?

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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.

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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!

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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!)

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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.

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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.

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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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    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Zackery Brian
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    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
    • knitty kitty
      @Spacepanther, I found these articles about the connection between Celiac and joint pain. Musculoskeletal Complications of Celiac Disease: A Case-Based Review https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10201087/ And   Intestinal microbiome composition and its relation to joint pain and inflammation https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6814863/ And The gut microbiome-joint connection: implications in osteoarthritis https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6903327/ Sounds like it's time to change the diet to change the microbiome.
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