Watch out for 'feather duvet lung' caution doctors

antares4141

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https://medicalxpress.com/news/2019...WZs1ryB5tNMfwPHSpIz7fUMIhxmSgtnY5eMaeS-asEgk4

I was at the dr's (pcp) today and had a list of things I wanted him to possibly test for or dispel the need for a test through logic, (you would know it because...) Instead he dismissed them all out of hand.
I told him I had been eating gluten since august of 18 and wanted a antibody test for Celiac. He did say "you would have diarrhea" I said I never have normal stools. That apparently wasn't good enough to warrant a simple blood test.
thyroid
any sexually transmitted diseases that might not be easy to diagnose.
Hep c and b
lyme
sleep apnea
pre diabetis
vitimin deficiency

But on the other end of the spectrum I said I had blood in my stool and he didn't ask any questions just want's me to have a colonoscopy. I told him I had one 5 years ago. Now this when you consider how expensive and invasive it is and how cheap a test for blood in the stool would be a good time to be conservative and I very meekly balked "red blood is a sign of hemorrhoids not colon cancer" He spent 5 minutes ripping my ass and lecturing me for that.

I can't help but wonder if he's not getting a kickback for this.

Where I'm going with this is how amazing it is that there are a lucky few who have dr's that actually take the time to turn over a few rocks and see if they can't find out what is wrong with their patient. Like the one in this article.

It's been 23 years for me now. I more than anything want a diagnosis not just so I can maybe have some semblance of a normal life but the closure I would get from all the torment this type of "dismissal" not just from authorities but family members and friends has caused me.
 

Wolfcub

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@antares4141 is there any hope of being able to register with another doctor? (pcp)
Doctors vary widely in their abilities and understanding. Some seem born to it -others, not so.

I don't know how you may fare with finding a pcp who understands ME/CFS. You may not. But you may find someone who is wiling to run tests for things you are worried about perhaps? Without dismissing your concerns.

I remember when my husband was dying from cancer. The doctor prescribed morphine then warned that it could make him nauseous at first if he wasn't used to it. The last thing he needed was vomiting as his ribs all had pathological fractures !!
I suggested prescribing an anti-emetic alongside the morphine, until his body got used to it. The doctor agreed that was a great idea....
Er.... duhhhh!
The doc was such a nice guy too. It was shocking that the suggestion had to come from me, not him though.
Now that doctor was kind enough to come to visit my husband at home in his last weeks. He was a good man....just missing a few "doctor-like" pieces.
 
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It's been 23 years for me now. I more than anything want a diagnosis not just so I can maybe have some semblance of a normal life but the closure I would get from all the torment this type of "dismissal" not just from authorities but family members and friends has caused me.
People still believe what they want to. :cautious:
 

antares4141

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A common misconception is that celiac has to cause diarrhea. That is very false. You need to look into finding a different Dr. and getting your antibody test done.
Thanks MT, I totally agree and am going to look for a new dr. I was off gluten for almost 7 years. I didn't start eating gluten simply because it's easier, I wanted to get this test. Did have it back in december which came back negative but that was only maybe 3 months into the gluten challenge.

I would like to take a biopsy also but it's invasive and expensive so that would be in my thinking warranted if I start showing symptoms again and the antibody test comes back positive.

This isn't the first time he intimated I was a hypochondriac. The hypocrisy and what really get's me is he want's to do the colonoscopy when there are less invasive cheaper test's. And I have already had one in 2014 I think it was.

If bleeding hemorrhoids were sufficient to warrant getting a colonoscopy every 5 years everyone would be having to do this.

And he xrayed my shoulder for an injury I had a month ago. And said everything was fine. I would have thought maybe he could have avoided this also. I wasn't complaining about it because the pain was unbearable. I was just trying to keep him informed.

I am not a big fan of test's that are invasive and or have risks or complications.

I am a fan of test's that have little to no risk's and are relatively inexpensive.

I forgot to mention out here in the desert you get bit by kissing bugs which carry Chagas a extremely dangerous protozoa that can cause heart disease. He totally dismissed the need for this because the diagnoses is almost unheard of N of the mexican boarder. But that could be because most city dwellers are not at risk and most people like me who are at risk never get tested.
 

antares4141

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He also said Celiac is extremely rare which isn't true at all. It was a comon misconception that the prevlance was 1 in 1000, in the past. But more recently like the last 10 to 15 years maybe it's been accessed to affect maybe 1 in 130. Hard to believe any practicing physicians are still unaware of this.

And a while there is no hard evidence their is the thinking that there might be non-celiac gluten sensitivity.

I had all kinds of improvement's in my symptoms since I quit gluten. I think the reason why a lot of the symptoms have not come back is because I gave my body enough time for it to recover somewhat. Weather the symptoms will eventually come back I don't know.

But I had pain in my stomach, Proctalgia fugax, neuropathy in my forarms, blisters on the inside of my lips, brushing I think they call it or excesive salvitation, bloating, feeling like I have been poisoned after meals, and death naps that usually lasted at least 2 hours.

Some of these symptoms totally abated while others I still deal with to some degree like the death naps after meals, dizziness sometimes lack of coordination, PEM, fatigue, etc.

Surprisingly since I have been eating gluten none of these have came back to the degree I had them before I quit back in 2011.