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We Need To Start A Thread On Stupid Stuff Doctors Say!


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279 replies to this topic

#61 IrishHeart

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Posted 06 March 2012 - 08:07 AM

Are the doctor duds from all over the world gathered together and shipped to the US?



YES!!!!!!!!!!!

Read Dr. Fasano's "Where Have all the American Celiacs Gone?"
he figured out back in '96 that it was likely from lack of diganosis that the numbers of us were so small --not because there were so few celiacs--- but because no one was diagnosing them properly.

http://onlinelibrary...4242.x/abstract

How much has changed since 1996??? :blink:

Apparently, not much.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. Posted Image

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#62 Bubba's Mom

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Posted 06 March 2012 - 08:42 AM

They still aren't teaching much about Celiac in med school. I was going to a clinic where we were seen by Residents..fresh out of school. I was told I couldn't have Celiac...because I'm too old! :o
A second Resident I saw said the same thing. They felt the DX was wrong.
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#63 mushroom

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Posted 06 March 2012 - 11:09 AM

They still aren't teaching much about Celiac in med school. I was going to a clinic where we were seen by Residents..fresh out of school. I was told I couldn't have Celiac...because I'm too old! :o
A second Resident I saw said the same thing. They felt the DX was wrong.


Ye Gods!! I would have asked them, "What on earth are they teaching you people in medical school??" :huh: "Who are these people who are so ignorant??"
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#64 love2travel

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Posted 06 March 2012 - 02:46 PM

YES!!!!!!!!!!!

Read Dr. Fasano's "Where Have all the American Celiacs Gone?"
he figured out back in '96 that it was likely from lack of diganosis that the numbers of us were so small --not because there were so few celiacs--- but because no one was diagnosing them properly.

http://onlinelibrary...4242.x/abstract

How much has changed since 1996??? :blink:

Apparently, not much.

Very interesting, IH. This problem is so beyond my understanding. Just saw my doctor today and he is so knowledgable and aware as I mentioned before. This time my BP didn't go up too badly when he walked into the room! :P
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#65 IrishHeart

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Posted 06 March 2012 - 03:01 PM

Very interesting, IH. This problem is so beyond my understanding. Just saw my doctor today and he is so knowledgable and aware as I mentioned before. This time my BP didn't go up too badly when he walked into the room! :P


Knock it off, you "Cougar"! hahaha

There are some fresh ones who "get it"--like mine.
He has the challenge of (1) diagnosing people properly (2) undoing the damage his colleagues have done and (3) trying to convince the old guard in his practice that they are missing the damn boat.

Poor guy.
He did not intend to become a celiac specialist, but I keep sending people to him because he is their only hope. And he is compassionate enough to take them all on.
  • 0
"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. Posted Image

#66 kareng

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Posted 06 March 2012 - 03:20 PM

I wrote to them and asked why they let me suffer with all those symptoms for 12 years and how they could have made such a mistake?
No reply.



They would never respond, as anything they said in a letter to you could be used in court. If it was calm, well written & not abusive (which is probably what you wrote) they threw the letter away. If your anger shone through or you cussed a bit, questioned his medical credentials or called his ethics into question - they put it in your chart with a note about how it shows your mental instability. Sorry but those things do happen.
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#67 IrishHeart

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Posted 06 March 2012 - 03:51 PM

They would never respond, as anything they said in a letter to you could be used in court. If it was calm, well written & not abusive (which is probably what you wrote) they threw the letter away. If your anger shone through or you cussed a bit, questioned his medical credentials or called his ethics into question - they put it in your chart with a note about how it shows your mental instability. Sorry but those things do happen.


I knew all that when I wrote the letters, K. I did it for me, mostly. And they were firm, factual and non-inflammatory in tone and context. But I pointed fingers and I had the facts on my side.

I was married to a lawyer once (almost became one myself :rolleyes: ) and I knew full well none of them would admit to a damn thing in writing. One did call and leave me a message, but it was non-committal, rehearsed and generic and was probably written as a CYA statement by his lawyer. I have it recorded, but it is so vague, it is useless.

I mostly wrote the letters to give ME some satisfaction and to tell them in effect, "I told you so, you a$$hat". I wasn't making all that up. It wasn't just stress and it wasn't just menopause or fibromyalgia, or grief over my Dad's death or some other BS thing they blew me off with.

It did make me feel better. :) A wee bit.

In the end, "what goes around, comes around".
I believe in Karma. ;)

Someday, someone they love--or perhaps they, themselves?--will need a doctor to really LISTEN and help them--and they will be the ones feeling the frustration we have.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy



Misdiagnosed for 25+ years; finally DXed on 11/01/10. I figured it out myself. Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. Posted Image

#68 Marilyn R

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Posted 06 March 2012 - 06:49 PM

Thanks for your previous kind responses, Mushroom and Love. It was kind of a whack on the head to learn that I had other stuff going on, the Lupus is real, that's from a skin biopsy. I still don't think the Lyme's disease blood draw result is a real concern, it just shows antibodies on the panel, and by body furls antibodies at everything. :D

I have Vanicream 60 sun block in my bathroom and car Mushroom. Just wish I'd known it was so important before. (And howdy, fellow Lupie.)

So to reitterate, pick up your medical records. If you live in a state that the lab is prohibitted by law to release them, ask (or demand) that your doctor write on the lab draw "release records to patient" in your office visit. Same with any test. (Labs are prohibited from releasing results where I live.)

I think part of the problem is that everybody's going electronic. In the old days, the Dr. had a stack of lab results he orderded the day before. His nurse or medical assistant would stick them on his desk. He or She would review them on paper. I don't know where lab results go now, is it to a nurse, medical assistant, Doctor? Anyone that cares?

You have to be the one that cares. That's what I found out by accident and Ihope it can make a difference to somebody else.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#69 mushroom

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Posted 06 March 2012 - 07:20 PM

I have a sneaking suspicion that my lab results go straight to the secretary who scans them into my electronic file and any hard copy gets stuck in a big box of "filing" (Or maybe it's the 'round' filel :P ). Or maybe there IS no hard copy, that they come in electronically into my file, either automatically or placed there by secretary or ?nurse? and maybe the doctor sees them. I got a copy of a consultant's report mailed to me by the consultant, and my doctor hadn't seen it and it wasn't in my electronic file because he had mailed it. :blink: I had to show it to my doc :unsure:
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Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#70 Marilyn R

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Posted 07 March 2012 - 07:08 PM

I don't even want to ask you this because I'm scared of the answer, but here it is:

Did your doctor refer you to the consultant?

Even if he didn't, that's just plain BS.

On a happy note, I saw a new & improved Derm today. He was well informed about Lupus and Mixed Connective Tissue Disease and Celiac based on the conversation we had. He took another biopsy (deep one) on another site after explaining why and asking for permission. I was so impressed with him., he knew his stuff! He told me not to worry, he'd take care of me, espially after the Rheumy that is across the street from him "works me up".

Funny, changing the derm. changed by attitude. I have hope.
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Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.

#71 mushroom

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Posted 07 March 2012 - 07:23 PM

I don't even want to ask you this because I'm scared of the answer, but here it is:

Did your doctor refer you to the consultant?

Even if he didn't, that's just plain BS.


She sure did :rolleyes:
  • 0
Neroli


"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973
Lactose free 1990
(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
Self-diagnosed gluten intolerant, gluten-free Nov. 2007
Soy free March 2008
Nightshade free Feb 2009
Citric acid free June 2009
Potato starch free July 2009
(Totally) corn free Nov. 2009
Legume free March 2010
Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

#72 jeanzdyn

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Posted 07 March 2012 - 07:32 PM

I spent 25 years(!) listing off symptoms to doctors. Not one of them even paid any attention to what seemed like a crazy list of symptoms that had no apparent connection to each other. I gave up trying to get any of them to listen to me. Then I decided to get a colonoscopy (because they recommend it when a person turns 50), and low and behold ---I have celiac disease. And guess what --YES, there is a long list of symptoms that seem unrelated to each other. And many of my symptoms of the past 25+ years are on that list!

I trust no doctor! They are all idiots in my book.
I can't tell you how many times I was told that "it's all in your head" or "there's nothing wrong with you, everyone lists those same complaints..."

I learn more by paying attention to my own body and reading a lot of information on the Internet and in books, magazines, newspapers, and now (Thank God for you folks here!!!) at the Celiac.com forum.

20 years ago I had chronic diarrhea and no medical insurance. I was on my own! Well I found acidophilus and decided to stop eating bread. That did help my digestive problems and it helped for many years, but I now believe that I have had gluten intolerance and later celiac disease for at least the last 28 years.

Even my gastroenterologist only "thinks" that "maybe" I have celiac disease.

I know for sure that I have celiac disease because the gluten-free diet has changed everything for me, and I have only been really gluten-free for about 35 days.
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What is food to one man may be fierce poison to others. —--Lucretius


I miss bread! But I love Kinnikinnick gluten free pizza crust.


Diagnosed celiac disease: November 2011 (biopsy and endoscopy)
other conditions: asthma, arthritis

#73 SakuraKisetsu

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Posted 08 March 2012 - 01:17 PM

While living in Japan I went to the doctor two times because of intense abdominal pain, nausea, cramps, and lots of stomach acid. The first time I went he thought I could have a thyroid problem or some infection so he ran a blood panel and they came up negative. He told me to come back two weeks later to see if my symptoms improved.
I came back just as sick as I had been and now was feeling pain behind my right ribs. He said, "There can't be anything wrong with you since the blood work all came back normal. I'm going to prescribe you some sleeping pills and anti-depressants to help you through the difficult time you must be having."
He ran one blood panel, and pushed my stomach for a minute and decided I must be depressed and unable to sleep. Funny thing is, I told him I'm sleeping MORE than normal because I feel so sick all the time. I got diagnosed with celiac a few months after I yelled at him for not believing me and that I wasn't crazy. Turns out I also had a couple gallstones and constant gallbladder attacks for years, but at least four doctors kept saying I was "too young for those, so we will run tests for something else". Strange that I had every symptom of gallstones but doctors just waved that idea out the door.
Went back to the doctor in Japan after I had my gallbladder removed because I had a heat rash on my surgery scar. He did a full bow in apology for not believing me and doing more tests when he should have. I have since switched doctors, but the amount of time I spent in misery from doctors downplaying my pain and symptoms is more than enough to make anyone sick.
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#74 Skylark

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Posted 08 March 2012 - 04:23 PM

Wow, I guess they don't export all the dumb doctors to the US. At least the one in Japan was decent enough to apologize to you
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#75 Marilyn R

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Posted 08 March 2012 - 04:23 PM

She sure did :rolleyes:


Arrrgh! :ph34r:
  • 0
Positive improvement from elimination diet. Mother dx'd by Mayo Clinic in late 1980s. Negative blood tests and Upper & Lower GI biopsy. Parathyroidectomy 12/09. Recurring high calcium level 4/10. Gluten-free 4/10. Soy & Dairy Free 6/10. Corn free 7/10. Grain free except rice 8/10. Legume free 6/11. Fighting the battle of the battle within myself, and I'm going to win!

As of 2/12, tolerating dairy, corn, legumes and some soy, but I limit soy to tamari sauce or modest soy additives. Won't ever try quinoa again!

Discoid Lupus from skin biopsy 2011, discovered 2/12 when picking up medical records. Systemic Lupus Dx 6/12. Shingles 10/12.


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