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


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#1 mushroom

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Posted 04 February 2012 - 12:23 AM

:rolleyes: "We need to start a thread on stupid stuff doctors say! It would be hysterically funny." Skylark posted this in another thread. So I thought I would get it started.

I sleep with oxygen at night in Nevada because I start breathing really slowly and shallowly at night and my oxygen concentration in the bloodstream drastically drops and sends me into atrial fibrillation. So I get referred to the sleep unit in New Zealand when I get back, with all my U.S. records and supporting documents saying that BiPAP does not work, but that supplemental O2 does. They do their own SPO2 study, I go for consultation with the "sleep specialist", and this is what I get:

"If one puts the issue of the intermittent atrial fibrillation to one side, then currently we would not regard the provision of nocturnal oxygen as geing indicated in this case.:" And what does he recommend? The failed BiPAP. (And this, I believe, is due to a comment he made offhandedly, "We don't do that (nocturnal oxygen) here." )

So here we have a doctor putting aside the problem he was consulted for and trying to find a solution to another problem not at issue, which appears to be expelling CO2, which is the reason BiPAP doesn't work because I can't breathe out against it. and it makes me ill with crazy blood gases. Gahhhhhh. Bangs head against wall, after a night of atrial fib. and a ruined day recovering from it :rolleyes: Kill this guy :ph34r:

Liike all these cases, it is not funny, more sad than funny, but real. Sorry this one took so much explaining. Hope you hung in there :)
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"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"

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

Caffeine free 1973
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(Mis)diagnosed IBS, fibromyalgia '80's and '90's
Diagnosed psoriatic arthritis 2004
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#2 Jestgar

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Posted 04 February 2012 - 05:21 AM

Doc brought food to a potluck meeting. Set down a bag of pita chips and said "these are gluten-free"...
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#3 Bubba's Mom

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Posted 04 February 2012 - 05:22 AM

After my DX of Cliac with severe villi flattening my insomnia and anxiety started to increase..rapidly. I asked my PCP to run a blood panel to see if I was low on some vitamin or mineral that might be causing my symptoms. She asked if I was taking a multi-vitamin and I said yes. She said "then it couldn't be a deficiency." :blink:

She also said she questions my DX because I'm too old at the age of 54 to just be getting Celiac!

I had a GI run a gene test. When he looked at the report he didn't know how to read it. He saw the alpha 1 and beta 1 with the additional alleles listed and since it didn't say DQ2 and DQ8 ONLY, he said it was negative. I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.
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#4 ElseB

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Posted 04 February 2012 - 06:14 AM

Gastroenterologist walks into the room, looks at my chart and says: "You have Celiac Disease. Go look it up on the internet. Come back in 6 months". Then walks out. That was the appointment where I was given the diagnosis.

Another doctor: "since the Celiac came on so quickly, I'm sure it will disappear just as quickly."
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#5 IrishHeart

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Posted 04 February 2012 - 07:40 AM

I'm actually a DQ2.2. We are more likely to have severe villi damage and complications from Celiac.


Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)
Can you point me to that info source?
thanks a bunch! :)
IH
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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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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. bliss-smiley-emoticon.gif


#6 Bubba's Mom

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Posted 04 February 2012 - 08:36 AM

Not to interrupt the flow here, but me too! DQ2.2 and it is supposedly considered "rare"--about 1-2% of the celiac pop.?

I am wondering where you found that info??--- because I'd love to bring it to my new (very cool) GI--who said he has never seen celiac manifest with so many devastating symptoms as I have.

He is very gracious about accepting articles from me--in fact, he encourages it.:)
Can you point me to that info source?
thanks a bunch! :)
IH

I needed the paper work right in front of me to compare what this article says. It lists the exact info my gene test results show.
http://en.wikipedia.org/wiki/HLA-DQ2
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#7 IrishHeart

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Posted 04 February 2012 - 08:44 AM

I have so many stupid doc stories, arrogant replies that would make you wince and say "what a jerk!" but the worst ones happened before my DX. I was desperate to have some relief from the nerve/joint/bone pain-- so I saw several rheumies and neuros and a pain management doctor with the empathy of a rock. "First do no harm"? Yeah, right! A few from my collection:

(1) March 2008 The rheumy examines me, cannot explain the burning pain, stiffness or tight, weakened muscles at all and when I ask him, "Since there are no medications that are helping, only causing horrible side effects, do you think if I were to use any supplements that reduce inflammation that it would help in any way?"

He replied with a mocking laugh: "Well, sweetheart, if you throw enough sh-t against the wall, eventually something might stick."

<_< Hubs wanted to punch his lights out.

(2) June 2008 The PM doctor looks at my spine films, barks "You have the spine of a 22 year old. It's not your spine." (I actually have osteopenia and several degenerating discs--but apparently, he cannot see them? The spine/ortho guys saw them plain as day)

I ask tearfully: "Then why am I unable to walk, sit, stand or lie down, turn my neck or lift things without excruciating pain?"

He says: "You probably have that fibromyalgia, even though I do not believe it even exists". :blink:

He goes on:" I can't help you. You need to do some yoga or take stress reduction classes. Why are you crying?"

Me: "I am in pain 24/7, I cannot sleep. It hurts just to lay down... and honestly, my father just died."

Him, standing up, signaling we are done now..." Oh, well, you are just grieving. I know, I also have a background in psychology. You need to relax, take some anti-depressants and chill out. I can't help you. I shoot up necks for a living." He left the room.

<_< Hubs wanted to punch his lights out.

(3) Nov. 2009 Another rheumy with a major god-complex tells me I need to take methotrexate because he believes I have "undifferentiated spondyloarthropy" even though I do not have the markers for the disease. :blink: I am so desperate, I consider it. I do have OA, so I thought maybe he knows better. But when I question him about the potential side effects of the drug, stating first "with all due respect...."he gets red-faced and yells at me "Well, that is NOT respectful at all. Are you questioning my 35 years experience? Do you think I would risk my reputation and give you something that would harm you? Do you know who I am???"

<_< Hubs wanted to punch his lights out.


(4)Dec. 2009 A woman doctor-PCP comes highly recommended to me-- takes my health history reads it, says the first doc I mentioned is the "best" and the third is a "quack". When I mention the burning pain I have, she says I am just stressed and writes a script for an anti-depressant, tells me to "relax, girlfriend", and come back in six months.

I ask:"but what about all the symptoms I told you about--the fatigue, my hair falling out, the constant abdominal pain, shortness of breath, diarrhea/constipation"?

She snarks back: "Well I can't solve all your problems for you. C'mon, time to go. I have other patients"

<_< I wanted to punch her lights out.

(5) Jan. 2010 I see an integrative MD for 9 months. When I ask him repeatedly about my hair failing out, he laughed and said, perhaps I was “jealous and I wanted to be like hubs”—referring to his bald head!" :o

About the continuing severe pain, numbness, tingling, burning and gait/ataxia issues, brain fog I had, despite all kinds of therapeutic treatments I paid for at his clinic--acupuncture, massage,supplements? (but balked at chelation treatments)
He said I needed to do volunteer work "to get my mind off the pain." WTF? :angry:

I could not even tie my own shoes or dress myself at the time. Turns out, I had dislocated SI joints, sacroillitis, piriformis syndrome, pelvic floor dysfunction, osteopenia, hypocalcemia, pudendal nerve entrapment, small nerve fiber neuropathy and L1-L2 nerve impingement. :unsure:

and finally....regarding the IgG food antibodies testing he did while I was already gluten-free because I was trying it to see if it would help?

He insisted to hubs and me--when I asked if it would affect the results he said REPEATEDLY--

"Oh, that will not affect the results of the test whatsoever!!!"
He told me it was perfectly safe to eat gluten--as it was not a high level. Just avoid soy because I had an intolerance to that.
Give it a few months and I would be right as rain.

I did that for another 9 months, going downhill so fast I nearly died.

<_< WE both want to punch his lights out and sue him and OWN his fancy clinic.

(6) Jan. 2010 A nurse practitioner in my former GI's office barked at me "It's not gluten! You do not have celiac sprue! you can eat gluten! He went down there last year (he did an endoscopy) and you are fine. You just have GERD! and IBS and probably fibro. Take the anti-depressants. Those are good drugs for fibro and take the Citrucel, carafate, and PPIs.... and take the methotrexate, too. Everyone is trying to help you but you don't take the drugs or listen to our advice. " I threw all the scripts in the wastebasket and never went back.

Well, as it turns out, "he"--the famous GI doc I saw for 12 years and who knew about my 90 lb. decline, labeling me "anorexic"--me, who was overweight for 10 years?--- never did the biopsy when he was "down there"! <_<

<_< Hubs and I--and my new GI doctor--- want to kill him.

<_<

There are a few more:

the Neuro in 2009 who said emphatically, the burning, numbness, poor reflexes, muscle mass loss, ataxia and loss of memory were not a "neurological issue because my EMGs and Brain MRI were okay"...and I should go back to the rheumatologist" :blink:

and... my very nice Primary Care guy who was so frustrated for all those years he could not help me figure it out but kept sending me here and there--- when I told him what I DID have (3 years later) he turned pale, flipped through my encyclopedia-sized chart like it was suddenly all so very clear and illuminated by the sun and said " OMG! That's it! of course! you need to be gluten free for life!".....

The kicker? His children have celiac, but as he put it "Wow, I did not know how it manifests in adults.".... :blink: :blink:

...there are more, but I am pooped from typing so long. :P
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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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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. bliss-smiley-emoticon.gif


#8 Bubba's Mom

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Posted 04 February 2012 - 09:34 AM

My report read
DQ alpha 1 01:03, 02:01
DQ beta 1 02:02, 06

So I have the DQ A*201 and DQ B1*202 that forms DQ2.2

Quotes from the article without the extra double-talk follows...

DQB1*0202This allele is linked to several DQA1* alleles, the linkage with DQA1*0201 forms the DQ2.2 haplotype

DQ2.2DQ2.2 is shorthand for the DQ α2β2 heterodimeric isoform. The isoform is encoded almost exclusively by the DQA1*0201:DQB1*0202 haplotype. The haplotype is linked to DR7. A small percentage of coeliac disease are associated with this haplotype, and some disease causing gliadins are presented by DQ2.2.

25% of celiacs are DQ2 homozygotes (HLA DQB1*02 homozygotes), only a small percent of these do not bear DQ2.5cis.[3] This minority are invariably DQA1*0201:DQB1*0202 (DQ2.2cis homozygotes).

Isoform pairings in DQ2.5/DQ2.2 results in two functionally unique isoform. The majority of DQ2 homozygotes are homozygotes of the DQ2.5 haplotype or DQ2.5 and DQ2.2 haplotypes. These DQ2 homozygotes tend to show increased mucosa damage and degradation and are at greatest risk for severe complications of coeliac disease, refractory disease, and enteritis associated T-cell lymphoma (EATL). Further information: DQ2.5, DQ2.2, DQ2 and coeliac disease, HLA DR3-DQ2
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#9 IrishHeart

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Posted 04 February 2012 - 09:54 AM

Okay, thanks. I have read this info already myself. I thought you had something else I could give him.

Let's not hijack this thread and go off topic too much :); we can pursue this on another thread or in a PM maybe? ;) okay?
IH
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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

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  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. bliss-smiley-emoticon.gif


#10 Jestgar

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Posted 04 February 2012 - 10:31 AM

Fun related thread: top 5
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"But then, in all honesty, if scientists don't play god, who will?"
- James Watson

My sources are unreliable, but their information is fascinating.
- Ashleigh Brilliant

Leap, and the net will appear.

#11 Skylark

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Posted 04 February 2012 - 11:07 AM

This is so funny! I'm glad you started it, Shroomie.

I asked my pretty good PCP about whether there are ways to lessen autoimmunity. He said "well the only thing I know of is to lower your stress level".

Gee, doc I wouldn't be STRESSED OUT if you could fix my dizziness, brain fog, and cognitive problems and refrain from pushing useless antidepressants. :blink:
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#12 researchmomma

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Posted 04 February 2012 - 01:12 PM

Our pediatric GI (the Celiac expert in our city) looked at my short, puberty delayed and skinny daughter and said "I can't get my head around all of her symptoms. Her blood work is negative so let's not waste time with a biopsy, let's just see if she has the genes. If no genes, it is not possible to have Celiac". I asked her about the negative IgA testing because her IgA is low and she said since it isn't deficient, the test is fine and negative.

Then she said, "Since she doesn't have Celiac, mostly likely, let's give her high dose prilosec for one year. This will tell me if I am on the right track". What track? The I don't know what to tell you if you aren't Celiac tract?

I get to go back this Thursday and see what she says about me not giving my daughter prilosec and taking her off gluten with great success. That wil be good. Oh and I will give her the high fecal fat report which proves that she is not absorbing nutrients just like the endocrinologist and I thought.

I am amazed that a Celiac specialist would actually say with complete conviction: if no genes, you cannot possibly have Celiac. Dr. Fasano even states that it is possible. Sheesh.

I am dreading that visit.
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#13 researchmomma

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Posted 04 February 2012 - 01:14 PM

IH, I think you take the cake (gluten-free of course) on this one. I am appalled at the ignorance and the lack of care.
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#14 elizabethh

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Posted 04 February 2012 - 05:23 PM

I have a good one! Just a little over a month ago I was at the doctor's office for the stomach flu, and he asked me about the celiac disease after seeing it on my chart so I just briefly explained to him what happens with that, then he says:

Doctor: "Wow you need to get that checked out, you have that really bad and you need to find out what's going on."
Me: "What do you mean?"
Doctor: "You have a severe case of it, other people do not have it as badly as you do."
Me(getting nervous and confused): "What exactly do you mean? I have it worse?"
Doctor: "Well when people have celiac disease they can't eat gluten while they're sick, but once their intestines heal then they can eat gluten again."

WHAAAAT?!

Totally never thought I would look at a DOCTOR, feeling like they are totally stupid. I spent like 15 minutes explaining to him how it really is and being in total shock that anyone could think/say that, much less a doctor! Omg!

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supersensitive celiac, lactose intolerant, casein intolerant, egg white intolerant, allergic to scallops (other shellfish?)
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#15 MitziG

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Posted 04 February 2012 - 07:54 PM

"Oh honey, you don't want Celiac Disease. You can't have bread!" Oh, well then I guess I don't have it. Never mind this biopsy report....Duh.
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