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


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#241 ButtercupSarah

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Posted 16 April 2013 - 01:54 PM

This morning while trying to explain my symptoms; the Dr. cut me off with this gem...

"gluten intolerance only gives you diarrhea....can't be that"

Frustrating.
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Gluten Intolerant 2013

Hypothyroid 2013


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#242 stanleymonkey

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Posted 17 April 2013 - 08:56 PM

Sounds like the so called expert at our local kids hospital, your daughter has constipation not diarrhea so she has reflux not any gluten issue
I was unaware that reflux gave you constipation
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#243 Adalaide

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Posted 18 April 2013 - 12:07 PM

I really thought I had found a gem of a doctor. I am not ready to give up but I left my last appointment pretty mad. He talked about his doctor freind who has celiac and knew so much at my first appointment. Then, at my second appointment he actually said to me "everybody cheats." Um.... sorry, apparently you never met someone who takes having a serious autoimmune disease seriously before now. You would think of all the people that would understand how serious this is, a doctor with celiac would. Apparently not.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#244 dilettantesteph

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Posted 19 April 2013 - 05:05 AM

I just had to add to this.

 

A negative biopsy after 6 years gluten free means that you don't have celiac disease.  This is after hearing that they don't count the lymphocytes.  (Which would be all that might be expected on the gluten free diet.)

 

There is no connection between celiac disease and GERD.

 

There is no connection between celiac disease and learning problems with children.

 

This was the GI.


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#245 GottaSki

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Posted 19 April 2013 - 05:12 AM

This morning while trying to explain my symptoms; the Dr. cut me off with this gem...

"gluten intolerance only gives you diarrhea....can't be that"

Frustrating.

 

Yep...been there...heard that until I made it to Celiac specialist -- sad that primaries along with many gastros are still operating off -- three symptoms of celiac disease:  childhood, short stature and the big D --- there are 100 times as many symptoms associated -- educate them with printed info from the University of Chicago.


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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#246 mushroom

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Posted 19 April 2013 - 12:37 PM

educate them with printed info from the University of Chicago.

 

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)


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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

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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

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#247 IrishHeart

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Posted 19 April 2013 - 12:46 PM

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)

This is one of the many reasons why I LOVE my GI  doc. He asks me " How are you" and actually listens to my answer.

He finishes our meeting with an eager smile and  "well, do you have any articles for me to read and give to my patients?"   :) And, I always do!

I know, he's an enigma .....and I'm keeping him for the rest of my days. (even when I move to another state, I am coming back to see him for my annual checkups. I am not kidding)


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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 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


#248 kareng

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Posted 19 April 2013 - 12:49 PM

You forgot one of the previous gems -- they don't have the 'time' (read 'interest') to read stuff that patients bring in for them :angry: (especially if it won't help their golf game.)


That's why I print them off ( showing that they are from U of C) and highlight the 2 or 3 sentences that support my issue. I show them to him/ her during a visit.
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You better cut the pizza in four pieces, because I'm not hungry enough to eat six. ~Yogi Berra

 

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#249 Adalaide

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Posted 30 April 2013 - 09:19 PM

So we were at the doctor's office today for my husband to have a checkup. He has diabetes so this is a pretty regular thing we go through. He has had some elevated liver enzymes and they are rechecking that to see if it has changed or not since last fall. I asked if they could do a full celiac panel since they were already drawing blood. The doctor then looked me straight in the eye and said "we would need a valid medical reason to test for that."

 

Really? REALLY?!?!?! You mean aside from the elevated liver enzymes that could be linked to celiac? Or the fact that he has been diagnosed with IBS and frankly I think that is a load of horsecrap? I pointed out that the elevated liver enzymes can be linked to celiac. I also pointed out the IBS and the doctor asked if he has D. (As if that is the only symptom of celiac, I swear to God going into a doctor's office and knowing more about a disease than them in so infuriating I could scream!) My husband explained the alternating C and D and the doctor automatically dismissively said "sounds like classic IBS." Yeah, and you sound like a classic asshat.

 

The doctor is convinced my husband needs to pay out of pocket for an ultrasound of his liver. Because I guess he needs to pay for that in office machine somehow. But a simple blood test, which will be billed out of office by a lab and covered by insurance, could diagnose an underlying disease which if treated would likely fix the whole liver problem. And it isn't exactly a stretch of the imagination since he has diabetes, which is autoimmune and as a doctor he should know they tend to cluster. (I of course am making the leap of logic that he even has a clue that celiac is an autoimmune disease which is a hell of a leap.) Why do I know this and a doctor doesn't? Why.... why.... why......

 

I hate doctors so much.


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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#250 VeggieGal

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Posted 20 May 2013 - 12:39 PM

Well before I had my thyroid out I was having a pre discussion with the surgeon about the procedure and what to expect. He seemed to bounce around the office like zebedee and proceeded to explain how he just "whips out the thyroid and lobs it into a bucket" ... no wonder I was extra nervous and was right to be so when he woke me up in the middle of surgery to explain how he'd cut a vocal cord! Everytime I think of him, I imagine him not having a steady hand cos of all the jigging about he does :( grrrr, luckily with alot of vocal therapy and praying my voice is finally back, no thanks to him!
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#251 greenbeanie

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Posted 21 May 2013 - 05:09 AM

I'm still awaiting a diagnosis (after 37 years of worsening symptoms), so I don't know yet if my troubles are due to celiac or some other digestive disorder - but no matter the cause, here are some stupid things the doctors have told me over the years:

 

Me, as a slightly-underweight teenager: I've had diarrhea and stomach pain after eating every day for the last six months.

Doctor: Your stool samples are negative for parasites. There's nothing wrong. 

Me: But I'm hungry all the time, and I eat a lot but always have diarrhea!

Doctor: Well, you should consider yourself lucky. Most people would be thrilled to be able to eat whatever they wanted and never gain weight.

 

Me, two years later: I still have diarrhea all the time, and I feel awful and am always exhausted.

Doctor: Your stool sample was negative for parasites again. You're fine, stop worrying! I really think you should see a therapist to deal with your stress.

Me: But I know there's something physically wrong.

Doctor: You know the story of "The Little Boy Who Cried Wolf"? If you keep complaining about the same thing over and over, pretty soon people won't believe anything you say.

 

Me, age 35, after ending up in the hospital with severe fatigue, insomnia, loss of balance and coordination, nausea, and weakness from losing 10 lbs. in a week without trying: I have no idea what's wrong, but please don't tell me this is just stress! These symptoms have been worsening for the last twenty years, and everyone keeps saying it's just "normal for me".

Doctor: Well, you don't have MS, and all your blood tests are fine, except that you could use a good multi-vitamin. 

Me: But I already take vitamins! 

Doctor: You must be taking a children's vitamin, with lower doses. You really need an adult vitamin. 

Me: It is an adult vitamin! 

Doctor: Sometimes the packaging is confusing. Make sure you read the label and get one that says "for adults".

 

Me, trying to explain all the weird neurological symptoms: Something funny is going on with my eyes. I was looking at the door the whole time as you walked in, but somehow I didn't see you until you were right next to me. This keeps happening. My brain tells me this can't be accurate, but it looks like people keep popping into existence right in front of me. 

Doctor: I can assure you, I am not popping in and out of existence.


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#252 GottaSki

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Posted 21 May 2013 - 05:53 AM

Welcome GreenBeanie!

Great post....although I am sorry to hear yet another has suffered for decades as doctors dismiss them simply because the were not trained to order the correct tests for their patients.

Have you now had a complete celiac antibidy panel?

Total Serum IgA
EMA-IgA
DGP- both IgA & IgG
tTG- both IgA & IgG

As you mentioned malabsorption is common in those with celiac disease....so make sure you have had recent vitamin and mineral tests.

If you will be having an endoscopy -- wait to remove gluten until testing is complete -- especially the blood testing.

Hang in there :)
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#253 GottaSki

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Posted 21 May 2013 - 05:59 AM

Well before I had my thyroid out I was having a pre discussion with the surgeon about the procedure and what to expect. He seemed to bounce around the office like zebedee and proceeded to explain how he just "whips out the thyroid and lobs it into a bucket" ... no wonder I was extra nervous and was right to be so when he woke me up in the middle of surgery to explain how he'd cut a vocal cord! Everytime I think of him, I imagine him not having a steady hand cos of all the jigging about he does :( grrrr, luckily with alot of vocal therapy and praying my voice is finally back, no thanks to him!


I missed this post grrrrrrrrrrrrr is right! Very glad you have your voice -- but very angry to read this story!
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-Lisa

Undiagnosed Celiac Disease ~ 43 years

3/26/09 gluten-free - dignosed celiac - blood 3/3/09, biopsy 3/26/09, double DQ2 / single DQ8 positive

10/25/13 - MCAD

Health history since celiac diagnosis became too long -- moved to the "about me" section of my profile

My children and I all have multiple copies of the genes for Celiac Disease, along with large variety of symptoms/resolution gluten-free

Current tally from me, three kids and two grands: 4 diagnosed with Celiac Disease, 2 NCGS

Get PROPERLY tested BEFORE REMOVING GLUTEN.

ALWAYS independently research health related information found on internet forums/blogs.

"LTES" a Gem :)


#254 greenbeanie

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Posted 21 May 2013 - 06:23 AM

Thanks, Lisa. I'm going in tomorrow to discuss celiac testing with a new doctor who seems to take my concerns seriously, and I am still eating gluten until testing is finished. I'm bringing a list of the full celiac panel tests, a long list of vitamins and mineral I want tested, several factsheets from prominent celiac research centers, etc. I am optimistic that we'll finally get to the bottom of this! (I suppose it's a sign of my optimism that the above comments now seem somewhat funny to me in retrospect, instead of just filling me with despair...)


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Daughter: Positive tTG-IgA, DGP-IgA, and DGP-IgG. Celiac confirmed by biopsy in June 2013, at age four. Clear gastrointestinal, behavioral, and neurological/sensory symptoms since very early infancy, even when exclusively breastfeeding.

Me: Diagnosis still unclear after extensive testing: Atypical wheat allergy, severe NCGI, or false negative celiac tests? Doctors disagree.Gluten challenge caused acute gastritis, esophagitis, and angioedema that lasted 4 months and was eventually determined to be a sulfite allergy. Gluten light for 15 years, then gluten free since June 2013.
Long history of eczema, chronic diarrhea, steatorrhea, ataxia, peripheral neuropathy, infertility, chronic insomnia, low cholesterol, vitamin deficiencies, and joint pain. Improved greatly within six months of going gluten-free.


#255 IrishHeart

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Posted 21 May 2013 - 06:39 AM

 (I suppose it's a sign of my optimism that the above comments now seem somewhat funny to me in retrospect, instead of just filling me with despair...)

 

That was Mushroom's intent when starting this thread so long ago. She had her share of "stupid" and she felt we could share our stories of stupid too and commiserate and maybe laugh it off.

 

We have to laugh about it........ otherwise, our heads will explode. :D

 

And, any doctor who implies you are  "calling wolf" or blaming your health decline on "stress"  is not the doctor you want taking care of you. (what a jerk) None of us here think that. We've been there/done that.

 

Hang in there greenbeanie! I hope you get some answers soon.


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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 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



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