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New Member. Had To Go To Medical School To Figure This Out!


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#16 Deekle

 
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Posted 26 February 2014 - 04:12 PM

I guess I though that when they did the biopsys that they were looking for villi atrophy ,,, I am confused :mellow:


First, I wrote colonoscopy, but the others are correct, I should have said endoscopy. (Colonoscopy goes through the anus and you'd have to traverse the entire large intestine and most of the small to biopsy the duodenum. Endoscopy through the mouth and stomach to the duodenum is a much shorter path, so you wouldn't have to go through 20+ feet of small intestine. I don't think they make endoscopes that long.)

The study I mentioned showed that a large percentage of biopsy confirmed Celiac pts (those already confirmed to have villous atrophy) still had villous atrophy years later. So they didn't heal completely. A certain percentage of celiacs are refractory, meaning even a gluten free diet doesn't correct their disease. 43% sounds awefully high to me though. I would expect that many of these were cases of cheating, cross contamination or improper label reading. Still, it was surprising to me that such a large percentage in the study still had signs of villous atrophy on follow up.
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#17 a1956chill

 
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Posted 26 February 2014 - 04:23 PM

It has gotten a bit confusing. Not sure what is going on.

For anyone reading this: it's often a good idea to get the colonoscopy with the endoscopy. But the endoscopy with biopsies, is used to check for the villi damage seen in celiac. The endoscopy is looking at the top half of the digestive system. A colonoscopy can look for other issues, like Crohns. It is for the lower half of your GI system.

Thats what I though.

 

 My GI doc has done both,,, an endoscopy ( upper ) with biopsies  looking for villi damage  .......and also  a colonoscopy  ( lower) with biopsies looking for microscopic  colitis


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#18 IrishHeart

 
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Posted 27 February 2014 - 05:03 AM

 

 

That said, I wouldn't put yourself through med school just to diagnose Celiac better.  

My doc and I were both being facetious. :)Sorry, you don't know me yet and may not "get" my humor. 

 

here's the thing: I can pre-diagnose a celiac just by listening to her symptoms. (and I bet most of us who hear the horror stories posted on here on a daily basis could do the same.) I have sent so many of the walking wounded to my GI doc and he tests them every which

way and 7 out of 8...were celiacs. The other had UC. So why couldn't their GI docs do this? Beats me. Sheer laziness? haven't read the latest Pub Med articles on celiac? Refuse to acknowledge C D isn't just a "rare childhood disease"? Haven't heard it is being diagnosed in people in their 40's, 50's, even in their 80's at an alarming rate--because some doc has missed it all along?

Docs need to see that symptom-treating is not helping --and is keeping their patients ill, on meds and dying slow deaths,

 

Why a "top GI" could not see it in me after 12 years of treating symptoms is absurd. He did the standard colonoscopy and an endo without biopsy and declared I could not possibly have celiac. (I did not know back then what the diagnostic protocol was or I would have made sure he did the proper test) I took his word for it. And went downhill for another 3 years.

 

So, around here, a medical school degree does not excite too many of us. LOL

Now, please do not take offense. :D 

Our member, Jebby (Jess) is one of us, and a medical doctor and even she has this same opinion of the AMA.

 

It should not take an average of 11 years to get a diagnosis. It should not require anyone to go to medical school or to become

well-versed in celiac. And it certainly should not become a disease of self-diagnosis because the medical profession is too slow

to do the job.

 

Just my opinion, feel free to disregard. Good luck in med school!!

... but please, make a pledge to yourself right now that the first thing you will always do is really listen to your patient. If he says he is in pain, he is. And never, ever tell someone "it's all in your head". 

We especially hate hearing that crap.

 

Turns out, for all of us on here---it was NOT in our heads after all. :huh: 

 

Sorry for the mini-lecture, lol ....but I  am hoping you will be especially compassionate and understanding having gone through this yourself. 

 

Best wishes to you!.


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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 

"Do or do not. There is no try. "-  Yoda.

"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


#19 a1956chill

 
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Posted 27 February 2014 - 05:22 AM

As Irish mentioned 11 years is the average for diagnosis  , but some of us ( Irish and my self included )  it took much longer

 

 

I wish you well Deekle :)  hang out in the forums ,ask questions, read and learn :)

 

 

 

Irish,,, I some times think docs  ( in training ) should be required to spend some time with us "sillyacks" . :lol:  Maybe  "sillyack 101 :P :lol: :lol:


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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#20 IrishHeart

 
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Posted 27 February 2014 - 05:28 AM

 

 

Irish,,, I some times think docs should be required to spend some time with us "sillyacks" . :lol:

I love my new GI doc. He's young, he's compassionate, he's celiac-savvy.

We have great talks and he sets aside 45 mins, for me during my check ups. 

He really and truly wants to learn more. What doctor takes med articles from a patient--willingly reads them, then makes copies for his other celiac patients and asks me to keep sending him anything I think may be relevant?

And he calls you back if you leave him a message! Him--not the NP, not the PA, not his secretary--him.

Took me years to find this kid. :) I'm keeping him. lol

 

THIS is the kind of doctor all doctors should be. IMHO.


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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 

"Do or do not. There is no try. "-  Yoda.

"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


#21 notme!

 
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Posted 27 February 2014 - 08:59 AM

Q:  what do you call a med student who graduates with a 'c' average?

 

A:  doctor 

 

;)


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator


#22 Deekle

 
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Posted 27 February 2014 - 01:09 PM

 

 
So, around here, a medical school degree does not excite too many of us. LOL

Now, please do not take offense. :D

Our member, Jebby (Jess) is one of us, and a medical doctor and even she has this same opinion of the AMA.

 

No offense taken at all.   In fact, I completely understand.  I had IBS thrown at me for 8 years, so I know what it's like to be misdiagnosed.  It's an interesting question...you'd think a GI would be able  to nail the diagnosis  pretty easily.  I would immagine its a failure in education coupled with a bit of overexposure from the gluten-free fad diet crowd.

 

I hope I didn't come across as being a know-it-all.  I mentioned med school because it's such a huge part of my life and because it played such a huge role in me figuring out what was going on with my innards.  I very much respect folks who take the time to research their illness.  I wish more people would do so.  If there's one thing I've learned in school, it's that NO ONE can know it all.  There's just too much information.  I can (and have) memorize ten thousand different facts about the human body and still have ten million more that are still out there to know. 

 

Oh yeah...and I'm the only member of my med school class who didn't join the AMA, if that says anything...

 

P.S.  I also spent 5 years in the United States Navy.  I earned my thick skin there.  Feel free to bust my chops all you want.  I can take it.


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#23 IrishHeart

 
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Posted 27 February 2014 - 02:58 PM

 

 

Oh yeah...and I'm the only member of my med school class who didn't join the AMA, if that says anything...

 

P.S.  I also spent 5 years in the United States Navy.  I earned my thick skin there.  Feel free to bust my chops all you want.  I can take it.

 

Thank you for your service, Deekle. 

 

I am not busting your chops, honest! I just hope you will be the kind of doctor who LISTENS to the patient, not the ca-ching!

of the money you can make as you see a buttload of patients in 10 minute quickies jammed into the office 

in one day. :D

 

I was a teacher for 22 years. I earned my thick skin there. 


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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 

"Do or do not. There is no try. "-  Yoda.

"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


#24 Deekle

 
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Posted 27 February 2014 - 03:03 PM

Thank you for your service, Deekle. 

 

I am not busting your chops, honest! I just hope you will be the kind of doctor who LISTENS to the patient, not the ca-ching!

of the money you can make as you see a buttload of patients in 10 minute quickies jammed into the office 

in one day. :D

 

I was a teacher for 22 years. I earned my thick skin there. 

 

Don't you dare tell anyone this....

 

but it's the one job on this planet that I would do for free.  If word gets out I'll never be able to pay back the 50 grand a year they charge me for tuition.


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#25 IrishHeart

 
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Posted 27 February 2014 - 04:13 PM

Don't you dare tell anyone this....

 

but it's the one job on this planet that I would do for free.  If word gets out I'll never be able to pay back the 50 grand a year they charge me for tuition.

 

 

Can't you get the Navy to pay for some of this?


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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 

"Do or do not. There is no try. "-  Yoda.

"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


#26 Deekle

 
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Posted 27 February 2014 - 04:18 PM

Can't you get the Navy to pay for some of this?

 

If I wanted to go back in, then yes.  The navy paid for my undergrad and they only do one or the other unless I went in for another tour.  My wife would not like that very much.


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#27 IrishHeart

 
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Posted 27 February 2014 - 04:27 PM

If I wanted to go back in, then yes.  The navy paid for my undergrad and they only do one or the other unless I went in for another tour.  My wife would not like that very much.

 

Can't say as I blame her.  Stay home. You can do more good if you (1) stay alive and (2)get your medical degree.


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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 

"Do or do not. There is no try. "-  Yoda.

"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


#28 Salax

 
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Posted 28 February 2014 - 04:41 PM

Just my humble opinion and I hope maybe this might resonate with you Deekle...

 

Many doctors (traditional doctors) if they can't give you a prescription drug to fix your symptoms, its like they stumble around lost muttering IBS....(Yup I can give you a pill for that, that works, ok you have IBS)

 

When looking at Celiac Disease we know that there isn't any medication, so it's like they struggle with the idea of a person having to change their diet, vs taking a pill. I think it's a matter of education, but also a matter of perception that we have in this world (generally speaking) that if you can't fix it will a pill, you can't fix it. Which is obviously not the case. So please, don't be that doctor :)

 

And thank you for your service.


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Salax
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Celiac Disease - Gluten Free since Feb 2009,
Cow Milk &  Corn free - June 2012,
Gall Bladder Failure - Removed July 2009,
Colitis, Hashimotos Disease, & Diverticulitis

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
( )_( )
(='.'=)
(")_(") Eat your vegetables!


#29 LauraTX

 
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Posted 08 March 2014 - 01:52 AM

Hi Deekle and welcome! :)  Please do me a favor and enjoy your donuts for me when on your gluten challenge :D  And let us know how it all goes!  Hopefully being on the patient end will help you in your future career :D 


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I am my husband's "Silly Yak Girl" :)
I was diagnosed with Celiac Disease in January 2013. I also have Lupus and Common Variable Immunodeficiency(CVID) for which I am on IVIG.

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#30 Deekle

 
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Posted 21 March 2014 - 07:47 AM

Hi Deekle and welcome! :)  Please do me a favor and enjoy your donuts for me when on your gluten challenge :D  And let us know how it all goes!  Hopefully being on the patient end will help you in your future career :D

Celiac Log: Day 1 of gluten challenge. 

 

I ate a positively delightful bavarian cream filled donut last night at 7:00PM.  I expected to experience symptoms by 11:00PM as it usually takes the gremlins about 4 hours to strike in my experience.  Naturally the roiling stomach cramps and unmentionables came on at 2:00AM instead.  (P.S.  Sitting on the can until your feet go to sleep from sciatic compression really sucks.)  Score:  Gluten: 1  Me: 0


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