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


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#1 Deekle

 
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Posted 26 February 2014 - 12:35 PM

Hello everyone!

 

I am a new member to these forums, though I have been using celiac.com for the last year or so.  This might get long so if you're not interested, feel free to skip this post.  My saga of celiac disease started more than 8 years ago when the er...shall we say..."digestive product expulsion problems" started.  I had a couple of doctors tell me it was "irritable bowel syndrome" or "Spastic colon" and so for the next 8 years I figured I was just blessed to have a colon that did not like me very much. 

 

In 2012 I was accepted to medical school and started my medical training.  Our third unit was titled "ERG" - Endocrine, Reproductive and Gastrointestinal.   About half-way through the unit we did a case study on Celiac disease.  As we read through the case I started realizing that we were talking about ME!  This is not an abnormal reaction.  Med students think they have the diseases that they read about all the time, so I did what I like to call "The great Captain Crunch experiment of 2012".  First I went completely gluten free for a week.  (Important to note:  this is not enough time to regenerate damaged villi, but it is enough time for me to safely assume that anything in my intestines at the time of the experiment should have been gluten free.)  At this point I was still thinking that maybe I was lactose intolerant.   At the end of the week I had a giant bowl of Captain Crunch with Crunchberries (of course) and milk.  BOOM!  hours later the bloating hit....the gas hit...the earth shattering colonic explosion hit.  I went gluten free for another week.  Next time, I ate my Captain Crunch without milk.   Same result.  I was convinced.

 

Next step:  Diagnosis.  This is the tough part.  First I had to convince the doc that I wasn't just another crazy med student.  Then we had to talk about what to do.  Turns out since I'd been having "problems" for 8 years or so, this was a pre-existing condition, so a referral to GI would not be covered by my school insurance.  Blood tests would be fine though.  My Gliadin IgA was more than 2x the reference range and the Transglutaminiase IgA levels were also very elevated.  It was really looking like I had Celiac Disease, but the gold standard of diagnosis is a biopsy.

 

I went gluten free anyway.  Things have been pretty good for the last year.  I still have some issues, but not anything close to what I'd had before what my friends call "The Wheat Butt"  wake up.  I am finally going to get my biopsy on April 4, but am very certain that Celiac at the very least is on the table and am just hoping not to have any additional diagnoses (Crohn's) to add with it. 

 

Anyway, just thought I'd introduce myself since I plan on sticking around.

 

Deekle

33M - Illinois


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#2 kareng

 
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Posted 26 February 2014 - 12:38 PM

Hello everyone!

 

I am a new member to these forums, though I have been using celiac.com for the last year or so.  This might get long so if you're not interested, feel free to skip this post.  My saga of celiac disease started more than 8 years ago when the er...shall we say..."digestive product expulsion problems" started.  I had a couple of doctors tell me it was "irritable bowel syndrome" or "Spastic colon" and so for the next 8 years I figured I was just blessed to have a colon that did not like me very much. 

 

In 2012 I was accepted to medical school and started my medical training.  Our third unit was titled "ERG" - Endocrine, Reproductive and Gastrointestinal.   About half-way through the unit we did a case study on Celiac disease.  As we read through the case I started realizing that we were talking about ME!  This is not an abnormal reaction.  Med students think they have the diseases that they read about all the time, so I did what I like to call "The great Captain Crunch experiment of 2012".  First I went completely gluten free for a week.  (Important to note:  this is not enough time to regenerate damaged villi, but it is enough time for me to safely assume that anything in my intestines at the time of the experiment should have been gluten free.)  At this point I was still thinking that maybe I was lactose intolerant.   At the end of the week I had a giant bowl of Captain Crunch with Crunchberries (of course) and milk.  BOOM!  hours later the bloating hit....the gas hit...the earth shattering colonic explosion hit.  I went gluten free for another week.  Next time, I ate my Captain Crunch without milk.   Same result.  I was convinced.

 

Next step:  Diagnosis.  This is the tough part.  First I had to convince the doc that I wasn't just another crazy med student.  Then we had to talk about what to do.  Turns out since I'd been having "problems" for 8 years or so, this was a pre-existing condition, so a referral to GI would not be covered by my school insurance.  Blood tests would be fine though.  My Gliadin IgA was more than 2x the reference range and the Transglutaminiase IgA levels were also very elevated.  It was really looking like I had Celiac Disease, but the gold standard of diagnosis is a biopsy.

 

I went gluten free anyway.  Things have been pretty good for the last year.  I still have some issues, but not anything close to what I'd had before what my friends call "The Wheat Butt"  wake up.  I am finally going to get my biopsy on April 4, but am very certain that Celiac at the very least is on the table and am just hoping not to have any additional diagnoses (Crohn's) to add with it. 

 

Anyway, just thought I'd introduce myself since I plan on sticking around.

 

Deekle

33M - Illinois

 

 

So, you did learn that for a biopsy to be positive for Celiac, you must be eating gluten?   :o

 

 

http://www.curecelia...luten-challenge


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#3 Deekle

 
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Posted 26 February 2014 - 01:16 PM

So, you did learn that for a biopsy to be positive for Celiac, you must be eating gluten?   :o

 

 

http://www.curecelia...luten-challenge

The short answer is yes!

 

The long answer is that villi recovery can take a long time, even on a strict gluten free diet. 

http://www.ncbi.nlm....pubmed/20145607

http://www.ncbi.nlm....pubmed/24428688

http://www.ncbi.nlm....pubmed/23448408

 

I have had frequent "attacks" throughout the last year, though not nearly as frequently as before.  Most likely due to cross-contamination or improper label reading.

 

I'm still having symptoms of malabsorption (the stool issues, as well as hypovitaminosis D...  11.4 yesterday even after 50,000 IU/wk for 6 weeks).

 

I did consider doing the gluten challenge for a few months prior but decided that I didn't want to go through that because I am pretty sensitive, not to mention busy with the whole med school thing.  I'm (perhaps foolishly) thinking that because I still have symptoms, the biopsy will be telling.


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#4 Deekle

 
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Posted 26 February 2014 - 01:33 PM

P.S. I'm really looking forward to eating some Krispy Kreme's starting 2 weeks before the biopsy ;)


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#5 kareng

 
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Posted 26 February 2014 - 01:35 PM

The short answer is yes!
 
The long answer is that villi recovery can take a long time, even on a strict gluten free diet. 
http://www.ncbi.nlm....pubmed/20145607
http://www.ncbi.nlm....pubmed/24428688
http://www.ncbi.nlm....pubmed/23448408
 
I have had frequent "attacks" throughout the last year, though not nearly as frequently as before.  Most likely due to cross-contamination or improper label reading.
 
I'm still having symptoms of malabsorption (the stool issues, as well as hypovitaminosis D...  11.4 yesterday even after 50,000 IU/wk for 6 weeks).
 
I did consider doing the gluten challenge for a few months prior but decided that I didn't want to go through that because I am pretty sensitive, not to mention busy with the whole med school thing.  I'm (perhaps foolishly) thinking that because I still have symptoms, the biopsy will be telling.


Yes. And I gave you a link to the short answer. The Univ of Chicago Medical school Celiac center participates in research as well as treats Celiacs everyday. They can be a good resource for you based on their experience and involvement with research.
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#6 1desperateladysaved

 
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Posted 26 February 2014 - 01:57 PM

Well, Deekle,

 

I for one am very glad that you learned enough in school to figure out about your gluten intolerance!  We need many and all doctors trained to look for it.  My daughter is studying anatomy for a biology major and hopes of Med school.  Already she came to tell me that Celiac has 300 symptoms.  She says the trouble is that when your body doesn't absorb nutrients, anything can go wrong.  I am glad that she along with many in her class learned that. 

 

I think 8 years of those symptoms are certainly enough.  One day soon you will want to leave Captain Crunch and Krispy Kreme's to the dogs!  I don't think you'll mind, in the end, since you will be feeling better. Meanwhile, I hope you have some vacation time when it is time to get ready for the biopsy.

 

Best wishes to you for your healing,

 

D


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#7 IrishHeart

 
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Posted 26 February 2014 - 02:06 PM

 I'm (perhaps foolishly) thinking that because I still have symptoms, the biopsy will be telling.

 

well, I did not go to med school, but I figured it out.  (my GI doc says I should go so I can help people get Dxed properly...but at my age? er, that's not happening...) LOL

 

Either way, neither of us should have had to do the work. 

 

I cannot imagine that after a year gluten-free you will have villous blunting, but if you want to have a endo and biopsy, that's your call.

 

Some people DO still have blunting and then, it is wake up call about exactly HOW  G F they really are OR if something ELSE may be causing that damage (because I am sure you know that other conditions cause villi damage besides celiac, right?). 

 

You are in what is deemed "diagnosis limbo" and quite frankly, you may never know.

 

Maybe it would be diagnostically helpful to do the genetic test as well?


Edited by IrishHeart, 27 February 2014 - 04:40 AM.

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#8 GF Lover

 
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Posted 26 February 2014 - 02:53 PM

Well, I didn't go to Medical school but I did wake upvin a Holiday Express last night and I can tell you an endoscopic challenge is there for a reason.

 

Whatever diagnosis you get we will help you have many super shiny days to come.

 

Welcome to the forum. 

 

Colleen 


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#9 Deekle

 
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Posted 26 February 2014 - 03:16 PM

well, I did not go to med school, but I figured it out.  (my GI doc says I should go so I can help people get Dxed properly...but at may age? er, not happening...) LOL

 

Hey, you'd be surprised.  I started at 32.  There's a fella in my class who's 45. 

That said, I wouldn't put yourself through med school just to diagnose Celiac better.  It's the hardest thing I've ever done in my life.

 

This biopsy is less about Celiac than it is about ruling out the other stuff.  If it walks like a duck, (positive serology) quacks like a duck (improves drastically on a gluten free diet) it's probably a duck.   That said, I've had other symptoms worrisome for Crohn's, so that needs to be ruled out.  I'll still be going back on the gluten for 2weeks prior to the colonoscopy in April to make sure the little guys are good and buttered up for the GI doc.

 

You'd be surprised what percentage of biopsy confirmed Celiacs still have villous atrophy.   That second article I linked was a very large study in sweden (more than 7000 pts) in which 43% of biopsy confirmed Celiacs still had villous atrophy on followup colonoscopy.  That said, it wasn't a diet controlled study, so (as you say) it might have been a wake up call for people on how gluten-free they really were.


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#10 Deekle

 
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Posted 26 February 2014 - 03:27 PM

Well, I didn't go to Medical school but I did wake upvin a Holiday Express last night and I can tell you an endoscopic challenge is there for a reason.

 

I think there might have been a misunderstanding.  I was under the impression that Kareng was suggesting I stay on gluten indefinately prior to endoscopy.  As I stated, I considered this and chose not to put myself through that for more than a year while waiting for my insurance to cover the colonoscopy.  I already have positive serology, so I really only need a 2 week challenge prior to the colonoscopy.


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#11 kareng

 
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Posted 26 February 2014 - 03:38 PM

I think there might have been a misunderstanding.  I was under the impression that Kareng was suggesting I stay on gluten indefinately prior to endoscopy.  As I stated, I considered this and chose not to put myself through that for more than a year while waiting for my insurance to cover the colonoscopy.  I already have positive serology, so I really only need a 2 week challenge prior to the colonoscopy.



Actually, I suggested you read the link I sent to the Univ of Chicago Med Ct. I think that link mentioned at least 2 weeks for an endoscopy for a Celiac biopsy. Doesn't really address colonoscopy for your other issues. Usually, a colonoscopy isn't considered a diagnostic tool for Celiac. So, if you are just having a colonoscopy, there is no reason to eat gluten.
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#12 a1956chill

 
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Posted 26 February 2014 - 03:52 PM

Celiac  biopsys are done during an endoscopy not an colonoscopy  are you having both??

 

I think there might have been a misunderstanding.  I was under the impression that Kareng was suggesting I stay on gluten indefinately prior to endoscopy.  As I stated, I considered this and chose not to put myself through that for more than a year while waiting for my insurance to cover the colonoscopy.  I already have positive serology, so I really only need a 2 week challenge prior to the colonoscopy.


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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


#13 a1956chill

 
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Posted 26 February 2014 - 03:56 PM

Hey, you'd be surprised.  I started at 32.  There's a fella in my class who's 45. 

That said, I wouldn't put yourself through med school just to diagnose Celiac better.  It's the hardest thing I've ever done in my life.

 

This biopsy is less about Celiac than it is about ruling out the other stuff.  If it walks like a duck, (positive serology) quacks like a duck (improves drastically on a gluten free diet) it's probably a duck.   That said, I've had other symptoms worrisome for Crohn's, so that needs to be ruled out.  I'll still be going back on the gluten for 2weeks prior to the colonoscopy in April to make sure the little guys are good and buttered up for the GI doc.

 

You'd be surprised what percentage of biopsy confirmed Celiacs still have villous atrophy.   That second article I linked was a very large study in sweden (more than 7000 pts) in which 43% of biopsy confirmed Celiacs still had villous atrophy on followup colonoscopy.  That said, it wasn't a diet controlled study, so (as you say) it might have been a wake up call for people on how gluten-free they really were.

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


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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


#14 Deekle

 
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Posted 26 February 2014 - 03:57 PM

They're doing both endo and colo. I've got some symptoms which leave Crohns and Ulcerative colitis on the table.
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#15 kareng

 
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Posted 26 February 2014 - 04:05 PM

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

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.
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