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

[Deekle]

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

[kareng]

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?  

 

 

Open Original Shared Link

[Deekle]

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

 

 

Open Original Shared Link

The short answer is yes!

 

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

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

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.

[Deekle]

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

[kareng]

The short answer is yes!

 

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

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

 

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.

[1desperateladysaved]

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

[IrishHeart]

 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?

[GF Lover]

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 

[Deekle]

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.

[Deekle]

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.

[kareng]

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.

[cahill]

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.

[cahill]

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

[Deekle]

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

[kareng]

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

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.

[Deekle]

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

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.

[cahill]

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

[IrishHeart]

 

 

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.  

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.  

 

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!.

[cahill]

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" .   Maybe  "sillyack 101 :lol:

[IrishHeart]

 

 

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

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.

[notme]

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

 

A:  doctor 

 

[Deekle]

 

 

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

Now, please do not take offense.

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.

[IrishHeart]

 

 

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.

 

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

[Deekle]

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.

 

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.

[IrishHeart]

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?