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RubyRose

A Little Upset With My First Gastro Appointment

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So today went to my first Gastro appointment.  I felt like the Dr. totally dismissed my symptoms.  He told me because I was not skinny and havig diarrhea, I was not celiac.   He said he would do an Endoscope and a colonoscopy to rule out celiac and other gastro issues that may be causeing me distress.  In the end I will be tested but, he looked at my labs from 15 months ago and said they were neg. and that I only had a 5% chance that I did infact have Celiac.  He did not order anymore labs. I was hoping they would check vitamin levels, or do a comprehensive panel.  Or even a genetic test.  My aunt had Crohns but he said it did not matter  for secondary relatives, only grandparents and parents and sibilings.  I don't understand this.  If Aunt had crohns, and she is the daughter of the same parents as my mother, My grandfather of whom y mother said he always had stomach issues. Hello Celiac was not diagnoised in people who would have been in the generation born around the turn of the century, so why would that secondary relative not have any bearing what so ever?  He kept referring to a person your size (I am 250lbs), then gave me an example of a guy who came in with positive blood work he went Gluten free and gained 20 pounds and went from 10 plus stools a day to one normal.  Yea for him, we are not all normal classic cases. 

My physical exam consisted of hem listening to my back my chest, and feeling 3 areas of my stomach for 5 seconds each, I have several rashy areas he glanced at my arm and liked down the back of my shirt said doesn't look like a typical Celiac rash. Seems to me you would want to look at it more closely than that.

 

I am so frustrated. He said he would not "recommend a glutten free diet" because it is expensive and difficult to stick to. But said I could do it if it made me feel better, but there would be no health benefit from it,  If I am not Celiac I am not doing any damage. 

 

I tried to tell him about the journal I had been keeping of before Gluten free, through going back on gluten and he interrupted me and started taking about something else. 

 

Thanks for letting me vent. In the End I am getting tested, but I was hoping for a Dr. who was more sympathetic.

 

 

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So today went to my first Gastro appointment.  I felt like the Dr. totally dismissed my symptoms.  He told me because I was not skinny and havig diarrhea, I was not celiac.   He said he would do an Endoscope and a colonoscopy to rule out celiac and other gastro issues that may be causeing me distress.  In the end I will be tested but, he looked at my labs from 15 months ago and said they were neg. and that I only had a 5% chance that I did infact have Celiac.  He did not order anymore labs. I was hoping they would check vitamin levels, or do a comprehensive panel.  Or even a genetic test.  My aunt had Crohns but he said it did not matter  for secondary relatives, only grandparents and parents and sibilings.  I don't understand this.  If Aunt had crohns, and she is the daughter of the same parents as my mother, My grandfather of whom y mother said he always had stomach issues. Hello Celiac was not diagnoised in people who would have been in the generation born around the turn of the century, so why would that secondary relative not have any bearing what so ever?  He kept referring to a person your size (I am 250lbs), then gave me an example of a guy who came in with positive blood work he went Gluten free and gained 20 pounds and went from 10 plus stools a day to one normal.  Yea for him, we are not all normal classic cases. 

My physical exam consisted of hem listening to my back my chest, and feeling 3 areas of my stomach for 5 seconds each, I have several rashy areas he glanced at my arm and liked down the back of my shirt said doesn't look like a typical Celiac rash. Seems to me you would want to look at it more closely than that.

 

I am so frustrated. He said he would not "recommend a glutten free diet" because it is expensive and difficult to stick to. But said I could do it if it made me feel better, but there would be no health benefit from it,  If I am not Celiac I am not doing any damage. 

 

I tried to tell him about the journal I had been keeping of before Gluten free, through going back on gluten and he interrupted me and started taking about something else. 

 

Thanks for letting me vent. In the End I am getting tested, but I was hoping for a Dr. who was more sympathetic.

 

 

Oh I think you should find another doctor! I have always wondered if my celiac diagnosis (no biopsy yet but gluten-free for 20 years until last month) was not valid because I am not thin (I weigh 125 lbs and eat like a stray dog). My point is that most of us have been told or have come to believe that we are not legitimately sick (whatever that means) when we obviously are!  and it is very important to find a doc who respects you and wants to help you--they do exist! 

 

Here is an article on why weight isn't a criteria for celiac:

 

http://www.nature.com/ejcn/journal/v64/n11/abs/ejcn2010161a.html

 

 

Best of luck to you!

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Your doctor definitely needs to do some continuing education on Celiac disease, and sadly, that is very common for many doctors.  I would print out this article and bring it with you and ask for blood testing to be re-done.  Here is a list of blood tests:

 

-tTG IgA and tTG IgG
-DGP IgA and DGP IgG
-EMA IgA 
-total serum IgA and IgG (control test-must be done to make sure other tests are accurate)
-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests
 
Also, make sure at least 6 biopsies are taken in the endoscopy, as damage can be spotty.  Print out this article and bring it as well.  It is meant for physicians from their part of the University of Chicago Celiac Disease Center website.  Since an endoscopy is not something that you want to re-do, get it clearly communicated beforehand that many biopsies will be taken.  If the doctor won't agree to that, it may be time to find a new doctor.

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.

Celiac.com - Celiac Disease Board Moderator

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I agree. Not an impressive doctor. Get a new doctor an retest or go gluten-free if that is not an option. Hopefully you will feel better in spite of him.


Nicole 

"Acceptance is the key to happiness."

ITP - 1993

Celiac - June, 2012

Hypothyroid - August, 2012

CANADIAN

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