Interesting Initial Gastroenterologist Appointment

[CeeJayKay]

Back in 2009, I came to the conclusion that I have a gluten issue.  I eat it, I have major diarrhea.  I get away with cheating from time to time.  There are some things that trigger it far worse than others, like beer and bread.  For the most part, I just eat gluten free stuff, and I know what to look for on labels.  All labels.  I feel like despite the fact that I pretty much eat gluten free, that I've been having more problems than usual lately, which means maybe I should not cheat anymore.  But, I decided to ask my primary physician about it, and he sent me to a gastroenterologist in the same office building as him. 

My initial visit went something like this.  I told her that I have diarrhea issues when I cheat eating gluten.  So I want to know if I'm full blown Celiac or just gluten intolerant.  Her response was that it made no difference.  I would just have to stop eating gluten.  In my mind's eye it makes a ton of difference!!!!  Celiac means I'm destroying my intestines if I cheat!  Intolerance means I'm just causing myself trouble if I cheat.  Her next comment to me was that because I was choosing vegetables over bread and pasta, that was too much roughage and that was causing my diarrhea.  She never asked me if I was eating whole grain rice or rice noodles, or quinoa. 

~blink~ 

So let me get this straight.  Every doctor I've ever spoken to says to eat more fresh fruits and veggies.  I need the extra iron from all those greens, etc., etc., etc. 

I am not new to this rodeo.  I didn't just fall off a turnip truck.  I told her I wanted to be blood tested, which I'd never done before because I knew  I'd have to eat gluten for a month before the test, and that might mean staying very close to a bathroom for a month.  She had this superiority complex  attitude like I wouldn't want to do that, I guess because she thought I'd jumped on some gluten free band wagon.  I am not gluten free because it is fun.  I like gluten.  I adore gluten.  I worship gluten.  It's not fun being gluten free!  I think when I told her I was in, she was surprised.  I want to put this puppy to rest! 

Now I am one month later, and I made sure to eat gluten every day.  I gained six pounds despite having diarrhea and loose stools.  Fun.  Just peachy.  Seriously, Doc, I subjected myself to this because I'm a hypochondriac.

I am never going back to gluten.  It was an interesting adventure, but no bueno.  I go to see this doctor on July 3.  I don't know what the blood tests will show.  But, I'm really not liking this doctor.  She was too condescending.  If she comes back saying the blood test didn't come back positive for Celiac or gluten intolerance, do I seek a new doctor? 

What annoys me is that I've had female issues that other doctors ignored.  I kept going from doctor to doctor until one finally listened and that was the end of that problem.  Why do we have to go from doctor to doctor?

[kareng]

6 minutes ago, CeeJayKay said:

Back in 2009, I came to the conclusion that I have a gluten issue.  I eat it, I have major diarrhea.  I get away with cheating from time to time.  There are some things that trigger it far worse than others, like beer and bread.  For the most part, I just eat gluten free stuff, and I know what to look for on labels.  All labels.  I feel like despite the fact that I pretty much eat gluten free, that I've been having more problems than usual lately, which means maybe I should not cheat anymore.  But, I decided to ask my primary physician about it, and he sent me to a gastroenterologist in the same office building as him. 

My initial visit went something like this.  I told her that I have diarrhea issues when I cheat eating gluten.  So I want to know if I'm full blown Celiac or just gluten intolerant.  Her response was that it made no difference.  I would just have to stop eating gluten.  In my mind's eye it makes a ton of difference!!!!  Celiac means I'm destroying my intestines if I cheat!  Intolerance means I'm just causing myself trouble if I cheat.  Her next comment to me was that because I was choosing vegetables over bread and pasta, that was too much roughage and that was causing my diarrhea.  She never asked me if I was eating whole grain rice or rice noodles, or quinoa. 

~blink~ 

So let me get this straight.  Every doctor I've ever spoken to says to eat more fresh fruits and veggies.  I need the extra iron from all those greens, etc., etc., etc. 

I am not new to this rodeo.  I didn't just fall off a turnip truck.  I told her I wanted to be blood tested, which I'd never done before because I knew  I'd have to eat gluten for a month before the test, and that might mean staying very close to a bathroom for a month.  She had this superiority complex  attitude like I wouldn't want to do that, I guess because she thought I'd jumped on some gluten free band wagon.  I am not gluten free because it is fun.  I like gluten.  I adore gluten.  I worship gluten.  It's not fun being gluten free!  I think when I told her I was in, she was surprised.  I want to put this puppy to rest! 

Now I am one month later, and I made sure to eat gluten every day.  I gained six pounds despite having diarrhea and loose stools.  Fun.  Just peachy.  Seriously, Doc, I subjected myself to this because I'm a hypochondriac.

I am never going back to gluten.  It was an interesting adventure, but no bueno.  I go to see this doctor on July 3.  I don't know what the blood tests will show.  But, I'm really not liking this doctor.  She was too condescending.  If she comes back saying the blood test didn't come back positive for Celiac or gluten intolerance, do I seek a new doctor? 

What annoys me is that I've had female issues that other doctors ignored.  I kept going from doctor to doctor until one finally listened and that was the end of that problem.  Why do we have to go from doctor to doctor?

So.... you had the blood test but you are gluten free?  Or you ate gluten for a month? The blood test requires you to eat gluten for an extended period of time to work.  

[CeeJayKay]

Yes.  I ate gluten for over a  month.... EVERY DAY!  I had a blast.  I ate all kinds of stuff I never eat.  It was so much fun.... until the intestinal issues came along. And I gained six pounds.   After the blood test, I immediately stopped eating gluten. 

[kareng]

Just now, CeeJayKay said:

Yes.  I ate gluten for over a  month.... EVERY DAY!  I had a blast.  I ate all kinds of stuff I never eat.  It was so much fun.... until the intestinal issues came along. And I gained six pounds. 

We will just see if that was enough time to raise your antibodies.  They usually recommend 3 months for blood work at the U of Chicago.

Because Celiac is an autoimmune & genetic  disease, it would be good to know.  

[CeeJayKay]

I completely agree!  If I'm Celiac, I want to know.  And my older sister has similar issues.  My grandson has a problem with wheat allergies.  I think my father had gluten problems.  I think my nephew has gluten issues. 

[rehh05]

If your blood tests do come out as negative, and they might, you can ask for genetic testing to rule out celiac and an endoscopy to check for damage. 

I was in a similar situation years ago. I was gradually getting more and more tummy problems, a friend suggested cutting back on gluten and bam, I felt better when I did. So, when I finally was able to find a doctor who was willing to believe I didn't just have IBS, I already knew that if I ate gluten I had major diarrhea problems and pain... so went basically gluten free. I told that to the doc and he didn't believe me... but my blood tests all came back negative. Then he did the genetic tests to rule out celiac... they came back positive. Then he did an endoscopy and found damage and diagnosed me... and sent me to a dietitian who knew less about going gluten free than I did. I've been extremely careful since then. 

[Ennis-TX]

9 hours ago, CeeJayKay said:

Back in 2009, I came to the conclusion that I have a gluten issue.  I eat it, I have major diarrhea.  I get away with cheating from time to time.  There are some things that trigger it far worse than others, like beer and bread.  For the most part, I just eat gluten free stuff, and I know what to look for on labels.  All labels.  I feel like despite the fact that I pretty much eat gluten free, that I've been having more problems than usual lately, which means maybe I should not cheat anymore.  But, I decided to ask my primary physician about it, and he sent me to a gastroenterologist in the same office building as him. 

My initial visit went something like this.  I told her that I have diarrhea issues when I cheat eating gluten.  So I want to know if I'm full blown Celiac or just gluten intolerant.  Her response was that it made no difference.  I would just have to stop eating gluten.  In my mind's eye it makes a ton of difference!!!!  Celiac means I'm destroying my intestines if I cheat!  Intolerance means I'm just causing myself trouble if I cheat.  Her next comment to me was that because I was choosing vegetables over bread and pasta, that was too much roughage and that was causing my diarrhea.  She never asked me if I was eating whole grain rice or rice noodles, or quinoa. 

~blink~ 

So let me get this straight.  Every doctor I've ever spoken to says to eat more fresh fruits and veggies.  I need the extra iron from all those greens, etc., etc., etc. 

I am not new to this rodeo.  I didn't just fall off a turnip truck.  I told her I wanted to be blood tested, which I'd never done before because I knew  I'd have to eat gluten for a month before the test, and that might mean staying very close to a bathroom for a month.  She had this superiority complex  attitude like I wouldn't want to do that, I guess because she thought I'd jumped on some gluten free band wagon.  I am not gluten free because it is fun.  I like gluten.  I adore gluten.  I worship gluten.  It's not fun being gluten free!  I think when I told her I was in, she was surprised.  I want to put this puppy to rest! 

Now I am one month later, and I made sure to eat gluten every day.  I gained six pounds despite having diarrhea and loose stools.  Fun.  Just peachy.  Seriously, Doc, I subjected myself to this because I'm a hypochondriac.

I am never going back to gluten.  It was an interesting adventure, but no bueno.  I go to see this doctor on July 3.  I don't know what the blood tests will show.  But, I'm really not liking this doctor.  She was too condescending.  If she comes back saying the blood test didn't come back positive for Celiac or gluten intolerance, do I seek a new doctor? 

What annoys me is that I've had female issues that other doctors ignored.  I kept going from doctor to doctor until one finally listened and that was the end of that problem.  Why do we have to go from doctor to doctor?

....yeah that is the sad story of many of us...I think I went through what was it 6 doctors? or was it 7. I ran into one JUST like that 4 doctors ago. She was very condescending, and this was before my celiac dia. She practically worshiped the whole eat all whole grains, avoid dairy lifestyle. She never even suggested a gluten issue back when I was going nuts with all my issues leaving me in bed with nerve issues most of the week. She did mention I need to start taking magnesium and b-vitamins, this did help but she also suggested I stop eating white bread and move to whole wheat .   I will admit I did later go back to inform her of my condition after I did get the somewhat of a odd method dia. (long story) and she blew it off like there is no way my issues could be caused by wheat.

[Victoria1234]

9 hours ago, Ennis_TX said:

....yeah that is the sad story of many of us...I think I went through what was it 6 doctors? or was it 7. I ran into one JUST like that 4 doctors ago. She was very condescending, and this was before my celiac dia. She practically worshiped the whole eat all whole grains, avoid dairy lifestyle. She never even suggested a gluten issue back when I was going nuts with all my issues leaving me in bed with nerve issues most of the week. She did mention I need to start taking magnesium and b-vitamins, this did help but she also suggested I stop eating white bread and move to whole wheat .   I will admit I did later go back to inform her of my condition after I did get the somewhat of a odd method dia. (long story) and she blew it off like there is no way my issues could be caused by wheat.

Ennis, how were you finally diagnosed?

[Ennis-TX]

1 hour ago, Victoria1234 said:

Ennis, how were you finally diagnosed?

When you have very strong and violent reactions to gluten....try eating something high in gluten in the doctors office and letting them witness the effects (I was out of it for the next day or so and do not recall much of it) . I was already gluten-free for awhile and a challenge was practically suicide so I just was a ass about it and proved my point eating a super gooy large cinnamon roll.  This was after a failed blood test, and was about to dismiss it. They later did a scope and found "Damage common in patients with the disease" I do not know if they took biopsies honestly but I do know it got Celiac Disease in my medical records from that.   This is all fine and grand but it did cause a scary issues with my newest Medicaid supplied GI doc. He was looking at my records and said he wanted to know what test they did to diagnose me as he could not find the results from them in my records. I honestly almost had a panic attack thinking I might have to do that again or a gluten challenge. Unsure what he thought or went with that but then he did the follow up antibody check and scopes both endo and colonoscopy and came back with mostly healed villi and signs of inflammation on endoscope. And extreme inflammation and the diagnosis of Ulcerative Colitis on the colonoscopy.

Hindsight I sorta wish they would make me prove it again in the back of my mind, I have a bucket list of foods I can not eat and top of that list is a monte cristo, would be hell for weeks but if I had to that would be my choice. Death by deep fried pancake battered triple layered sandwich.

[Victoria1234]

25 minutes ago, Ennis_TX said:

When you have very strong and violent reactions to gluten....try eating something high in gluten in the doctors office and letting them witness the effects (I was out of it for the next day or so and do not recall much of it) . I was already gluten-free for awhile and a challenge was practically suicide so I just was a ass about it and proved my point eating a super gooy large cinnamon roll.  This was after a failed blood test, and was about to dismiss it. They later did a scope and found "Damage common in patients with the disease" I do not know if they took biopsies honestly but I do know it got Celiac Disease in my medical records from that.   This is all fine and grand but it did cause a scary issues with my newest Medicaid supplied GI doc. He was looking at my records and said he wanted to know what test they did to diagnose me as he could not find the results from them in my records. I honestly almost had a panic attack thinking I might have to do that again or a gluten challenge. Unsure what he thought or went with that but then he did the follow up antibody check and scopes both endo and colonoscopy and came back with mostly healed villi and signs of inflammation on endoscope. And extreme inflammation and the diagnosis of Ulcerative Colitis on the colonoscopy.

Hindsight I sorta wish they would make me prove it again in the back of my mind, I have a bucket list of foods I can not eat and top of that list is a monte cristo, would be hell for weeks but if I had to that would be my choice. Death by deep fried pancake battered triple layered sandwich.

Wow, I can just see you in that doctors office and the look on their face. 

I have never had a monte cristo sandwich sadly, but I sure want one now.

thank you for sharing your great story!