Emergency Endoscopy This Week. Need Advice!

[CharlesBronson]

Hello Celiac friends,

I was fortunate to get an emergency endoscopy for this Friday, as I've been continually sick and unable to tolerate food since I've gone gluten free over a year and a half ago. I'm guessing that my intestines are far from healed.

But what else should the doctor be looking for while he's down there? What are some complications that tend to arise with celiac that could have developed since my last endoscopy?

I know gastritis is one. And lesions on my intestinal walls is another.

Any advice is much appreciated!!!

 

 

[DJFL77I]

Have you had one before?

I had an Endoscopy in early May I believe it was... Dr saw mild Gastritis before the biopsy found Celiac...

so yes Gastritis can be there..  

[DJFL77I]

what are your symptoms when you eat..  I still get a bit upset stomach after eating.. and some reflux sometimes...

[CharlesBronson]

Hello! Yes I had an endoscopy about a year and a half ago and found out I have celiac.

I get very tired and nauseous. Nausea can turn to pain and cramps with certain foods. I seem to have sensitivities to everything... but the worst ones are glutamate, histamine, and grains. 

 

Thanks!

[cyclinglady]

When was the last time your antibodies (DGP or TTG) were tested?  This should help determine if your celiac disease is still active.  I am sure your GI will re-biopsy and check for things like SIBO, Crohn’s, active celiac disease or refractory celiac disease.  

[CharlesBronson]

Thanks so much CycleLady.

I get my antibodies tested again on Thursday, but I won't have the results until Monday.

That's a great list. Thank you! I'm writing them all down!

 

[cyclinglady]

Hey, did you ever get a HIDA scan?  Your gallbladder can cause severe pain and nausea.  If I recall your ultrasound was okay, but that can not catch a non-functioning gallbladder (which is commonly linked to celiac disease).

Be sure to get and keep all your medical records.  

[CharlesBronson]

25 minutes ago, cyclinglady said:

Hey, did you ever get a HIDA scan?  Your gallbladder can cause severe pain and nausea.  If I recall your ultrasound was okay, but that can not catch a non-functioning gallbladder (which is commonly linked to celiac disease).

Be sure to get and keep all your medical records.  

No I never got the HIDA scan. I got an ultrasound and they did a CT Scan (with dye) on my whole abdomen and said my gallbladder was Ok. I'll definitely bring up the HIDA scan again though. I'm desperate. 

[cyclinglady]

1 hour ago, CharlesBronson said:

No I never got the HIDA scan. I got an ultrasound and they did a CT Scan (with dye) on my whole abdomen and said my gallbladder was Ok. I'll definitely bring up the HIDA scan again though. I'm desperate. 

They do a contrast with the HIDA scan.  Then they inject a hormone that causes the gallbladder to squeeze and empty.  This is called the refractory rate.  If your gallbladder is not emptying, you are going to suffer, you need that bile to digest any fats.  Eventually the gallbladder stops functioning and it can rot ( infection).   That is what happened to me.  Emergency surgery while on a business trip.  Not fun.  
 

Gallbladders are a family curse.  All were non-functioning.  No stones. Look good on all other tests.  They thought my Dad had cancer because he was in so much pain and stopped eating solid food.  

[CharlesBronson]

44 minutes ago, cyclinglady said:

They do a contrast with the HIDA scan.  Then they inject a hormone that causes the gallbladder to squeeze and empty.  This is called the refractory rate.  If your gallbladder is not emptying, you are going to suffer, you need that bile to digest any fats.  Eventually the gallbladder stops functioning and it can rot ( infection).   That is what happened to me.  Emergency surgery while on a business trip.  Not fun.  
 

Gallbladders are a family curse.  All were non-functioning.  No stones. Look good on all other tests.  They thought my Dad had cancer because he was in so much pain and stopped eating solid food.  

Wow... This is so good to know. Thank you so much for this information. I'm sorry you had to go through that. I'll DEFINITELY bring it up again and say I'm very concerned about my gallbladder and a HIDA scan is necessary. 

Can I ask what your symptoms were CyclingLady? Did they involve pain, nausea and exhaustion? 

[cyclinglady]

I do not recall exhaustion.  But pain and nausea that occurred...humm....when I ate.   Even traveled without eating all day.  I was like my Dad just consuming liquids or not eating.     I also recall being afraid to eat my first meal post surgery.  But I ate and had no pain.  

[DJFL77I]

Todays the day..  Did you get it done already?  Hope they find nothing but a little Gastritis!!!!

[CharlesBronson]

Yup. I was in and out. No active signs of celiac he could see from the endoscopy, but the Dr. did quite a few biopsies to check my villi and other things.

Time will tell! 

[DJFL77I]

Can't see celiac with just endoscopy 

[CharlesBronson]

Yeah I thought that was a weird comment too. I didn't think he could see much without analyzing my biopsies. 

I'll just wait for the biopsy results. 

[CharlesBronson]

So my biopsy results show that my villi have now returned to normal. Does that mean that my celiac is healed??? It sure doesn't feel healed.

Biopsy also said there's "near normal duodenal mucosa with focal active inflammation, non specific." 

In the comments it says it's neutrophilic inflammation likely from a peptic injury?? 

Can anyone help me make sense of this??

Thank you

 

[cyclinglady]

Sounds like your villi healed (celiac disease in remission), but you might  have another problem.  Best to talk to your doctor, ‘cause I am just a lady on the Internet!  

[CharlesBronson]

39 minutes ago, cyclinglady said:

Sounds like your villi healed (celiac disease in remission), but you might  have another problem.  Best to talk to your doctor, ‘cause I am just a lady on the Internet!  

Hahahah! Thanks so much for helping 'Lady on the Internet'  

My doctor didn't book me for an emergency follow up or anything (didn't even call me) so it must be minor (if anything at all). With COVID, the GI docs in my area are very busy and I probably won't see one until next year. 

[cyclinglady]

40 minutes ago, CharlesBronson said:

Hahahah! Thanks so much for helping 'Lady on the Internet'  

My doctor didn't book me for an emergency follow up or anything (didn't even call me) so it must be minor (if anything at all). With COVID, the GI docs in my area are very busy and I probably won't see one until next year. 

If the report was posted by the pathologist, chances are your GI did not even get to see it or comment in your chart.   Follow up with him in a few days.  My diagnosing GI forgot to call me for a few weeks.  I knew though I had celiac disease after binging before my endoscopy, so I went gluten free.  Not that I would recommend doing that, but my hubby had been gluten free, so I knew the diet well.