Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Emergency Endoscopy This Week. Need Advice!

CharlesBronson
 Share

Recommended Posts

CharlesBronson Enthusiast
CharlesBronson
Posted

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!!!

 

 

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


DJFL77I Experienced
DJFL77I
Posted

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 Experienced
DJFL77I
Posted

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

CharlesBronson Enthusiast
CharlesBronson
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Enthusiast
CharlesBronson
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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.  

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


CharlesBronson Enthusiast
CharlesBronson
Posted
  • Author
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 Grand Master
cyclinglady
Posted
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 Enthusiast
CharlesBronson
Posted
  • Author
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 Grand Master
cyclinglady
Posted

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 Experienced
DJFL77I
Posted

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

CharlesBronson Enthusiast
CharlesBronson
Posted
  • Author

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 Experienced
DJFL77I
Posted

Can't see celiac with just endoscopy 

CharlesBronson Enthusiast
CharlesBronson
Posted
  • Author

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. 

  • 4 weeks later...
CharlesBronson Enthusiast
CharlesBronson
Posted
  • Author

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 Grand Master
cyclinglady
Posted

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 Enthusiast
CharlesBronson
Posted
  • Author
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 Grand Master
cyclinglady
Posted
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.  

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
 Share
Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,345
    • Most Online (within 30 mins)
      7,748
    Nana3
    Newest Member
    Nana3
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Ginger38
      This Roller Coaster Ride Needs to Stop

      By Ginger38 · Posted

      Thank you for your kind words and encouragement. This has been the most difficult and confusing journey to date for me, and it has been going on since 2015/2016. The last dietitian I met with works with a lot of celiac patients, so I was excited, but she just thought I should be able to eat gluten free (whatever that may be) stay in a carb count and my diabetes would not be affected. WRONG. I have tried this several times since I crossed over to full blown diabetes, because I get so sick eating gluten that I end up getting frustrated and go back to gluten free to get some relief. I have a continuous glucose monitor so it is easy to see how my body and glucose are reacting to foods. Unfortunately my suspicions are correct. When I eat gluten-free foods -like Schar breads or rolls, or the crackers, including when I stay in my carb limit,  my sugar spikes and just sits there.. .it won;t even come back down for hours. So in the end it drives my overall glucose and A1C up. I can't really even eat oats or things like that. Cereal is very iffy. Gluten free pizzas, gluten free nuggets, and things like that majorly spike my sugar as well, again, even when staying in my carb limits. I already feel so limited on foods because of the diabetes so of course, when medical people and family and friends are like just go eat gluten, I have been like oh okay - maybe it is all in my head and hey its way cheaper to eat gluten and tastes wayyy better...and then I end up right back where I am today,. MISERABLE, just laying around in pain, spending all day in the bathroom, having accidents related to diarrhea, constant tremors, heart rate issues, chest pain etc. and I forgot about these terrible painful canker sores in my mouth right now, I can't even hardly eat or drink or swallow they hurt so bad.  Not being able to feel like I can eat gluten free is extremely frustrating. I had some great recipes and substitutes for things, and was at a decent place with all that, until the diabetes went crazy out of control, so gluten-free living seems to not be an option for me. However, eating gluten when I truly still believe I am celiac -just misdiagnosed- does NOT seem like a wise idea. I am honestly scared  I am going to get deathly ill from all this or something. I even asked my GI doctor, more like begged, if he would please just label me as celiac and tell me I was for sure (like he did before) so I could get the support I truly need. No such luck. He just keeps saying but your tests were okay 🙄 My family went to an arcade and pizza/pasta buffet yesterday - obviously I didn't want to miss out spending time with my family and my mom spent money paying for my meal/buffet - and I was hungry, so of course I ended up eating pizza and pasta that was not gluten-free, because they don't offer any gluten-free options, and then my brother and others want to ask can you eat that or are you supposed to, and I am like well no, and I will definitely pay for it. They think it is hilarious when I say things and then make comments, like how it is so fun to go out with me especially places like that because I am not supposed to eat but I just do it anyway and say I will pay for it 😥 just seems everywhere I turn it is pointless and I have no support 
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      Just like you cannot be a little pregnant, you cannot be a little Celiac.  Here is an article I found that explains what the numbers mean. Are You Confused About Your Celiac Disease Lab Results? Here is another article about the non traditional symptoms of Celiac Disease. What Are the Symptoms of Celiac Disease? I've been taking 10,000 IU vitamin D3 since 2015.  My blood tests every 3 months for 25(OH)D have never gone above 93 ng/ml, even in the Florida summer.  70 - 100 is the body's natural homeostasis level. Surge of information on benefits of vitamin D "“When combined with supplemental magnesium, vitamin D repletion has dramatically changed my practice,” said McCarthy ... “There are now very few patients with infections, and asthmatics who are coming off medications are staying off of them. ... A lifeguard study that found vitamin D levels in the 70 ng/mL range up to 100 ng/mL (nature’s level) were associated with no adverse effects; ... Colon cancer data showing a reduction in the incidence of new cancer (linear) with postulated 0 point at 75 ng/mL;
    • somethinglikeolivia
      Am I celiac or not?

      By somethinglikeolivia · Posted

      Interesting! Recent labs I had done did show that I was low in Vitamin D so I just began supplementing, it’s hard to tell so soon but it does seem to have a positive affect! Thanks for the input!
    • Scott Adams
      This Roller Coaster Ride Needs to Stop

      By Scott Adams · Posted

      Your frustration and exhaustion are completely valid, and many in the celiac and gluten-sensitive community can relate to the overwhelming confusion you're experiencing. You’re being pulled in different directions by medical advice that seems contradictory, and it’s heartbreaking that your efforts to feel better are met with so many setbacks. Positive TTG IgA antibodies are not something to brush off, especially when combined with your long list of debilitating symptoms that clearly worsen with gluten exposure. A negative biopsy does not necessarily mean you don’t have celiac disease—it’s entirely possible that damage was missed, especially since biopsy results can vary depending on where the samples are taken and how many are collected. It’s also true that celiac disease exists on a spectrum, and many people have serious symptoms and immune responses without yet showing classic biopsy damage. Managing diabetes alongside suspected or confirmed celiac disease is incredibly tricky, especially when healthcare providers don’t work as a team to support your whole health. You shouldn’t be forced to choose between controlling your blood sugar or protecting your gut and immune system. A well-planned gluten-free diet can be both nourishing and diabetes-friendly, especially with guidance from a knowledgeable dietitian who understands both conditions. It’s also deeply concerning that your symptoms—neurological issues, severe fatigue, GI distress, rashes, and more—are being dismissed. You’re not just describing discomfort; you’re describing a level of illness that’s life-altering, and your instincts that something is seriously wrong are absolutely worth trusting. You know your body better than anyone. You deserve a team that listens, believes you, and helps you build a realistic, sustainable path to healing. Whether it’s celiac disease, non-celiac gluten sensitivity, or something else, you have every right to go gluten-free permanently if that’s what makes you feel functional. Many people never get a “perfect” diagnosis but reclaim their health by honoring their own experience and choosing a path of least harm. You are not crazy, you are not weak, and you are not alone. Keep advocating for yourself—you and your daughter both deserve a healthier, more stable life.
    • Wheatwacked
      Am I celiac or not?

      By Wheatwacked · Posted

      While a definitive causal link remains unclear, vitamin D's known role in immune modulation and intestinal barrier integrity suggests that it plays a significant role in the development and progression of celiac disease.  Reduced 25(OH)D levels are associated with celiac disease.  In celiac disease, gluten can damage these tight junctions, and vitamin D may play a protective role in this context. 
×
×
  • Create New...