Jump to content

  • 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

Had Endoscopy On Thursday...

slightlysilly

Recommended Posts

slightlysilly Newbie
slightlysilly
Posted

Hi all!

This is my first post. I was diagnosed with Crohn's Disease back in November. I was on a low residue diet and meds for Crohn's, but at my last appt with my GI doctor, I told him of some stomach pain I was having so he had me do an endoscopy last Thursday. The endoscopy showed scalloping (?) indicative of Celiac disease but he wanted to do more testing (a gallbladder ultrasound, a genetic test for Celiac, and a pill cam). He said I would need to go on a gluten free diet but AFTER the tests were done. I'm already on a low residue (no fresh fruits, fresh veggies, nuts or fiber)

Anyway, the question is - did anyone's upper GI endoscopy with scallops and inflamation come out with anything OTHER than Celiac? I want to see what my "choices" are here.

Thanks!

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Celiac certainly sounds like the most likely cause. I have no personal knowledge or experience.

ravenwoodglass Mentor
ravenwoodglass
Posted

As far as I know that scalloping is pretty likely to be celiac related, you have a very good doctor. I know the prospect of celiac is daunting but you may find that it also helps your Chrons symptoms. Your doctor is right that you shouldn't start the diet until all celiac related testing is done but when it is finished you should start the diet strictly no matter what the gene tests show. Your in the right place for support and info on what you need to do. Welcome to the board and ask any questions you need to.

slightlysilly Newbie
slightlysilly
Posted
  • Author

Thank you for your response! I looooove my doctor, although the poor guy is getting frustrated with my case because a lot of my meds just aren't working. I kind of want to get the show on the road with the gluten free trial because if that's what is causing the pain... then let's get on it. Alas, I have to wait for the insurance company to give us the green light for more testing... hopefully it will only be a few days until I can start. Until then, it's hard to think the foods I put in my mouth are actually very harmful.

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your response! I looooove my doctor, although the poor guy is getting frustrated with my case because a lot of my meds just aren't working. I kind of want to get the show on the road with the gluten free trial because if that's what is causing the pain... then let's get on it. Alas, I have to wait for the insurance company to give us the green light for more testing... hopefully it will only be a few days until I can start. Until then, it's hard to think the foods I put in my mouth are actually very harmful.

Hopefully you will be able to start soon. Do be sure to check all the meds that you will continue with while you are waiting. Celiac can effect the amount of meds we absorb and some meds like antidepressants many have no effect at all. With antidepressants they are finally realizing that when people don't respond or get worse on them that can be a sign of celiac. I hope the diet helps you and that you are feeling better soon. Do stay in close touch with your doctor as you heal as your med dosages may need to be adjusted and some you may not need anymore.

WW340 Rookie
WW340
Posted

I had scalloping on biopsy, and it was celiac.

There is a high prevalence of celiac disease in crohn's disease. They recently found the genes have a relationship.

Here is a link. Open Original Shared Link

When my doctor tested me for celiac, he also tested me for crohn's. I have the genes for both, but I do not have active crohn's.

slightlysilly Newbie
slightlysilly
Posted
  • Author

Thanks very much for your responses. I CANNOT WAIT until I can get these tests done and get on with it. I am in a lot of Crohn's pain right now and it's getting to the point where I really don't care if I have Celiac and if never eating another ounce of gluten will make me feel better, I'm on it!

I did a little online looking and I see that gluten is even in some of our shampoos... so much to learn!!!

Thanks much though!

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

Celiac.com Sponsor (A8-M):


modiddly16 Enthusiast
modiddly16
Posted

Sorta off your topic but I had an EGD and a colonoscopy on Monday and the "twilight sedation" didn't take. I was awake and conscious throughout the entire process and still sorta wake up with nightmares of the pain it caused. I'd definitely recommend anyone getting the test to ask to be put under for it. As if trying to figure out whats wrong with you isn't traumatizing enough.

Sorry, I just had to vent about it somewhere.

Best of luck!

vegan lisa Rookie
vegan lisa
Posted

Sorta off your topic but I had an EGD and a colonoscopy on Monday and the "twilight sedation" didn't take. I was awake and conscious throughout the entire process and still sorta wake up with nightmares of the pain it caused.

I had the exact same experience! It was horrible, but let me add that this experience is also very, VERY rare. Most patients remember nothing, as though they were asleep. I've been told many patients hardly remember going to the hospital at all for the procedure. Very pleasant for most!

I believe the procedure requires the patient to be able to swallow on command, and so the conscious sedation is needed. I knew going in that my lack of response to the medication was likely (I've had trouble before with other medications) and had the anesthesiologist in the room putting meds in my IV during the procedure so I could be more "out" for parts, but "up" for the parts where I needed to obey commands like "swallow". My new GI is considering a gluten challenge followed by a repeat EGD, and I am NOT happy about either going back on gluten or the EGD.

Sorry to hijack the thread, but I've never "met" anyone else who had this lack of proper response to those meds and I couldn't help but reply!

Lisa

modiddly16 Enthusiast
modiddly16
Posted

I'm glad you did. Its good to know that I'm not some freak who experienced something that no one else has. It was truly a horrible experience but I managed through it and if they figure out whats going on with me, I'll be happy. I'm already a diagnosed celiac, so it was to check for some other things but it was just really a less than awesome experience!

slightlysilly Newbie
slightlysilly
Posted
  • Author

Im so sorry you both had a bad experience! Both my endoscopy and colonoscopy were done under I guess twilight sleep. I remember nothing about either procedure. I mean as far as testing goes, neither was bad.

So sorry to both of you!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,202
    • Most Online (within 30 mins)
      7,748
    Nana Susie
    Newest Member
    Nana Susie
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By Scott Adams · Posted

      Celiac disease is the most likely cause, but here are articles about the other possible causes:    
    • xxnonamexx
      FDA looking for input on Celiac Gluten sensitivity labeling PLEASE READ and submit your suggestions

      By xxnonamexx · Posted

      Please read: https://www.fda.gov/news-events/press-announcements/fda-takes-steps-improve-gluten-ingredient-disclosure-foods?fbclid=IwY2xjawPeXhJleHRuA2FlbQIxMABicmlkETFzaDc3NWRaYzlJOFJ4R0Fic3J0YwZhcHBfaWQQMjIyMDM5MTc4ODIwMDg5MgABHrwuSsw8Be7VNGOrKKWFVbrjmf59SGht05nIALwnjQ0DoGkDDK1doRBDzeeX_aem_GZcRcbhisMTyFUp3YMUU9Q
    • cristiana
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By cristiana · Posted

      Hi @Atl222 As @trents points out, there could be many reasons for this biopsy result.  I am interested to know, is your gastroenterologist concerned?  Also, are your blood tests showing steady improvement over the years? I remember when I had my last biopsy, several years after diagnosis, mine came back with with raised lymphocytes but no villous damage, too! In my own case, my consultant wasn't remotely concerned - in fact, he said I might still get this result even if all I ever did was eat nothing but rice and water.   My coeliac blood tests were still steadily improving, albeit slowly, which was reassuring.
    • trents
      Increased intraepithelial lymphocytes after 10 yrs gluten-free

      By trents · Posted

      Welcome to the celiac.com community, @Atl222! Yes, your increased lymphocytes could be in response to oats or it could possibly be cross contamination from gluten that is getting into your diet from some unexpected source but not enough to damage the villi. And I'm certain that increased lymphocytes can be caused by other things besides celiac disease or gluten/oats exposure. See attachment. But you might try eliminating oats to start with and possibly dairy for a few months and then seek another endoscopy/biopsy to see if there was a reduction in lymphocyte counts. 
    • Scott Adams
      Brown Rice Vinegar (organic) from Eden Foods is likely gluten free

      By Scott Adams · Posted

      This is a solid, well-reasoned approach. You’re right that “koji” by itself doesn’t indicate gluten status, and the risk really does come down to which grain is used to culture it. The fact that you directly contacted Eden Foods and received a clear statement that their koji is made from rice only, with no wheat or barley, is meaningful due diligence—especially since Eden has a long-standing reputation for transparency. While the lack of gluten labeling can understandably give pause, manufacturer confirmation like this is often what people rely on for traditionally fermented products. As always, trusting your body after trying it is reasonable, but based on the information you gathered, your conclusion makes sense.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.