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

Very Unexpected Biopsy Today!


Annette723

Recommended Posts

Annette723 Newbie

I have a pituitary tumor and high cortisol but I haven't gained weight, which is very unusual. I have suffered from mostly morning nausea for over a year. I only recently bothered complaining about it to my endocrinologist. He took me off all my meds and checked my gallbladder and liver, then referred me to a gastroenterologist.

I had my appointment last Wednesday and he didn't give me a diagnosis, but prescribed Nexium and told me to cut out caffeine and soda and chocolate, and gave me a sheet on acid reflux. He did bloodwork that day but I didn't pay any attention to what they were testing. And he scheduled me for an endoscopy today.

Before the procedure the nurse told me they would be checking my esophagus, stomach, and duodendum (spelling?)

When I woke up the doctor told me I had a hiatal hernia but everything looked perfect. To stay on the nexium. And he told me he did a biopsy of my small intestine to check for Celiac disease.

Needless to say I've been reading up on Celiac all afternoon. Does it sound like I could have it? Is it possible he got some positive bloodwork back after my appointment and decided to do the biopsy? Or could he have seen something he didn't like when he did the endoscopy?

The only other relevant fact I can provide is that he felt something "unusual" on my lower abdomen, though he said it could just be that he could feel things better since I am thin.

I appreciate any opinions!


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



Celiac.com Sponsor (A8-M):



KaitiUSA Enthusiast

Sounds like a possibility of celiac.

When the nurse told you what they were checking thats what they do with an endoscopy. It sounds like they did what was scheduled. The doctor may have seen something while checking and decided to take some samples to see if they test positive for celiac.

Did you have blood tests for celiac? Or is this the first time it was mentioned to you?

Annette723 Newbie
Sounds like a possibility of celiac.

When the nurse told you what they were checking thats what they do with an endoscopy. It sounds like they did what was scheduled. The doctor may have seen something while checking and decided to take some samples to see if they test positive for celiac.

Did you have blood tests for celiac? Or is this the first time it was mentioned to you?

<{POST_SNAPBACK}>

I'm not sure if they did blood tests for celiac or not. I looked at the blood test order briefly and saw the usual things, cbc, etc. Then there were 3 things I had never heard of before. And yes, today was the first time I've ever heard of Celiac.

Portageegal Newbie

Most good doctors will do a biopsy when they do an endoscopy. Mine wasn't

looking for celiac, but found it. I'm glad he did the biopsy or I would never have

known and would have done more harm to myself by continuing to eat gluten.

mstrain Rookie

Annette:

I had a similar experience - went in for endoscopy to check for acid reflux the doctor suspected I had due to chest pain. While scoping me he noticed that my duodenum was red and inflamed. He biopsied it and it turned out to be a Marsh 1 lesion (still not really sure what that means :unsure: ) and semi-diagnosed me with Celiac. It was then when he ordered the blood test. I'm thinking your doctor wasn't planning on biopsing your intestine but saw signs that he needed to.

Annette723 Newbie
Annette:

I had a similar experience - went in for endoscopy to check for acid reflux the doctor suspected I had due to chest pain.  While scoping me he noticed that my duodenum was red and inflamed.  He biopsied it and it turned out to be a Marsh 1 lesion (still not really sure what that means :unsure: ) and semi-diagnosed me with Celiac.  It was then when he ordered the blood test.  I'm thinking your doctor wasn't planning on biopsing your intestine but saw signs that he needed to.

<{POST_SNAPBACK}>

Yeah, thats what I think. It will be hard I'm sure if I have it, but I've been looking for answers for a long time. My mom feels differently (and maybe I should trust her since I can't remember a thing he said!) She felt like he was conveying to her that he had not been successful at all at finding a cause for my nausea, but that we would move on to the gastric emptying test. She is guessing he did the biopsy just because when he saw I had no ulcers or acid reflux damage he decided to dig a little deeper while he was in there just to rule it out.

I guess only time will tell! Thanks to everyone who responded, this is a very supportive forum!

SueC Explorer

A GI doc can sometimes tell by looking at the folds in your small bowel if it is celiac. My doc was pretty sure I had it without the biopsy results. Maybe he thought it looked suspicious and took some samples.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      46

      Supplements for those Diagnosed with Celiac Disease

    2. - trents replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      Is it gluten?

    3. - RMJ replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    4. - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      nothing has changed

    5. - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748

    Muhammad
    Newest Member
    Muhammad
    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

    • trents
      You may also need to supplement with B12 as this vitamin is also involved in iron assimilation and is often deficient in long-term undiagnosed celiac disease.
    • trents
      @par18, no, Scott's use of the term "false negative" is intentional and appropriate. The "total IGA" test is not a test used to diagnose celiac disease per se. The IGA immune spectrum response encompasses more than just celiac disease. So, "total IGA" refers to the whole pie, not just the celiac response part of it. But if the whole pie is deficient, the spectrum of components making it up will likely be also, including the celiac disease response spectrum. In other words, IGA deficiency may produce a tTG-IGA score that is negative that might have been positive had there not been IGA deficiency. So, the tTG-IGA negative score may be "false", i.e, inaccurate, aka, not to be trusted.
    • RMJ
      This may be the problem. Every time you eat gluten it is like giving a booster shot to your immune system, telling it to react and produce antibodies again.
    • asaT
      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
×
×
  • 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.