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

Endoscopy/biopsy

noobasaur

Recommended Posts

noobasaur Newbie
noobasaur
Posted

okay so I've had a variety of symptoms spanning the past 3 years. I'm 21 and female.

I've only recently started a gluten-free diet, and am waiting to see if my health improves.

my doctors have been absolutely 0 help in determining what's wrong. I say 3 years because that's when the symptoms became more severe; I developed lactose intolerance, was throwing up more frequently, and just had overall horrible abdominal pain. my primary physician diagnosed me, over the next three months, with ovarian cysts (via an ultrasound), broken and bruised ribs (cause undetermined, no trauma), and no real cause for the vomiting and stomach pain.

I was prescribed various painkillers and steroids, but they didn't help. fast forward two and a half years. this past january I decided to see a gastroenterologist who scheduled an endoscopy.

this is where my question comes in:

there has never been a mention of celiac out of any of my doctors' mouths. I've been told ulcers, Crohn's/other types of colitis, endometreosis, general acid reflux, and many things along those lines.

they have done bloodwork, and said "it was fine". is celiac's an automatic test for these types of symptoms?

they did an endoscopy. the results were: no ulcers. esophagitis presumably (not definitely) from GERD, and damaged intestines. they took a biopsy and told me there was "no infection", but didn't mention anything about celiac or gluten intolerance.

would I have to bring it up or is this something they automatically check for? is it possible that I have a gluten intolerance and/or celiac despite the "no infection" result of the biopsy?

I browsed the site and didn't find anything that quite answered my question, I apologize if this is redundant.

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

Celiac.com Sponsor (A8-M):


WW340 Rookie
WW340
Posted

Just because you have had a lot of tests, including endoscopy, does not mean your doctor has tested for celiac. Generally, they test for that only if they have some suspicion you may have the disease. Some doctors will be very thorough and test during routine workup, but most only do it if it is something they believe you may have.

If the doctor found some suspicious areas in the small intestine, he might have biopsied those. You had a biopsy which showed no infection, which was probably from the stomach looking for Hpylori. This doesn't mean they took biopsies of the small intestine where celiac is found.

It would be best to ask the doctor if he did the celiac blood test, or took biopsies to look for celiac. If he says yes to any of those, I would ask to see the actual results.

You say in the results that you had damaged intestines, where in the intestines and what kind of damage did you have?

What did he say was causing this damage?

noobasaur Newbie
noobasaur
Posted
  • Author
You say in the results that you had damaged intestines, where in the intestines and what kind of damage did you have?

What did he say was causing this damage?

Thanks for the response.

He did not specifically say what caused it, but I was prescribed Nexium this time around (which actually made me worse and unable to ingest anything at all).. my impression was that he was blaming it all on GERD. he said there was some erosion on the intestines.

WW340 Rookie
WW340
Posted

Usually, nexium is used to treat GERD, which occurs in the upper gastrointestinal tract. Your doctor may be referring to damage to the duodenum, which could be caused by GERD. Since celiac and crohn's can also cause damage to the small intestine, it would be good to know for sure that those have been ruled out.

I would suggest that you talk to your doctor. Ask him if he has tested you for celiac disease, and what does he think is causing the intestinal damage, and where exactly is the damage.

These are all things that would be good for you to know, and he should not mind answering.

ravenwoodglass Mentor
ravenwoodglass
Posted

I agree stongly with the previous responses. If your doctor was not looking for celiac he would not find it. In addition I think the broken ribs really need to be addressed. There was a reason for that. It should be found. At the very least they should be evaluating you for osteoporosis. I would ask for a referral to an bone specialist. Also do not go gluten free until all the testing YOU want to have for celiac is done. If you do you run a higher risk of a false negative and that risk is high enough even on a full gluten diet.

noobasaur Newbie
noobasaur
Posted
  • Author
I agree stongly with the previous responses. If your doctor was not looking for celiac he would not find it. In addition I think the broken ribs really need to be addressed. There was a reason for that. It should be found. At the very least they should be evaluating you for osteoporosis. I would ask for a referral to an bone specialist. Also do not go gluten free until all the testing YOU want to have for celiac is done. If you do you run a higher risk of a false negative and that risk is high enough even on a full gluten diet.

I scheduled an appointment for this Tuesday for bloodwork to be done. is there anything else I should ask about? I'm worried that he will brush off my concerns about osteoporosis because I haven't had any other problems since the ribs. every time I ask him about something in particular, he will say, "well that's probably not it. the risk is low", etc.

so. for the next week I am not to eat gluten free, correct?

thanks for the help so far.

ravenwoodglass Mentor
ravenwoodglass
Posted
I scheduled an appointment for this Tuesday for bloodwork to be done. is there anything else I should ask about? I'm worried that he will brush off my concerns about osteoporosis because I haven't had any other problems since the ribs. every time I ask him about something in particular, he will say, "well that's probably not it. the risk is low", etc.

so. for the next week I am not to eat gluten free, correct?

thanks for the help so far.

If the bloodwork you are having done is for celiac then please stay on gluten. I might also suggest with a due respect for your present doctor that you see if you can find one who listens a bit better. There are many things that folks suffer from that are 'low risk' but that doesn't mean that they may not be something that shouldn't be ruled out.

With the testing for celiac being as unreliable as it is you should do a dietary trial after all your testing is done.

IMHO there is no reason not to at least do a bone scan to check for osteoporosis. If the breaks were healed long ago they may have been from something that happened when you were too young to remember. Do any family members recall something that may have occured?

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

Celiac.com Sponsor (A8-M):


noobasaur Newbie
noobasaur
Posted
  • Author

I was tested today, but my doctor said he wants me to have a CCK-HIDA scan of my gall bladder to see if it's not functioning properly. he said he'd be willing to bet on the fact that it isn't celiac, but obliged per my insistence of being tested. I'll find out friday.

I'm going gluten-free regardless of the test results. from what I've gathered, false negatives are extremely common, yes?

Archived

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

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


  • Member Statistics

    • Total Members
      128,090
    • Most Online (within 30 mins)
      7,748
    Kerischultz
    Newest Member
    Kerischultz
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.6k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Kiwifruit
      Years of testing - no real answers

      By Kiwifruit · Posted

      Thank you! 
    • trents
      Years of testing - no real answers

      By trents · Posted

      Thanks for following up with us on the results. This might be helpful to you now:  
    • Kiwifruit
      Years of testing - no real answers

      By Kiwifruit · Posted

      Hi I just wanted to update you all and let you know that I finally have my diagnosis. 2 weeks ago I had my third gastroscopy and the biopsy confirmed the damage. Thank you for giving me the information I needed to advocate for myself when I a was a feeling so lost!
    • Scott Adams
      Celiac Disease and Mild Chronic Gastritis

      By Scott Adams · Posted

      I agree that the gastritis may go away after you've been on a gluten-free diet for a while. If you are concerned, it might make sense for you to do a follow up biopsy after  a year or so on a gluten-free diet. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):    
    • Scott Adams
      Testing for celiac

      By Scott Adams · Posted

      Getting tested for celiac disease is a valid concern, especially given your history of microscopic colitis and the potential risks associated with undiagnosed celiac disease, such as cross-contamination, nutrient malabsorption, and increased cancer risk. Since you’ve been gluten-free for years, reintroducing gluten for the standard celiac blood tests or endoscopy would be challenging, as it requires consuming gluten for several weeks to months, which could worsen your symptoms and disrupt your daily life. Gene testing (HLA-DQ2 and HLA-DQ8) through a lab like EnteroLab could be a helpful first step. While these genes are present in nearly all celiac patients, having them doesn’t confirm celiac disease—it only indicates genetic susceptibility. If you don’t have these genes, celiac disease is highly unlikely, which could provide some peace of mind. However, if you do have the genes, it doesn’t confirm celiac disease but suggests further testing might be warranted if you’re willing to undergo a gluten challenge. Another option is to discuss with your doctor whether a follow-up endoscopy or other non-invasive tests (like stool tests for gluten antibodies) could provide insights without requiring a gluten challenge. While a formal celiac diagnosis can be important for ensuring strict dietary adherence, access to gluten-free options in hospitals, and monitoring for complications, it’s also worth weighing the risks and benefits of reintroducing gluten. If you’re already strictly gluten-free and managing your symptoms well, the urgency of a formal diagnosis may depend on your personal health goals and concerns. Consulting a gastroenterologist familiar with celiac disease and Microscopic Colitis can help guide your decision.
×
×
  • Create New...