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

How Accurate Is An Upper Endoscopy?

HelpinOhio

Recommended Posts

HelpinOhio Explorer
HelpinOhio
Posted

How accurate is an upper endoscopy in diagnosing Celiac Disease?

Im a 18 year old male, my mom was diagnosed with Celiac Disease through an upper endoscopy about 30 years ago.

Ive been eating gluten regularly for about 8 months now, and about 6 weeks ago I added 2-4 more pieces of bread per day. Im scheduled to have an upper endoscopy in about 2 weeks. I had the blood tests/labs for Celiac Disease done about 2 weeks ago and got the results back yesterday, which supposedly came back negative. This wasnt much of a surprise because it is most likely false negative. I asked for a copy of my results just in case.

About how accurate would the upper endoscopy be for me?

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

Celiac.com Sponsor (A8-M):


SGWhiskers Collaborator
SGWhiskers
Posted

Since you have been eating gluten, if you have Celiac, the endoscopy will pick it up. (Assuming they take enough samples and the pathologist knows what he/she is doing). Since your blood tests were negative, there is a pretty good chance that any symptoms you have are caused by another disease. Continuing with the endoscopy will allow the docs to look for other diseases as well. If you have GI symptoms and with a family history of autoimmune disease, you may want to look into Crohn's and Colitis if your endoscopy comes back negative.

good luck

krystal Rookie
krystal
Posted
Since you have been eating gluten, if you have Celiac, the endoscopy will pick it up. (Assuming they take enough samples and the pathologist knows what he/she is doing). Since your blood tests were negative, there is a pretty good chance that any symptoms you have are caused by another disease. Continuing with the endoscopy will allow the docs to look for other diseases as well. If you have GI symptoms and with a family history of autoimmune disease, you may want to look into Crohn's and Colitis if your endoscopy comes back negative.

good luck

Any time I have heard anyone weigh in on this subject, it is that the tests have a pretty high "False Negative" rate. Your damage has to be pretty good in order for them to biopsy an area that is affected.

However, I'll let more knowledgeable sources weigh in here.

ravenwoodglass Mentor
ravenwoodglass
Posted

Even on a full gluten diet with symptoms there is a chance of a false negative. You have 22 ft of small intestine and if the damage is patchy it can be missed. After all testing is done that you choose to have done then do the diet strictly for a couple of months and see if it helps even if the results are negative. Also get an actual copy of the labs into your hands. You have a legal right to them and you can just call the office and ask to pick them up or have them sent to you. There are times when the result will be a low positive and a doctor will call the result negative.

HelpinOhio Explorer
HelpinOhio
Posted
  • Author
Since you have been eating gluten, if you have Celiac, the endoscopy will pick it up. (Assuming they take enough samples and the pathologist knows what he/she is doing). Since your blood tests were negative, there is a pretty good chance that any symptoms you have are caused by another disease. Continuing with the endoscopy will allow the docs to look for other diseases as well. If you have GI symptoms and with a family history of autoimmune disease, you may want to look into Crohn's and Colitis if your endoscopy comes back negative.

good luck

You should read some of the other threads I have made explaining my whole experience and all that I had to go through for years.

If I dont have Celiac Disease, Im pretty much all the way back at square 1 after having symptoms since before my 12th birthday (over 6 years now) and Ive been researching diseases for the past 1 1/2 years.

I do have GI symptoms, but its more autoimmune serious symptoms for me. I have a lot of trademarks of Celiac Disease. I have lost a lot of tooth enamel despite brushing habits that a dentist would be proud of, aching joints, muscle cramps, bloating, severe fatigue, just all over the board. Learning about Celiac Disease and then learning my mom had it, I thought I had a breakthrough because the more advanced symptoms (not just D) sounded exactly what I had. I had been searching for a long time after having my childhood and life ruined for nearly 7 years. I dont know what Ill do if its not Celiac Disease. The next disease that matched most my symptoms was Lupus, and I just got a ANA (anti-nuclear antibody) blood test and it came back normal. Ive also been tested for diabetes, thyroid, rheumatoid, other autoimmune diseases, chest x ray, abdomen x ray, ekg, 24 hr holtor monitor, other heart tests, and many other tests over the years. The only thing that has come out of it is constipation (which was already obvious), and low vitamin D, which Ive been taking tablets for 6 months now with no improvement physically. I just dont know...Im hoping its Celiac though. Whatever happens, Im going gluten free ASAP.

ravenwoodglass Mentor
ravenwoodglass
Posted
Whatever happens, Im going gluten free ASAP.

I am glad to hear that. Sometimes our bodies give us answers the tests can't. I hope you get some relief soon.

Lisa Mentor
Lisa
Posted

The gluten free diet can certain give you some indicators that gluten intolerance or Celiac can be your issue. But, with years of digestive issues, it might be a good idea to get a endoscopy and colonoscopy to rule out other, more serious issues.

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Has your doctor been clear about what the endoscopy is being done to diagnose?

Depending on your symptoms there should be a list. Doctors do tend to keep patients in the dark, so they will not panic.

Even "healthy" looking tissue needs to be biopsied. i.e. the presence of eosinophils can be imbedded into the tissue and not visible to the scope. ~Eosinophils are white blood cells associated with allergic reaction.

I do believe on some level you already know gluten is causing an issue for you. Your body's reaction to the gluten free diet (after testing is done) may be the best response to prove the point.

Lisa16 Collaborator
Lisa16
Posted

I had a false negative biopsy and it set me back about 8 years (meaning it took eight more years or so to get diagnosed.) The doctors found irritation, but no flattening and they told me it could not be celiac. The never said a word about going gluten-free, even though the bloodwork was positive.

I was diagnosed 8 years later through DH.

If you feel better being gluten-free, then by all means eat that way. Please don't rely on the biopsy by itself.

Archived

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

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


  • Member Statistics

    • Total Members
      131,075
    • Most Online (within 30 mins)
      7,748
    Annevt
    Newest Member
    Annevt
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Blood results

      By trents · Posted

      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Oral thrush question

      By knitty kitty · Posted

      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Nutrient deficiencies despite normal MARSH and strict gluten-free diet

      By Scott Adams · Posted

      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Blood results

      By knitty kitty · Posted

      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
    • Heatherisle
      Blood results

      By Heatherisle · Posted

      That was just the visual report, so need to wait for confirmation or otherwise from the results. They did take a biopsy from the upper end of the duodenum(D1). D2 looked unremarkable on the camera. Just wish we didn’t have to wait so long for the results as she’s naturally a very anxious person. But thanks so much for taking the time to answer me
×
×
  • Create New...