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

Frustrating endoscopy!

Sarahp5

Recommended Posts

Sarahp5 Newbie
Sarahp5
Posted

Hello! I had. My endoscopy today and the GI wouldn't do blood work because she said that the biopsy would tell more than the bloodwork. I was fine with that , but I have been so very sick for the past two weeks I asked her if she'd be able to tell me anything that she sees during the endoscopy. 

When I came out of the sedation she said, "everything looked ok" and explained that there was less of a chance that I am positive because of what she saw. I am so devastated. I know I have it and it's ruining my life. 

Has anyone else had a seemingly normal exam during endo. But the biopsy came back positive? 

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

Celiac.com Sponsor (A8-M):


sddave Enthusiast
sddave
Posted

Your GI doc might of been looking for a flattened intestine during the endoscopy.   And didn't see any flattened areas.   I don't know what the percentages are, but a flattened intestine usually means villi has been damaged from eating gluten if your celiac.

Victoria1234 Experienced
Victoria1234
Posted

I've noticed lots of people on this board have had ok looking intestines, but the biopsy came back positive for damage. How many samples were taken? Ask to see the report.

cyclinglady Grand Master
cyclinglady
Posted

Yes!  My GI told me (and I got the report) that everything looked good.  No damage that he could see, but he wisely said that we would have to wait for the pathologist's report (got that report too).   My celiac blood panel was mildly positive which means in my case that I just had one positive on the panel and it was not sky high.   I had moderate to severe intestinal damage (Marsh Stage IIIB).  

Even if you have flattened or damaged villi, there are almost 10 other diseases that can cause intestinal damage.  By ordering the blood test, it can confirm celiac disease and not Crohn's or a parasite. 

Why wouldn't your GI order a celiac blood test?  Even the simple screening is less than $100!  Better yet, why wouldn't your GI formal normal protocol as recommended by the GI Association?  I would strongly recommend a new GI.  Who knows what this doctor might miss?  

But....in her defense.  You have only been sick for two weeks?  We do not know your whole story, but since 1in 133 people have celiac disease (like 80% of those are walking around undiagnosed), it is not unreasonable to order a celiac blood test.  It is way cheaper than an endoscopy!!

Keep eating gluten.  Did you know your GP/PCP can order the blood test too?  

Advocate for your health.  Document and get copies of everything.  It is your right!  (You might need it for a lawsuit.....but that is not likely).   Bet if you put requests in writing with your concerns referencing published studies and GI diagnostic procedures, she would change her tune.  Be nice though!  

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

frieze Community Regular
frieze
Posted

my usual tune, follow the money...

sddave Enthusiast
sddave
Posted

I would now be treated for IBS if I didn't question on my followup after being told I had IBS "what about my flattened intestine from the endoscopy".   And my GI doc who did the endoscopy ordered another scan of my biopsy.   Then from that result decided to do a blood test for gluten antibodies.   They did a bunch of blood tests right after my endoscopy.   I have NO idea why they didn't do a test for gluten antibody then.

cyclinglady Grand Master
cyclinglady
Posted

Frieze...you at so right!  

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

Celiac.com Sponsor (A8-M):


GF-Cheetah Cub Contributor
GF-Cheetah Cub
Posted

" Has anyone else had a seemingly normal exam during endo. But the biopsy came back positive?  "

Yes.  Right after my daughter's endoscopy, the GI doctor told me that the intestine looked pretty good.  Then two weeks later, they called to tell us that the biopsy results were positive for celiac.

Sarahp5 Newbie
Sarahp5
Posted
  • Author

Thank you all so much! The acute symptoms have been impacting my life in a big way for two weeks. Other symptoms have crept up over the past year or two. I am terrified to eat it again. I can literally barely function. I guess I'll have to wait. I was hoping for confirmation so I can begin handling it instead of still being in the dark. Thank you again.

Archived

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

Go to topic listing

  • 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. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread.
    2. Jane02
      - Jane02 replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores).
    3. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      This sounds very similar to the neuropathic pain I experienced with type two diabetes. Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6. These are vitamins frequently found to be low in people with pre-diabetes and diabetes. Remember that blood tests...
    4. trents
      - trents commented on Amiah's blog entry in Amiah
      1

      Help!!

      Welcome to the celiac.com community, @Amiah! First of all, you would do well to post your question in one of the appropriate community forums rather than in a blog. It will get more attention that way. Now as to your question, there are some other things that can cause elevated igg antibodies besides celiac disease. Various infections, mostly. For...
    5. Scott Adams
      - Scott Adams replied to HectorConvector's topic in Related Issues & Disorders
      314

      Terrible Neurological Symptoms

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal....
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,581
    • Most Online (within 30 mins)
      7,748
    MaggieSc
    Newest Member
    MaggieSc
    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

    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry, I just realized how old this thread is and only read the initial post from 2021. I'll have to catch up on the comments in this thread. 
    • Jane02
      Terrible Neurological Symptoms

      By Jane02 · Posted

      Sorry to hear you're going through such a hard time. It would be worth looking into MCAS/histamine issues and also Long Covid. Perhaps there is something occurring in addition to celiac disease. It would be worth ruling out micronutrient deficiencies such as the b vitamins (B12, folate, B1, etc), vit D, and ferritin (iron stores). 
    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      This sounds very similar to the neuropathic pain I experienced with type two diabetes.  Gloves and boots pattern of neuropathy is common with deficiencies in Cobalamine B12 (especially the pain in the big toe), Niacin B3, and Pyridoxine B6.  These are vitamins frequently found to be low in people with pre-diabetes and diabetes.  Remember that blood tests for vitamin levels is terribly inaccurate.  You can have vitamin deficiencies before there are any changes in blood levels.  You can have "normal" serum levels, but be deficient inside organs and tissues where the vitamins are actually utilized.  The blood is a transportation system, moving vitamins absorbed in the intestines to organs and tissues.  Just because there's trucks on the highway doesn't mean that the warehouses are full.  The body will drain organs and tissues of their stored vitamins and send them via the bloodstream to important organs like the brain and heart.  Meanwhile, the organs and tissues are depleted and function less well.   Eating a diet high in simple carbohydrates can spike blood sugar after meals.  Eating a diet high in carbohydrates consistently over time can cause worsening of symptoms.  Thiamine and other B vitamins like Niacin B3 and Pyridoxine B6, (which I noticed you are not supplementing), are needed to turn carbs, proteins and fats into energy for the body to use.  Alcohol consumption can lower blood sugar levels, and hence, alleviate the neuropathic pain.  Alcohol destroys many B vitamins, especially Pyridoxine, Thiamine and Niacin.  With alcohol consumption, blood glucose is turned into fat, stored in the liver or abdomen, then burned for fuel, thus lowering blood glucose levels.  With the cessation of alcohol and continued high carb diet, the blood glucose levels rise again over time, resulting in worsening neuropathy.   Heavy exercise can also further delete B vitamins.  Thiamine and Niacin work in balance with each other.  Sort of like a teeter-totter, thiamine is used to produce energy and Niacin is then used to reset the cycle for thiamine one used again to produce energy.  If there's no Niacin, then the energy production cycle can't reset.  Niacin is important in regulating electrolytes for nerve impulse conduction.  Electrolyte imbalance can cause neuropathic pain.   Talk to your doctors about testing for Type Two diabetes or pre-diabetes beyond an A1C test since alcohol consumption can lower A1C giving inaccurate results. Talk to your doctors about supplementing with ALL eight B vitamins, and correcting deficiencies in Pyridoxine, Niacin, and B12.  Hope this helps! Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ P. S.  Get checked for Vitamin C deficiency, aka Scurvy.  People with Diabetes and those who consume alcohol are often low in Vitamin C which can contribute to peripheral neuropathy.
    • Scott Adams
      Terrible Neurological Symptoms

      By Scott Adams · Posted

      I’m really sorry you’re dealing with this—chronic neuropathic or nociplastic pain can be incredibly frustrating, especially when testing shows no nerve damage. It’s important to clarify for readers that this type of central sensitization pain is not the same thing as ongoing gluten exposure, particularly when labs, biopsy, and nutritional status are normal. A stocking/glove pattern with normal nerve density points toward a pain-processing disorder rather than active celiac-related injury. Alcohol temporarily dampening symptoms likely reflects its central nervous system depressant effects, not treatment of an underlying gluten issue—and high-dose alcohol is dangerous and not a safe or sustainable strategy. Seeing a pain specialist is absolutely the right next step, and we encourage members to work closely with neurology and pain management rather than assuming hidden gluten exposure when objective testing does not support it.
    • Scott Adams
      Reverse Osmosis (RO) Water

      By Scott Adams · Posted

      There is no credible scientific evidence that standard water filters contain gluten or pose a gluten exposure risk. Gluten is a food protein from wheat, barley, or rye—it is not used in activated carbon filtration in any meaningful way, and refrigerator or pitcher filters are not designed with food-based binders that would leach gluten into water. AI-generated search summaries are not authoritative sources, and they often speculate without documentation. Major manufacturers design filters for water purification, not food processing, and gluten contamination from a water filter would be extraordinarily unlikely. For people with celiac disease, properly functioning municipal, bottled, filtered, or distilled water is considered gluten-free.
×
×
  • 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.