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

Negative For Celiac, What Else Could It Be?

kaseydylan

Recommended Posts

kaseydylan Newbie
kaseydylan
Posted

I had a colonoscopy a few months ago, they noticed swelling in the small intestine. Today I had an endoscopy and he said no evidence of celiac. He officially diagnosed me with GERD and did a biopsy of my stomach (swollen) and my esophagus (swollen). He gave me paperwork on gastritis and esophogitis. Big whop. This still doesn't explain my diarrhea. It explains some of my symptoms: nausea, vomiting after meals, etc but not my chronic diarrhea! I'm beginning to get frustrated. I trust my doc, and he seems genuinely confused as well. I've already cut out soda, but according to this paperwork I should be cutting out caffeine and juice! That cuts out everything but water!!

 

I'm going to wait until the biopsy comes back before I go glutten free. At this point, I'm not sure if it's gluten or lactose intolerant. If I have to go either, most of my diet will be cut out. And I did not go gluten free before my procedure, knowing he would have to see damage if it was there.  

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

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

I had a Marsh Stage IIIB intestinal damage based on biopsy. Visually my GI doctor thought I looked okay. He told me to wait for the biopies to come back. He took about six or so biopsy samples as the small intestines is about the size of a tennis court and patches of damged villi are easy to miss.

Here is a link from the University of Chicago's Celiac Website which explains the diagnostic process:

Open Original Shared Link

Did you not get a celiac blood panel test before your endoscopy? It sounds like your GI doctor is not celiac savvy. A second opinion might be wise. I would also recommend getting copies of files (notes and lab results) for your record and to share with other doctors.

kaseydylan Newbie
kaseydylan
Posted
  • Author

Thanks for your quick response. My doctor took 4 samples; I don't know if 4 each or 2 each. He said he is checking for any diseases. 

cyclinglady Grand Master
cyclinglady
Posted

Here is another link about celiac disease and a celiac blood panel:

Open Original Shared Link

It sounds like he skipped the blood panel completely. I would not go gluten free until you get this blood panel. Many things can cause intestinal villi damage besides celiac disease. Be sure to get the complete panel because personally, I tested positive to only one of the blood tests and yet I had severe damage.

Here is the complete panel:

-tTG IgA and tTG IgG

-DGP IgA and DGP IgG

-EMA IgA

-total serum IgA and IgG (control test)

-AGA IGA and AGA IgG - older and less reliable tests largely replace by the DGP tests

-endoscopic biopsy - make sure at least 6 samples are taken

(Source: NVSMOM -- )

Welcome to the forum and let us know how it goes!

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. deanna1ynne
      - deanna1ynne replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Inconclusive results

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear...
    2. Wends
      - Wends replied to Heatherisle's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      30

      Blood results

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also...
    3. Bennyboy1998
      - Bennyboy1998 replied to Ben98's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      Potential celiac need advice

      Yes gene HLADQ2 was positive
    4. Wends
      - Wends replied to deanna1ynne's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Inconclusive results

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwh...
    5. cristiana
      - cristiana replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      63

      How Come Gluten Didnt Bother Me In Italy

      @Gigi2025 Thank you for your interesting post. Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you - they will eat normal wheat baguette there without issue, for example. His theory was he thought it might be to do with the locally sourced wheat being different...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,700
    • Most Online (within 30 mins)
      7,748
    RelievedP
    Newest Member
    RelievedP
    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

    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      The first negative biopsy in 2021 just said "no pathological change" for all the samples, and the second one in 2022 said "Duodenal mucosa with mild reactive change (focal foveolar metaplasia) and preserved villous architecture." So I think Marsh score 0 in both cases, though it's not actually written in the pathology reports. I'm really hoping to get a clear positive result this time, just for her sake.  
    • Wends
      Blood results

      By Wends · Posted

      Hopefully the biopsy gives a conclusive and correct diagnosis for your daughter. Im in the UK and have been in the situation a few years ago of trying to rule celiac in or out after inconclusive results. Many symptoms pointing to it including the classic symptoms and weight loss and folate and iron deficiency. You have to play a waiting game. I also had the label of IBS and likely food allergy. Genetic test showed low risk for celiac but not no risk. It sounds like the Gastroenterologist is on it and hopefully will diagnose what it is correctly. Food hypersensitivity (allergy) can also cause similar symptoms and inflammation as well as mimicking IBS. Milk / dairy and wheat (cereal grains) being the biggest culprits. The “oesophagitis” and “gastritis” you mentioned can be caused by another gastrointestinal disorder called “eosinophilic gastrointestinal disorders”. These are named depending on which part of the gastrointestinal tract is affected. For example eosinophilic oesophagitis, eosinophilic gastritis, eosinophilic gastroenteritis, and more rare eosinophilic colitis. They are antigen (allergen) driven. When the blood test measuring anti-ttg antibodies is positive in absence of a positive ema test - which is more specific to celiac, this can also suggest food hypersensitivity (allergy). Usually delayed type allergy similar to celiac but not autoimmune if that makes sense. In this case the ttg antibodies are transient. Which happens. I’ve first hand experience. For info, evidence of villous atrophy too can be caused by food hypersensitivity. Not just by celiac disease. In Egid disorders the six food elimination diet, under a dietitian and gastroenterologist care, is the dietary protocol to figure out the culprit or culprits. Sometimes only two food elimination diet is used at first. The number one culprit is milk protein / dairy. Followed by wheat, eggs, soy, fish and seafood, and nuts. Most are only reactive to one food group or two. Most are only reactive to milk. Hope this is a helpful reply.
    • Bennyboy1998
      Potential celiac need advice

      By Bennyboy1998 · Posted

      Yes gene HLADQ2 was positive 
    • Wends
      Inconclusive results

      By Wends · Posted

      Wow, the system is crazy isn’t it? Maybe switch Doctors if you can. It’s surprising from what you’ve written it seems obvious it’s celiac disease. The “potential” diagnosis means celiac is developing and it basically just hasn’t done enough gut damage to be captured on the biopsy yet, and meet that “criteria” to satisfy the current system! Given the overwhelming evidence already - family history, positive ttg and ema. And your own experience and intuition which counts far more. And the labs being reproduced after gluten elimination and reintroduction- elimination and reintroduction diet is the gold standard too. Shame on the Doc and the system. What was the Marsh score? I’m guessing not 0 if it’s potential celiac. Meaning the autoimmune process has been triggered and started. Your daughter is obviously very healthy and her immune system is putting up a good fight. It can take years for the gut damage to build to a point where there’s overt symptoms and then a conclusive diagnosis, hence why many celiacs receive diagnosis later in life. You can prevent it. See the positive and the gift in that. Hopefully the gluten challenge confirms it, but if it doesn’t maybe get a second opinion?
    • cristiana
      How Come Gluten Didnt Bother Me In Italy

      By cristiana · Posted

      @Gigi2025  Thank you for your interesting post.  Some of what you say chimes with something my gastroenterologist tells me - that he has clients who travel to France and find the same as you  - they will eat normal wheat baguette there without issue, for example.  His theory was he thought it might be to do with the locally sourced wheat being different to our own in the UK? But I have to say my own experience has been quite different. I have been to France twice since my diagnosis, and have been quite ill due to what was then (pre-2019)  poor labelling and cross-contamination issues.  My TTG test following my last visit was elevated - 'proof of the pudding', as we say in the UK!  It was not just a case of eating something like, say, shellfish, that disagreed with me - gluten was clearly an issue. I've also been to Italy to visit family a couple of times since my diagnosis.  I did not want to take any chances so kept to my gluten free diet, but whilst there what I did notice is that coeliacs are very well catered for in Italy, and many brands with the same ingredients in the UK are clearly marked on the front of their packaging that they are 'senza glutine'.  In the UK, you would have to find that information in the small print - or it puts people off buying it, so I am told!  So it seems to me the Italians are very coeliac aware - in fact, all children are, I believe, screened for coeliac disease at the age of 6.  That must mean, I guess, that many Italian coeliacs are actively avoiding gluten because, presumably, if they don't, they will fall ill?        
×
×
  • 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.