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

At a Loss

mnburis

Recommended Posts

mnburis Apprentice
mnburis
Posted

My blood test shows no evidence of Celiac ( I don't have the actual numbers. I'll get that Monday). But today I get a call from my Dr that my stool study is back and it still shows inflammation ( the one last year did too but the GI said it didn't mean anything). 

 

So my insides are inflamed but no one can figure out why. 

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

Celiac.com Sponsor (A8-M):


Feeneyja Collaborator
Feeneyja
Posted

Non Celiac Gluten/Wheat Sensitivity also causes cell damage and immune response. It's just not autoimmune (as far as we know).  This is research from 2016, so very recent and not all docs are up on it.  But it can still be gluten (or other parts of wheat) even if you are not celiac positive.   And I don't have a stat for it, but there are certainly people who react to gluten, test negative, but over time eventually test positive.  The celiac test only rules out celiac NOW, not in the future.

Open Original Shared Link

There are also other things that can cause inflammation:  SIBO (small intestine bacterial overgrowth), IBS, IBD, parasites, candida, other food intolerances.  Have these been ruled out?

Have you attempted a gluten free diet and challenge and know it's wheat/gluten related?  

mnburis Apprentice
mnburis
Posted
  • Author

I have not done gluten-free yet because I want all the testing done first. 

 

Everything ive read says IBS will not show inflammation in the stool. Parasites and candida have been ruled out. SIBO has not been tested for. 

 

I do have a first blood blood cousin with Crohn's disease. 

TexasJen Collaborator
TexasJen
Posted

Do you know what stool test you had specifically that showed "inflammation"? 

mnburis Apprentice
mnburis
Posted
  • Author
58 minutes ago, TexasJen said:

Do you know what stool test you had specifically that showed "inflammation"? 

I believe it was Calprotectin ( I'm sure I'm spelling that all wrong) and Lactoferrin. Same exact stool test results I had a year ago and everyone ignored and acted like I was crazy 

cyclinglady Grand Master
cyclinglady
Posted

The first test, Calrotectin, is useful for diagnosing Inflammatory Bowel Disease (IBD).     Since your colonoscopy was fine (if I recall), I suppose Ulcerative colitis (one form of IBD) has been ruled out, but that leaves Crohn's.  

I could have sworn my niece had celiac disease.  Finally, her 4th GI ordered a pill camera.  Found the Crohn's damage at the very end of her small intestine, beyond the reach of either scope.  She did not display any of the traditional Crohn's symptoms either except for periodic abdominal pain.  

Just something to consider.  

mnburis Apprentice
mnburis
Posted
  • Author
40 minutes ago, cyclinglady said:

The first test, Calrotectin, is useful for diagnosing Inflammatory Bowel Disease (IBD).     Since your colonoscopy was fine (if I recall), I suppose Ulcerative colitis (one form of IBD) has been ruled out, but that leaves Crohn's.  

I could have sworn my niece had celiac disease.  Finally, her 4th GI ordered a pill camera.  Found the Crohn's damage at the very end of her small intestine, beyond the reach of either scope.  She did not display any of the traditional Crohn's symptoms either except for periodic abdominal pain.  

Just something to consider.  

The only thing he found on the colonoscopy was a polyp and he mentioned that my colon looked "streaky" whatever that means. I have photos lol. I guess I need to look up more about Crohn's.  To be honest no one has bothered ruling anything out except for my primary care dr when she ordered the celiac test 2 weeks ago. I was basically told that it was nothing and to learn to live with it.  I'm sorry but stabbing pains and fiery diarrhea isnt normal. Neither is the low vitamin levels or the neurological symptoms I have. I just need someone to believe in me and be willing to go the extra mile. 

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

Celiac.com Sponsor (A8-M):


Victoria1234 Experienced
Victoria1234
Posted
5 hours ago, mnburis said:

The only thing he found on the colonoscopy was a polyp and he mentioned that my colon looked "streaky" whatever that means. I have photos lol. I guess I need to look up more about Crohn's.  To be honest no one has bothered ruling anything out except for my primary care dr when she ordered the celiac test 2 weeks ago. I was basically told that it was nothing and to learn to live with it.  I'm sorry but stabbing pains and fiery diarrhea isnt normal. Neither is the low vitamin levels or the neurological symptoms I have. I just need someone to believe in me and be willing to go the extra mile. 

Sounds like it's find a new doctor time.... where are you in Nc? There's lots of great hospitals and doctors associated with them here.

mnburis Apprentice
mnburis
Posted
  • Author
4 hours ago, Victoria1234 said:

Sounds like it's find a new doctor time.... where are you in Nc? There's lots of great hospitals and doctors associated with them here.

I have an appointment next week with a new GI at Baptist Hospital

Victoria1234 Experienced
Victoria1234
Posted
6 minutes ago, mnburis said:

I have an appointment next week with a new GI at Baptist Hospital

Sounds great!

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. chrisinpa
      - chrisinpa commented on Scott Adams's article in Additional Concerns
      3

      Going Low-Gluten May Harm Good Gut Bacteria, Researchers Warn

      It's like a double edged sword.......we do one thing to improve a problem and cause another problem. I'd like to think the ultimate cure might be something that would train or modify the body to prevent the damage that gluten causes.
    2. Flash1970
      - Flash1970 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      You might try Heallix. It's a silver solution with fulvic acid. I just put the solution on with a cotton ball. It seemed to stop the nerve pain. Again, not in your eyes or ears. Go to heallix.com to read more about it and decide for yourself Also, I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out...
    3. trents
      - trents replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being...
    4. Roses8721
      - Roses8721 replied to Roses8721's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      10

      GI DX celiac despite neg serology and no biopsy

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    5. Ginger38
      - Ginger38 replied to Ginger38's topic in Related Issues & Disorders
      7

      Shingles - Could It Be Related to Gluten/ Celiac

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress ...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,490
    • Most Online (within 30 mins)
      7,748
    A.N.I.
    Newest Member
    A.N.I.
    Joined
  • Celiac.com Sponsor (A20):

  • Celiac.com Sponsor (A22):



  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Flash1970
      Shingles - Could It Be Related to Gluten/ Celiac

      By Flash1970 · Posted

      You might try Heallix.  It's a silver solution with fulvic acid. I just put the solution on with a cotton ball.  It seemed to stop the nerve pain. Again,  not in your eyes or ears.   Go to heallix.com to read more about it and decide for yourself Also,  I do think nerve and celiac combined have a lot to do with your susceptibility to shingles breaking out. 
    • trents
      GI DX celiac despite neg serology and no biopsy

      By trents · Posted

      Celiac disease requires both genetic potential and a triggering stress event to activate the genes. Otherwise it remains dormant and only a potential problem. So having the genetic potential is not deterministic for celiac disease. Many more people have the genes than actually develop the disease. But if you don't have the genes, the symptoms are likely being caused by something else.
    • Roses8721
      GI DX celiac despite neg serology and no biopsy

      By Roses8721 · Posted

      Yes, i pulled raw ancetry data and saw i have 2/3 markers for DQ2.2 but have heard from friends in genetics that this raw data can be wildly innacurate
    • Ginger38
      Shingles - Could It Be Related to Gluten/ Celiac

      By Ginger38 · Posted

      Thanks, I’m still dealing with the pain and tingling and itching and feeling like bugs or something crawling around on my face and scalp. It’s been a miserable experience. I saw my eye doc last week, the eye itself was okay, so they didn’t do anything. I did take a 7 day course of an antiviral. I’m hoping for a turnaround soon! My life is full of stress but I have been on / off the gluten free diet for the last year , after being talked into going back on gluten to have a biopsy, that looked okay. But I do have positive antibody levels that have been responsive  to a gluten free diet. I can’t help but wonder if the last year has caused all this. 
    • Scott Adams
      Help

      By Scott Adams · Posted

      I don't think any apps are up to date, which is exactly why this happened to you. Most of the data in such apps is years old, and it doesn't get updated in real time. Ultimately there is no substitution for learning to read labels. The following two lists are very helpful for anyone who is gluten sensitive and needs to avoid gluten when shopping. It's very important to learn to read labels and understand sources of hidden gluten, and to know some general information about product labelling--for example in the USA if wheat is a possible allergen it must be declared on a product's ingredient label like this: Allergens: Wheat.      
×
×
  • 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.