At a Loss

[mnburis]

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. 

[Feeneyja]

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.

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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]

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]

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

[mnburis]

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]

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]

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. 

[Victoria1234]

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]

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]

6 minutes ago, mnburis said:

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

Sounds great!