Jump to content

  • 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):

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. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    2. Aretaeus Cappadocia
      - Aretaeus Cappadocia replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    3. HectorConvector
      - HectorConvector replied to HectorConvector's topic in Related Issues & Disorders
      356

      Terrible Neurological Symptoms

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the...
    4. Aretaeus Cappadocia
      - Aretaeus Cappadocia posted a topic in Gluten-Free Recipes & Cooking Tips
      0

      Zaalouk moroccan eggplant salad

      I've only made this a couple of times but it's really easy and I love the flavor. If you can, use all of the ingredients to get the full palette of flavors. I use fresh or canned tomatoes and I don't worry about peeling them. If you don't have harissa, there are replacement recipes online. If you don't have the greens, I suggest adding a little chopped...
    5. Scott Adams
      0

      Celiac.com Video News: April 2026

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      134,060
    • Most Online (within 30 mins)
      10,442
    Cathy Bright
    Newest Member
    Cathy Bright
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Sciatica came to mind for me as well. You might want to get some imaging done on your C-spine.
    • Aretaeus Cappadocia
      Terrible Neurological Symptoms

      By Aretaeus Cappadocia · Posted

      Maybe this is sciatica? When mine acts up a little, I switch my wallet from one back pocket to the other. this isn't a substitute for more serious medical help, but for me it's a bandaid.
    • HectorConvector
      Terrible Neurological Symptoms

      By HectorConvector · Posted

      OK so I just learned something completely new about this for the first time in years, that is REALLY WEIRD. One of my nerves that likes to "burn" or whatever is doing it every time I bow my head! I mean it is completely repeatable. Literally every time. Once my head goes beyond a certain angle *boom*. Nerve goes mental (lower right leg pain). What the hell. I've never seen a direct trigger such as this before that I can recall. The pain was the usual type I get from this problem - I suspect somehow the head movement was interrupting descending inhibition processes, causing the pain to leak through somehow.
    • Aretaeus Cappadocia
      Zaalouk moroccan eggplant salad

      By Aretaeus Cappadocia · Posted

      I've only made this a couple of times but it's really easy and I love the flavor. If you can, use all of the ingredients to get the full palette of flavors. I use fresh or canned tomatoes and I don't worry about peeling them. If you don't have harissa, there are replacement recipes online. If you don't have the greens, I suggest adding a little chopped baby spinach or celery leaves to add a dash of green color to this red dish. Best eaten in first couple days because flavor tends to fade. Leftovers are still good, but not as vibrant. Ingredients 2 medium eggplants, partially peeled and cut into cubes (original recipe says 1 in, but I prefer 1/2 to 3/4 in) 2 tomatoes, peeled and crushed 4 garlic cloves, finely chopped or minced 1 tablespoon fresh flat-leaf parsley, chopped 1 tablespoon fresh cilantro, chopped ¼ cup extra virgin olive oil 2 tablespoons spicy harissa (I use Mina brand) 1 teaspoon cumin 1 teaspoon paprika ½ teaspoon black pepper 1 tablespoon apple cider vinegar or lemon juice 1 tablespoon tomato paste (optional) Salt to taste Preparation     • Heat olive oil in skillet or pot over medium heat. Add all ingredients and cook for 10 minutes, stirring occasionally. Cover and cook on low heat for an additional 20 minutes, stirring occasionally.       • Serve warm or cold as a side or with bread for dipping. Enjoy! Original recipe is here, if you want to see photos: mina.co/blogs/recipes/zaalouk-moroccan-eggplant-salad  
    • xxnonamexx
      1 Year Elimination Diet journey

      By xxnonamexx · Posted

      I checked consumer labs that I'm a member of they independently check products for safely and claims the wolfs was rated great and bobs redmill buckwheat cereal. Ultra low gotten no dangerous levels of arsenic heavy metals, mold, yeast etc. plus they mention to refrigerate. I wonder if the raw buckwheat they rinse bc it's not toasted like kasha. Toasted removes the grassy taste I have to try the one you mentioned. I also bought Qia which is a quinoa mixed got great reviews. 
×
×
  • Create New...