Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Would Celiac always be noticable in a small intestine pathology


moey

Recommended Posts

moey Newbie

Would Celiac disease be visible in a small intestine pathology if you were not eating gluten for some time. At this level of dissection would it always be known even for a recovered patient? I had a 5 inches of my small intestine taken out during a right hemicolectomy procedure nothing was reported but the pathologist was looking for a tumor not Celiac disease.

 


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



Celiac.com Sponsor (A8-M):



trents Grand Master

I think not. Biopsies to check for celiac disease are not considered valid unless the patient has been currently consuming gluten on a regular basis.

So for clarification's sake, I assume you have not been officially diagnosed with celiac disease but at some point before the hemicolectomy you put yourself on a gluten-free diet. 

moey Newbie

I put myself on a diet which consisted of food that didn't anger my tumor :) which was very limited.

I guess theres not much I can do except wait until my digestion improves from the surgery and try gluten again.

Thanks for the input..

 

trents Grand Master

Celiac Disease creates a greater risk for small bowel cancer. I would hesitate to start reintroducing gluten into your diet if I were you since you already had a tumor and recent surgery. Instead, I would double down on eliminating gluten from your diet. Educate yourself as to how gluten is hidden in our food supply, supplements and medications. If after you heal from the surgery and your body has adjusted to having a shorter digestive track you start feeling better by eliminating gluten from your diet, I would assume you have celiac disease and would need to diligently practice gluten-free eating the rest of your life.

moey Newbie

Thank you for the information.

I had a neoroendocrine tumor in my appendix not very common. It was advanced enough to remove part of my colon to prevent it from spreading if some was missed in the initial appendectomy.

 

knitty kitty Grand Master

Moey,

You could have a genetic test done to check for the genes related to Celiac Disease.  

Imho, it's ridiculous to harm yourself with gluten for a diagnosis.  

Check into the Autoimmune Paleo diet which promotes intestinal healing.  It's basically meat and fresh veggies.  No dairy, no nightshades (tomatoes, potatoes, eggplants, and peppers), no grains, no legumes.

And ask your doctor about supplementing with a multivitamin or  B-Complex vitamin until you're feeling better.

Hope this helps!

trents Grand Master

The gene test is far from being definitive since only a small portion of those with the genes actually develop celiac disease whereas a relatively large proportion of the population have the genes. It takes some kind of triggering event for the genes to be expressed. But if turns out you don't have the genes then you could look elsewhere for what is causing your issues.


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



Celiac.com Sponsor (A8-M):



moey Newbie

I do carry one of the genes. I think it put my percent chance at 8% if I recall correctly.

I did have a stool test done at one point because of absorption issues and suspicion of a parasite (high eosinophil levels) . It did show high levels of anti glaiden. But Im aware this really is not a good diagnostic test for that. Specially in my case the oncologist felt it was possible the tumor was secreting hormones causing digestive issues.

I think at this point I just have to wait and let my digestive system normalize before I consider anything more about Celiac investigation. I have not had any gluten in probably 4 months.

 

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,728
    • Most Online (within 30 mins)
      7,748

    Jamie marozza
    Newest Member
    Jamie marozza
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.6k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • nanny marley
      I have recently had tests for calprotein in a fecal test has come back apparently high at 2500 and flagged up  stage 3a GKD and GFR  59 and 95 on the serum creatinine the test I was sent for also for milk allergy and celiac hasn't come back yet because it's had to be sent off to a different place I was just wondering if anyone had these addition tests going threw ceilac testing any help would be great 
    • Julie Max
      As far as I know, miso paste is gluten-free and should be added to the Safe List.  And, shouldn't soy sauce be on the Forbidden list?
    • knitty kitty
      @PlanetJanet, Sorry to hear about your back pain.  I have three crushed vertebrae myself.  I found that a combination of Thiamine, Cobalamin and Pyridoxine (all water soluble B vitamins) work effectively for my back pain.  This combination really works without the side effects of prescription and over-the-counter pain meds.  I hope you will give them a try. Here are articles on these vitamins and pain relief... Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ And... Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review https://pubmed.ncbi.nlm.nih.gov/33865694/
    • Scott Adams
      Here is the info from their website. If you don't trust them, you may find products that are labelled "gluten-free," but I don't see any reason to believe there is any gluten in them. Hunt's Tomato Paste: https://www.hunts.com/tomato-sauce-paste/tomato-paste   Hunt's Tomato Sauce: https://www.hunts.com/tomato-sauce-and-paste/tomato-sauce  
    • PlanetJanet
      Hi, trents, Thanks for responding! One book I read is called, Doing Harm, by Maya Dusenbery.  She has wonderful perspective and insight, and it's all research-based.  It's about how women can't get treated.  Everyone should read this!  I wouldn't mind reading it again, even.  She believes that women are so busy taking care of families, working, etc., that we are more likely to ignore our pain and symptoms for longer.  Men have women bugging them to go to the doctor.  Women don't have anyone telling us that.  We don't have time to go.  Providers think we are over-emotional, histrionic, depressed, have low tolerance to pain...Men get prescribed opioids for the same symptoms women are prescribed anti-depressants.  My car crash in January 2020 made going to the doctor a full-time job.  I grew up with 2 rough and tumble brothers, played outside, climbed trees.  I was tough and strong, pain didn't bother me, I knew it would heal.  But do you think I could get treated for back pain--as a woman?  I am so familiar now with the brush-offs, the blank looks, the, "Take your Ibuprofen," the insinuation that I am just over-reacting, trying to get attention, or even, "Drug Seeking."  Took almost 2 years, but what was happening was Degenerative Sacroiliitis.  I couldn't walk right, my gait was off, effected my entire spine because gait was off.  I had braced myself with my legs in a front-impact, slightly head-on crash with someone who made a left turn in front of me from the opposite direction.  I finally had SI Joint Fusion surgery, both sides.  It's not a cure. I have given up on trying to get properly treated.  There is so much pain with these spine issues caused by bad gait:  scoliosis, lithesis, arthropathy, bulged disc, Tarlov cysts.  And I can't take anything because of my bad tummy. Not that I would ever hurt anyone, but I can relate to Luis Mangione who couldn't get treated for his back injury. I feel so alone.
×
×
  • Create New...