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

No Gut Pain


Blvr

Recommended Posts

Blvr Rookie

Is anyone really 100% gluten free?  I read that your small intestine feels no different if you eat a few bread crumbs or the whole sandwich.  I have no pain eating any gluten.  I was anemic so my doctor ordered a endoscopy which revealed Celiac disease.  Even the die-hards risk cross contamination or unintentionally eating gluten.  I'm not sure why 99% gluten free wouldn't work for me.  What's the difference?  I'm good, but want a bite occasionally.

 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master
(edited)

I am gluten free.  I know for sure because a repeat endoscopy revealed a healed small intestine.  However, I have been exposed to gluten (not intentionally) during the past five years and it has caused many new problems.  

Like you, I had no GI issues.  My celiac disease was caught during a colonoscopy consult (yep, over 50).  My GI noticed my life-long anemia which became severe during menopause which prompted him to order the celiac blood tests.  

I was shocked.  I had no GI issues as long as I avoided garlic, onions, nuts, dairy and eggs (most of those resolved on the diet).  Two months later after my diagnosis, I fractured my back doing nothing.  That scared the “@#$&” out of me.  To approach my retirement years and face crumbling bones was horrifying!  Who cares about some minor GI issues?  I had to stay off my bike for a year!  No more rollerskating or skiing.  I was devastated.  I had no idea my bones were compromised.

That last endoscopy did prove that my celiac disease was in remission, but it revealed autoimmune gastritis.  I had a nodule removed.  Thankfully, it was non cancerous, but the reality is that it can turn into cancer and there is no known treatment for AG.  It flares up and causes me many symptoms now.  I did not have this five years ago.  Can I blame gluten exposures?  Who knows?  

What I have learned in five years is that everyone is different.  No celiac expert knows for sure what the cut off is.  They made an educated guess (20 ppm) but not all celiacs fall into the spectrum.  Some are more sensitive and some are less.  Who knows where you stand?  

You are 68.  It is hard to make changes.  I get that.  I get pretty ticked off that I things like my bras and underwear keep getting discontinued.    Another change to deal with and it drives me crazy.   But it is up to you to decide if living life comfortably into your 70s and 80s is worth the work.  I know that I want to stay active and continue to travel.  I have a teen at home and want to insure she is well established as an adult.  

Consider joining a local celiac disease support group, or keep active on the forum.  For me, education and “hanging” with like people help me so much.  

Hugs!  

Edited by cyclinglady

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
      131,075
    • Most Online (within 30 mins)
      7,748

    Annevt
    Newest Member
    Annevt
    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

    • Wheatwacked
      Just switching to gluten free diet will answer your question without involving anyone else.  Your sister was diagnosed, that puts you at 40% risk of having it also as a first degree relative.  If you improve on a trial gluten free diet, you either have Celiac Disease (autoimmune) or Non Celiac Gluten Sensitivity (not autoimmune).  In any case it is important to address nutritional deficiencies like vitamin D.  Gluten free processed foods are not required to fortify.  The reason gluten foods are fortified is our western diet is deficient in them to the point where the government had to step in and require fortification.   Once you start GFD you'll realize it was the gluten you were afraid of all along, but nobody told you.
    • trents
      Maybe celiac but maybe NCGS that was misdiagnosed as IBS morphing gradually into celiac. Is NCGS a new category to you? It shares many of the same GI symptoms with celiac disease but does not damage the small bowel lining like celiac.
    • knitty kitty
      Thiamine has antifungal properties.  The body uses thiamine to keep bacteria and yeasts from overgrowth in the digestive system.   Fluconazole use can cause thiamine deficiency.   Supplementing with thiamine in the form Benfotiamine would be beneficial as Benfotiamine promotes intestinal healing.   Thiamine and the other B vitamins tend to be low in Celiac due to malabsorption.  Talk to your doctor about supplementing vitamins and minerals.
    • Scott Adams
      Welcome @Natalia Revelo, your experience is profoundly difficult and, sadly, not entirely unique within the celiac community. It's the frustrating reality of "silent" or ongoing damage that isn't captured by the MARSH score alone, which only measures active villous atrophy. Your normal biopsy suggests your diet is preventing the classic autoimmune attack, but it doesn't mean your gut has fully healed or that other issues aren't at play. The inflammation from your newly discovered milk and egg allergies is a huge clue; this constant allergic response can create a low-grade inflammatory environment that severely hampers nutrient absorption, effectively creating a "leaky gut" scenario independent of celiac damage. This is likely why your iron stores deplete so rapidly—your body is both unable to absorb it efficiently and may be losing it through inflammation. While the functional medicine path is expensive, it's clearly providing answers and relief that traditional gastroenterology, focused solely on the gluten-free diet and biopsy results, is missing. To move forward, continue the gut-healing protocols your functional doctor recommends (perhaps exploring alternative options to glutamine that won't irritate your cystitis), maintain your strict avoidance of all allergens and irritants, and know that true healing is a multi-faceted process. You might seek a second opinion from a different gastroenterologist who is more knowledgeable about non-responsive celiac disease and the complex interplay of food allergies and micronutrient absorption, but your current path, while costly, seems to be leading you toward the steady health you need.
    • knitty kitty
      Have you had a DNA test to look for Celiac disease genes?  If she doesn't have any celiac specific genes, look for another explanation.  If she does have Celiac genes, assume they are turned on and active Celiac disease is progressing.  All first degree relatives (mother, father, siblings, children) should be genetically tested as well.   Sometimes blood tests are ambiguous or false negatives if one has anemia, diabetes or thiamine deficiency.  Certain medications like antihistamines and steroids can suppress the immune system and result in false negatives or ambiguous results on antibody tests.  
×
×
  • Create New...