No Gut Pain

[Blvr]

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.

 

[cyclinglady]

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 January 6, 2019 by cyclinglady