Jump to content
  • 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

Cannot Seem to Get Answers About My Diagnosis


Zerosan

Recommended Posts

Zerosan Newbie

Hey all, long time lurker but first time poster. Last year, around August, I had a Biopsy after years of Symptoms. I was told after the test that nothing was wrong, the day after my doctor called and said that it was Celiac. Looking at my medical records show that one of their documents says negative but some of the biopsy paperwork shows positive. So I went gluten-free but my symptoms continued. Constant Nausea, abdominal pain and weight loss. This continued and I was prescribed with a Nausea medication to assist with handling that, it was suggested I get a second look at what is going on. So I go to Mayo Clinic, there I get a second endoscopy and it comes up negative. One of my doctors believes it could be due to my gluten-free diet, the other does not believe I have Celiac. I have done a CT Scan with Dye, eating the radioactive food test and now they want me to do a pill biopsy due to some swelling in my small intestine.  I have kind of been at my wits end and tired of feeling this way everyday even though I have changed my diet and such. Any suggestions? They still are unsure why I am feeling this way or how to properly treat me. My story has a tad more to it but those are the big plot points in my life at the moment. Any thoughts on the matter? I appreciate anyone taking the time to read this even, I don't know who else to talk to about this or how I can control these symptoms. 


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Were any of the celiac blood tests given at any point in time?  

Zerosan Newbie

I did receive multiple blood tests, all showed as negative. They did some months before the original biopsy, right before / after first biopsy and before the second one as well.

cyclinglady Grand Master

So, negative blood tests, yet the first endoscopy/biopsies revealed damage (wonder how much?).  Were other things that cause villi damage ruled out?  Here is a list:

Open Original Shared Link

cyclinglady Grand Master

Oh, has your gallbladder been checked for funtionality?  This can cause severe pain, nausea, etc.  An ultrasound or CT scan will not catch gallbladder functionality.  I should know, my BG worked on and off for years until it start to rot.  No stones - just would not empty (randomly).  

cyclinglady Grand Master

Okay, the forum edit function is not working today in my iPad.  I meant, GB (gallbladder) not BG!  ?

Zerosan Newbie

My Gallbladder was tested and appeared to be operating normally, that was their first though on the pain. As for the damage, it was described as not that much, I do have a slight intolerance to Milk. Could that have caused the damage? They thought it might be Crohns which is causing the swelling but they said its minimal but still noticeable.  If I had Celiacs do you think when they tested again with a biopsy it would show?


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



Celiac.com Sponsor (A8-M):



Zerosan Newbie

They did some kind of blood test or something for Crohns early on and it tested negative i believe, I see what you mean. Edit function didnt work too well on Galaxy tab either =).

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,443
    • Most Online (within 30 mins)
      7,748

    Nannie J
    Newest Member
    Nannie J
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      This is an older article, but still helpful:  
    • cristiana
      It's strange because I'm pretty sure not too long ago I picked up a loaf of bread with B vitamins, but I can't find a single one now.  Probably cutbacks, everyone's trying to save money now!
    • Scott Adams
      Eating grains typically depletes certain B vitamins, so I'm not sure why they decided to fortify with calcium and iron, but hopefully we'll see more B vitamin fortification in gluten-free products going forward.
    • Rogol72
      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.