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

Got My Diagnosis!

Laurelf

Recommended Posts

Laurelf Explorer
Laurelf
Posted

Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

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

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
Posted
  Laurelf said:
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

It's one of the great mysteries of the modern world......why this disease will not be officially diagnosed until you have gone through enough testing to fill a month of Sundays! :blink: If it walks like a duck, quacks like a duck, guess what it is? Not that I am dissing NP's BUT you have had 2 DOCTORS agree on your results and that's rare enough these days. It sounds like the NP just doesn't know that much about Celiac in general.

Congratulations on obtaining a diagnosis and welcome to the club! You are now free to enjoy a stab at good health! :lol:

jststric Contributor
jststric
Posted

Because doctors in this country SUCK at knowing about Celiacs!!! Do they stop to realize that you are poisoning yourself so things will show up on their tests and you are miserable the whole time? Do they realize that the only real "cure" is to be gluten-free? Duh! It's not rocket science, but it seems to be for them.

ang1e0251 Contributor
ang1e0251
Posted

Two doctors trump one nurse practitioner. Yahtzee!! You have celiac disease!!

mbrookes Community Regular
mbrookes
Posted
  Laurelf said:
Just got my results from the biopsy and the pathologist said there was inflammation which showed the beginnings of celiac. However, the nurse practioner was hesitant to call it celiac because my blood didn't show it! She wants me to go back on gluten to redo the blood test which I said no. Enterolab found high IgA, fecal fat, the dr who did the endoscopy said she saw flattened folds and now the patholigist thinks its celiac. Plus, gluten-free has cleared my rashes and stopped my gi symptoms. So why won't she call it celiac? Any one else experience this?

Laurel

My blood tests were"inconclusive" but my gut was slick as an oil spill. Yep. That's celiac. Maybe the NP doesn't realize that the biopsy trumps the blood tests.

Quasior Rookie
Quasior
Posted

Theres like 5% of Coeliacs who never show positive bloods, or only show it some of the time. I'm one too. Go with the doctors results, you are coeliac! :D

troubleshooter123 Newbie
troubleshooter123
Posted

Yep. I was just diagosed last week. My sister and cousin have celiac, so I have had two bloods test over the past year and both were negative. I also have colitis so the GI Docs figured my symptoms were due to that. Finally, my primary care physician requested I get an EGD and voila, according to pathologist and my GI doctor, I very clearly have celiac and duodenitis. Already quit drinking three Monster energy drinks a day to stay awake. Have more energy. Hoping my ten other symptoms will go away soon.

John

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

Celiac.com Sponsor (A8-M):


Laurelf Explorer
Laurelf
Posted
  • Author

John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."

Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?

Thanks,

Laurel

ravenwoodglass Mentor
ravenwoodglass
Posted
  Laurelf said:
John - maybe you and/or someone else could answer this. On my biopsy report, the dr. wrote "increased intraepithelial lymphocytes and prominent brunner's glands. No significant atrophy. could be chronic duodenitis or early sprue."

Is duodenitis separate from celiac or related to celiac? and does the use of the word "significant" mean there was some atrophy?

Thanks,

Laurel

Duodentitis can be related to celiac. With the increase intraepithelial lymphocytes and the statement 'no significant atrophy' which to me means that some atrophy was found but your villi are not totally destroyed all point IMHO to celiac. I would try the diet when all your testing for celiac is done.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      129,867
    • Most Online (within 30 mins)
      7,748
    Mark Schaech
    Newest Member
    Mark Schaech
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Celiac Disease Comprehensive Panel

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Refractory Celiac disease - what to do

      By Scott Adams · Posted

      This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease.     
    • trents
      Supplements for those Diagnosed with Celiac Disease

      By trents · Posted

      Multivitamins are generally not potent enough to effective address significant deficiencies.
    • xxnonamexx
      Supplements for those Diagnosed with Celiac Disease

      By xxnonamexx · Posted

      Try a multivitamin maybe it will cover what you are deficient in.
    • cristiana
      Refractory Celiac disease - what to do

      By cristiana · Posted

      Agreed, and I can't remember exactly and haven't got time to check, but I think my blood didn't normalise for eight years! For years I read this forum thinking why can't I get my numbers down - everyone else manages to.   But my gastroenterologist didn't seem to worry about it, which makes me think he either thought I wasn't complying to the diet, or he'd seen similar cases.
×
×
  • Create New...