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

Got My Diagnosis!


Laurelf

Recommended Posts

Laurelf Explorer

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
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

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

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

mbrookes Community Regular
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

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

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

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
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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,933
    • Most Online (within 30 mins)
      7,748

    Kazwal
    Newest Member
    Kazwal
    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

    • Wheatwacked
      The discovery of the vitamin D receptor in multiple immune cell lineages, such as monocytes, dendritic cells, and activated T cells credits vitamin D with a novel role in modulating immunological functions and its subsequent role in the development or prevention of autoimmune diseases.  The Implication of Vitamin D and Autoimmunity: a Comprehensive Review
    • Wheatwacked
      Definitely get vitamin D 25(OH)D.  Celiac Disease causes vitamin D deficiency and one of the functions of vitamin D is modulating the genes.  While we can survive with low vitamin D as an adaptation to living in a seasonal environment, the homeostasis is 200 nmol/L.  Vitamin D Receptors are found in nearly every cell with a nucleus,while the highest concentrations are in tissues like the intestine, kidney, parathyroid, and bone.  A cellular communication system, if you will. The vitamin D receptor: contemporary genomic approaches reveal new basic and translational insights  Possible Root Causes of Histamine Intolerance. "Low levels of certain nutrients like copper, Vitamins A, B6, and C can lead to histamine build up along with excess or deficient levels of iron. Iodine also plays a crucial role in histamine regulation."  
    • AnnaNZ
      I forgot to mention my suspicion of the high amount of glyphosate allowed to be used on wheat in USA and NZ and Australia. My weight was 69kg mid-2023, I went down to 60kg in March 2024 and now hover around 63kg (just after winter here in NZ) - wheat-free and very low alcohol consumption.
    • AnnaNZ
      Hi Jess Thanks so much for your response and apologies for the long delay in answering. I think I must have been waiting for something to happen before I replied and unfortunately it fell off the radar... I have had an upper endoscopy and colonoscopy in the meantime (which revealed 'minor' issues only). Yes I do think histamine intolerance is one of the problems. I have been lowering my histamine intake and feeling a lot better. And I do think it is the liver which is giving the pain. I am currently taking zinc (I have had three low zinc tests now), magnesium, B complex, vitamin E and a calcium/Vitamin C mix. I consciously think about getting vitamin D outside. (Maybe I should have my vitamin D re-tested now...) I am still 100% gluten-free. My current thoughts on the cause of the problems is some, if not all, of the following: Genetically low zinc uptake, lack of vitamin D, wine drinking (alcohol/sulphites), covid, immune depletion, gastroparesis, dysbiosis, leaky gut, inability to process certain foods I am so much better than late 2023 so feel very positive 🙂    
    • lehum
      Hi and thank you very much for your detailed response! I am so glad that the protocol worked so well for you and helped you to get your health back on track. I've heard of it helping other people too. One question I have is how did you maintain your weight on this diet? I really rely on nuts and rice to keep me at a steady weight because I tend to lose weight quickly and am having a hard time envisioning how to make it work, especially when not being able to eat things like nuts and avocados. In case you have any input, woud be great to hear it! Friendly greetings.
×
×
  • 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.