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 Celiac.com!
    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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Gemini Experienced
Gemini
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

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:

Link to comment
Share on other sites
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.

Link to comment
Share on other sites
ang1e0251 Contributor
ang1e0251
Posted

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

Link to comment
Share on other sites
mbrookes Community Regular
mbrookes
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

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.

Link to comment
Share on other sites
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

Link to comment
Share on other sites
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

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Laurelf Explorer
Laurelf
  • Author
Posted

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

Link to comment
Share on other sites
ravenwoodglass Mentor
ravenwoodglass
Posted
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.

Link to comment
Share on other sites

Archived

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

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


  • Member Statistics

    • Total Members
      120,988
    • Most Online (within 30 mins)
      7,748
    Jenny B.
    Newest Member
    Jenny B.
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • TessaBaker
      Hair loss

      By TessaBaker · Posted

      It sounds like you're dealing with a complex situation, and I can understand how frustrating it must be not to have a clear answer. Gut health can indeed play a significant role in various aspects of our well-being, including hair health.
    • Celiac16
      Thiamine supplementation

      By Celiac16 · Posted

      I have found similar benefits from thiamine. I was diagnosed with celiac at 16 and never really recovered despite strict gluten and dairy free diet and no detectable antibodies on checkup bloodworks. I’ve tried stopping the b1 but start to feel bad again- I wanted my doctors to do more extensive testing for the different thiamine transporters and enzymes which would be a better indication if I was deficient or dependent on it but everyone dismisses it (there are know genetic mutations where you need to take it daily for life). I have looked into Thiamine Responsive Megablast Anemia and I have a lot of the more mild symptoms of the disease that manifest when thiamine isn’t given to the patient such as optic neuritis… I just find the parallels interesting. i think that celiacs could be a side issue of inflammation that resulted from vitamin deficiencies. I was eating a lot of sugar leading up to my diagnosis and since eating gluten free didn’t make me feel much better, I’m wondering if this was more the underlying issue (sugar heavily depletes b1). I usually take 1.5g thiamine a day.
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Thank you for your welcome and reply.  Yes I've been carefully reading labels looking for everything in bold and have been amazed by what I have seen. However Heinz tomato and basil soup is wheat free so I m thinking I already have ulcers?  The acid could be causing the pain . My pain always starts in one place then follows the same route through me . GP confirmed that is the route of our digestive system.  So much pain from stabbing to tearing. If I throw in milk with lactose it's horrific.  Many years of it now, won't go into details but been seeing a consultant for a supposedly different problem . Wondering what damage has been done over the years. Many thanks for your reply. Wishing you the very best.    
    • trents
      Waiting for urgent referral.

      By trents · Posted

      Welcome to the forum community, @Fluka66! Did you realize that the vast majority of all canned soups use wheat starch as a thickener, including such common commodities as Campbell's tomato soup?
    • Fluka66
      Waiting for urgent referral.

      By Fluka66 · Posted

      Hello. Any help would really steady my nerves right now. I realised recently that certain food left me in agonising pain so eliminated from my diet. I also have a swollen lymph node. My very caring Dr did some blood tests and I went back the other day to see another equally caring Dr . She looked at the test results one result has come back with something wrong. It came very fast so I'm afraid I didn't catch what it was. Anyway the urgent referral to ENT. She did say as I had already eliminated gluten it wouldn't say anything on the results and neither Drs nor I were prepared to reintroduce gluten . I've just had some tomato soup and again in agony only thinking this must have aggravated maybe existing problems. Does anyone know what I'm facing now ? My swollen lymph node , pain when eating gluten and lactose and I'm assuming the acidity of tomatoes triggering pain.  I'm trying to stay calm and to be honest I've been in intolerable pain at times rendering me unable to stand up straight but I've always just got on with it . Guess I'm reaching out and would really appreciate any wise or unwise words at this stage. Wishing you all the very best as you live with this illness. Fluka66  
×
×
  • Create New...