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

Missed Diagnosis,conflicting Diagnosis


lexusca

Recommended Posts

lexusca Rookie

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o


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



Celiac.com Sponsor (A8-M):



zus888 Contributor

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Yes, but my Gi doc had a the complete opposite recommendation. I also got a 2nd opinion with the same recommendation as my Gi doc, which was to go on a strict gluten-free diet and get re-scoped in about a year. That's really the only way to rule out or confirm celiac. (Villous blunting was found in endoscopic biopsy, but blood tests were mostly negative - I had one weak positive Gliadin IgG).

mamaw Community Regular

Sounds like another mainstream doctor who knows nothing about celiac or gluten sensitivity... there are tons of these . type doctors running loose & getting paid big bucks.......sorry ....I would not subject myself to scopes even monthly...I would either go gluten-free on my own or else find a doctor who knows about celiac...

If you let us know where you are from maybe someone will give you a name of a doctor who understands celiac.

Hope you find answers soon

blessings

mamaw

sa1937 Community Regular

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

Huh? I am also very confused by your post.

You mean you already got the biopsy results? It usually takes a week or so. IF the biopsy was positive, it would trump the negative blood work and you have celiac. False negatives are not uncommon on the celiac blood panel. Did you get copies of the celiac panel (hopefully your dr. requested the complete panel or the new DGP test) as well as a copy of the biopsy results? If not, get copies and post results here when you do...there are some knowledgeable people here who can help you interpret them.

I'm more than confused by a repeat scope, cat scan and bloodwork. ??? If your biopsy was positive, why would your dr. want you to go back to eating gluten?

txplowgirl Enthusiast

Positive biopsy is the Gold standard diagnosis. You are Celiac and the dr is an idiot.

zus888 Contributor

Actually, villous blunting and the other biopsy results that are representative of celiac aren't NECESSARILY due to celiac. The physiological changes to the small intestine could also be due to soy or milk intolerance, Crohns, intestinal carcinoma, lymphoma, and some others that I cannot remember. Yes, the chances of it being celiac is much greater than the other issues, but you'd have to do more testing to really be sure. The "testing" my doc has suggested is doing a strict gluten-free diet for a year, do another scope, and if my intestines are healthy, then we have our answer. If not, then we'll need to look further into the other possible causes.

I have talked to him about this because they found inflamed abdominal lymph nodes during an ultrasound in monitoring another disease I have. To me, I feel the chances of my biopsies being the result of something more sinister (like lymphoma) are higher because we have what could be another symptom or sign that points to that. I didn't want him to jump to conclusions and diagnose celiac without as least considering the other possibilities because if it is something like cancer, then the earlier we find it and deal with it, the better chances I have. So, those possibilities are in the back of his mind (as with the doc who gave me the second opinion), but we are all hoping that it is celiac (and chances are that's exactly what it is). But only until we see improvement after going gluten-free will we know for sure.

Personally, I also find it VERY odd to get weekly blood tests for celiac, let alone the scope and CT scan.

ReferencePlease Newbie

Has anyone ever been given a conflicting diagnosis. How frustrating,seen the specialist last tuesday and I get the you have celiac, but you might not...but chances are you do. Biopsy was positve for celliac but blood work did not. Now I have been told to eat gluten and have another scope,catscan and bloodwork every week. Anyone else have this problem. I am so ready to lose it :o

If you feel better being off gluten, don't go near the stuff. I have opted to skip any more testing because making myself ill to get the proper label (celiac or wheat intolerant) is just not worth it.


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



Celiac.com Sponsor (A8-M):



Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    2. - Scott Adams replied to KDeL's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    3. - KDeL posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      diagnostic testing variance

    4. - Peggy M replied to louissthephin's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Does Kroger Offer Affordable Gluten-Free Options?

    5. - Scott Adams replied to Sunshine4's topic in Related Issues & Disorders
      4

      Neurologic symptoms - Muscle Twitching and Hand Tremors


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      128,278
    • Most Online (within 30 mins)
      7,748

    Pinkwells19
    Newest Member
    Pinkwells19
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.8k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Yes, I'd like to know also if a "total IGA" test was ever ordered. It checks for IGA deficiency. If you are IGA deficient, it will likely render the individual celiac IGA antibody tests invalid. Total IGA goes by other names as well:  Immunoglobulin A (IgA) Test Serum IgA Test IgA Serum Levels Test IgA Blood Test IgA Quantitative Test IgA Antibody Test IgA Immunodeficiency Test People who are IGA deficient should have IGG tests run as well. Check this out:    I am also wondering if your on again/off again gluten free experimentation has sabotaged your testing. For celiac disease testing to be valid, one must be eating generous amounts of gluten for weeks/months leading up to the test.
    • Scott Adams
      I’m so sorry you’re going through this—it sounds like you’ve been on a really challenging journey with your health. Your symptoms (stomach pains, bloating, low iron, joint pain, brain fog, etc.) do sound like they could be related to gluten sensitivity or another condition like non-celiac gluten sensitivity (NCGS). It’s interesting that your bloodwork hasn’t shown celiac markers, but the lymphocytosis in your duodenum could still point to some kind of immune response or irritation, even if it’s not classic celiac disease. The fact that your symptoms improved when you went gluten-free but returned when you reintroduced gluten (especially with the donut incident) is a pretty strong clue that gluten might be a trigger for you. It’s also worth noting that symptoms can be inconsistent, especially if your body is still healing or if there are other factors at play, like stress, cross-contamination, or other food intolerances. Do you have more info about your blood test results? Did they do a total IGA test as well? 
    • KDeL
      For years, I have dealt with various gluten related symptoms like stomach pains, bloating, IBS-C "ish" digestive issues, low iron, low Vit D, joint pains, brain fog, and more. I finally got a double scope and stomach looks clear, but I have some lymphocytosis of the duodenum. I am wondering if this sounds familiar to anyone, where I have not shown celiac red flags in bloodwork IGA tests. WIll be following up soon with GI Dr, but so far, my symptoms are intermittent. I go back and forth with gluten-free diet (especially this past year.... did two tests where the stomach pains I had went away without gluten in diet. HOWEVER, I added it back a third time and I didn't get the pains)   Anyway, I am so confused and scared to eat anything now because I recently had a few bites of a yeasty donut and I immediately got so sick. Any thoughts??
    • Peggy M
      Kroeger has quite a few Gluten free items.  Right now they are redoing my Kroeger store and are adding everything into the regular sections.  Since this was done some new ones have been added.  Publix and Ingles also have great selections. I actually shop Walmart and Food City to since prices on some items vary from store to store.
    • Scott Adams
      Sorry but I don't have specific recommendations for doctors, however, starting out with good multivitamins/minerals would make sense. You may want to get your doctor to screen you for where you different levels are now to help identify any that are low, but since you're newly diagnosed within the past year, supplementation is usually essential for most celiacs.
×
×
  • Create New...