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

Has This Happened To Anyone Else?


skinnyminny

Recommended Posts

skinnyminny Enthusiast

I went to the doctor today and was disappointed as always.I have had sharp pains from what I thought was a left over stomach virus but it has gone on so long ( 8 days) I thought I would go get it checked out. I went to the same doctors office I went to when I was so sick with finding out I had celiac, the doctor I saw that time refused to test me for Celiac that there was no way I could live the rest of my life without wheat gluten and it was all mental. Therefore he put me through everything else medicines, tests, scopes, anything and everything to get my money and so I got another opion and the test came back positeve for Celiac Disease.

SO today I went to the same office of the doctor who refused to test me, but saw another doctor and in my chart was a blood test that said I was negative for celiac disease. This doctor never did the test though because he was so againist Celiac the other doctor I went to for the second opinion diagnosed me!!! So i am goin in today to see if there was something wrong with me and he tells me I dont have celiac and wants to re scope and biopsy me!! I mean are you serious!! I could not bbelieve he was telling me this... I am so sick if I am to even get a crumb of gluten!! Sorry I had to rant I am hoping my parents do not let them re scope and biopsy me... I am having a cat scan done monday to see what the pain is from


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

You really need to stay out of that doctors office and go to the one who diagnosed you even if you need to travel to do so. You also need to get copies of the records from the diagnosis that you can bring in to the doctors with you if you need to. You have a legal right to them. The second doctor is going off the records of the first one you saw in his practice he needs to see the positive diagnosis.

Also it might be a good idea to get your folks to come onto the board and read some posts, in particular in the prediagnosis and post diagnosis section. That will help them understand that you are diagnosed and really do not need to be tortured further just to line a doctors pockets. That said however you also need to keep in mind that not everything is celiac caused and be sure you have eliminated gluten completely, food, toiletries and cross contamination risks. If you still are symptomatic and all gluten has been ferreted out and you are through the healing phase you may have another issue going on.

hurrican-drea Newbie

How dare they! I am self diagnosed at 22. If I only had a dime for every doctor that said it's all in your head or offered me prozac. I kept saying I'm sick nrot ctazy, nobody listened. Don't be afraid to be insistent and don't ever forget yrou are a payring customer.

Drea

hathor Contributor

I imagine the blood test in there was a copy sent to your first doctor's office by the second doctor. Was just the conclusion sent or the numbers themselves? I am inclined to think that either the second doctor sent the wrong results or the doctor you saw doesn't know how to read them. You should get this straightened out. The easiest way would be to call the second doctor's office and explain the problem.

However, is there any reason to continue to go to the first doctor at all? If someone dismissed my symptoms or thought it was all in my head, I would immediately drop him. Particularly after he was proven wrong ... and it doesn't seem like this other doctor in his office is any better.

sickchick Community Regular

excuse me for dreaming of smacking my psychiatrist across the face with my medical chart lol!

Unfortuntely I've been in very similar situations for years. I appreciate your sheer frustration. I hope you find a brilliant lovely doctor B)

lovelove

buffettbride Enthusiast

Ya know, the more I've read around here, the 16-25 year olds have a real time with this. Between getting parents and doctors to believe you, that must be really tough. I'm so thankful so many of you have had the gumption to look this stuff up yourself and find your way here. As the mom of a Celiac I can't imagine not having this place as a resource, if only to read up and get a feel for what Celiacs experience and how to make life work in a gluten-filled world (the crap is everywhere I tell ya).

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    2. - trents commented on Scott Adams's article in Kids and Celiac Disease
      2

      New Study Reveals Age and Racial Gaps in Pediatric Celiac Testing

    3. - Russ H replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    4. - Scott Adams replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      4

      Positive biopsy

    5. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New "Glowing Bacteria" Pill Could Transform Gut Disease Detection (+Video)

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,002
    • Most Online (within 30 mins)
      7,748

    Lsnel
    Newest Member
    Lsnel
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      I agree with @trents that the IgA you listed sounds like a total IgA, not celiac-specific, if 114 is normal.  Were any other antibody tests run?  
    • Russ H
      What you describe is seronegative villous atrophy (negative antibody tests but positive biopsy). It is uncommon in coeliac disease, and there are other causes, but the most common cause is coeliac disease. I would pursue this with your healthcare provider if possible. Based on clinical history, test results and possible genetic testing for susceptibility to coeliac disease it should be possible to give a diagnosis. There is a bit more here: Seronegative coeliac disease
    • Scott Adams
      If you are still eating gluten you could get a celiac disease blood panel done, but I agree with @trents and the gold standard for diagnosing celiac disease would be your endoscopy results. Is it possible they did do a celiac disease panel before your biopsy? This would be the normal chain of events. 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.    
    • trents
      Actually, it would be more correct to say that the genetic potential to develop celiac disease is passed down from parents to children. About 40% of the general population has the genetic potential to develop celiac disease but only about 1% of the general population actually do. But it is also true that the offspring of those who do have active celiac disease are at a considerably higher risk of developing active celiac disease than those of parents who have the genes but don't develop the disease. Some recent, larger studies put the risk at near 50% for the first degree relatives of those who have active celiac disease.
    • Jordan Carlson
      Hello everyone! Been a while since I posted. The past few moths have been the best by for recovery for myself. I have been the least bloated I have ever been, my constant throat clearing is almost gone, I have stopped almost all medication I was prevously taking (was taking vyvanse for adhd, pristiq for anxiety,fomotadine/blexten for histamine blockers and singulair). Only thing I take now is Tecta. I also no longer get any rashes after eating. Things are going very well. Most success came actually once I upped my B12 daily dose to 5,000 mcg. I do have one thing I am un able to figure out and want to see if anyone else has this issue or has experience working around it. Ever since I was born I have always had a issue getting fruits and veggies down. No matter how hard I tried, it would always result in gagging or throwing up. Always just thought I was a picky eater. Now that my stomach and system has healed enough that I can feel when something is off almost istantly, I notice that after eating most fruits (sometimes I am ok with bananas) and veggies, my stomach instantly starts burning and my heart starts to pound and I get really anxious as if my body doesnt know what to do with what just enetered it. So I am thinking now that this is what probably was going on when I was born and my body started rejecting it before which caused this weird sensory issue with it causing the gagging. Hoping someone has some exprience with this as well because I would love to be able to enjoy a nice fruit smoothie once in a while haha. Thanks everyone!
×
×
  • 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.