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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,582
    • Most Online (within 30 mins)
      7,748

    Art Christensen
    Newest Member
    Art Christensen
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @Ben98! If you have been consciously or unconsciously avoiding gluten because of the discomfort it produces then it is likely that your blood antibody testing for celiac disease has been rendered invalid. Valid testing requires regular consumption of generous amounts of gluten. The other strong possibility is that you have NCGS (Non Celiac Gluten Sensitivity) which shares many of the same symptoms with celiac disease but does not have the autoimmune component and thus does not damage the small bowel lining. It is 10x mor common than celiac disease. There is currently no test for NCGS. Celiac disease must first be ruled out. Some experts in the field believe it can be a precursor to the development of celiac disease. Having one or both of the primary genes for developing celiac disease does not imply that you will develop active celiac disease. It simply establishes the potential for it. About 40% of the population has the genetic potential but only about 1% develop active celiac disease. 
    • Ben98
      TTG blood test and total IGA tested on many occasions which have always remained normal, upper GI pain under my ribs since 2022. I had an endoscopy in 2023 which showed moderate gastritis. no biopsy’s were taken unfortunately. genetic test was positive for HLADQ2. extreme bloating after eating gluten, it’ll feel like I’ve got bricks in my stomach so uncomfortably full. the pain is like a dull ache under the upper left almost like a stitch feeling after a long walk. I am just wanting some advice has anyone here experienced gastritis with a gluten issue before? thank you  
    • Wheatwacked
      "Conclusions: The urinary iodine level was significantly lower in women with postmenopausal osteoporosis, and iodine replacement may be important in preventing osteoporosis"  Body iodine status in women with postmenopausal osteoporosis Low iodine can cause thyroid problems, but Iodine deficiency will not show up in thyroid tests.  Iodine is important for healing, its job is to kill off defective and aging cells (Apoptosis). Skin, brain fog, nails, muscle tone all inproved when I started taking 600 mcg (RDA 150 - 1000 mcg) of Liquid Iodine drops. Some with dermatitis herpetiformis, Iodine exacerbates the rash.  I started at 1 drop (50 mcg) and worked up to 12 drops, but I don't have dermatitis herpetiformis.
    • cristiana
      That's great news, you can do this.  Let us know how things go and don't hesitate to ask if you have any more questions. Cristiana 😊
    • petitojou
      Thank you so much for sharing your experience and I found myself giggling with happiness as I read how your body reached such spring! And I hope that your current journey is also successful!! Definitely starting the food diary! So many amazing advices. And it’s very scary. It really hits all our soft spots as well as our confidence system. Most doctors I went thought I was underage despite being in my late 20s. Right now I look like am I twelve, but is also this body that’s taking so much, so I might as well love it too! Going to make the necessary changes and stay in this path. Thank you again! 🫶
×
×
  • 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.