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

Waiting For An Answer


Chrisco

Recommended Posts

Chrisco Apprentice

I've had the blood work to test for Celiac done. I see the Dr tomorrow to get the results. I couldn't wait so I went to the lab and got a copy of the results. It shows that I am negative for Celiac. This may sound crazy but I was really hoping for a positive result. I have been sick for 15 years. I am sick with nausea all the time. The Dr's have never been able to give me any answers. I've got the "it's all in your head" explanation a hundred times. I started seeing a psychologist who doesn't believe it's in my head and encouraged me to keep seeing the Dr. I finally found a Dr who listened to me and she swears it is Celiac. I was so excited to have an answer. When I got the results my heart sank because I am still sick with no answer and no remedy. I take a lot of time off from work and I'm pretty sure that I will be fired soon if I do not get well. I know some people have said they tested negative but went on the diet and felt better. My Dr wants to send me for an endoscopy so I don't want to start the diet till after that because I'm afraid I might get a negative result. I know it may seem silly to want a diagnosis so bad but because I have had people not believe that I'm sick and that I'm making it up I feel like I need something to show them to say see I told you I was sick. Has anyone else felt this way? I feel like I'm alone in all this. Everyone is sick of me being sick and honestly I'm sick of it to. I feel like giving up and just not getting out of bed.


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



Celiac.com Sponsor (A8-M):



Wolicki Enthusiast

You're not alone. Most of us have had similar problems.

Have the endo if you'd like, or you can just try the diet to see if you feel better. I hope you get answers soon. If it makes you feel any better, my son and I both have Celiac but BOTH our blood tests only showed abnormal high IGA serum. My little boy started the diet last Friday and has been strict. Yesterday at school, he wasn't thinking and ate a Red Vine Licorice. He spent the afternoon throwing up. He's already having exaggerated gluten responses after only one week. Blood tests are not so reliable. Although doctors think the postive biopsy is the gold standard, I believe the positive effect of diet is the gold standard. Just my two cents.

ang1e0251 Contributor

There are reasons why your bloodwork could show negative. You could post the results here and see what responses you get. Waiting for the endoscopy is a good idea for you. Just remember that if your problem is gluten intolerance, the tests will all be negative even though you still have symptoms. Your dr can still dx you as gluten intolerant based on dietary response, if your testing continues to show negative. Hang in there, and keep on doing this step by step. Keep posting and we'll keep hoping for a good result for you.

happygirl Collaborator

Which blood tests were run for Celiac?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,162
    • Most Online (within 30 mins)
      7,748

    Jean Kemling
    Newest Member
    Jean Kemling
    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

    • DAR girl
      Looking for help sourcing gluten-free products that do not contain potato or corn derived ingredients. I have other autoimmune conditions (Psoriatic Arthritis and Sjogrens) so I’m looking for prepared foods as I have fatigue and cannot devote a lot of time to baking my own treats. 
    • Scott Adams
      I am so sorry you're going through this. It's completely understandable to feel frustrated, stressed, and disregarded after such a long and difficult health journey. It's exhausting to constantly advocate for yourself, especially when you're dealing with so many symptoms and positive diagnoses like SIBO, while still feeling unwell. The fact that you have been diligently following the diet without relief is a clear sign that something else is going on, and your doctors should be investigating other causes or complications, not dismissing your very real suffering. 
    • Oldturdle
      It is just so sad that health care in the United States has come to this.  Health insurance should be available to everyone, not just the healthy or the rich.  My heart goes out to you.  I would not hesitate to have the test and pay for it myself.  My big concern would be how you could keep the results truly private.  I am sure that ultimately, you could not.  A.I. is getting more and more pervasive, and all data is available somewhere.  I don't know if you could give a fake name, or pay for your test with cash.  I certainly would not disclose any positive results on a private insurance application.  As I understand it, for an official diagnosis, an MD needs to review your labs and make the call.  If you end up in the ER, or some other situation, just request a gluten free diet, and say it is because you feel better when you don't eat gluten.      Hang in there, though.  Medicare is not that far away for you, and it will remove a lot of stress from your health care concerns.  You will even be able to "come out of the closet" about being Celiac!
    • plumbago
      Yes, I've posted a few times about two companies: Request a Test and Ulta Labs. Also, pretty much we can all request any test we want (with the possible exception of the N protein Covid test and I'm sure a couple of others) with Lab Corp (or Pixel by Lab Corp) and Quest. I much prefer Lab Corp for their professionalism, ease of service and having it together administratively, at least in DC. And just so you know, Request a Test uses Lab Corp and Quest anyway, while Ulta Labs uses only Quest. Ulta Labs is cheaper than Request a Test, but I am tired of dealing with Quest, so I don't use them so much.
    • Scott Adams
      PS - I think you meant this site, but I don't believe it has been updated in years: http://glutenfreedrugs.com/ so it is best to use: You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
×
×
  • Create New...