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

Testing Question


mistresninos

Recommended Posts

mistresninos Rookie

We are still in our testing phase. The specialist claimed the paed did not order the correct testing for Celiac. <_<

Anyway, we are going back to a different specialist but at the same office on Wednesday so I've been doing some more research because we still have no difinitive answer (the lab has not returned the results of the last tests).

I ran across this article Open Original Shared Link . In it the author says, "There is no test yet which is definitively diagnostic of celiac disease. Relief of symptoms or reversion of an abnormal intestinal biopsy to normal on a gluten-free diet is the most convincing evidence that an individual has celiac disease or gluten sensitivity."

Is this simply old information? I am wondering because we have placed our son on a gluten-free diet and he has improved nearly 100%. Whenever we waver from that diet in any way, even to wheat-free foods, his symptoms return.

Thanks so much for any information on this.


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



Celiac.com Sponsor (A8-M):



debbiewil Rookie

None of the current tests are perfect. The blood tests can indicated celiac, and testing positive on more that one is highly significant. If the biopsy shows villi damage, especially with positive blood tests, then celiac will probably be diagnosed. There are one or two other things which can cause villi damage, though, but they are very rare.

Also, if you (or your son) is already on a gluten free diet, then that can mess up the test results. The tests are most likely to be false negative. You usually have to be eating gluten on a regular basis for a long time in order for the tests to be positive.

Debbie

Rae Apprentice

I lost hope in a lot of doctors. I had positive bloodwork for celiac disease, but my doc said everything looked fine in my endo/colon (which i took today), she just has to test the biopsy. It may just be that your son is gluten sensitive and does not have celiac disease- beware I am not a doc, just giving you my opinion- but that what my doc told me. And sometimes test will turn up negative- especially when your son is on a gluten-free diet. My advice is to do whatever makes him feeling better- if the diet work then continue, regardless if docs say he doesnt have celiac disease. Make sure you check for everything possible, get 2nd opinions. good luck!

VydorScope Proficient

Okay, heres the simple deal... if your child gets better with gluten-free, and worse when he gets gluten that is diagonostic enough.

A full blood panel and biposy could confirm that, but ONLY IF YOU DO NOT PUT HIM ON THE GLUTEN FREE DIET. You siad he is currenlty on the diet, so his test will not be usefull.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,163
    • Most Online (within 30 mins)
      7,748

    Estee
    Newest Member
    Estee
    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...