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

Not Sure


Yoekie

Recommended Posts

Yoekie Apprentice

I've been glutenfree since beginning of december, since diagnosed with gluten/egg/lactose intolerance and leaky gut. The doctor who told me so, didn't think I could be celiac and didn't think it was useful to get it checked. But I do, so I went to a GI for a second opinion and he thought I might be celiac and he immediately had a bloodtest done on me. The one in december had shown 'specific IGg' but obviously he didn't think that was valuable or enough information. Now I wonder if this last blood test won't be influenced by the fact that I'm glutenfree for over a month now...

It's important because based on the results, he'll take the decision if a biopsy is needed to see if I'm celiac.

Also: I don't know yet if I'll have to have a biopsy, so what do I do? Stop eating glutenfree?? But I hear it's not good to switch too often... so maybe I shouldn't as long as I'm not sure I'll have a biopsy. How long before do you have to start eating gluten?

Yoekie


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



Celiac.com Sponsor (A8-M):



RiceGuy Collaborator

I've read that the suggestion is to be consuming gluten for at least six weeks before a biopsy. Some say longer. If you decide to eat gluten again, and if it makes you feel awful, then you're next decision will be whether to listen to the doctors, or to your body.

However, Enterolab claims to be able to test up to a year after starting the gluten-free diet. There are other labs doing testing too, though I haven't seen their claims. Perhaps others will chime in with comments on them.

Whatever you do, I hope it works out for the best!

leadmeastray88 Contributor
However, Enterolab claims to be able to test up to a year after starting the gluten-free diet. There are other labs doing testing too, though I haven't seen their claims. Perhaps others will chime in with comments on them.

Please take note though that Enterolab cannot diagnose Celiac disease. It can only detect active dietary gluten sensitivity by stool sample.

Enterolab can find gene markers for Celiac, but this in itself is not a diagnosis.

What you should do is really up to you. Do you feel better gluten free? If you do, then you know gluten is a problem for you. Now you need to make a decision, is your reaction to gluten enough to make you stick to the diet? Or do you really need a diagnosis to be sure? Some people here are self-diagnosed and are comfortable with that decision.

If you DO want the biopsy, you need to be eating gluten. How much and for how long is up for debate, there is no 'handbook' for this. Considering you have only been gluten-free since December I'd say a few months should be enough.

Hope that helps :) Good luck!

Yoekie Apprentice

I do not feel better glutenfree. But I've had to make many dietary changes at once so it's difficult to know what glutenfree in itself is doing for me. Hence the confusion, I thought it would be good to have a biopsy done, but as I'm reading on the board, I came to understand a negative result is no total exclusion of celiac?

RiceGuy Collaborator
I do not feel better glutenfree. But I've had to make many dietary changes at once so it's difficult to know what glutenfree in itself is doing for me. Hence the confusion, I thought it would be good to have a biopsy done, but as I'm reading on the board, I came to understand a negative result is no total exclusion of celiac?

That is correct - a biopsy cannot rule out Celiac. Plus, it is possible to be gluten intolerant, and not Celiac, although the diet is the same either way.

I would add, that it can take a while to see improvement. It was six months before I noticed any real change on the gluten-free diet. Then it became quite obvious. I did not seek any "official" diagnosis.

Can you outline your symptoms?

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,161
    • Most Online (within 30 mins)
      7,748

    DAR girl
    Newest Member
    DAR girl
    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

    • 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/   
    • trents
      A lot to think about here. Does anyone have any recommendations for third party laboratories that will do full panel celiac screens private pay in the U.S.?
×
×
  • Create New...