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Testing When Gluten Free


one more mile

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one more mile Contributor

My doctor is from a different country and I could not follow him on this one.

I have been gluten free since July. I feel better and my whole family sees a big difference in me. Everyone I know does.

In three months when I do my other panels, my dr. wants to take tests -transglutaminase antibodies and gliaden antibodies( i can not really read his writing) he says that if i am Celiac these will show that I have the antibodies even though I am gluten free.

Is that true? I will be off gluten for about 9 months at that point.

I am unwilling to get sick again just so I can pass or fail some doctors test. That makes no sense to me.

One more mile


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ravenwoodglass Mentor

The blood tests will not pick up celiac if you have been gluten-free for that length of time. Did he do the panels before you started the diet? If so then the retest can show how much your numbers have gone down with the diet. Retests are often done to make sure that a person is dietarily compliant or to see if gluten is sneaking in somewhere. But for diagnosis after being gluten-free for that long they are worthless.

one more mile Contributor

That is what I though I had read here. He disagrees. He has a patient who is the head of a celiac group in the area and as her case may be very differnt from mine his information may point more to her. No medical test was done before I stopped eating gluten other then the home test --eat three pretzels and need a nap test. Oh well, I will just have to continue to get better and show him. lol.

thank you,

one more mile

ravenwoodglass Mentor
That is what I though I had read here. He disagrees. He has a patient who is the head of a celiac group in the area and as her case may be very differnt from mine his information may point more to her. No medical test was done before I stopped eating gluten other then the home test --eat three pretzels and need a nap test. Oh well, I will just have to continue to get better and show him. lol.

thank you,

one more mile

Show him this from the NIH if he doesn't believe the NIH I would find another doctor.

"Blood Tests

People with celiac disease have higher than normal levels of certain autoantibodies

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    • 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.?
    • Scott Adams
      You don't need an official diagnosis to request a gluten-free diet in either a hospital or nursing home--this can be requested by anyone. The higher costs associated with existing conditions for life insurance is a reality, and regardless of your politics, it could become a reality again for health insurance in the USA. For many this could make health insurance unaffordable, thus, everyone who is undiagnosed should understand such potential consequences before they go the official diagnostic route. As mentioned, once it's on your medical record, it won't go away.
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