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Should I be screened for celiac disease?


jeffpine
Go to solution Solved by trents,

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jeffpine Newbie

Some Mod asked me about blood tests. Dr said no need, nowhere to go as I am gluten-free alreay.

He threw around terms like: TTG  2P DQH. not sure if it relates to gluten-free but he removed a polyp in 2022 and will recheck in 27. so my conclusion is that I am mostly gluten-free but not strict. Much obliged, Jeff

  • Scott Adams changed the title to Should I be screened for celiac disease?

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Scott Adams Grand Master

The doctor was correct--if you are gluten-free the blood panel for celiac disease will not work, you would need to go on gluten challenge in order to be tested.

Here is more info about how to do a gluten challenge for a celiac disease blood panel, or for an endoscopy:

Quote

"...in order to properly diagnose celiac disease based on serology and duodenal histology, doctors need patients to be on gluten-containing diets, even if they are causing symptoms, and this is called a "gluten challenge."

  • Eat gluten prior to celiac disease blood tests: The amount and length of time can vary, but is somewhere between 2 slices of wheat bread daily for 6-8 weeks and 1/2 slice of wheat bread or 1 wheat cracker for 12 weeks 12 weeks;
  • Eat gluten prior to the endoscopic biopsy procedure: 2 slices of wheat bread daily for at least 2 weeks;

and this recent study recommends 4-6 slices of wheat bread per day:

 

This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.

 

 

  • Solution
trents Grand Master
(edited)

TTG would refer to a blood antibody test. Not valid if you are already eating gluten free or mostly so. DQH would refer to a genetic test to see if you possess either or both of the two genes that have been connected most strongly to developing active celiac disease. The genetic test is more of a rule out measure than a diagnostic test as about 40% of the general population have one or both of those genes but only about 1% of the general population develops active celiac disease. If you don't have the genes but gluten causes you issues then the conclusion is NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. So, the genetic testing helps with a differential diagnosis. I don't know about the 2P. 2 Pairs of genes?

Edited by trents
  • 2 weeks later...
jeffpine Newbie

WOW WOW WOW, your site did it for me:

like this, i saw the ads for GliadinX and followed the product. There were several knockoffs. my engineer friend seperated them and found one at the local CVS at a bargain price. So yesterday I tried it. Twice. Lunch and dinner. works fine. Much obliged, 

trents Grand Master

@jeffpine, please realize that GliadinX is not designed to allow you to eat large amounts of gluten without celiac repercussions. It is designed to counteract cross contamination situations where you might be exposed to small amounts of gluten accidentally such as you might get in a restaurant when you order something that should be gluten free but it is cooked on the same grill with stuff that has wheat. Also remember that the absence of noticeable uncomfortable reactions doesn't necessarily equate to no damage happening to the small bowel lining.

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    • 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.?
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