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I Need Advice-no Memory Of Symptoms


Deanna

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Deanna Newbie

My parents and pediatrician self-diagnosed me when I was 18 months old after I had digestive problems but I never had any formal testing done such as a biopsy or blood test. Now I'm about to be 23 and have been on the gluten-free diet for as long as I can remember but throughout my teenage years and even until recently I've been eating more and more foods that contain gluten. My problem is that I can't remember ever having symptoms of gluten intolerance/celiac disease. I'm a perfectly healthy person even when I don't eat a strict gluten-free diet. I've never went all out on a full gluten diet but I'd figure I'd have at least some symptoms that I can remember?

Should I get formally diagnosed by a GI? Should I try a full-gluten diet for a while to see how I feel? I don't want to harm myself but testing is very expensive.

Thanks for any advice...


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kathy1 Contributor

You can have celiac disease with no symptoms. My husband does. The only way to know is a test. Since you have been eating some gluten items,I am guessing testing should be accurate. I don't know the cost though. At least that way you will know for sure.

nikki-uk Enthusiast

Just remember that to get a positive blood test you have to have been eating a full gluten diet for at least 6 weeks.It takes that long to produce the antibodies :)

Guest Viola

Also .. Celiac symptoms tends to go dormant during the teen years into the early 20s. My doctor thinks it has something to do with hormones, however damage to the intestine is still found.

But if you want to get tested, go on the gluten diet I believe for at least 6 to 8 weeks. And I think it has to be a fairly heavy gluten diet.

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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!
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      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/   
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    • 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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