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Need Advice From Those "in The Know"


Laynie

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Laynie Newbie

I have had rheumatoid arthritus for several years now which is, of course, an autoimmune disease. A couple of months ago blood tests from my GP came back as Iron Deficiency Anemia. He send me to a gastroenterologist who told me that 90% of the people my age (63) that were iron deficient anemic had bleeding problems. I was scheduled for a colonoscopy and an EGD (I think I got this right, it's where they run that camera down into your stomach and the beginning of the small intestine. All results were negative. Then I had a barium swallow, results were fine. I was scheduled for a test where you swallow a pill with a camera in it that takes 2 pictures a second through your entire intestinal tract. I could not swallow that thing, it kept hanging up and my gag reflex would send it shooting out. It was scary because I couldn't breath. After the third attempt, the nurse told me not to try again. Now my question is this, so far everything has come back OK. Bioposy from the start of the intestine did not show any celiac disease. But he hasn't done any blood work at all. I understand from what I'm reading that is the test that tells the whole truth. They are saying they can put me out and put that pill in my stomach because that's the only way they can see the entire small intestine. I'm thinking "why don't they do the blood work first and if it comes back positive, well there you go." I'm also thinking of going on the glutin free diet and seeing if my anemia improves. I also understand that if you have one autoimmune disease, you are likely to develop another which I'm thinking celiac. He even said in the beginning it could be celiac, but it was rare. Doesn't sound very rare to me with what all I've been reading. I guess I'm just asking for some opinions from people who know waaay more than me about this.


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ravenwoodglass Mentor

Your doctors work for you. Call them and tell them you want to pick up a lab slip for a celiac panel. Do be aware that both blood tests and biopsies do have a fairly high rate of false negatives. After all celiac related testing is done then do a trial of the gluten-free 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!
    • 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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