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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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      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
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