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Confused About Test Results


wanting to feel good again

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wanting to feel good again Newbie

I have been suffering from fatigue of unknown origin for many years now. I have been to several different specialists and had numerous tests done with no answer. I had digestive issues prior to and following the removal of my gallbladder (it was non functioning). The digestive issues have recently gotten extremely worse - mainly extreme nausea and diarrhea. I was eating Imodium and Zofran like candy so I finally talked to my family practitioner. She treated me for reflux and said I would need to do CT scans and stool studies if things didn't clear up. I don't know what got me thinking about gluten intolerance but I did research and saw that fatigue was a symptom along with others I have been dealing with. So I asked her if that could be possible and she wasn't sure but thought it wouldn't' hurt anything to run the tests. So I had the blood work done.
She said I do not have celiac disease, only non-celiac gluten intolerance.
However, the test results are bothering me. My tTG IgA results were 8 - which was weak positive based on how they are analyzed: Negative is 0-3; Weak Positive is 4-10 and Positive is >10.
They also did tTG IgG, Endomysial Antibody IgA (EMA), Immunoglobulin A QN Serum, Deamidated Gliadin Abs, IgA and IgG; All these tests were NEGATIVE based on the results.
She told me that my labs would have looked different, including blood count (which was normal), if I in fact had celiac disease.
I am just really confused based on different things I have read, and I was just wondering if there is anyone out there who might have an opinion.

Thanks!


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    • cristiana
      It's strange because I'm pretty sure not too long ago I picked up a loaf of bread with B vitamins, but I can't find a single one now.  Probably cutbacks, everyone's trying to save money now!
    • Scott Adams
      Eating grains typically depletes certain B vitamins, so I'm not sure why they decided to fortify with calcium and iron, but hopefully we'll see more B vitamin fortification in gluten-free products going forward.
    • Rogol72
      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
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