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Gluten Sensitive? Neg Test Results


birdie22

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birdie22 Enthusiast

Could I still be gluten sensitive with few symptoms and normal test results?

About a year ago (about 6mos after the birth of my 2nd child) I started having daily heartburn. I attributed to hormone fluctuations. In Sept 2010 I had the Mirena IUD inserted and a month or so later started having severe bloating episodes a few times a month, I was also having cyclical headaches, extreme fatigue and canker sores. After about 9mos I had the Mirena removed thinking that it was causing these symptoms. A few months after removed the symptoms continued. The bloating seems to happen about once a week or 1-2x's every other week. The canker sores happen at least monthly. The bloating makes me look pregnant and I feel great discomfort right under my rib cage. The heartburn I notice most at the base of my throat. It isn't severe, but noticeable. Since the symptoms hadn't resolved I took up the issue with my GP. She had me do a 6wk trial of prilosec and an upper GI to rule out GERD and hernia. Prilosec corrected the heartburn, but not the bloating. Upper GI was normal. Had blood tests for liver profile, CA 125, anti-tTG IgA and IgA. All results were normal.

Anti-tTG IgA was <10 (reference range 0-19)

IgA was 221 (reference range 70-400)

Since those tests were normal but discomfort continued I had an abdominal CT done. Results were also normal (aside from a few incidental benign findings).

GP suggested a trial of elimination diet. She first had me do only chicken, rice, banana for a week then slowly add in veggies, meats, dairy, gluten, etc. Right now I am doing gluten-free, but have added in everything else.

Could I be gluten sensitive if only symptoms seem to be bloating that gets worse as day progresses and resolves overnight, plus monthly canker sores? My GI health is otherwise normal. I'm not constipated, nor do I have diarrhea. No cramping. No painful gas. Just stomach bloating that is visible and uncomfortable.


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nora-n Rookie

The most common form of celiac nowadays is patchy celiac, and the ttg test is known to only be close to reliable with total villous atrophy. even then it misses 20% or more (depending on how hight the trhreshold in the lab is set) of those with severe celiac.

With patchy celiac, only 40% will test positive.

Now the newest test, the deaminated gliadin test, is much better at picking up patchy celiac.

chrissyinnj Apprentice

Also, I have read on several sites (plus my lab) now that the AGA (anti-gliadin antibody) is an indicator of gluten sensitivity (NCGS) You might want that test run as well.

My son's results were negative for the celiac tests and strong positive for the AGA. (He was back on gluten for 9 weeks when the test was run). The lab noted that it was an indicator of gluten sen and he may want to try a gluten free diet. btw- He had responded to the gluten-free diet before we decided to run the tests.

birdie22 Enthusiast

Thank you for those two suggested tests. I am assuming that as with the other tests I would need to have gluten in my diet at the time of testing?

nora-n Rookie

Yes you would still need to eat gluten, but the IgG versions of these antibodies often hang around much longer, up to a year. I can

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    • Samanthaeileen1
      thank you RMJ! That is very helpful advice. Good to know we aren’t crazy if we don’t do the endoscopy. We are going to try the gluten free and see how symptoms and levels improve.    thank you Wheatwacked (love the username lol) that is also reassuring. Thankfully she has an amazing and experienced pediatrician. And yesss I forgot to mention the poop! She has the weirdest poop issues.    How long did it take y'all to start seeing improvement in symptoms? 
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    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
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