So here's my story...any help greatly appreciated

[cyclinglady]

5 minutes ago, ironictruth said:

"I was fine and then I wasn't".

Yup! 

I agree with cycling lady. Go get it checked. It may not go up after a few glutenings but have the old glidian tests done too. I never did. I  guess they are not reliable for diagnosis but good at measuring adherence to the diet. I read a bunch of articles on vagus nerve and celiac disease. I never had issues like this until I started my gluten challenge either. I was convinced they could not be related I'm still not a hundred percent sure. But it is the only thing that makes sense at this point. Keep following up with doctors if anything gets worse so that you don't automatically assume it's gluten. But just know that it can cause some wacky stuff, my brother is a confirmed Celiac and he had all sorts of issues. most of the doc's do not recognize this they just think that you should have abdominal issues only.

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

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I am not trying to be a know-it-all, but I'm posting this to help future celiac members! 

[Laura.D]

Oh you're not being a know-it-all at all! I really appreciate you sharing your expertise!

[cyclinglady]

1 hour ago, Laura.D said:

I actually had the celiac panel run last July and then also the colonoscopy/endoscopy, and was told it all came back negative, and since the doctors are all in the same health system around here, they don't seem to think they should run them again. Last week I did drive further away to a new health system though, so maybe they would redo the tests. 

So what?  That means you were gluten-free compliant and your celiac disease was not active (remission) last July.  Anything could have happened since then (and it obviously has).  Please find a celiac-savvy GI and keep every single record and document like crazy.  

Obviously your GI doctor is not following the standard level of care for celiac disease as recommended by the American College of Gastroentrology Association (same in Great Britain):

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Print this off and take it to your doctor (if you choose to go back).  Be sure to send him a separate letter or email asking him why when you are so ill, does he refuse to order another celiac panel to determine is your celiac disease is active again.   Also, please take someone with you on your doctor visits.  It helps when you have someone taking "notes".  You can be too sick to ask all the right questions.  

[Gemini]

10 minutes ago, cyclinglady said:

Researchers are not recommending the old Gliadin tests anymore because they have been replaced by the DGP tests.  The OP should request those.   The DGP tests are better for determining dietary compliance and can be just as good at making an initial celiac disease diagnosis.  

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I am not trying to be a know-it-all, but I'm posting this to help future celiac members! 

The older version of the DGP, the AGA or anti-gliadin antibody tests are fairly useful for both diagnosis and monitoring dietary compliance.  I know the DGP claims it is more sensitive but when I do repeat antibody testing every couple of years, I use Genova Labs because they were the labs where my blood work was done for diagnosis.  For the consistency thing and all.  What surprised me was that there was only a slight difference between the results for both.  I mean, like 1-2 points of difference, which is not much at all.  I  think you could really use either test for diagnosis or compliance but Genova uses both tests, which I found interesting and more unusual.  Maybe it catches more Celiac in people that way?

I think doctors need to be more consistent with Celiac testing and not do what they do with thyroid testing.....only using one test out of the panel.  They also need to stop using the tTg for dietary compliance!

[Laura.D]

Just to clarify, I never went back to that same doc after he acted like he didn't take my Celiac seriously, After he did the procedure and told me I was fine I decided not to go back, so it's not that he's outright refused to do it again, it's just that he was sure I didn't have Celiac Disease in his mind all along, so I just decided he wasn't going to be helpful. I started going to a new GI doc and he is in the same health system, I've only seen him once so far, and since he works in the same health system as the former doctor, he was just going off the previous doc's records and results instead of running new tests - but I haven't asked him to yet either. He mentioned at my visit that the only way to get accurate results would be to have me eat gluten for a month, which would probably make me pretty sick. I'm going to make a new appointment with him because he seemed to be the most helpful so far.