Seronegative; What Should I Tell My Gastroenterologist?

[0range]

Hi everyone.

I am planning to do an endoscopy later this summer, just for peace of mind. I am still undiagnosed, and have been tested negative on the Ttg-IgA on three separate occasions over the past year and a half. At this point, I am not sure if it's even celiac anymore but just want to rule it out. I am usually anemic but my levels have been improving with iron supplement, my liver tests were fine and my thyroid levels have been quite stable for the last year (only a slight expected increase in dose) for me to really think there's anything going wrong with my absorption. However, I'm not sure if my gastro will be on board with this if my celiac test is not positive. Are there any studies or otherwise I can link to that would justify an endoscopy? I have intermittent diarrhea, acid reflux, fatigue, excessive muscle twitching, and peripheral neuropathy as my current symptoms currently.

Thank you! 

[LauraTX]

Just tell your GI your acid reflux is really bad lately and you feel like something is going on... upper endoscopy is useful in diagnosing stomach pain.  Only if you need leverage, of course.  You are not currently eating gluten-free, right?  If you feel like the doctor would be receptive to research papers, you can present him/her with some printouts.  But I would think many doctors would be offput by that.   Just telling them you feel something is really wrong in your stomach area and that you'd really like it to be looked into... that should help their decision to do an endoscopy. 

[ravenwoodglass]

If you only had the IGA tests did they run a total IGA on you? You may be IGA deficient and if that is the case it would cause a false negative on the IGA Celiac tests. If all they did was run that one test you should ask your doctor to run a full panel.

[IrishHeart]

You can tell him this latest research

 

"6-22% of cases of celiac disease are seronegative. This means that between 6-22% of people with celiac disease do not have abnormally high antibodies on celiac blood screening tests but do have abnormal small intestinal tissue on biopsy."

 

Ludvigsson J, Bai J, Biagi F, Card TR, Ciacci C, Ciclitira PJ, Green P, Hadjivassiliou M, Holdoway A, van Heel DA, Kaukinen K, Leffler DA, Leonard JN, Lundin KE, McGough N, Davidson M, Murray JA, Swift GL, Walker MM, Zingone F, Sanders DS; Authors of the BSG Coeliac Disease Guidelines Development Group. Diagnosis and management of adult coeliac disease: guidelines from the British Society of Gastroenterology. Gut. 2014 Jun 10. pii: gutjnl-2013-306578. doi: 10.1136/gutjnl-2013-306578. [Epub ahead of print]

 

Open Original Shared Link

 

Our own Jebby (aka Jess, an MD) wrote this summary of the latest research.

 

It's not the 40% people have been saying on here, but it is still a significant number.

 

I would also mention that if you have been gluten-free for a while, none of these tests would  be very accurate, hon. 

[nvsmom]

Ditto the other ladies.  They give great advice.

 

I did want to add that the endoscopic biopsy only requires 2-4 weeks of the equivalent of 1-2 slices of bread per day to get the most accurate results (which will catch about 80% of celiacs). You could probably go gluten-light or maybe even gluten-free, for a while if your symptoms are getting extreme.

 

If you think you can get more blood tests run, besides the tTG IgA, when you go for your endoscopy, then do not go gluten-light or gluten-free yet.

 

You might want to ask for the DGP IgA and DGP IgG. There are some celiacs who are positive in these tests while negative in the tTG IgA.  This is seen more often in children, but I am guessing that it is because it is due to it being an early case and the tTG IgA antibodies haven't reached a high enough level yet.  The tTG IgA misses (approximately) between 5 and 25% of celiacs according to this: Open Original Shared Link and Open Original Shared Link[tt_news]=172034

 

If you end up with all negatives or have no further testing options, you might want to think about going gluten-free for a good 6 months in order to see what the diet can do for you.  I would guess that at least 10% of the people around here do not have an official diagnosis because of negative tests or aborted gluten challenges.  At least. I would bet that a good 50% of us did not do all the tests or had at least one normal test.

 

Best wishes.