Test Results - would appreciate some advice.

[Bailey.]

Hi! Thank you in advance for reading.

 

So around august 2020 I started having almost nonstop gas, abdominal pain, and soft stools with a lot of undigested food. I was also losing weight and was the lightest I’ve been in years (I’ve since gained it back as my appetite became voracious). This went on for the rest of the year, although it has calmed down a bit by now. In November I went to a GI who sent me for a celiac panel which included Endomysial antibody (negative), TtG (4, weakly positive), and IgA (116). Negative for fecal fat. Due to being weakly positive the Dr had me test for HLA which I was positive for HLA DQ2. I never ended up going to my follow up appointment because I decided to find a different GI, as he was not very nice and didn’t take my symptoms seriously. So as of now I have not discussed my results with a doctor.

 

I’m not sure what to think of my results. After some research I found that before a celiac panel you’re supposed to do the “gluten challenge”. I have no idea how much gluten I was eating the weeks leading up to the panel so maybe it was inaccurate? I know it’s possible to still get reactions from gluten but not be eating enough gluten to show up on the antibody bloodwork. I feel that since it’s weakly positive it may not be necessary to get the biopsy, as my main symptoms did not start until this year and thus I’m not confident enough damage would be done to get a positive biopsy (if I truly do have celiac).
 

Should I just let it go? Try again in year? Or if you were me would you get the biopsy? 

[GFinDC]

Hi Bailey,

You are right, the celiac antibody test are not reliable if you are not eating gluten daily for 6 to 8 weeks before them.  The endoscopy can be done after 2 weeks of eating gluten though.  So maybe it makes sense to do the endoscopy?  You need to eat about a slice of wheat bread or the equivalent daily before testing.  Often an endoscopy is scheduled for 2 or 3 months after the positive blood antibodies test.  GI's are kind of busy and don't have schedule openings right away sometimes.

[trents]

You may be in the beginning stages of celiac disease or have gluten intolerance or gluten sensitivity. I would also suggest you consider SIBO. This is a good watch as well for understanding the importance of acting early on autoimmune conditions: 

So another option would be to do a gluten free trial and see if your symptoms improve. It would require some education about how and where gluten is found in the food supply and making a concerted effort to not just cut down on gluten but to eliminate it, even small amounts from cross contamination.

Edited January 12, 2021 by trents