Okay, What Now?

[JenKuz]

All right, my blood tests came back negative. My interpretation is that under the best of circumstances this test is far more specific than sensitive, and false negatives are common.

Here's a question: I was gluten free for several months, and had only added back wheat two months before the blood tests. Even after adding wheat back, I have not eaten a lot of it. Some days I eat none; some days I may eat two or three slices of bread. Is this possibly why my tests came back negative?

Second question. I have a biopsy schedule for end of October. I asked if they could get me in earlier. If I got in earlier, what about my having been gluten free? Should I just pile on the bread pre-biopsy? Even though it makes me feel like I want to die? Or should I leave the biopsy schedule for when it's scheduled for to make sure I'm good and glutened before they test me?

I wish the doctor had called me himself so I'd know what to do. Maybe he will when they get the amebiasis tests in.

[Michi8]

All right, my blood tests came back negative. My interpretation is that under the best of circumstances this test is far more specific than sensitive, and false negatives are common.

Here's a question: I was gluten free for several months, and had only added back wheat two months before the blood tests. Even after adding wheat back, I have not eaten a lot of it. Some days I eat none; some days I may eat two or three slices of bread. Is this possibly why my tests came back negative?

Second question. I have a biopsy schedule for end of October. I asked if they could get me in earlier. If I got in earlier, what about my having been gluten free? Should I just pile on the bread pre-biopsy? Even though it makes me feel like I want to die? Or should I leave the biopsy schedule for when it's scheduled for to make sure I'm good and glutened before they test me?

I wish the doctor had called me himself so I'd know what to do. Maybe he will when they get the amebiasis tests in.

I would keep the biopsy date as is, and continue to eat gluten. I'm waiting for my own gastroscopy (endoscopy) at the end of November (I had negative blood tests as well)...as much as I'd like to give the diet a shot right now, I need to keep eating gluten for the test. Regardless of the results, I will be going gluten free after the endoscopy.

Michelle

[JenKuz]

Hi Michelle,

That's exactly how I feel. Definitely going gluten free after the biopsy, regardless.

[Ursa Major]

Hi Jen, and welcome to this board. Unfortunately, not only was your blood test likely negative because of being wheat free, your endoscopy will be a false negative as well. That is almost a given, and eating gluten right before the biopsy will be useless. Even eating it for two months probably won't help. Villi regenerate pretty quickly in most people, and the biopsy is pointless in anybody who has been avoiding gluten for even a couple of months.

If before a biopsy you haven't eaten gluten for at least six months (a year is better) and at least two to four slices a day, it will probably end up being negative.

I believe at this time, your only safe bet for positive testing would be enterolab. Open Original Shared Link

Sorry to be the bearer of bad news, apparently you're another victim of clueless doctors.