Positive bloodwork, negative biopsy

[Moll]

Hello! I’ve struggle with GI issues for years. No doctor ever listened. Until I couldn’t keep my iron levels up and received two infusions. My hematologist did bloodwork for celiac and it came back positive. I had a biopsy last week. Afterwards, my doctor came in and said she’s positive I have celiac disease but to wait for results. RESULTS WERE NEGATIVE. what the heck do I do now? I can’t ignore these symptoms. I have a screen shot of my bloodwork. I do have esophagitis and gastritis. Lost of erosion from reflux. I’m unsure where to go from here. All my GI doctors letter said wait to follow up with my primary care provider. What the heck! Can anyone help? 

[Moll]

I need to add: I do have a diagnosis for an auto immune disease (hashimotos). Is there a way to provide a screenshot of my bloodwork?

[plumbago]

7 minutes ago, Moll said:

I need to add: I do have a diagnosis for an auto immune disease (hashimotos). Is there a way to provide a screenshot of my bloodwork?

Yes, you can - but I would strongly encourage you to do so in a way that your name and date of birth (and any other identifying features) are omitted from the screen shot. Just copy and paste your results and save it to your desk top or something, then insert it into a reply here. But again, do it in a way so that your identity is hidden.

From your original post, I would strongly suspect that you do have celiac, but fortunately, the biopsies they took do not (yet) show villous atrophy. That's good! It could also mean that you have atrophy in other parts of the intestines that were not sampled - it's not really possible for me to know. Try to post your blood work and we can comment more.

Plumbago

[Moll]

Here are my bloodwork results:

tissue transglutaminase antibodies IGA quantitative : <0.5

gliadin (deamidated) antibody IGA quantitative: 26.8 (labeled as “high” on my bloodwork results)

tissue transglutaminase antibodies IGA Qualitative: negative

gliadin (deamidated) antibody IGA qualitative: positive (labeled as “abnormal” on my bloodwork results)

[Scott Adams]

I would still go gluten-free to see if your symptoms improve. To me it seems they caught it early, before your gut was damaged. It's also possible that the gastro doctor made some errors during the sample collection and/or interpretation. Did they give you a Marsh score? This typically is done on the biopsy specimens when looking for celiac disease.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

[Moll]

15 minutes ago, Scott Adams said:

I would still go gluten-free to see if your symptoms improve. To me it seems they caught it early, before your gut was damaged. It's also possible that the gastro doctor made some errors during the sample collection and/or interpretation. Did they give you a Marsh score? This typically is done on the biopsy specimens when looking for celiac disease.

Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.

I just double checked and found no mention of a Marsh score. She put me on protonix twice a day for 8 weeks and then once a day after that. I started gluten free the day after the endoscopy. So far I still feel bad but I know it takes time. I just can’t stand being dismissed when I clearly have something going on. I’m sticking to gluten free for a while for good measure. Blah! 

[Scott Adams]

I think your approach makes sense. Feel free to share your blood test results if possible. You can share images here but just make sure no personal info is contained in them.

[trents]

1 hour ago, Moll said:

I just double checked and found no mention of a Marsh score. She put me on protonix twice a day for 8 weeks and then once a day after that. I started gluten free the day after the endoscopy. So far I still feel bad but I know it takes time. I just can’t stand being dismissed when I clearly have something going on. I’m sticking to gluten free for a while for good measure. Blah! 

Don't take that PPI or any other PPI long term if at all possible. Changing the pH like that in the gut creates its own nutrient absorption problems.

[Moll]

11 hours ago, Scott Adams said:

I think your approach makes sense. Feel free to share your blood test results if possible. You can share images here but just make sure no personal info is contained in them.

My bloodwork is posted above 🤗 

[Moll]

11 hours ago, trents said:

Don't take that PPI or any other PPI long term if at all possible. Changing the pH like that in the gut creates its own nutrient absorption problems.

I was concerned with taking it for too long. I definitely want my gut to heal from the reflux so I’ll take it for the 8 weeks and re-evaluate. Definitely requesting a follow up appointment. I feel kind of dismissed and thrown to the wolves in this whole situation. 

[Scott Adams]

7 hours ago, Moll said:

My bloodwork is posted above 🤗 

Got it! With the two positive blood tests I would consider myself a celiac, and it's likely that you caught it early before your villi were damaged. This is just my interpretation, and I think you should go gluten-free for sure. 

[Moll]

4 hours ago, Scott Adams said:

Got it! With the two positive blood tests I would consider myself a celiac, and it's likely that you caught it early before your villi were damaged. This is just my interpretation, and I think you should go gluten-free for sure. 

Thank you! I appreciate your replies.