Waiting for the biopsy results

[aizzo]

My troubles began three years ago, when I began experiencing bouts of loose stools everyday, 5 to 6 times a day. People began to tease me at work I was running that often. I had been experiencing headaches also, but to be honest, I blew this off as stress and dealt. 

May 2021, I was experiencing pain around my bellybutton and right side and pain in my sternum. I began seeing a chiropractor, thinking maybe my stress was causing my pain. Then, on my birthday I visited an indian resturant for some of my favorite spicy food. On the way there I was experiencing nausea and by the time I got there and finished 2 bites of the chicken tika paneer I ordered and couldn't finish my meal or eat anything solid for several days following. I can't explain this feeling I had, I just lost my appetite.  

After several days of this I visited the family doctor. She refered me to a gastroenterologist who ran the gambit of tests. My suspicion was IBS or something related and celiac wasn't even on my radar. 

He ordered blood tests, but my numbers didn't indicate celiac at the time. The doctor went ahead and ordered a colonoscopy and endoscopy.  I had my procedure Monday. My colonoscopy was fine, no indication of anything off, however my endoscopy showed signs of erosions in the stomach compatible with erosive gastritis, erosions in the gastric body and erythema in the duedenal bulb. The second part of the duodenum was fine. He biopsied everything and told me while in recovery (though this is fuzzy, why do they tell you important info when you're coming out of anesthesia?) That they were checking for h. Pylori and celiac and this was most likely do to NSAID overuse. I remember thinking, but I don't take ibprofen that often! 

After my procedure I began looking into gluten sensitivity and celiac and my syptoms seem to make more sense, but I know I must wait for the biospy. 

My blood test was taken when I was not eating solid food for about a week and a half, and I have since read that you need to be consuming gluten for it to show up. I'm conserned that the doctor never told me that before I scheduled the appointment.  

My tissue transglutaminase (tTG) Ab IgA u/mL value was <2

I continue to have bouts of the following:

diarrhea, constipation, headache, nausea, decreased appetite, weight loss and still going, exhaustion,  severe anxiety,  panic attacks that have upticked recently, depressuon, sores on tongue, niggt sweats, pain that radiates to my hip and around my back when having a bowel movement, pain on top of stomach and right side after eating, scaly skin rashes on face and ear and sometimes a faint rash on my belly. 

I tested pasta and bread yesterday and went to bed with a killer headache and woke up with gas pain amd the feeling of having to have a bowel movement. This reminded me that I've always had what I thought was a carb problem my whole life. I usually get headaches and feel like trash if I eat too many bad carbs, like bread and pasta which makes me wonder.

Is it possible that the biopsy of the duodenum will confirm for sure if I have this or not? I'm exhausted and hope that this will bring the final answer so I can move forward with a plan. Waiting has always been hard for me.

[trents]

It is possible that you have NCGS (Non Celiac Gluten Sensitivity) which has most of the same symptoms as celiac disease and most of the same health risks but for which there is currently no diagnostic test. It is diagnosed based on symptoms and if symptoms improve when eating gluten free.

[Scott Adams]

I do find it odd that your gastroenterologist seems to already be trying to explain away what he may have seen by bringing up NSAID's. It's also bad that they didn't mention the need to be eating gluten daily for at least 2 weeks before the endoscopy.

In any case, let us know how that goes, but I think @trents is correct, at the very least it does sound like non-celiac gluten sensitivity, and if your symptoms go away on a gluten-free diet it pretty much confirms it.

At this point you may want to ask your doctor if it's ok for you to go gluten-free now, as it sounds like you've done all the tests for celiac disease (although they should have done more on the blood panel...did they only do tTG?).

[aizzo]

9 hours ago, trents said:

It is possible that you have NCGS (Non Celiac Gluten Sensitivity) which has most of the same symptoms as celiac disease and most of the same health risks but for which there is currently no diagnostic test. It is diagnosed based on symptoms and if symptoms improve when eating gluten free.

Thats interesting and something I've only recently learned about. Thank you! I will bring this up when the doctor calls with my results. 

[aizzo]

3 hours ago, Scott Adams said:

I do find it odd that your gastroenterologist seems to already be trying to explain away what he may have seen by bringing up NSAID's. It's also bad that they didn't mention the need to be eating gluten daily for at least 2 weeks before the endoscopy.

In any case, let us know how that goes, but I think @trents is correct, at the very least it does sound like non-celiac gluten sensitivity, and if your symptoms go away on a gluten-free diet it pretty much confirms it.

At this point you may want to ask your doctor if it's ok for you to go gluten-free now, as it sounds like you've done all the tests for celiac disease (although they should have done more on the blood panel...did they only do tTG?).

Yes, from the very beginning hes been down playing my symptoms to simple things. At first he was telling me I needed to get my anxiety under control because he found my blood tests and ultrasound were unremarkable even though my CBC came back abnormal with high eosinophil count. He told me they didn't show any signs of inflammation. He actually told me he'd be surprised if he found anything during my colonoscopy and endoscopy, which maybe he thought would make me feel better.  But in truth, it made me feel worse. After my procedure, and when he pulled the NSAID card and it just served to make me feel worse.

I had the following blood test, but im not sure which would indicate celiac, if I do indeed have it.

CBC with auto diff - thos is where my eosinophil percentage was 7.2

Basic metobolic panel - glucose was 100. 

Tissue transglutaminas 

IGA

C-reactive protien

CBC with differential 

Lipase

Hepatic function panel - total bilirubin was low at .2

I'm not sure what all these tests show, but I just hope with all the stories of misdiagnosis that hes paying attention to the details and not jumping to conclusions.  Thats my job! Lol

Thank you for your advice in this matter. I really appreciate it greatly!

[trents]

Tissue trasnsglutaminase (TTG-IGA) would be the only one in that list that would be useful for celiac disease. And there are other celiac antibody tests that should have been run.  What was the value for that test? And what is the lab's reference range? It would also be good to know what the value of the IGA is and it's reference range. Low total IGA can cause negatives test values in a celiac antibody panel.

[aizzo]

On 6/24/2021 at 7:17 AM, aizzo said:

My troubles began three years ago, when I began experiencing bouts of loose stools everyday, 5 to 6 times a day. People began to tease me at work I was running that often. I had been experiencing headaches also, but to be honest, I blew this off as stress and dealt. 

May 2021, I was experiencing pain around my bellybutton and right side and pain in my sternum. I began seeing a chiropractor, thinking maybe my stress was causing my pain. Then, on my birthday I visited an indian resturant for some of my favorite spicy food. On the way there I was experiencing nausea and by the time I got there and finished 2 bites of the chicken tika paneer I ordered and couldn't finish my meal or eat anything solid for several days following. I can't explain this feeling I had, I just lost my appetite.  

After several days of this I visited the family doctor. She refered me to a gastroenterologist who ran the gambit of tests. My suspicion was IBS or something related and celiac wasn't even on my radar. 

He ordered blood tests, but my numbers didn't indicate celiac at the time. The doctor went ahead and ordered a colonoscopy and endoscopy.  I had my procedure Monday. My colonoscopy was fine, no indication of anything off, however my endoscopy showed signs of erosions in the stomach compatible with erosive gastritis, erosions in the gastric body and erythema in the duedenal bulb. The second part of the duodenum was fine. He biopsied everything and told me while in recovery (though this is fuzzy, why do they tell you important info when you're coming out of anesthesia?) That they were checking for h. Pylori and celiac and this was most likely do to NSAID overuse. I remember thinking, but I don't take ibprofen that often! 

After my procedure I began looking into gluten sensitivity and celiac and my syptoms seem to make more sense, but I know I must wait for the biospy. 

My blood test was taken when I was not eating solid food for about a week and a half, and I have since read that you need to be consuming gluten for it to show up. I'm conserned that the doctor never told me that before I scheduled the appointment.  

My tissue transglutaminase (tTG) Ab IgA u/mL value was <2

I continue to have bouts of the following:

diarrhea, constipation, headache, nausea, decreased appetite, weight loss and still going, exhaustion,  severe anxiety,  panic attacks that have upticked recently, depressuon, sores on tongue, niggt sweats, pain that radiates to my hip and around my back when having a bowel movement, pain on top of stomach and right side after eating, scaly skin rashes on face and ear and sometimes a faint rash on my belly. 

I tested pasta and bread yesterday and went to bed with a killer headache and woke up with gas pain amd the feeling of having to have a bowel movement. This reminded me that I've always had what I thought was a carb problem my whole life. I usually get headaches and feel like trash if I eat too many bad carbs, like bread and pasta which makes me wonder.

Is it possible that the biopsy of the duodenum will confirm for sure if I have this or not? I'm exhausted and hope that this will bring the final answer so I can move forward with a plan. Waiting has always been hard for me.

My results came back today and there was no evidence of celiac in the biopsy. Unfortunately, they still don't known what's caused this, but I'm going to pursue an elimination diet to rule out gluten sensitivity as you've all suggested. Thank you for the support and good advice!