Endoscopy done! Gastritis?

[Tall Holly]

Had my endoscopy today which showed gastritis. I had gastritis at my 2018 endoscopy as well. I didn’t know you could have it for 5 years! 2018 edg also showed increased IEL’s but no atrophy, so no dx of celiacs (but just found out last month that it probably means I have ncgs). Only one spot biopsied in 2018 so I asked how many he would take today since there were still suspicious of celiac disease. He told me they would take “a bunch” but it was only three.

I did blood work last week and I am waiting on the results. I am half dq2 but with homozygous dqb1*02*01 which I think makes celiac possible. 

Im so tired of waiting for answers! I’m going to assume it’s ncgs and move forward accordingly. How strict do I need to be with cc if I show the increased IEL’s but not celiac? Do I need my own toaster and stuff still? 

[ravenwoodglass]

You need to take all the same precautions with NCGS as you do with celiac.

[Tall Holly]

3 minutes ago, ravenwoodglass said:

You need to take all the same precautions with NCGS as you do with celiac.

Thanks. There is so little information out there. I assumed it wasn’t nearly as restrictive. You know what they say about ASSuming. 

[Scott Adams]

There are celiac disease experts who believe that NCGS is a pre-celiac stage, and it could end up in full blown celiac disease if those affected continue eating gluten.

[Tall Holly]

Thanks guys. I am still waiting on my blood results... it's been 9 days! The last time I had it done in 2018 it only took 5 days but it was negative. I'm wondering if a trigger/reflex test takes longer if there is a positive. I'm just tired of waiting!

[Scott Adams]

Let us know!

[Tall Holly]

31 minutes ago, Scott Adams said:

Let us know!

No word on the blood test but the biopsy did come back! Both the duodenum and the bulb showed increased IEL’s again with normal villi. I really wish the doctor would have taken more biopsies. 
 

I also looked at my ast and alt- they have doubled in the last year but are like a point under being out of range. So still normal at this time. Who knows what’s going on. I don’t think the tTg iga will be positive if the villi are ok. 

[Scott Adams]

Let us know about the blood tests. How many biopsy specimens did they take? The protocol for celiac disease is a minimum of 4, but usually 6.

It's also possible that you have non-celiac gluten sensitivity, which around 10x more people have than celiac disease, and the outcome is the same anyway--a gluten-free diet. If all tests end up negative, then perhaps just try a gluten-free diet for a few months to see if it helps?

 

[Tall Holly]

On 5/6/2023 at 4:20 PM, Scott Adams said:

Let us know about the blood tests. How many biopsy specimens did they take? The protocol for celiac disease is a minimum of 4, but usually 6.

It's also possible that you have non-celiac gluten sensitivity, which around 10x more people have than celiac disease, and the outcome is the same anyway--a gluten-free diet. If all tests end up negative, then perhaps just try a gluten-free diet for a few months to see if it helps?

 

Only two biopsies. However, I was able to go to Mayo Clinic for a second opinion. I just saw them on Monday and have a good plan! They diagnosed me with NCGS based on my current biopsy reports and blood tests. However, they are repeating the endoscopy and adding a colonoscopy. I'll get that done on May 31st! They also believe I have post-infectious IBS from my Covid bout in January. 

I've been gluten-free since April 26th, but did have one waffle on May 2nd. Mayo said to go ahead and stay gluten-free for now, it will be interesting to see if the IEL's and gastritis are gone after a month of being gluten-free. I'm still not feeling great though but hopefully will be soon. 

[Scott Adams]

To me it seems very strange that the Mayo Clinic would let you stay gluten-free before doing an endoscopy for celiac disease. Normally you need to eat gluten daily during the two weeks leading up to this. I would ask them again about this, as it breaks standard protocol.

[Tall Holly]

1 minute ago, Scott Adams said:

To me it seems very strange that the Mayo Clinic would let you stay gluten-free before doing an endoscopy for celiac disease. Normally you need to eat gluten daily during the two weeks leading up to this. I would ask them again about this, as it breaks standard protocol.

I think it's because they aren't checking for celiac anymore. Since both of my endoscopies came back the same 5 years apart (gastritis and increased IEL's) and two rounds of celiac blood work came back negative. I also have good iron levels which indicate not being celiac from what they explained. They were just miffed that the old clinic did not do a colonoscopy if part of my issue is severe diarrhea and pain. They said it was warranted and should be checked out. If they were already going to do that anyway, they said they would repeat the endoscopy and take a look for themselves. 

The doctor was very, very thorough and spent an hour with me going over results and symptoms. I'm thankful to have Mayo in backyard!