I think I have a diagnosis - Autoimmune Gastritis? Any thoughts on this? Questions I need to ask?

[Ann.without.an.e]

After two years of issues, I think I finally have a diagnosis. Biopsies from the endoscopy show chronic gastritis and the doctor was already highly suspicious of autoimmune gastritis. 

My symptoms: trouble taking a deep breath at times, feeling very full, pain in the upper left quadrant and left shoulder & chest pain, tiredness, fatigue, etc. 

I honest to goodness would've never guessed stomach. I don't think I have ever had reflux? I don't have heartburn or nausea. When the symptoms first started we thought it was heart related so I saw a cardiologist and was cleared. Then I saw a pulmonologist - I was cleared there too. In the lung CT Scan they saw a single, large gallstone near the neck of my gallbladder. I made an appt with a Gastroenterologist to rule out gallbladder issues. He wanted to do a colonoscopy/endoscopy to rule out other issues (DS has Crohns). Colon looked great but the endoscopy had inflammation in my stomach and stomach polyps, biopsies show chronic gastritis. I guess having Hashimoto's makes me higher risk for autoimmune gastritis? He was even more suspicious of this when he pulled a CMP and CBC and I was low on iron, D, and B. 

I have never smoked, don't drink, don't eat fast food, I'm gluten and dairy free and I eat a pretty clean diet. 

What does the Hive know about this? What questions should I ask and what should I be aware of?

Reading up on it, it seems like some people say fasting periods with just like bone broth helps and others say to eat small meals all the time and not let your stomach get truly empty. Seems like conflicting ideas?

 

Edited January 30, 2023 by Ann.without.an.e

[Katy]

I’m glad you got a diagnosis and I bet it is the right one, if not the only one. You may also have some allergies (oral allergies or regular ones). 

[prairiewindmomma]

I think you are peeling an onion. I think the diagnosis is correct but I would .02 that you have some oral allergies and other stuff going on also. 

[Ann.without.an.e]

Thanks, y'all.

I thought for sure someone here would have first hand experience with this, but it seems not. That's ok 🙂 

Edited January 30, 2023 by Ann.without.an.e

[kbutton]

No experience with it, but I wonder if I have/had family members with it as pernicious anemia is prevalent in my family and so are other AI diseases. Some of the people with pernicious anemia have also had GI perforations, which could be related to ulcers.

So, my suggestion is to be vigilant about the B vitamins—if it progresses to causing pernicious anemia, you need B 12 injections because your GI tract will lack intrinsic factor. 

[Jean in Newcastle]

I have a lot of intestinal/stomach inflammation, though it hasn't been explored beyond telling me to eat a celiac level gluten free diet.  (Though other things like nightshades can trigger it too.)  I do drink bone broth.  And I find it soothing.  And when things are torn up (like they were last week and weekend) I like mild things like a silken tofu scramble.  No raw veggies - but lots of cooked veggies when things are irritated.  And none of the aforementioned nightshades or gluten. 

[BeachGal]

Did your doctors have anything to say about H. pylori? Or size of polyps? Some of your symptoms can be caused by the polyps.

Did you have a Covid infection before symptoms began? Some people develop gastritis afterward.

People try different things and that might be your best bet along with being monitored by your doctors. Some people take zinc carnosine, for example. Or temporarily cut out even more foods. Fasting would increase the production of beta hydroxybutyrate in your gut, intestines, which might be helpful but not sure about the stomach. Maybe.

https://www.foundmyfitness.com/episodes/what-type-of-fasting-is-best-rhonda-patrick

It’s good you have a more definitive diagnosis. You can at least try different treatments that target it.

[Ann.without.an.e]

1 hour ago, BeachGal said:

Did your doctors have anything to say about H. pylori? Or size of polyps? Some of your symptoms can be caused by the polyps.

Did you have a Covid infection before symptoms began? Some people develop gastritis afterward.

People try different things and that might be your best bet along with being monitored by your doctors. Some people take zinc carnosine, for example. Or temporarily cut out even more foods. Fasting would increase the production of beta hydroxybutyrate in your gut, intestines, which might be helpful but not sure about the stomach. Maybe.

https://www.foundmyfitness.com/episodes/what-type-of-fasting-is-best-rhonda-patrick

It’s good you have a more definitive diagnosis. You can at least try different treatments that target it.

I’m not sure polyp size, I should check to see if it is in the biopsy report. 
I think they’re testing for H pylori too but results are not back yet. 
 

We had a few family members with Covid before I started having problems and their symptoms were mild so there is a chance I had Covid before this stuff began but didn’t know. 
 

thanks for the link, I’ll check it out

[Grace Hopper]

5 hours ago, Jean in Newcastle said:

I have a lot of intestinal/stomach inflammation, though it hasn't been explored beyond telling me to eat a celiac level gluten free diet.  (Though other things like nightshades can trigger it too.)  I do drink bone broth.  And I find it soothing.  And when things are torn up (like they were last week and weekend) I like mild things like a silken tofu scramble.  No raw veggies - but lots of cooked veggies when things are irritated.  And none of the aforementioned nightshades or gluten. 

You may want to eliminate nightshades and see if that makes a difference. Another possibility is histamine, you may want to look at low histamine foods. 

4 hours ago, BeachGal said:

Did your doctors have anything to say about H. pylori? Or size of polyps? Some of your symptoms can be caused by the polyps.

Did you have a Covid infection before symptoms began? Some people develop gastritis afterward.

People try different things and that might be your best bet along with being monitored by your doctors. Some people take zinc carnosine, for example. Or temporarily cut out even more foods. Fasting would increase the production of beta hydroxybutyrate in your gut, intestines, which might be helpful but not sure about the stomach. Maybe.

https://www.foundmyfitness.com/episodes/what-type-of-fasting-is-best-rhonda-patrick

It’s good you have a more definitive diagnosis. You can at least try different treatments that target it.

Testing for H pylori is good idea. 

3 hours ago, Ann.without.an.e said:

I’m not sure polyp size, I should check to see if it is in the biopsy report. 
I think they’re testing for H pylori too but results are not back yet. 
 

We had a few family members with Covid before I started having problems and their symptoms were mild so there is a chance I had Covid before this stuff began but didn’t know. 
 

thanks for the link, I’ll check it out

The test I took for this involved blowing into a bag. You’d remember something like that. If you don’t, perhaps you should ask your doctor specifically about testing for it. 

[Ann.without.an.e]

22 minutes ago, Grace Hopper said:

You may want to eliminate nightshades and see if that makes a difference. Another possibility is histamine, you may want to look at low histamine foods. 

Testing for H pylori is good idea. 

The test I took for this involved blowing into a bag. You’d remember something like that. If you don’t, perhaps you should ask your doctor specifically about testing for it. 

I’ve heard of that test. For me, they are testing a tissue sample from a biopsy. I just don’t think we have those results yet. 

[Ann.without.an.e]

On 1/30/2023 at 2:32 PM, BeachGal said:

Did your doctors have anything to say about H. pylori?

 

H pylori biopsy is negative

[TCB]

I’ve come across autoimmune esophagitis, I wonder if it’s similar. There is a new monoclonal antibody treatment for it. I wonder if it would also be indicated for your condition?

[TravelingChris]

On 1/29/2023 at 2:58 PM, Ann.without.an.e said:

After two years of issues, I think I finally have a diagnosis. Biopsies from the endoscopy show chronic gastritis and the doctor was already highly suspicious of autoimmune gastritis. 

My symptoms: trouble taking a deep breath at times, feeling very full, pain in the upper left quadrant and left shoulder & chest pain, tiredness, fatigue, etc. 

I honest to goodness would've never guessed stomach. I don't think I have ever had reflux? I don't have heartburn or nausea. When the symptoms first started we thought it was heart related so I saw a cardiologist and was cleared. Then I saw a pulmonologist - I was cleared there too. In the lung CT Scan they saw a single, large gallstone near the neck of my gallbladder. I made an appt with a Gastroenterologist to rule out gallbladder issues. He wanted to do a colonoscopy/endoscopy to rule out other issues (DS has Crohns). Colon looked great but the endoscopy had inflammation in my stomach and stomach polyps, biopsies show chronic gastritis. I guess having Hashimoto's makes me higher risk for autoimmune gastritis? He was even more suspicious of this when he pulled a CMP and CBC and I was low on iron, D, and B. 

I have never smoked, don't drink, don't eat fast food, I'm gluten and dairy free and I eat a pretty clean diet. 

What does the Hive know about this? What questions should I ask and what should I be aware of?

Reading up on it, it seems like some people say fasting periods with just like bone broth helps and others say to eat small meals all the time and not let your stomach get truly empty. Seems like conflicting ideas?

 

I am sure I hjhave this too.  I just keep adding autoimmune diagnoses.  You get one, most often you get more than one  Almost everything both dd2 and I are getting is being called autoimmune.

[Ann.without.an.e]

2 hours ago, TCB said:

I’ve come across autoimmune esophagitis, I wonder if it’s similar. There is a new monoclonal antibody treatment for it. I wonder if it would also be indicated for your condition?

I will do some research and see. Thanks 🙂 

 

 

2 hours ago, TravelingChris said:

I am sure I hjhave this too.  I just keep adding autoimmune diagnoses.  You get one, most often you get more than one  Almost everything both dd2 and I are getting is being called autoimmune.

It sure feels like it and for some families (like yours and ours) it just keeps coming, right?

DS has crohns and an autoimmune liver condition, but in his last MRI they also see a lot of joint inflammation and wonder about ankylosing rheum stuff. 

Both DDs and I have Hashimoto's 

Younger DD doesn't absorb iron and she is now having stomach issues too so there is something deeper going on that she is about to explore

Youngest DS doesn't seem to absorb B vitamins and my GI questions whether he may have autoimmune gastritis already. 

It just seems to keep coming ... it sucks ... 0/10 don't recommend. I wish there was some way to undo it all. 

 

Edited February 3, 2023 by Ann.without.an.e

[Ann.without.an.e]

I'm really bad about not eating very often and I don't have a big appetite. From what I read, that is not good for this and I should eat small amounts often. This is going to take such a shift in mindset for me. I would rather go about my day and not think about food at all. That is more my vibe. 

Edited February 3, 2023 by Ann.without.an.e

[Grace Hopper]

28 minutes ago, Ann.without.an.e said:

Everyone needs to know - It is NOT anything from my mom's genetics. She just wants everyone to know that it must have come from someone other than her 🤣🤣

 

Seriously though, I'm really bad about not eating very often and I don't have a big appetite. From what I read, that is not good for this and I should eat small amounts often. This is going to take such a shift in mindset for me. I would rather go about my day and not think about food at all. That is more my vibe. 

A few years back I had to take some meds to remediate a gut issue, and timing and strict diet were important to adhere to. 
 

It took a couple of planning days before I got started, but I was able to be successful because of this prior planning. Each night I prepared/portioned out everything I needed for the next day. For a long day out, I packed either non perishable foods or put a small cooler in my vehicle and took it all along with me. The prior evening, I also set alarms on my phone for the whole next day’s meal and med times.
 

I had to do this twice, for 8 weeks each time. it wasn’t easy, but this disciplined approach was worth it. After about the first three weeks, I found I’d become very familiar with my meal repertoire and planning time became less. I also made myself eat on time, even if I didn’t feel like it eating at all or didn’t feel like eating that item; I just ate. I learned what I could and could not eat. The foods I was restricted to became familiar tastes. 
 

I know your circumstances are different than mine were, I just want to encourage you to develop whatever habits you can that will help you heal and get better. It’s worth it! 

[katilac]

10 hours ago, Ann.without.an.e said:

I'm really bad about not eating very often and I don't have a big appetite. From what I read, that is not good for this and I should eat small amounts often. This is going to take such a shift in mindset for me. I would rather go about my day and not think about food at all. That is more my vibe. 

My dad is in his mid 80s and would eat one small meal a day if he left it up to his appetite (which he can't, he was vanishing). 

He literally has alarms set throughout the day so he doesn't go too long without eating. That might work for you, particularly if you prep small amounts of food to be ready to go. The alarm goes off, you grab something from the prepped stack . . . it's fairly close to going about your day and not thinking about food. You could even have some items in your pocket or purse, so you're not even walking to the fridge.

[ArteHaus]

My husband was deathly ill for 3 years (and that almost seems like an understatement). As a 6’1 man, he had gotten down to 108 pounds due to gastrointestinal issues that were not properly diagnosed. We spent years going from doctor to doctor only to get vague crohns/various other autoimmune diagnoses.

His illness involved the stomach and intestine, couldn’t keep food down, around 10 (extremely painful) bowel movements per day, he at one point couldn’t get up to walk to the bathroom. We tried everything to get him back in order, but no medication was working. He also had left quadrant pain. For sake of brevity, I am making this long story very short.

Anyway, we said screw the hospital and went to a naturopath, who suggested he take a GI-MAPS test (Microbial Assay Plus). If it wasn’t for this test, my husband would.not.be.here. What we found was a terrible case of H.Pylori, which the hospitals never considered, just jumped to cancer and autoimmune disease. Our next hurdle was getting the hospital (VA) to acknowledge the test, they would not. So we had to look outside of that system (surprise) and we found a doctor that prescribed a simple antibiotic for H. Pylori. That was a year and a half ago, and he is right as rain and very healthy now. 

The GI-MAPS test is essentially a better alternative to a colonoscopy (my husband had colonoscopy, we opted out of the endoscopy although it was scheduled). It looks at the gut at the microbial level, and we were able to gain a lot of understanding about what was going on. The colonoscopy left us with a “we don’t know, probably Crohns”, whereas the GIMAP pinpointed the issue, and we are so thankful for this. 

If you live in a progressive area, they may already be using the GI-MAP instead of colonoscopy in some cases. If not, it is definitely something to refer to a naturopath for, and pay out of pocket. It was worth every penny. Maybe that is something that could help you nail down exactly what is going on. Best wishes-

 

ps. I would highly consider the test even if you tested negative for h pylori. My husband tested negative at the hospital as well, which is why they would never consider it again. But he did have hpylori. The strand/type he had wasn’t detectable via the test they had at the hospital.