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Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Mon Jun 11, 2018 6:58 pm
by nikolay
Ok here is an update from me. Last week I've done one of these home stool antigen tests and it came negative, 12 weeks after antibiotic treatment, 3.5 weeks after PPI stop, 2.5w after H2 pill stopped. Today I've done UBT on my first lab (where I had positive in September) and it is negative, 0.7 ‰ of the marked urea, while the cutoff is 3 ‰. (in September I have 11‰)

So what I have now recently in summary:
- one positive UBT in another lab 2 months ago, but I don't know the values.
- endoscopy done for culture attempt - negative
- histologically "chronic surface gastritis, in activated phase with inflamed erosions" 2 moths ago, but no test were done for hpylori
- negative UBT today
- also 2 negative home stool antigen tests (not sure how reliable are these)

So what do you think? Since recently I am feeling bit better - after stopping the antisecretory drugs it was awful for a week but now it gets better, I do not feel too much the reflux and can eat much more variable diet. Still get bloating, some burn feeling, etc. but I feel somehow better. And definitely better than a year ago. However I do not feel my stomach perfect or even good. It's still "sensitive" I would say.

Do you think it's acceptable to think now that hpylori is resolved and wait some more months to see where it goes? My greatest concern is from the histology and visual inspection on the stomach 2 months ago, but I suppose it's possible still to have gastric stomach which will gradually improve. And of course there is another more difficult hypotheses that my issues are from non-hpylori gastritis... I was thinking now weather to wait or go again to a doctor to discuss my condition and eventually run some more tests to rule out other non hpylory causes.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Mon Jun 11, 2018 10:15 pm
by Helico_expert
congratulation! I believe the UBT and stool test result. When you see the breath test result drop from 11% to 0.7%, that's a true negative. I would worry if the breath test result is hovering around the threshold mark.

Anyway, all you need to do now is to eat healthy and think positive. I am sure your condition will improve gradually.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Mon Jun 11, 2018 10:47 pm
by nikolay
So I shouldn't worry about the histology and the "active chronic gastritis" finding as we expect this to resolve gradually eventually?

And indeed I feel better, but it's just very slow. There are sometime days when I feel completely ok (or almost), then on the next day not ok, then again not ok and so on. But it's not comparable with year before when I had awful dyspepsia. Now I eat more variable food like cherries and do not have issues like before. 1y ago if I eat cherries I almost immediately feel sick, now I can eat almost everything just have to be very careful with the water, not filling my stomach with too much. However now I have acids (reflux) which I didn't have before (or it was rare) and have to be careful with this as the doctors already see some esophagitis with the endoscope.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Tue Jun 12, 2018 9:45 am
by Helico_expert
active chronic gastritis just mean the immune cells are actively looking for pathogen. which can be a signal that H. pylori is present.

H. pylori is very smart. It can hide itself from those immune cells. So when the immune cells cannot see H. pylori, they stay activated hunting for something they cannot see.

Now that your H pylori is gone. Your histology will not show your immune cells as active. They will gradually retreat as there is no more threat.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Thu Jun 14, 2018 6:35 am
by nikolay
Thanks for your help, I appreciate it. I noticed that in both labs over here they use some Chinese equipment for the UBT. I know these machines are pretty expensive, and I saw they are selling them in alibaba, I also saw the urea C13 tablet - it was clearly written it's a Chinese manufacturer. What do you think - are these Chinese machines reliable enough? I am asking because I have so much contradicting results, and I suspect everything.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Thu Jun 14, 2018 9:04 am
by Helico_expert
That's interesting information. Which country are you from? I would like to know which country has access to Chinese machine and how easily can these country buy these machine. I am not sure the accuracy. But I know lots of countries still have no access to breath test.

Nevertheless, If you are still worry, just wait a couple of months and repeat the breath test again.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Thu Jun 14, 2018 3:52 pm
by nikolay
I live in Bulgaria and I believe we have only 2 labs in the whole country with such machines and both in the capital, much more used are faeces/blood tests. There are even doctors which does not know about the breath test. One of the labs have such machine, I believe: http://www.ureabreathtests.com/13c-infr ... e-200.html
The other I don't know, but they use infrared spectrometry to detect the C13 urea. I see moth of these Chinese machines use that technology, however I think it's a valid techology to detect the marked urea.

My doctor told me a story that he was using UBT before years in the office - doing only breath collection with provided kits, then send them to the lab with the machine and get a few people with false negative. They continue to complain and on the endoscopy fast urease test shows positive, so he stopped using this remote UBT and rely at the moment to faeces and invasive methods.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Wed Jun 20, 2018 9:17 pm
by nikolay
I continue to use myself as a lab rat. :) I also done stool test (in a lab). It is also negative - 0.062 U/ml while the threshold is 0.100 (far bellow the limit). So I don't have any reason anymore to believe that the hp is not eradicated! I do not know while before 2nd endoscopy UBT was positive anymore, maybe it's a lab mistake, maybe they use bad machine, or wrong way of doing the test as they done some "alternative" way of collecting breath samples. The base sample was done before drinking the acid drink, then they asked me to take the acid drink, and immediately after that to drink the C13 urea and not the pill but the pill contents diluted in water, and after that wait only 20 min for the second breath sample. It looked very unusual, although it might be valid. And apparently my 2nd endoscopy to attempt to culture was unnecessary as I didn't have already the bacteria and the culture is negative.

Anyway my stomach issues are not resolved, I have acid reflux symptoms and also burning, belching, white tongue, etc. Also dyspepsia, but not so bad like 1y ago when I had the bacteria. I would say it's acceptable. :) I started to take some pepto bismol now to see if it will make any difference. Also can start taking H2 blocker meds after a while. Apparently this acid feel increased dramatically after the eradication. Before I had acids rarely, now I have them constantly especially when my stomach is empty. Although there are some days when I am quite ok but don't last too long.

Can you please let me know if I don't start feeling my stomach better after sometime, where else I can look the reason for the erosive gastritis (which apparently cause my issues since it's visible on the endoscopy). I know that apart from hp bacteria, major cause can be NSAIDs but I don't take such. Also alcohol but I don't drink. ... So where to look? Food allergy? Some other more rare stomach disease?... I feel well physically, apparently not having any bleeding/anaemia and other bad things which can accompany the gastritis.

Thanks for your help and I will keep yo posted for my case!

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Wed Jun 20, 2018 10:43 pm
by Helico_expert
Thanks for updating your story. I think since you are not infected with H. pylori now, your stomach is not likely to deteriorate. Give your stomach some time to recover. You may need to continue PPI for a while.

Re: Complicated helicobacter and gastritis case with negaitive culture

Posted: Wed Jun 20, 2018 11:08 pm
by nikolay
After my 2nd endoscopy when the doctor saw the stomach inside he gave me 2x20mg esomeprasol and I was taking it almost 3 weeks, then I stopped to prepare for UBT test. I am a bit afraid from PPI as I know that PPI itself can cause gastritis during long term use, also stopping it cause to me 1 week terrible acid reflux (rebound effect). Also PPI during long term use can cause acid rebound for some longer time...

Anyway, at the moment I do not take any acid suppressors, only occasionally simple antacids. However my feeling is that when I take PPI or H2 blockers I am better but then when I stop it again my conditions deteriorate gradually. What is your advise for the best strategy in my case? How much and what dosage to take? PPI or the milder H2 blockers ? And how long to wait until I stop them and see how the stomach it.

Thanks for your help.