Do I have H.Pylori? Help!

[dennis_fd]

I was diagnosed with h.pylori in 2010 - it was the worst, full on reflux, pain etc, an endoscopy found duodenal ulcers which they said were caused by h.pylori, not sure if they did a biopsy at the time. I was put on triple therapy as it was called then, so clarithromycin, amoxycillin and a PPI, did the trick and have been free of h.pylori until recently.... I think.

I say "I think" because every once in a while over those 14 years (probably every year or so) I would get a nagging pain in my upper stomach just below the breast bone - not reflux or heartburn, and unaffected by whatever I ate - just a dull ache that would hang around for about 2 - 4 weeks then just as quickly disappear. The last time this happened (September 2022) I was worried enough to get an endoscopy which drew a blank (no h.pylori test, just the endoscopy, as it was just the dull pain, no gas or digestive issues). Like I said, I think I've been free of h.pylori these last 14 years. Until now that is.

I'd been on a keto/carnivore-type diet for a month prior to the issue starting - I'm usually your average omnivore with maybe every other day being vegetarian or vice-versa. I don't do junk-food, and I rarely drink alcohol. Around 2 months ago this pain started up, and this time with a tremendous amount of gas and bloating.

Symptoms are as follows:

Mostly gnawing but sometimes dull pain in the upper left abdominal area.
--Comes and goes. I've had half days pain free. Eating tends to make it better. When it's bad, it's real bad.
Gas, both burps and flatulence, and bloating.
--Only in the last 2 weeks or so, for the first 6 weeks it was just the pain as above.
--Getting worse with each day.
Sometimes feel full without eating, but also very hungry at other times.
--Also lots of gurgling from my guts during the hungry times.

Otherwise.... No diarrhoea or constipation, healthy bowel movements every morning which are neither dark nor tarry, no pain at night, and the pain and gas tends to retreat after I've eaten. Some nausea, but not often. No weight loss other than the intended kilo or so from the keto / carnivore thing.

I had the stool antigen test last week which came back negative. Is it possible to get a false negative in the first instance? The doctor wants me to repeat the test in a weeks time before referring me for the endoscopy. The breath test can only be requested by a gastro enterologist here in the UK, who I will not be referred to unless something shows up in the endoscopy - bizarre. I understand my condition could be anything at this stage, I've done the rounds with the interweb experts (Dr Eric Berg, Dr Sten Ekberg, TC Hale etc) and tried a number of things but no joy as yet. Everyone has their own take on it. Needless to add I've reverted to my original omni/veggie diet. Here's what I've tried:

TUDCA - I initially took TUDCA (tauroursodeoxycholic acid, a bile salt) and the pain disappeared for 2 weeks - I thought wow! - only for it to return and this time with a whole load of gas, which wasn't really happening in the early stages. I thought the pain could have been due to "bile sludge" as it's referred to, which is thickened bile that has blocked the "sphincter of Oddi" where the bile secretes into the duodenum, and thereby putting pressure on the pancreas - around the same area as the pain was presenting so I thought, why not? Worth a try.... no joy. Stopped taking this 2 days ago.

Zinc L-Carnosine - If I have h.pylori and/or an ulcer then this comes highly recommended, on this forum and elsewhere. Been taking this for 5 weeks, apparently it can take up to 3 months before any improvement is seen - unless my current symptoms are part of a Herxheimer / die-off reaction, there's been no improvement.

Biocidin Botanicals Remove (a herbal biofilm disrupter) and Mastic Gum - this was only 4 days ago, so too early to tell if they're working.

The zinc l-carnosine and the TUDCA may have affected the stool antigen test result, I have no idea... any thoughts anyone can provide would be much appreciated. Also I don't think this is a SIBO thing either - all the pain is left-sided, just under the breastbone, all pains are upper GI, nothing in my small intestine or belly as such - forgive me my lack of understanding if that's how it comes across, but from what I read these aren't necessarily classic SIBO symptoms.

It could be h.pylori with or without an ulcer, with or without low stomach acid, or an ulcer but no h.pylori - tried that low stomach acid bicarb test on an empty stomach many times. I've not burped once which apparently indicates low stomach acid, but I also understand that that particular test isn't much of a test. I'm falling on the side of h.pylori as I've had it before.

Very much appreciate any thoughts or pointers here, and apologies in advance if I sound ignorant of anything, thanks!

[Helico_expert]

Have you done any tests specifically to check for H. pylori infection? such as a Breath test?
alternatively, you can make an appointment to have an endoscopy examination done. That would be the best to rule out any stomach abnormality.

[dennis_fd]

Hi helico_expert,

Many thanks for your time here, as in the post the stool antigen test came back negative, and I was wondering if it was possible to have a false negative in the first instance. My doctor wants to repeat the stool test in a week or so, and cannot refer me for a breath test as I this has to be done via a gastro-enterologist here in the UK. My doctor can only refer me to a GE if the endoscopy shows up anything. I know, it sounds bizarre but he tells me that's the procedure!

[Wennel]

I had similar issues with H. pylori, and false negatives are possible with stool tests, especially if you're on supplements. Dietary changes can also mess with things. Try keeping a food diary to track symptoms and see if there's a pattern.

[dennis_fd]

Thank you @Wennel yes, have been seeing if this is dietary-related - it did seem to all start with the keto/carnivore thing, although initially all was going well. I thought it may be all the extra fats that come with keto that were doing me in - hence trying the TUDCA as I thought is was a bile issue. Unless I go private for a breath test prior to the endoscopy (which would otherwise follow the 2nd stool test as mentioned above), I should at least have the results of both stool tests and the endoscopy to go on. I understand from your other posts it was a biopsy that finally showed positive? Once diagnosed, how did you treat it?

[Helico_expert]

not all test is 100%.
Stool test is also relying on the bacterial load.
have you been taking any medication before the stool test? you need to stop any medication that may affect the bacterial load and stomach acid for at least 2 weeks.

Depending on your situation, if you are over 50 yr old and never had endoscopy before, I suggest you go for endoscopy
if you are below 50, endoscopy is still recommended, as it gives you a record of base line..
if you are below 40, wild or no symptoms, no family history of gastric cancer, not from East Asia, then endoscopy is probably not needed. I would recommend to do a careful breath test.

[dennis_fd]

Thank you helico_expert. I've not been taking any medication for well over a year as far as PPI's or antibiotics are concerned - just various supplements as mentioned, and I had an endoscopy 2 years ago (just pain in my stomach with no digestive issues, results were all clear). I've now booked a breath test with a private clinic within the coming week, and my GP has finally referred me for the endoscopy. No family history of gastric cancer, not from East Asia (from the eastern Mediterranean, so thalassemia comes as a bonus "feature") but obviously still worried that this could be something more sinister.

[Helico_expert]

look forward to hearing more news from your breath test result.

[dennis_fd]

Thanks helico_expert. Received the results of the breath test today - negative. I was very careful with the test. Fasted for the 8 hours beforehand (16 hours if you include the night before) no fluids etc. Is it possible to get a false negative breath test and a false negative stool antigen test? Perhaps it's an ulcer and or gastritis / something else? Next stop is the gastroscopy with biopsy - still awaiting an appointment.

I have been treating whatever this condition is with mastic gum and Biocidin Botanicals' Remove as a biofilm disrupter, and there appears to be slow improvement.

Feels like I'm going mad here.

[Helico_expert]

Congratulations on receiving negative results for both the breath and stool tests! While the accuracy of these tests largely depends on the technician conducting them, I assume they are professionals in your country, so the results should be reliable. That said, if you still have concerns, you can always choose to repeat the breath test in about four weeks or request the raw data from the breath test. For the C13 breath test, the typical cut-off is around 4%. If your result is below 3%, the chance of a false negative is quite low. However, if your result falls between 3.5% and 3.9%, there’s a small possibility of a false negative. Different labs may have slightly varied cut-off values.

It’s understandable that this situation feels overwhelming. While you await your gastroscopy and biopsy, it’s good to hear that you’ve seen some gradual improvement with mastic gum and Biocidin Botanicals. Keep following your current regimen, and hopefully, the upcoming gastroscopy will give more clarity.

Wishing you continued progress, and don’t hesitate to reach out if you need further insights.