Positive stool test, negative endoscopy, which test to trust?
Posted: Sat Mar 19, 2022 3:36 pm
I am very confused with my diagnosis and would appreciate some insight.
I was diagnosed as HP positive through a stool test last year. However, I have already had stomach problems my entire life: duodenal ulcers at 6 and 10, severe cramping and pain in stomach, bloating, diarrhea, nausea, and reflux at night - it lasts for months to years, then goes away for months to years, then comes back and the cycle repeats. I'm 36. I had a gastroscopy at 10 and it was negative for HP, but they discovered low acid and metaplasia. About 4 years ago I had a breath test because I was complaining about these same problems, but it was negative. I also had my second gastroscopy then and the results for HP were also negative. I wondered why my stool test was positive now, so my doctor sent me for another gastroscopy which I had a month ago. The RUT showed a positive result after 30 minutes. But the culture and PCR tests were both negative. Stomach tissue had fibrosis and lymphocytes, so something is clearly going on. Yet they also said that there were some organisms on the stomach tissue sample that were suspicious of being HP, but they couldn't quite tell if they were actually HP.
What is going on?! With each test, I have more questions than answers. I don't want to take the treatment if I don't actually have HP because I'm already in poor health and antibiotics always leave me incapacitated. When I asked different doctors which test is more reliable, each gave me a different answer!
I am completely lost. Could it be possible I've had a low count of the bacteria all these years due to hypochloridia and metaplasia? I've read once that it could be the case, but there were no final conclusions. Would it be sensible to try a blood test to see if I have antibodies, so I'd know whether I've ever even had the bacteria or not? Or another breath test to see if it aligns with the positive stool or not? Or maybe I have a different Helicobacter that also produces urease?
It's terrifying how I can't trust modern medicine to provide me with clear answers about what's going on.
What would be the best thing to do here?
I was diagnosed as HP positive through a stool test last year. However, I have already had stomach problems my entire life: duodenal ulcers at 6 and 10, severe cramping and pain in stomach, bloating, diarrhea, nausea, and reflux at night - it lasts for months to years, then goes away for months to years, then comes back and the cycle repeats. I'm 36. I had a gastroscopy at 10 and it was negative for HP, but they discovered low acid and metaplasia. About 4 years ago I had a breath test because I was complaining about these same problems, but it was negative. I also had my second gastroscopy then and the results for HP were also negative. I wondered why my stool test was positive now, so my doctor sent me for another gastroscopy which I had a month ago. The RUT showed a positive result after 30 minutes. But the culture and PCR tests were both negative. Stomach tissue had fibrosis and lymphocytes, so something is clearly going on. Yet they also said that there were some organisms on the stomach tissue sample that were suspicious of being HP, but they couldn't quite tell if they were actually HP.
What is going on?! With each test, I have more questions than answers. I don't want to take the treatment if I don't actually have HP because I'm already in poor health and antibiotics always leave me incapacitated. When I asked different doctors which test is more reliable, each gave me a different answer!
I am completely lost. Could it be possible I've had a low count of the bacteria all these years due to hypochloridia and metaplasia? I've read once that it could be the case, but there were no final conclusions. Would it be sensible to try a blood test to see if I have antibodies, so I'd know whether I've ever even had the bacteria or not? Or another breath test to see if it aligns with the positive stool or not? Or maybe I have a different Helicobacter that also produces urease?
It's terrifying how I can't trust modern medicine to provide me with clear answers about what's going on.
What would be the best thing to do here?