Having symptoms but negative tests results so far.

Posted by jojs @jojs, Jan 18, 2023

Hi all, I have been following this group for a month or two looking for answers. Past 10 years or so, always had digestion problems (constipation & indigestion). My gallbladder has been surgically removed over 20 years ago. March of 2022, I starting having some serious upper stomach pain, bloating, gas, nausea, weight loss totaling 30 lbs to date and upper back pain. I am passing enormous amounts of gas out the bottom. Went to GP and he ordered abdominal CT scan. "Within normal limits" was the report on all the organs and lymph nodes. Then had a EGD (endoscope) with biopsies. Seven biopsies of my duodenum were taken, and three biopsies of my stomach. None showed cancer cells. That report read 1. duodenal mucosa with Brunner gland hyperplasia and associated reactive changes. 2. Stomach had moderate chronic gastritis. Negative for celiac, negative for heli-bacteria, negative for dysplasia. Routine blood work looks o.k. as well. Lipase levels are normal. Then yesterday, I had bright yellow diarrhea. All this is very concerning to me. I know something is "not right", but I had all these tests that showed nothing remarkable. Recently my weight is starting to stabilize. The pain is still there, still gas, but not as bad as it had been. Is there any other tests you have had to find a diagnosis? If you read this far, Thank you. If you have any suggestions, I would be grateful. P.s. I suspect this could be my pancreas? which is why i am posting here.

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

sloped483 | @sloped483 | Jan 19, 2023

I've experienced what you are experiencing and also had a complete workup with a colonoscopy, upper endoscopy, and a pill camera endoscopy. Like you, I also have stomach gastritis, and I also reflux, but other than those issues my test results were also normal. No celiac, H. pylori, Crohn's, or ulcerative colitis.

It seems for me that I've been lactose intolerant and just recently realized after either drinking skim milk or eating cheese. So I started drinking Lactase skim milk that that has helped the cramping/pain tremendously where it had me run to the bathroom again. Recently, the grocery store was out of lactase skim milk so we bought Lactaid 1% milk instead but then I started to experience gas/bloating and cramping/pain again and started to make me wonder if I also can't tolerated fat anymore in addition to lactose, whether it's in milk or cheese.

I'm still playing around with my diet as my symptoms usually happen right after I eat. I do have a few side branch pancreatic cysts in the head and body but when they were last checked last May '22 they were still small enough for just yearly surveillance. But perhaps I may need to start taking digestive enzymes.

Have you noticed a specific time when your symptoms occur?

Colleen Young, Connect Director | @colleenyoung | Jan 30, 2023

@jojs, I hope you saw the helpful post from @sloped483.

I'm glad that your test results have been negative for cancer. But I know how frustrating it is to not have an explanation or diagnosis. Have you seen a gastroenterologist?