Permanent Floating & Undigested Stools for a Year

[Dora77]

For some context: I have type 1 diabetes (T1D) (since 11 years) and celiac disease(since 4 years) For about a year now, I’ve been experiencing permanent floating and undigested stools.

I’ve had a pancreas elastase test done. The first result was extremely low at 44, but a second test came back at 236. My doctor said that since one result is normal, it rules out pancreatic insufficiency because, according to them, elastase levels would always stay low if that were the issue. However, could the 236 have been a false result? My doctor also thinks I don’t have pancreatic insufficiency because I’m able to gain weight. I also get hgh injections as my bone age is younger than my real age, this also contributes to weight gain, so I dont know if weight gain can rule out malabsorption. But maybe if I had real malabsorption I wouldnt gain any weight even with hgh?

For celiac, I’m on a gluten-free diet, but there might b small cross-contamination from things like pepper labeled as “may contain gluten.” or sausages which dont have gluten ingredient but say may contain. My doctor said that small amounts like this wouldn’t harm me and even mentioned that an occasional small exposure to gluten may not do much damage (which seems questionable since I thought even tiny amounts could be harmful). She also said that when Im older (Im m17) I could try eating small amounts of gluten and do antibody blood tests to see if I can tolerate small amounts or not. For reference, I’m asymptomatic when it comes to celiac, so I have no idea if I’ve been “glutened” or not.

My first concerning celiac blood test was semi high IgA, then 3 months later we did a check up and my IgA was high so it was confirmed celiac. Since than I’ve had celiac antibody tests done yearly to see how my diet is going, and they’ve been negative, but I’ve heard those aren’t always reliable. I’ve never had a follow-up endoscopy to confirm healing. I also always kept eating „may contain gluten“ food. (I live in Germany so I dont know if „may contain gluten“ is as risky as in the usa but I suppose both are as risky)

These stool issues started around the same time I was doing excessive heavy lifting at the gym. Could stress or lifting have triggered this, or is that less likely since the symptoms persist even after I stopped lifting?

Occasionally, I’ll feel very mild stomach discomfort, but it’s rare and not severe. My doctor (also a dietist) said floating, undigested stools could still be “normal,” but that doesn’t seem realistic to me. Could this be impacting my vitamin or protein absorption?

I also did a fructose intolerance breath test and had a high baseline of 20 ppm, but it never increased—only decreased over time. I fasted for 12 hours and didn’t eat fructose beforehand, but my stomach didn’t feel completely empty during the test. Could this mean the test was inaccurate?

For lactose intolerance, I did the breath test but only fasted 10 hours and had eaten lactose prior because I wasn’t aware of the proper diet restrictions. My results were: 14, 12, 15, 25, 35, 40, 40 ppm—which would be considered positive. But given that I didn’t fast long enough or follow the right diet, could this result be unreliable?

Has anyone else dealt with similar symptoms? What ended up being the cause for you?

And sorry for the long text!

[Scott Adams]

It sounds like you're dealing with a complex situation involving multiple factors, including type 1 diabetes, celiac disease, and potential pancreatic or digestive issues. While your doctor has ruled out pancreatic insufficiency based on one normal elastase result, it’s worth noting that elastase levels can fluctuate, and a single test might not capture the full picture. Weight gain, especially with hgh injections, doesn’t necessarily rule out malabsorption, as nutrient deficiencies can still occur even if weight is stable.

Regarding celiac disease, even small cross-contamination from "may contain gluten" foods could contribute to ongoing intestinal damage, especially since antibody tests aren’t always reliable indicators of healing. A follow-up endoscopy might provide more clarity. The persistent floating and undigested stools could suggest malabsorption, potentially impacting vitamin or protein levels, so it might be helpful to check for deficiencies.

The fructose and lactose intolerance tests could be unreliable due to improper fasting or dietary preparation, so repeating them under correct conditions might be necessary. Stress or heavy lifting could temporarily affect digestion, but persistent symptoms likely point to another underlying issue. Consulting a gastroenterologist for further evaluation, including potential small intestinal bacterial overgrowth (SIBO) or other digestive disorders, might be a good next step. Keep advocating for yourself—your concerns are valid!