Anonymous wrote:
Since you mentioned in your original post that you are of Ashkenazi Jewish descent, gotta ask if you have ever been screened for Gaucher Disease? It doesn't commonly present with gastrointestinal issues, but since the liver/spleen can become enlarged, you could have stomach bloating from that. Fatigue is definitely associated with Gaucher. Sometimes the CBC will show issues (e.g., low platelet count) but not always.
If this is a possibility, your doctor might want to order a beta-glucosidase leukocyte (BGL) test which looks at enzyme activity.
Gaucher is really rare so likely a long shot, but I thought I would suggest it just in case.
Seriously, thank you! I would have never found it and anything helps.
The doctor seems very reluctant to order any tests (no idea why since I have great insurance) so I will definitely ask for the BGL test. I'm also going to ask for an "upper and lower scope" because although that sounds painful and invasive, I'm not sure how much longer I can handle being this fatigued and ill -- it's taking a toll on my sleep, my job, and my family. I'm willing to go through any tests. I think I may need to start with a GI doc though, so I may need a referral.
I've eliminated dairy, gluten, and anything processed. I'm still in pain but it seems to be less intense. Unfortunately, however, it's not disappearing, and I'm tired all the time.