Has anyone had unexplained weight loss?

in reply to @lildiva4jc I can sympathize with your situation, having lost 40 percent of my body weight as a result of dilation of my liver and pancreatic ducts, and I completely understand you concern about your appearance. In fact, the majority of people in my community now shun me as a result of my appearance, as I do look rather anatomical. Like you, I am unable to gain any substantial amount of weight no matter what I eat. The result of the dilation of my bile ducts is that I have zero appetite, and therefore am unable to eat like "normal" people. Often I must force myself to eat, and when I do, it is usually one of those protein bars found in the refrigerated section of the grocery store, The Perfect Bar. I eat these because of the amount of protein, not necessarily the calories. When I began losing weight, I started a weight lifting program so that I would not lose muscle mass, and everyday after my shower I have a routine lifting 2 pound weights, and the habit has paid off quite well.

I have always been one of those people who care about their appearance, and have this mantra: "If I look good, I feel good." It took a long time for me to accept the fact that I was losing friends simply because of my appearance which has drastically changed. However, I have realized that those, including many who I thought of as "friends", obviously do not share the same value system as I do, and therefore, the loss of my friendship because of my physical appearance is their loss and not mine. Obviously, it took me some time to accept that many do not have a sense of humanity as I. I have been told by others that I look like a Holocaust victim and that I should purchase makeup in an effort to make myself look less gaunt. I have found on an average, women are the worst culprits, as the guys are always very complimentary, asking me how I am feeling, telling me I look great and things of that nature. The loss of my friendship is on "them" and not me. A friend of mine told me that people in general think I have cancer and they do not know what to say. Whether this is true or not is up to question.

Unlike you, I am not a "believer", however, I do believe that "God" has a plan for me, as one of my doctors recently told me. After she said this to me, it became another mantra that has brought me some comfort. This is not to say that I identify as a Christian, but I do respect your beliefs, and if they help you that is a good thing. In all honesty, I still occasionally look at myself in the mirror and am disgusted with my appearance, but also know that I am doing the best that I can in order to function and be a member of society in the best way I know how: helping others, having a lot of humility and generally being selfless, which often creates a problem, which I am working on. Just as religion brings you comfort, art gives me comfort as I am very creative and have the ability to make beautiful things. My art is my therapy. If religion works for you, I commend you for finding something that gives you the strength to get through what often feels for me, a terrible trial.

Like others have suggested, seeing a gastroenterologist is a good idea. I only found out about my bile duct issue when I went to urgent care during COVID and expressed to the doctor an ongoing pain in my upper right abdomen that I had been complaining about to my PCP for quite some time. He ordered a CT scan three years ago, and despite multiple tests and procedures, my doctors are no closer to determining my problem than they were nearly four years ago. It can be frustrating, yes, However, I have not lost sight of the fact that I can still function fairly well, and for this I have an abundance of gratitude.

Best of luck to you.

Hi @nbens. Welcome to Mayo Connect and thanks for telling us about your loss of weight from gastroparesis -- weak muscular contractions of the stomach. As a result, food and liquid remain in the stomach too long rather than passing into the small intestine. This can result in irregular absorption of nutrients, inadequate nutrition, and poor glycemic control. I found an interesting speculation that weakened stomach muscles may be caused by neuropathy -- a nerve problem in the great Vegas Nerve that controls functions of large organs in the abdomen. That's one of a half-dozen possibilities that my medical team is going to study to deal with my digestive problems of the past six weeks. Perhaps my experience will suggest some questions for you to raise with your medical team. Martin

I just now learned of a research report that links gastroparesis and other digestive issues to off-label use of Ozempic and Wegovy to attack obesity. The report is in a letter published in the Journal of the American Medical Association.

Researchers analyzed 16 million patient prescriptions from 2006 to 2020 and found strong links between the drugs and more severe complications -- intestinal blockage, pancreatitis, and gastroparesis risks were "significantly higher" with use of Ozempic and Wegovy and other GLP-1 drugs. The FDA has updated labeling for GLP-1 drugs with warnings about intestinal blockage but allows them to remain available because so far the risks are rare.

Thank you Martin for your response. Oddly my PA at my neurologist saw no neurological link to gastroparesis (I hate to question her knowledge but I do). I have a referral in to Mayo In Jacksonville but no response. None of my DRs are really helping as I just seem to fade away between 3 month visits.

I have exact same thing, SIBO which was first diagnosed as exocrine pancreatic insufficiency and prescribed Zenpep. Had the colonoscopy and endoscopic ultrasound and pancreas is fine, but biopsy showed the SIBO. Lost 20 lbs due to it. Oh, and my Xifaxan 14 days I applied for the patient assistance fro the manufacturer and got it free. It’s a pain in the a** to do all,the paperwork but worth it.
Stool tests can be inaccurate unfortunately but suggest the author of this post at least start there?

Glad you're hooking up with Mayo in Jacksonville, @nbens. You can get that appointment through determination and pleas for help, and I'm confident you'll be glad you did. I wonder whether you can follow up on the neurological link by asking for a referral to a neurologist with a reputation for Vegas Nerve diagnoses. That will surely come up at Mayo if you ask about it. Let us know if you need help getting your appointment.

@cherawgirl, my medical team helped me look into SIBO a few weeks ago, and we dropped it when it proved not a significant factor. SIBO (small intestine bacterial overgrowth) is a condition that involves an abnormal increase in the normal bacterial population in the small intestine. My doctors warned me that the use of antibiotics to treat the condition can be sensitive and subject to errors that could cause other digestive problems of greater threats. I was pleased that I didn't have SIBO and have to risk the treatments for it. Martin

Trust in the Lord with all your heart,
and do not rely upon your own insight.
In all your ways acknowledge Him,
and He will make straight your paths.
Proverbs 3:5-6
For with God nothing will be impossible.
Luke 1:37
I am a Christian too.
I believe we need to believe, confess, trust and have faith in God.
God loves us.
Take care of yourself.
With my love

@predictable thank you again. I personally sent a plea to Jacksonville Mayo pretty much “begging” in addition to the dr referring me. I see my local GI dr on 10/24…. Who just keeps saying “you shouldn’t feel as bad as you do”. I look thru all of the forum and I see it could be much worse. I sure would like to gain control of it but I’m not getting much advice. Funny how doctors often joke about patients who study the internet… seems some of us are left to do just that. But remaining hopeful.

Hi, Lildiva!

Hope you are feeling ok.

There have been a lot of responses here! How nice!

It is my understanding-- I am not a doctor-- that unexplained weight loss can be caused by stuff NOT related to gastro/gut issues. I've tried to read all of the posts here, but I may have missed this point if previously addressed.

I urge you to see a primary care physician, if you haven't already. Whether yours is a gut problem or something else, a primary physician can help guide you through different specialists.

I am not a doctor, but I'm pretty sure that unexplained weight loss needs to be checked out fast and thoroughly.

Best to you!!