Floating stool, unintended weight loss, feel full relatively quickly

Hi Grannydee,
Thank you so much for your reply! You provided a wealth of information, and I’m just sorry you had to learn it all the hard way. I’m going to wait till I have my official diagnosis (who knows, I may be wrong about the diagnosis) then contact the National Pancreatic Association. I’d also love the phone number for the drug manufacturer.

I want you to have my personal email address as well. Thanks again, you sound like a wonderful person!
Susan

I had similar problems as you. I found out (through this site)that I had Mals (Mesenteric Artery Ligament Syndrome). I had epigastric pain, lost 35 pounds, digestive issues, and pain radiating to my back. No doctors diagnosed until I found a specialists. There’s a Facebook group Mals Awareness that is very informative. Hope you can find answers.

I had the same symptoms and lost 31 pounds in two months. I agree with grannydee about checking for EPI. I recently had a "fecal elastase" test which showed I have severe pancreatic insufficiency. I was diagnosed with EPI and will be starting pancreatic enzyme therapy soon. I also had many tests, endoscopy, CT scan and colonoscopy. Thankfully, all the common GI diseases were ruled out. It's difficult to check your pancreas without doing additional invasive tests.

Hope all turns out well with your ultrasound. All the best in getting a correct diagnosis.

Thanks so much! EGD w/ultrasound showed nothing. Having two CT scans on Monday and an ultrasound of my thyroid on Tuesday. After all of that I start eating fats for the stool elastase test. Not looking forward to that! On top of everything, I have a lump in my breast. Testing for that is 2/7.

Susan, I'm so sorry to hear you're going through all this. I have Graves' Disease (autoimmune hyperthyroidism), which was diagnosed with a radioactive iodine scan. I had lost 25 lbs. before I was diagnosed. But mine was a low TSH, and you mentioned you have a high TSH, which could be hypothyroidism. Both can be managed easily with medication. I also had Stage 1 Breast cancer, and I was so blessed it was caught early. I'm telling you all this because both of these times in my life were very challenging, but I got through both of them. Now, facing EPI is a huge challenge, but the support groups have been a lifesaver to help better understand the long road I have ahead to feel better. But I'm going to do my best to be as positive, patient and strong as I can be knowing there is light at the end of tunnel. You'll get through this, Susan! Sending you healing and positive thoughts.

What a kind note! Thank you so much! I’m sorry you’ve had to deal with both Graves and cancer, but it sounds like you’ve handled them well, and are a stronger woman because of it.

Whatever this thing is, I’m sure I’ll learn to deal with it. Though my idea of hell is having to give up fats and sugar. It’s the not knowing that is truly driving me nuts. I hope to have an answer soon.

Hi Susan,

I know the feeling of the waiting game of not knowing what is causing all these horrible, debilitating symptoms. My waiting was delayed even more because I had to start all over with a new gastroenterologist. My first doctor kicked to me to the curb and blamed my weight loss on my hyperthyroidism when that was not the case because my thyroid levels were in normal range.

The nurse called with my CT scan results and said everything was normal and to check my weight every week and follow up in 4-6 weeks. That was it while I'm in this state of misery. I called back to ask her to do a stool culture and colonoscopy. She said she'd check with the doctor, and she never called back. This put me in a worse state of worry and anxiety trying to get help and being abandoned in trying to find out what is wrong with my body. Fortunately, the doctor I have now knew what labs and stool cultures to order along with doing a colonoscopy.

Unfortunately, we must all endure the long process for a diagnosis. I hope you can endure it with all the patience and strength you got believing you will get the answers eventually and then can move on to the next step toward healing.

I'm so sorry you have to do the fecal fat test instead of the pancreatic elastase test. My doctor just ordered the pancreatic elastase test. I found this on Mayo Clinic Labs:

"Dr. Hopson goes on to explain that the pancreatic elastase test, used as an initial screening for exocrine pancreatic insufficiency, is an alternative to fecal fat testing, which can be cumbersome and inconvenient for patients."

I'm sorry you can't do anything about it now but to do the fecal fat test, but I hope all goes well with it and you'll have answers very soon.

Ditto on giving up fats and sugars. Giving up coffee was brutal, too!

Sounds like you’ve been your own best advocate. I hope I can be the same. I just read the doctor visit summary from my gastroenterologist. He ordered both the stool fat testing and the fecal elastase. I was give a stool collection kit and a list of high fat foods, but no instructions on when to eat the high fat foods versus when to collect, and what is different about collection for fecal elastase. So I have a note asking for clarification into my doctor. I want to get it right the first time!

Thanks so much for your support !

I have been following this conversation and all of the sudden no posts? I have similar symptoms weight loss in a short time, good appetite but get full very fast. Hoping to see some of your lab results. I went to urologist to see if my prostate was so large it might be restricts the rectum/anus but he did not think so, Next stop a GI doc,

Hello Chuck,
I hope your gastroenterologist will run the correct tests leading to a diagnose of what's causing your symptoms.

I had the following tests:
*Endoscopy (showed acid reflux and villous blunting) Villous blunting is damage to the small intestines and causes nutrients to not be absorbed properly. There are many causes; my gastro ruled out Celiac, thank goodness for that. I was prescribed esomeprazole magnesium for the acid reflux and stopped taking after 6 weeks when I had to do the prep for the colonoscopy. It's not recommended for long-term use; taken only for 4-8 weeks. I had suffered from steatorrhea and could not recall if I had it prior to starting the esomeprazole magnesium because I was so ill during that time and was not tracking my symptoms as I am now. To my relief, the steatorrhea stopped and hasn't returned. Not sure what to make of this, but my gastro thought it might have been the esomeprazole magnesium causing it.
*CT scan (showed my pancreas and gallbladder were unremarkable, but I have mild Diverticulosis, which is common for someone my age.)
*Colonoscopy (showed no evidence of microscopic colitis) My gastro ruled out all the associated GI diseases, again thank goodness for that.
*Fecal Elastase test (showed severe exocrine pancreatic insufficiency (EPI) The only treatment is taking pancreatic enzymes; there is no cure.
*Urine and other stool tests (all were normal; no evidence of bacterial infections)

I just went for additional blood work to check for iron and vitamin deficiencies including other tests because of the malabsorption from EPI and losing 33 lbs. the past three months.

My latest concern is that my A1C was 6.6. Pancreatic insufficiency can also affect your insulin, so I'm seeing an Endocrinologist next week to check further into this.

I just started taking Creon a little over a week ago. I'm hope in time, I can start eating more and put weight back on. It's difficult to get enough calories because of having to eat a low-fat, low-fiber and low-acid diet.

Wishing you all the best,
Linda