Finally on to something- pancreatic insufficiency!

[Tharrell]

Hi all. As you may recall, I have been suffering from unexplained weightloss for almost 2 years now. I went from 165lb to 117lb very quickly. My body ate all the fat and is now busy consuming muscle. I have been a steady weight at 117-120lb for two month yet I dropped dress size from size 2 to size 00 which are getting loose. My doctors were more than puzzled especially since I am taking 200mcg synthroid and I eat like a horse plus adding 350 calorie Boost drink on top of that.

First they thought they finally had an answer when I tested positive for non tb mycobacterium Kansasii lung infection which can cause weight loss.
My gastro however was not so convinced thankfully! He kept testing and looking. He finally did a stool sample testing which showed pancreatic insufficiency at moderate level! I'm actually not that far off from severe. He now put me on creon which I hope works rather quickly!
He also wants to perform a endoscopic ultrasound to visualize the pancreas directly to see what is going on.

It is strange that with all the ct scan and ultrasounds of the abdomen they did not see anything wrong with the pancreas!

If any of you have gone through this do you have any insights? Will this be able to be corrected or am I stuck on taking these horse pills forever?

[irish]

This is something that is not totally common with Sjogrens, but it should be on the radar. The pancreas secretes enzymes that help with digestion. A person will have malnutrition because they have malabsorption of the needed nutrients needed to sustain health and life.

My doctor and I have been watching me for about 6 months because I have anemia and
GI symptoms that are weird. In fact, I am to have the stool testing for fat, bacteria, ova and parasites next week when I get back home.

Another thing you should have checked is your folic acid and Vit B12. I have neuropathies that are so weird, even my scalp, feel like bugs crawling all over my body, etc. The colon issues I have can be from the Vit b12 issue also as they can cause malabsorption. Loss of the intrinsic factor in the stomach is involved in this. You can do a search on this.  All my tests for pernicious anemia or the low B12 plus the folic acid are negative but my doctor has put me on B12 to see if things improve. And they may well be cause something is going on.

Doctors do not take Sjogrens seriously enough. They think it is just the lack of saliva and tears, which is bad enough as we all know. They don't stop to think of the liver and pancreas which are glands that secrete. I would not be surprised if you have a low B12 because that goes along with a malabsorption problem.

Also, did you get tested for celiac disease???This can cause malabsorption in small intestine also. The celiac sprue, as it is called, is the inability to metabolize the proteins found in wheat,(oats?) rye and barley. My late husband had celiac sprue and was on the gluten free diet for 35 years. However, he could not eat oats while
some people can. When he was diagnosed he was starting to look like he had been in a war prison and he had so much GI problems plus headaches, and other stuff. It is always possible that you could have celiac disease too, along with the pancreatic insufficiency. Let us know how things work out. Irish

[Tharrell]

Hi Irish, thanks for responding. I just had an EGD/colonoscopy done so negative on celiacs and crohn's. Suprisingly it was my B6 and folic acid that was below normal, B12 was very good. I don't do things as expected so it's taking my poor doctors forever to figure things out. My gp actually said that if somethong is rare you would probably find my daughters and mine picture. It was the same fecal testing you are having that showed the problem. It was called the pancreatic Elastase-fecal test. The split test showed twice positive for malabsorbtion. The other tests could not be performes, electrolytes, osmolality and ph, could not be performed because sample was too viscous for testing.
So now on to another EGD, but this time with ultrasound to visualize the pancreas better!

[irish]

Sounds like you have a great doctor which is half the battle. Good luck. Irish

[Carebear]

What a relief you must feel, Tharrell!

Sorry that I can't offer any personal experience, however I am going to try to file this away for myself, just in case. 

[trc1962]

So glad they have found something to explain the weight loss! Do get checked for celiac and even if you don't show antibodies see if you are sensitive. I follow a gluten free diet and am said to be sensitive to gluten and even something like someone using a pizza cutter on a regular pizza causes my neuropathy to amp up fast in my feet and legs. Even though I eat as gluten free as possible I still have small intestine villi damage and don't absorb vitamins well - I do what I can liquid under the tongue. Wishing you well and thankfully your doctor kept at it - many don't, hold onto him!