I’m hoping somone has had a similar issue and can give me some advice: i have been dealing with eating problems since September. cant eat antthing but bland simple foods(baby food, boiled chicken, crackers…)or i either am in horrible doubled over can barley breath pain in in my stomach or i throw up. have had a bunch of tests done and everything is normal except my amilace and lipase are elevated but not by more than 100. they have looked at my gallbladder which seems fine. the next test will be an MRCP to check my pancreas. i am starting to believe i have lupus/ autoimmune chronic pancreatitisis anyone been diagnosed with this?? what tests did you have done? what is the treatment. i know it is very rare. do i need to go to somewhere like cleavland clinic?? please help have not eaten anything but bland food since september!!!
rdancer, I have chronic pancreatitis. It acts up every 3 months or so, then settles down. I used to get diabetes only when I got pancreatitis, and that's when my Dr. decided it was an auto-immune attack on my pancreas. I have to take an enzyme called pancreatin to digest most foods. Now I have diabetes all the time due to the damage caused to the pancreas. Whe you are in a bad flare of it, the pain is very severe so they often put you in the hospital on IV drip and pain meds. They don't feed you, so your pancreas can rest and heal. Here's a site that tells the usual tests and treatments, but my tests were not too bad. My Dr. ignored them and paid attention to the diabetes that would come and go.
These sound like my symptoms for the last 20-plus years. There is nothing wrong with my pancreas, though. Just turns out my GI system is severely affected by the lupus/autoimmune/connective tissue disease. I hardly eat and am on several stomach meds to even be able to tolerate what little i do. I am very skinny and sometimes cross over to medical anorexia as a result. If i eat anything other than bland food, i get sick. There was one point in my 20s where all i could eat was potatoes and rice cakes. In my case, I’ve come to find that a low-calorie, low-fat, very bland diet is what i need to stick to, along with the GI meds my gastroenterologist prescribes me.
Looks like you are close to St. Louis. The best GI Doctor in the US is in St. Louis his name is Dr. Alpretti.
Here is my story in 2006 I was having stomach pain and what ever I eat came back up. even fluids.
Went to the ER and was told to go home even though some of my tests were elevated. They could not do a CT Scan that looks directly at the gallbladder duct. My gallbladder had been removed but they always leave the bile duct. Still sick and waiting for the CT Scanner to be fixed. I went to my PCP and then was admitted with Pancreatitis. Then they did an ERCP to see if I had a bile duct stone. Bad news and the dr perforated my bowel and my lung collapsed. Sad to say 2 weeks in ICU and 7 more weeks in the hospital due to infections. Found out after I left the hospital that the Dr did not fix the problem. All the symptoms came back and again Pancreatitis. This time I went to st Louis because I wanted the best if I needed another ERCP. I was told he was the best in the US.
While at Barnes Hospital Dr Alpretti did the procedure and found that I have pancreatic bile stenosis. He placed a Stent into the pancreas and was removed after 5 days. He told me that the hospital should of sent me to St Louis after the perforation. Anyway I was at St Louis for 10 days. No more episodes of pancreatitis.
I was previously diagnosed with Rheumatoid Arthritis and in May 2008 they tested me Lupus and it was positive,. the answer to why I was in the hospital with infection that they could not get rid of is because I probably had Lupus in 2006.
Now I still have mild problems but need to watch eating fatty and fried foods.
Pancreatic stenosis is similar to heart stenosis. The walls of the duct narrow causing the flow of the acid to digest the food to be low. It can restenosis in 5-10 years.
Hope this helps you.
I have chronic pancreatitis from lupus. Mine began as a sharp stabbing pain on my right side( I do not have my gallbladder),I also had extreme nausea and vomiting. My amilase and lipase were above 10,000. They did a cat scan and could tell my pancreas was inflamed along with conclusive lab work. I was immediately admitted to the hospital. When you go into the hospital they put you on IVs,pain meds and a no food diet and your there for about a week as they wean you back onto to food. After 3 different 1 1/2 week hospital stays my rheumatologist prescribed Pancreaze 50,000 units. I take one capsule every time I eat or have a snack. It helps releave the pancrease strain of producing acids to dissolve the food. Please ask your doctor about this...depending on your severity will determine the units your doc will give you. I went for a year without having a pancreatic episode and being in the hospital. I was in the hospital last month because I I began to skip taking one with a small snack because I had been doing good for so long and thought what would missing 1 tablet here or there do....You do have to watch your fatty intake...its not a magic bullet for eating out at fast food etc, but it does help ALOT. (It is very hard to find anyone else with it caused by sle lupus.) I hope this helps and I hope you begin to feel better soon!
Relichunter.
Your story is almost exactly like mine. Pancreatin and Pancrease are natural enzymes, so she'd be lucky if an M.D. knew about them and prescribed/suggested them.
Yes please get digestive enzymes n seek that doctor in St. Louis.! They sell them at health food stores with more healthy additives than the prescription pills. Best of luck n in my prayers!
When I had my first Lupus flare I remember having similar stabbing like pains in the lower stomach and back area that left me bent over and had me going to the hospital multiple times. I also had lung pain and that’s what the doctors ended up mainly focussing on.now I have a daily anti nausea drug Maxalon plus nexium to help with stomach issues…my pain lessened after I was put on plaquenil. I hope you get a diagnosis and some pain relief very soon!
My story is exactly the same as Sleepy except the dates, but everything else the same. Having Pancreatitis is NO joke! I developed it when the doctors where removing my gallbladder and it burst before getting it out which cause a stone to enter into my bile duct. Needless to say I had to have a stent put into my bile duct so I can digest my food and I had something else done, but for a long time I had to suffer with the pain before they would diagnosis me with chronic pancreatitis. I had several ERCP's done and every time I end up in the hospital for weeks at a time with just IV and fluids, such a bad feeling. Then I was diagnosis with RA for over 10 years and now they just found out I have Lupus and Sjogren Syndrome along with Thyroid and HB. Yeah it's a bomber, but when you learn your disease and your symptoms develop a stratgy as to what you will eat and do everyday. Yes, it takes some time but it's worth it. It can help you know when you might expect a flare or anything else that may be going on and you will be able to kinda keep it uncontrol or to a minmium. I hope this help once you know your body you will know what to do..........................BLESSINGS!!!! Carol
Hello, hope that your test go well for you!!! and that the doctor give you something to help you with the eating problem... Beverly L.
hi i to have had and im still having the eating problems. I have eaten so many crackers that i hate them now. 3 months ago i was rushed to kaiser 3 times the third time they kept me it was suppose to be my gallbladder, they took it out about because of the pain i was scared to eat. After about 8 weeks i thought it was safe, i was wrong im still having some pain and i try and eat one mill a day. have you tried the delmonte fruit in the jar? or ice cream? sometimes thats all i can eat. im going to start juicing so as i can find one on sale. i hope this helps you but with lupus everyone goes through something different. i will be praying for you and remeber all things work together for the good of them who love the lord.
Hey there godsgirl,
I had trouble after my gall bladder surgery for about 9 or 10 months, then I was fine. Your body has to adjust and create a whole new little pocket to hold the gall fluid, so you can get an excess until your body has adapted. It will pass, but I remember how frustrating it was. Had to sleep partly sitting up and even water seemed to bring up that awful gall green stuff. I agree, ALL things, no matter how horrible, can work for good. I think being sick is a fast track course to the virtues we all should develop but may never be able to without trials. Like courage, patience, compassion, long-suffering, and seeking God, a power stronger than themselves. So many people find God in the midst of physical suffering.
Blessings, Sheila
godsgirl66 said:
hi i to have had and im still having the eating problems. I have eaten so many crackers that i hate them now. 3 months ago i was rushed to kaiser 3 times the third time they kept me it was suppose to be my gallbladder, they took it out about because of the pain i was scared to eat. After about 8 weeks i thought it was safe, i was wrong im still having some pain and i try and eat one mill a day. have you tried the delmonte fruit in the jar? or ice cream? sometimes thats all i can eat. im going to start juicing so as i can find one on sale. i hope this helps you but with lupus everyone goes through something different. i will be praying for you and remeber all things work together for the good of them who love the lord.
Hello, that was well put Shelia!!!! Totally TRUTHFUL!!!!!!!!!!!!!! Finding Jehovah (GOD) in the mist of this(mental state of mind), when people want to Give Up , that makes me happy to know that this support system HAS REALLY helped me from along way .... Beverly L.
Sheila W. said:
Hey there godsgirl,
I had trouble after my gall bladder surgery for about 9 or 10 months, then I was fine. Your body has to adjust and create a whole new little pocket to hold the gall fluid, so you can get an excess until your body has adapted. It will pass, but I remember how frustrating it was. Had to sleep partly sitting up and even water seemed to bring up that awful gall green stuff. I agree, ALL things, no matter how horrible, can work for good. I think being sick is a fast track course to the virtues we all should develop but may never be able to without trials. Like courage, patience, compassion, long-suffering, and seeking God, a power stronger than themselves. So many people find God in the midst of physical suffering.
Blessings, Sheila
godsgirl66 said:hi i to have had and im still having the eating problems. I have eaten so many crackers that i hate them now. 3 months ago i was rushed to kaiser 3 times the third time they kept me it was suppose to be my gallbladder, they took it out about because of the pain i was scared to eat. After about 8 weeks i thought it was safe, i was wrong im still having some pain and i try and eat one mill a day. have you tried the delmonte fruit in the jar? or ice cream? sometimes thats all i can eat. im going to start juicing so as i can find one on sale. i hope this helps you but with lupus everyone goes through something different. i will be praying for you and remeber all things work together for the good of them who love the lord.