Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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GI symptoms and vent

sweetxheartx36
sweetxheartx36
I know that GI issues can happen with Sjogren's. I just want to see if anyone else has been through this too. I have had abdominal pain off and on for over 6 years. It started with pancreatitis. I was off work 3 months with that and they never could find the cause. Since then I've had an enlarged liver with elevated liver tests and abdominal pain. I've had many ERCP's. In March of this year the pain got so bad and did not go away within a week like it previously would. That is when I found out I had Sjorgren's. I also have an aunt that has it. In May I had a bile duct stent placed with a large sphincterotomy. I had lost 35 pounds at that point because it hurt so much more when I would eat. Since I had that done I've felt great. But today I started having that same right upper abdominal pain. It's similar to pain with gallstones. It isn't bad but i'm freaking out. The doctors think Sjorgren's could be the cause instead of bile duct stenosis. If anyone out there knows about this and has any encouragement or suggestions I would appreciate it.

Thank you
deleted_user
deleted_user
I have had everything you have described. I still have the right sided pain now and then. I eat a very low fat diet. If i eat anything high in fat my stomach kills me. I have also lost 30 lbs. My GI just diagnosed me with gastropasis. I have had all the test and procedures you have had also. I know exactly how you feel.
deleted_user
deleted_user
I don't know how much this helps...I am so new! BUT...here is my 2 cents...

I have severe GI and stomach pain issues. Had my gall bladder out last summer but now wonder if it was part of the Sjogren's complications.

After some research (I'm a librarian...can't help but do my own research) I determined that I wanted to see if Gluten could be any part of this problem. I have not been tested for Celiac but I'm sure that's coming.

I am 1 week off Gluten and have had noticeable changes in my stomach and digestion issues. Stool is becoming more "normal" each day and stomach bloating/pain/gas is improving. I have felt some nausea but nothing like it was.

Hope this helps or at least just gives another perspective :o)
Have a great day!
sweetxheartx36
sweetxheartx36
Thanks for your responses. I'm feeling better. I still have a small amount of pain in the upper right abdomen. I'm trying so hard not to panic but this has happened in the past. I start feeling small bit of pain and then out of the blue it gets so bad I have to live on norco and fruit smoothies. The anxiety from being sick from march to June plus the new diagnosis of Sjogren's is really bad. I recently started on seroquel to help with sleep and anxiety. It is helping but like everything else it takes time. Anyway, thanks for the support and letting me vent.
RTZJ9
RTZJ9
People with Sjogren's often have other autoimmune diseases. I would highly recommend a visit to a Rhumitologist and do all the blood work required to get a full picture. I suspect you have some other inflammatory process going on which is affecting your intestinal track.
GERD and IBS are often related to Fibromyalgia as one example.
Don't let Sjogren's freak you out, get some eye drops, a nice bottle to keep a drink with you always and get use to chewing food well and sipping water as you eat. During the flare ups, try to de stress as it will shorten a lot of stuff going on.
deleted_user
deleted_user
I was just diagnosed with Sjogren's a few months ago and autoimmune hepatitis a few weeks ago. Scary sounding stuff.
deleted_user
deleted_user
Wow! Great, and not so great to see your post. Great because I am trying to figure out what the hell is wrong w/ me and what you describe is pretty much what I'm going through at this moment. (So much pain, I have to miss my daughter's back to school night.
I have to tell you that I was diagnosed with Celiac before the Sjogren's, so I've been off Gluten for 13 years and though some may notice releif for them, I have not noticed any difference in my SS or fibromyalgia. Maybe if I were actaully on Gluten, I'd have more pain. I had thought that being off gluten would solve my GI problems but now this. I can't find a lot of info on SS and gall bladder issues, but it makes sense that if we have moisture production issues, we may have bile production issues. I don't think I have stones though. I had a clean ultrasound just two months ago. Are all you SS folks getting the GB out for stones or other reasons?
I guess I need to see my rheumy.