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Any Celiacs Out There Have Their Gallbladders Removed (Cholecystectomy)?

Invictus

By Invictus
in Coping with Celiac Disease

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Invictus Newbie
Invictus
Posted

Anyone have gallstones, sludge or a non-functioning gallbladder (biliary dyskinesia) as a result of celiacs? Did you still have abdominal pain after your gallbladder was removed/post-recovery?

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shadowicewolf Proficient
shadowicewolf
Posted

I think mine was bad beforehand and it made it worse to the point where it was pretty much dead (last scan on it was 5%).

No pain here. On occasion i'll have nerve twinges (kinda like a shock) but other than that its fine.

Invictus Newbie
Invictus
Posted
  • Author

You didn't have it removed?

Roda Rising Star
Roda
Posted

I'm having mine removed Oct. 24th. I never had any gallbladder problems that I know of until 2.5 years ago. At that time it was functioning at 48%(35% and below would meet surgical criteria) and symptoms were manageable and only her and there. A couple of weeks ago I had an episode. I thought there was something very wrong because I was lightheaded, nauseated, had a lot of chest pressure and my heart was beating fast. When I started burping and got pain in my RUQ and back I knew it was my gallbladder. It now is functioning at 21% and I have no gallstones. Since I had my recent HIDA scan I've been symptomatic almost everyday.

I think the celiac played a role in it going bad even though it didn't start giving me issues until I was 15 months gluten free. I also had a flare of celiac symptoms around the same time in 2010 for 8 months. I later realized I was being CC'd by gluten free oats, which I am extremely intolerant of. Once I got that figured out and under control, the GB just bothered me once in a while so I didn't worry about it. Now it's time for me to get it out. Obviouslly it isn't going to get better only worse. I don't want to wait until I am completely miserable and sick to get it out.

mbrookes Community Regular
mbrookes
Posted

Before anyone knew I had Celiac, the great idea was to take out my gall bladder, cause it must be why I kept getting sick. Nope. Gall bladder out... still sick. I think I had an unnecessary surgery, but I'm OK, so why worry about it?

KC in KC Newbie
KC in KC
Posted

Before anyone knew I had Celiac, the great idea was to take out my gall bladder, cause it must be why I kept getting sick. Nope. Gall bladder out... still sick. I think I had an unnecessary surgery, but I'm OK, so why worry about it?

This was very nearly me. Several ER visits, consult with my primary-care, exam by GE specialist -- everything pointed to gallbladder problems, so let's just take it out. But since stones never appeared on scans, I kept asking questions, and the GE doc did an output test (PIPTA?) 90% functioning -- gall bladder is just FINE!

So we keep looking for what's truly going on, and now celiac is the top contender.

shadowicewolf Proficient
shadowicewolf
Posted

Oh trust me, it was removed. The assistance surgeon said it looked dead when they took it out O.o

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joolsjewels Newbie
joolsjewels
Posted

Mine was removed before i was diagnosed. It was functioning at 21%. I am not sure it was necessary to do as i am permanently on meds for GERD anyway. But i can not change it now.

Adalaide Mentor
Adalaide
Posted

I only know I have celiac because of my stupid defective gallbladder. I had stones and kept having horrid attacks but my insurance told me that having it out was an elective surgery that they wouldn't pay for. Although they were more than happy to pay for 1-2 ER visits per month and to keep me drugged senseless on narcotics. :blink: Eventually a stone got out and blocked a duct which took it from annoying to emergency and I had it out two days before Christmas. The next morning I had to have an endoscopy to get the stone unstuck and that's when the GI doctor kind of freaked out at the state of my intestine and did a biopsy. So, blessing in disguise I suppose. If not for my defective gallbladder I'd still be getting sicker by the day with answers.

I find that life without a gallbladder is fine, it just means I get a little gassy if I eat fatty foods. I'll have my follow up blood work soon to be sure that my liver is back to normal function since it was pretty off the charts before my surgery. My doctor says not to stress about it until it's time but that it's possible I have permanent liver damage. So, I guess that's a warning to any of you who think it's fine to live life with stones and think it'll be okay. I was warned to push my insurance harder because until you get rid of the organ you're at risk of damaging your liver enough to need a transplant. Sure it seems elective but it's playing with fire and there is real risk of being burned.

shadowicewolf Proficient
shadowicewolf
Posted

WIthout mine, i can get upset stomachs with fatty and greasy foods. :3 BUT no pain!

Mine had a blocked duct in it, but it was never specified what blocked it O.o

CeliacShack Rookie
CeliacShack
Posted

Before anyone knew I had Celiac, the great idea was to take out my gall bladder, cause it must be why I kept getting sick. Nope. Gall bladder out... still sick. I think I had an unnecessary surgery, but I'm OK, so why worry about it?

My doc was sure it was my gallbladder making me ill, but all testing came back showing it was okay. I was so frustrated at that point, I almost wanted them to take the darn thing, in hopes I'd feel better. Thankfully he referred me to the GI doc next, who discovered the celiac.

Bubba's Mom Enthusiast
Bubba's Mom
Posted

I've been having gallbladder problems for a couple of years. An ultrasound showed some sludge when I first started having symptoms, but my PCP said it was fine. Over time it seemed to get worse. If I said anything my PCP scolded me that was "absolutely nothing wrong with my gallbladder."

Eventually I was Dxed with Celiac in July of 2011. My gallbladder like symptoms continued even after going gluten-free. Six months later I went to a GI that ordered a HIDA scan. My function was at 30%. I was told to consult a surgeon for biliary dyskenesia. I didn't want to have a non-resersable surgery without knowing more so looked it up. I found that PPIs help slow down function so I went off mine. My GERD had stopped once gluten-free anyway.

Going gluten-free didn't get me healthy, so with a lot of nagging symptoms I went to the Mayo Clinic. The Dr. I saw there said he would advise I kerep the gallbladder and wait for more healing, along with taking RX digestive enzymes.

A hormone (CCK) is made in the duodenum. This hormone tells the gallbladder to squeeze and the pancreas to release digestive enzymes. If there is damage in the duodenum the hormone may not be made..or not sent. Once healed, this hormone should be produced again, and function returns. That's the theory I'm living with right now.

I got glutened the first week of August and my gallbladder pain, nausea, etc came back full force. It showed me I had improved some since first going gluten-free, but still have a ways to go. I'm hanging in and waiting.

I've talked to Dr,s and read articles about people that have the GB removed, only to continue to have problems. In some cases I wonder if the person might benefit from digestive enzymes due to the CCK issue? Something to consider.

Roda Rising Star
Roda
Posted

I'm pretty strict with my gluten free diet and I do know that I am for the most part healed. When I had the HIDA scan last month they give you CCK through an IV to stimulate the gallbladder. I'm hear to say that I had moderate cramping/pain from the test. That's how they find your ejection fraction. Even with CCK stimulation mine was only functioning at 21%. I was in discomfort/pain for three days after that. Basically it's being stimulated to contract but it isn't squeezing properly.

shadowicewolf Proficient
shadowicewolf
Posted

I'm pretty strict with my gluten free diet and I do know that I am for the most part healed. When I had the HIDA scan last month they give you CCK through an IV to stimulate the gallbladder. I'm hear to say that I had moderate cramping/pain from the test. That's how they find your ejection fraction. Even with CCK stimulation mine was only functioning at 21%. I was in discomfort/pain for three days after that. Basically it's being stimulated to contract but it isn't squeezing properly.

try being 5% and having a massive indigestion attack on the table. I too was in pain for days afterward.

Roda Rising Star
Roda
Posted

try being 5% and having a massive indigestion attack on the table. I too was in pain for days afterward.

I feel for you. I'm sure that was miserable. That's why I'm dealing with it now before it gets unbearable. The belching and dyspepsia are my worse symptoms right now. I can deal with the cramping/pain.

Mom-of-Two Contributor
Mom-of-Two
Posted

I highly suspect my gallbladder is an issue, however I do not have stones or anything visible and I do not want that sucker out unless absolutely necessary! I do not have severe pain or anything that would lead me to act urgently, in fact the symptoms have been hanging around for years now. It is what got me a celiac diagnosis 7 months ago. I had bloating and gas, those were my basic symptoms. I have been gluten free 7 months now and have improved in several areas (some I never knew were related) but still have occasional gas and pressure under my ribs. My 6 month checkup showed celiac antibodies are normal now, including being neg on endomysial antibody. My pos numbers were very high at diagnosis.

At that appt, my GI suggested giving it more healing time, another 6 months, focusing on digestive enzymes, probiotics, and watching the fat connection- such as do I feel crappy after a heavy dessert, etc. and eating more chicken and fish vs red meat, although I have struggled with low iron so I have to watch my intake of iron containing meats. I think I eat too much cheese, which I need to cut out.

She said she would do a HIDA scan but it would hurt like hell if I indeed have a function issue with the gallbladder. She scared me and I don't want to do it! She also said that function test is not always accurate, there are people that test 80-90% function and need that gallbladder out in time- on the flip side, some have 10-20% function tests and don't have a real problem, some still have issues after removal. Her basic advice is I should have pain before having it removed.

I was hospitalized for 8 days 6 years ago when my appendix ruptured and I was in septic shock- I almost died. My daughter was only 2 and it was a scary time for all of us, and a horrible recovery- I had laparoscopic removal before they knew I was septic, had to then have open abdominal surgery that night. 8 weeks of antibiotics, infected incision, you name it, it happened, and I am certain my celiac stemmed from that. ("Activated")

So, I am so leery of surgery unless I 100% need it. For now, trying to get healthier and focus on healing. Hoping for the best!

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