Celiacs With Gall Bladder Disease

[mjtropical]

I am told I need my gall bladder out. Had two bad episodes of intense pain different from "glutenization" and pancreatitis last week. However, no stones were found in my ultrasound. Anyone else have these types of problems? Did you have the gall bladder surgery? And, did it help? Thanks for any input.

Tropical Mary

gluten-free since August, 2003

Still hoping to feel better

[angel-jd1]

There is very much a link between Celiac Disease and gall bladder problems. Taking out a gall bladder is one of the things that is sometimes done (mistakenly) before they figure out the person actually has celiac disease. Instead of running simple tests, they remove an organ!! It may sound extreme, but research shows it is true. Gall bladder problems are usually a red flag for Celiac Disease, or at least a red flag to run the appropriate tests.

I know during my long diagnosis process, the doctor was getting ready to schedule my gall bladder surgery and thank goodness found the celiac disease results before the surgery took place.

-Jessica

[SteveW]

Just had an ultrasound and they found what looks like a polyp or it may be a stone in my gall bladder. So I'm off to see the surgen.

I've been having a dull pain on my right side just under my last 2 ribs that move from front to back. I

[wildones]

Galbladder disease is associated w/ celiac. I have had my galbladder out, and so has my son when he was almost 5 yrs old . I just found out yesterday that his latest MRCP (MRI of the biliary system) shows that he has another stone stuck in his common bile duct, even though he has already had his galbladder out, and needs another ERCP.

[lisa922]

I had my gallbladder out in May 2003 after a few horrible months of illness. It was only functioning 1%. Now that they have figured out I have Celiac, I think the gallbladder only had to be removed because they missed the Celiac, however, I wonder if by that time it had to be removed anyway because of being damaged. Does that make sense? I guess I wonder how many people have had gallbladder pains and trouble, but then found out they had Celiac and cancelled the surgery. Did they get better from going gluten-free, or was the gallbladder too damaged to make it? I had to have an ERCP in April for a stone in my bile duct, and I am still having pains and slightly elevated bilirubin, but I have been gluten-free since April 23rd. You'd think that if going gluten-free were enough to fix things, then I would have at least stoped having the pains, but then again...I understand it can take years for the villi to heal, so....maybe once the damage is done, the gallbladder HAS to go. Anyone have some opinions on this??? I'd be really curious to know what you all think

LISA

[plantime]

Have your liver enzymes been checked? Sometimes gallstones are actually caused by a problem in the liver. I think a celiac should have their entire digestive tract examined, once diagnosis is made, simply because everything is so inter-related. If one thing is messed up, chances are another thing got messed up along the way, too.

[strack2004]

I had my gallbladder removed last February. Was told that in 6 months or so my digestive problems should be much improved. It is now nearly 5 months and my problems have not improved a bit. If anything they are worse. An ultrasound showed an enlarged gallbladder filled with thick bile. At the time it didn't occur to me to ask what might be causing the thick bile. Probably the pile up of thick bile caused the enlargement. I would encourage further liver testing and celiac testing before any surgery. There is even a small percentage of people who have had their gallbladders removed who get cancer in their small intestines, possibly because of the direct passage of bile into the small intestine. I am in process of getting tested for celiac. Just had my blood tests at home clinic last Wed. They will be sent to Mayos for evaluation. Hope to have the results soon. Will have to go to Mayos to get the biopsy done. I am also wondering if possibly my bile is still thick and gets stuck in the tubes so it doesn't flow properly into the small intestine.

I know Mayos has a method of stretching the tubes, but I wonder about that. It would seem to make more sense to try to find out why one forms stones or has thick bile before messing around in there some more. Maybe they do do that before proceeding with the procedure. I do know that sometimes, at least, the procedure has to be done again and again with less time between each .. I guess I'm a little scared of this whole thing and would like more information. I have gerd

and lactose intolerance as well as diagnosis of ibs pretty much constipation oriented, but with intermittent frequent stools. These are no longer painful, nor runny, although lately the stools are on the runny side. I guess I either have all or nothing in the bowel department. Any comments would be appreciated!

[lisa922]

Strack2004 -

I hope you can get some answers to what is going on. After my gallbladder was removed in May 2003, I did have a lot of relief, until Jan 2004 when everything got messed up again and then they found the stone in the common bile duct. It is so frustrating that they did not figure out my Celiac before removing my gallbladder. Of course, I don't know that it could have been saved at that point, but it would have been nice to have tried. In order to diagnose the stone in my common bile duct, they did an Endoscopic Ultrasound. I had to have sedation and then they cruised down with the endoscope to check the duct. The stone was seen in there, so then I was scheduled for the ERCP w/sphincterotomy about 10 days later. While waiting for that to be scheduled, I received the bloodwork from my endocrinologist with some results positive for Celiac, so they did the biopsy at the same time as the ERCP. The stone was already gone by then, but they still did the sphincterotomy to enlarge the muscle so if I got more stones they could flow better and also cleaned the duct out. I felt worse for about 2 weeks, and then slowly started to feel better. Of course, I also found out by biopsy that I did indeed have Celiac and damage to the small intestine, so I'm not sure how much of the improvement should be attributed to the Gluten-Free diet rather than the procedure, but I did have immediate relief due to the procedure that helped eliminate this feeling on the left side that everything was pinched up tight like I was cut in half in the middle. I guess I'm rambling, but maybe they will do an ultrasound on you to check the duct when they do the biopsy (if your bloodwork is positive) and then you would know what is going on. Mine did it in two steps instead of going right to the ERCP since that carries the small risk of pancreatitis. Even gluten-free, I am having to be very careful with my fat intake and I am not eating dairy (although I did just try yogurt in small amounts and have done ok with that) and I absolutely cannot eat peanut butter. I think that clogs up my whole duct system!! Sorry this is so lengthy, but hopefully you got something helpful out of it!!

Lisa in NC

[hapi2bgf]

I ended up with Gastroparesis (paralysis of the stomach) and a gallbladder that did not work. Instead of listening to my doctor and having the colonoscopy and endoscopy to check everything out, I went ahead and had the surgery. Hapily I feel much better without the gallbladder, but it would have been smarter to have had the colonoscopy and endoscopy done. Six months after the gallbladder came out and endoscopy was done and I found out I had Celiacs.

In my opinion, ask for a Gastrointestional doctor to do a colonoscopy and endoscopy prior to any surgery. And be sure to get a second opinion before surgery.

[strack2004]

Dear Lisa, Yes, your information is a help. However, I guess I really want to know why my bile continues to be thick or have stones. The enlarging of the muscle sounds like what was done to the lady I mentioned above and she has had to return and have the procedure done several more times first after a year and then after 6 months. I have a hard time getting to the place where I am to go to have my biopsy. I no longer feel comfortable driving that far. I have a very sore right heel which makes long distance driving iffy, foot on accelerator, brake etc. Have to be ready even if you put the car on automatic. Using public transportation is also iffy. I am presently experiencing a very different bowel pattern from what it has been. I seem to be on the diarrhea side of my ibs pattern the last few weeks, possibly because I am experimenting with balancing calcium and magnesium to try to even out my tendency to have all or nothing action from my bowel. I use almost no milk products and rather little fat: dabs of soft oleo on toast once or twice a day, 1 tsp. olive oil on romaine salad, 1 tsp. of flaxseed oil with my oatmeal in the morning. I'm sure I get a little fat with meat products, but I skin any chicken or turkey I prepare and cut out or scrape out the fat deposits underneath. I boil or steam meat products. Poultry gets boiled and the water put in frig to let any fat congeal on top, then skim it off. Hamburger I cook in a little water, break it up well and carefully rinse under hot water which dissolves the fat at least somewhat. I do hope I get some answers about why my tubes are getting clogged if that turns out to be the case. I agree with another person who wrote, forgot the name already, his comment is just below your message. I think it would be good to thoroughly investigate the liver. I am lately remembering that while living in Papua New Guinea in the 50's I had a case of hepatitis. Jagaum Hospital in Madang did not have the means to determine which kind of hepatitis I had in fact I think some of the kinds had not been discovered. I am wondering if there could be any connection there . Of course, many of my problems I have had nearly all my life. Between me and the doctors, we'll do the best we know how and leave the rest in the Lord's hands. Speaking of rambling, I would be the last one who should criticize you!. All the information you sent is helpful and gets at aspects of things I may need to decide. Cheers! Ruth p.s. glad you are getting better even if slowly.

[gormlg1]

I don't know how someone can mistake celiac disease for gallbladder problems as one of the 1st posters said. You can easily detect stones if you had to take a trip to the hospital during an attack. I had my gallbladder out in 1999 and was diagnosed w/ celiac disease in 2000. I found the gallbladder procedure was a relatively easy one compared to some of the other non-celiac/non-gallbladder problems I've had. Hang in there.

[angel-jd1]

Well I am not a doctor, so not sure how they could confuse it. However research shows that is is one of the top things that are done before a proper diagnosis is made. It is a "red flag" that shouldn't be ignored.

-Jessica

[strack2004]

Lisa: I do have my blood test back now. All were very low negative, 2, 6 and 9. These evaluations were done at Mayos on blood samples taken at local lab. according to Mayos instructions. My dr. thinks that Mayos will not even consider doing a biopsy on me with such low numbers, however, I am in process of writing Mayos to be sure . Also to bring them up to date on more recent problems. I am having diarrhea, though not urgent, up to 7 bathroom trips a day which is unusual for me. I usually have bouts of no stool between the frequent stool days. I have been experimenting with using a tablespoon of Milk of Magnesium at bedtime every night, that is the dose for antaciduse, not for laxative. I also have been taking 1/2 calcium tab (350 mg/.) with each meal. And I use a magnesium stearaate capsule with breakfast. Perhaps I need to increase the calcium citrate with D to a whole capsule one meal at a time. The stools do seem less "feathery". and I am at least having stools every day. Have always leaned more to constipation. Although I would end up taking something to get moving and it would be too much.

I did tell my Dr. that I want to try the celiac SCD diet. He wanted me to see a dietician so I did. She recommended the Minnesota Health Dept. version of a celiac diet which is considerably more lenient than the SCD. She would like me to begin with that and move toa stricter regime if that doesn't help. I guesss I would like to try going to the SCD for 3 to 6 months. Then , depending on improvement or lack of it, trying add ing some of the things that seem to be in controversy, one at a time for a period of time. Her last comment, though was "It would be nice to have a diagnosis first." Meanwhile I continue to eat bread . spaghetti, every day. I guess I wonder, too, if I have been eating enought celiac stuff to show up on the blood tests, especially on the day of the test. I have added rye bread to my list of things, also whole wheat macaroni, oatmeal daily, wheat bread, butterscotch baking chips (the coloring) , Actually, I eat more meat and veggies, including yams instead of potatoes, I do usually eat three pieces of bread a day. Will see my Dr. on Tuesday to talk over options . I know the rye bread does not agree with me. I would like to get off even the bread and oatmeal as soon as possible. Am still on the waiting list at Mayos. Cheers, Strack2004

[lisa922]

Hiya, Ruth -

Glad to hear your tests were negative, although it does make it difficult when you are trying to get a diagnosis. Do you know which tests they did on you and which lab did them? I know that different labs run different tests and I was curious to see which ones yours did. LabCorp did mine and I heard they are a little outdated. Is your plan to keep eating the pasta, bread, etc. until you see your doctor on Tuesday? Unfortunately, I have not learned anything since I last posted about thick bile and how to fix that problem. I believe I am still having problems with that since my insides have been feeling messed up lately and my right shoulder has been causing me trouble, just like before the gallbladder. Don't you just wish you could have been one of those people who just had your gallbladder out and then you were fine???? It is so frustrating to me to be going through all this junk. I had my uterus removed in Sept 03 and kept my ovaries because they were *supposed* to keep on working and cause this to be an easy transition, but now it appears they are having some trouble - in fact, I'm really not sure how much they are working at all. My yearly gyn appt was Thurs and I was expecting an uneventful visit and was pretty peeved to have him say things are a bit messed up. He even said if he had known this would happen he wouldn't have done the surgery - can you believe that??? 10 months ago this was supposed to be the best thing for me and now he is changing his story. Doctors can be a real pain in the behind!!!

I hope that you can get some answers at your appt on Tuesday and that going on the diet will help you. I do seem to be much better on the diet, but I am like you and not eating much fat. I'm not sure that is a good thing because I think I need more fat to keep my body working properly, but I'm kind of afraid to eat fat these days. Like I said, I do have some, but not a lot - no dairy and I used to get a lot from cheese and definitely no peanut butter!! Talk to you later

LISA

[strack2004]

Dear Lisa, I decided not to get another appointment on Tuesday, but rather to write down my continuing concerns and mail them to him. That way we don't waste time getting all my stuff out first, he'll have time to evaluate what I am saying and I think I express myself better on paper, anyway. Unfortunately I still forgot to put the paper with the results of my testing in my purse. I think the first one was IgG, not sure where exactly the capital and small letters belong. There was another one with the Ig and a different letter and one that included a T. Will try to remember to bring them tomorrow. I am still eating bread, spaghetti , etc. until I am sure what I want to do about all of this. When I get it all sorted out, I want to go on the strictest diet I have found, The SCD because that one seems to be designed to help heal any lesions in the small intestine. It will be tough. I found this one on USASillyYaks@yahoogroups.com. The dietician I saw last week did give me some valuable information about keeping up sufficient caloric intake and balancing carbos, proteins, and fats. Only trouble is she was talking about the diet recommended by the Minnesota Dept. of Health which is more lenient than either of the others I have run into, this SCD one and one on www.celiac.com.

I am sorry to hear that your appointment was so disappointing! One always hopes that surgery, being so drastic, will surely get rid of the targeted problem, but obviously it Ain't always so! I guess I wrote all that about the dietician last time.Will send the test titles next time I get here. Cheers, Ruth

[strack2004]

Dear Lisa: Here are my celiac bloodtest readings: Gliadin Ab Evaluation, S, Gliadin IgG, S.

I think that last was a capital S; The reading is 2.2 Ev. 25.0, negative; 25.1-49.9=

(equivocal); 50.0 = Positive.

Gliadin IgA, S 9.1 Evaluation: Same as above.

Tissue Transglutaminase Ab, 5 (IgA)

Tissue Transglutaminase (tTG) AB, S 6.5 V. 20 negative; 20-30 (weakly positive); 30 positive.

Ruth

[travelthomas]

Peppermint dissolves gallstones. My gall bladder pains went away after drinking peppermint tea for a year. I don

[strack2004]

Dear Lisa, Hope this message gets through. I did post my blood test evaluations , but it didn't show up on the board. Will try again.

Gliadin Ab Evaluation, S 2.2 25.o (negative) , 25.1-49.9 (equivocal) 50.0 (positive). The above as really Gliadin IgG.

Gliadin IgA 9.1 Same evaluations as above.

Tissue Transglutaminase Ab, (IgA) Tissue Transglutaminase (tTG) 6.

Evaluation: 25.0 negative, 25.1-49.9 (weakly positive) ; 30 (positive) I still haven't seen my doctor. I hope to do so this week. Will run the dieticians advice past him and try to make a final decision re whether to go to Mayos for a general go-over,, or to possibly go to a place called Enterolabs which does tests for celiac on stool samples. See Question on Enterolab from ashase on Celiac Disease Forum -

Pre diagnosis, testing, and symptoms. Cheers, Ruth

[plantime]

Sad to say that tests don't always show gallstones. I had two sonagrams, an xray, and a ct scan that said I had no stones, but shortly after, I passed a big one. I had a biliary scan last week, and will be having my gall bladder taken out later this month. Mine had at least one stone (the one I passed, that never showed up on tests), and it does not empty itself properly. It does cause severe pain on the right side, that burns through to the back just below the right shoulder blade, nausea, acid heartburn, vomiting, diarrhea, and swelling on the right upper quadrant. Please, get your liver and gallbladder tested thoroughly if you keep having the same symptoms as I listed.

[Guest Nukapai]

Well, all I can say is: WOW - things are finally falling into to place ... suspected Celiac, initial blood test came back clear, however, allergy testing done via York Labs has come back showing high IgG reactions to gliadin and wheat - and in the MEANtime, my doctor has found that my Bilirubin levels are abnormally high and has ordered an ultrasound to check for gall stones. He suspects liver problems or gall stones. He's stopped exploring the Celiac avenue after the initial tests, but now I feel like I should ask him to look into that again.

I've had horrible burning pain under my right ribs, constantly feeling slightly nauseous (in the first two weeks when this started, I also had the acute v/d symptoms, which, mercifully, cleared...) ... my upper stomach area is distended and even the skin on the surface is sore. When I eat, my stomach itself seems to burn with pain. About two hours after eating, I get worse pain than usual and it spreads all around my back on the right side and rises up to my shoulderblades.

In the last few weeks I've lost almost two stone in weight.

[strack2004]

Nukapai. As you see from previous posts, I had my gallbladder out and as I sit here at the computer, I have that burning pain under my right ribcage which I had before the surgery. Antacids do not help. I have been on the Selected Carbohydrates variety of celiac diet since July 26 with one major departure in August. Suspect I haven't worked all the possible problems out yet. I have to say I do not get this very strong burning as often as I did before going on the diet. Also I have much more energy than previously. That could be because I no longer eat any sugar or flour of any kind. I suspect I may be running into a problem with one or another of the fall vegetables I am eating right now. The ones I am eating are all allowed on the diet. Like various kinds of squash, beets, rutabegas. The last mentioned veggie is the greatest suspect since it is in the cabbage family. I grew a bunch of these in my garden this summer. Will be most disappointed if I can't eat them. I did slip several weeks ago and ate sweet potatoes which are not on the SCD diet. They are included on several other lists I have. One has to work the bugs out of any diet with reference to what seems to be happening in your own unique digestive system. Posts on this site have been a great help. Back to the gall bladder thing, my burning is also going to my right shoulder. It's good to talk to someone who has similar symptoms. Cheers, Ruth S.

[Guest Nukapai]

Hi Ruth! So have you spoken with your doctor about having the pain back... even though your gallbladder has been removed? Sounds suspect to me. Not that I know a great deal about this.

What kind of a diet are you on? No sweet potatoes sounds unfair!

I'm currently trying to understand where I should start with my attempt to eliminate the staples of wheat, gliadin and cow's milk.

[strack2004]

Hi Nukapai, I have spoken a number of times to my doctor about this burning pain. Lately we have got off on the celiac thing. I have been some better since doing the diet. My diet is the SCD diet recommended in "Breaking the Vicious Cycle", This diet is quite limited compared to two other celiac diets I have copies of. Hence no sweet potatoes. The theory here is to cut way back on foods that will feed "bad micro-organisms" in your digestive tract and to allow the good ones to proliferate.

The letters stand for Selected Carbohydrates diet. At first I thought the celiac disease was for celiac disease. The diet is designed to treat celiac, ibs, fibromyalgia and a bunch of other conditions. It also seems a good starting off point for an elimination approach to diet. I tend to change too many variables at one time and not to allow enough time to elapse between changes. Of course, since wheat, rye and barley and oatmeal are illegal on this diet, it is, indeed, a celiac diet. It really simplifies things since you don't have to worry about what all is in the other foods that might not be gluten free. Will be returning to my Dr. next Thursday to report on how I am doing. The burning pain had eased some several weeks ago, but now , for the last days is stronger again. Very possibly sweet potatoes, or rutabegas. I grew some in my garden this summer. Now I see you really shouldn't try them until you have been symptom free for some time. I really need to check that diet sheet more often. Cheers, Ruth Hope that you find relief from your pain. It is so hard to know what to do. Just now I am sorry I had mine removed without trying the diet which I didn't know about at the time. Actually, I am asking myself why my gall bladder wasn't functioning and what could be done about that. At that ti;me my liver function was normal. Pancreas?

[Guest Nukapai]

That sounds really restricted ... but I guess it'll be worth it if it makes you better.

I've just had my ultrasound appointment through (for the gallbladder). It's a week from Monday, on 1st of November. I don't know how long the results take to come through, but at least we're getting somewhere!

As soon as I have my next blood test results back (which should be on Friday 29th), I will make an appointment to see my doctor. I will take my York test results with me and see if he will consider Celiac testing again. I would rather not have an Endoscopy though, but I would be willing to go through with it just to know for sure.

At least food intolerances CAN dissipate over time so I might still be able to have crumpets and pancakes one day. Whereas with Celiac, well...

[annie1028]

Hi! I'm new to all this, With the attacks I was having I as well as family and friends thought it was gallbladder. He found out it was Celiac. But I also have 2 big stones, but the gallbladder is fine. Should I except in the near future that he will be removing it along with the stones?

I hope all goes well for you!!

annie1028