Have I Been Glutened Or Are They Gallstones?

[Amelia01]

help! Help! HELP!

It is now going on 15 years that I've suffered these symptoms and I thought that by going gluten-free they would subside. But no.

Many trips to the ER and 1 inpatient and 1 outpatient recovery and still NOTHING - no clear answers whatsoever.

Every now and again (2 to 3x a year) I wake up early am (5ish) and vomit violently until nothing is left but bright yellow bile. The vomiting goes on for 6+ hours and is at approx. 30 minute intervals. Sometimes it is accompained by the big D (which is a hard thing to coordinate --- both at once).

I have been to a gazillon doctors, I have had a million tests and the ONLY thing that is consistent is that my WBC is high during these episodes (16,000 - 35,000!). The following day, I feel better and the WBC is back to normal. On an MRI the doctors saw itty bitty gallstones and a general biliary sludge. The ultrasounds didn't show anything.

I was biopsied diagnosed as celiac this past spring (totally negative bloods -- not even borderline!) and have been to the best of my knowledge totally gluten free since April 07.

I have not had the vomiting yet, but for the past 10 days I am totally C, cannot digest ANYTHING, burp foul tasting acidic something and have woken up three nights with stabbing pains in my stomach (that I can feel also in my back). I expect a good ole vomit attack anytime soon (and would almost welcome it rather than having the lasting ill feeling).

Has anybody heard or had such episodes?? Everytime I land in the ER (when really at death's door), no one can pinpoint what the problem is and it seems like they've never heard of anything similar. Usually they want to take out my appendix!

If I were glutened I figure it is a one-off ... be ill for a day or two, but 10?? The only thing I've eaten for days on end are M&Ms and from what I've read here they are gluten-free. I thought also garlic could have led to the indigestion -- but for 10 days??

Any clues from you all??

thanks

Amelia

[gfgypsyqueen]

Boy you are having some fun with the Drs! haha. First, try some foods that cause diarrhea if eaten in excess. No more M&Ms till you are normal again. Eat tons of fruit and drink water or juice. No bananas they will bind you up.

Try low acid foods for a while too. That might help with the acid.

Gallbladder problems are common for Celiacs. Have you had a emptying test? Can't remember the name. They inject a dye and you lay still while a camera takes pictures of how long it takes for your gallbladder to process the dye. Based on that and my pain, my gallbladder was removed.

Reactions are fun. Some people have a gluten reaction that starts almost immediately. For others the reaction is delayed a few days. My reactions last a solid week before I start feeling a little better and then another week before I feel sorta normal again.

ER = grrrrrr I have had pains, been admitted, etc. The first reaction is always must be a female problem, followed by, its in your head. I finally got a dr to do an exploratory surgery. He cut away adhessions and I felt so much better for years! So I have no luck with ER or Drs either

Hope you feel better

[Phyllis28]

I would suggest that you see a surgeon. I had my gallbladder removed about 7 weeks ago. My test results showed slug in my gallbladder but no stones from my CAT scan. The results of my Utrasound were inconclusive. One of the doctor's I saw explained that it was not unusual to have inconclusive results. My pancreatic enzymes and liver enzymes we elevated. Also, the attacks consistantly occured after I ate a large meal high in fat. Base on these test results and my symptoms during an attack, which were vomiting, upper abdomial pain, nausea, and severe back pain, it was determined that my gallbladder needed to come out. After the surgery my surgeon said it was full of stones.

I had to stay on a very low fat diet until I had my surgery to prevent gallbladder attacks. I feel much better now.

I hope you feel better soon.

[debmidge]

Had my gallbladder out 8 weeks ago and for 3 weeks before surgery and 3 weeks after surgery I couldn't eat at all I was so nauseas; perhaps if I did eat more I would have vomited. I had heartburn and indigestion, intestional pain with belching and rectum gas and felt as if I was dying. I lost about 17 lbs.

I had gallstones but my particlar problem was overall "gallbladder disease." My gallblader was diseased, I did not have a stone in the bile duct nor sludge. It was only a matter of time before my gallbladder became infected and then that would have meant a trip to the Emergency Room -- it's as dangerous as an infected appendix.

You probably need the HIDA scan which someone else on board was describing however my HIDA scan results were normal. Also, have you had a sonogram? My sonogram showed "posible polyps vs. adherent stones." Polyps is a serious issue as they can lead to cancer, just like polyps in the colon. I had CT scan, but the severity of the gallbladder disease did not show up on it.

My liver enzymes went up prior to the surgery too. It meant inflammation of liver due to inflammation of gallbladder which is right under/inside the liver. The enzymes went down a few weeks after the surgery.

The surgical conclusion was overall gallbaldder disease and adherent stones to walls of gallbladder. After gallbladder surgery you are not better immediately. It took me 8 weeks now to have energy and feel better..I still felt sick up until this week..no appetite..diarrhea, gas, indigestion...everything has to settle down and my doctor says it could take 6 mos to a year. I am still on low fat, bland diet. I also take Questran to reduce the amount of bile-related diarrhea.

Feel free to send me a message if you have any further questions or concerns.

Deb

[hathor]

I've had similar internal symptoms. (My doctors only ever checked for gallstones, so I can't speak to assorted other tests and their results.) I stopped having these attacks, for the most part, when I switched to a very low fat diet. (The "for the most part" comes about because staying low fat at all times is difficult if one eats in restaurants or goes to someone else's house. I also do not invariably have problems even if I do have more fat, so I can get lulled into complacency.)

I also figured out which foods in particular which seemed to set me off. Eggs seem to be the worst. I've gotten increasingly intolerant to them over the years. Animal products in general get to me. My last attack, though, was when I pigged out on peanut butter.

I've always figured it was some sort of gallbladder problem, given the symptoms and the fact that my mother and brother both had to have theirs out (or so their doctors said). But if I eat right I'm fine. I haven't had the need to go back and get all this more elaborate testing done once I figured out the problem.

When I do have one of my infrequent attacks, I've learned that I cannot eat anything until I feel better and I actually feel hungry. Following my husband's (and before him assorted friends') urging that I need to eat something to keep up my strength only prolonged the torment, and actually sometimes made it worse. It bugs him when I don't eat for days, but that is what it takes.

[LoriC]

help! Help! HELP!

It is now going on 15 years that I've suffered these symptoms and I thought that by going gluten-free they would subside. But no.

Many trips to the ER and 1 inpatient and 1 outpatient recovery and still NOTHING - no clear answers whatsoever.

Every now and again (2 to 3x a year) I wake up early am (5ish) and vomit violently until nothing is left but bright yellow bile. The vomiting goes on for 6+ hours and is at approx. 30 minute intervals. Sometimes it is accompained by the big D (which is a hard thing to coordinate --- both at once).

I have been to a gazillon doctors, I have had a million tests and the ONLY thing that is consistent is that my WBC is high during these episodes (16,000 - 35,000!). The following day, I feel better and the WBC is back to normal. On an MRI the doctors saw itty bitty gallstones and a general biliary sludge. The ultrasounds didn't show anything.

I was biopsied diagnosed as celiac this past spring (totally negative bloods -- not even borderline!) and have been to the best of my knowledge totally gluten free since April 07.

I have not had the vomiting yet, but for the past 10 days I am totally C, cannot digest ANYTHING, burp foul tasting acidic something and have woken up three nights with stabbing pains in my stomach (that I can feel also in my back). I expect a good ole vomit attack anytime soon (and would almost welcome it rather than having the lasting ill feeling).

Has anybody heard or had such episodes?? Everytime I land in the ER (when really at death's door), no one can pinpoint what the problem is and it seems like they've never heard of anything similar. Usually they want to take out my appendix!

If I were glutened I figure it is a one-off ... be ill for a day or two, but 10?? The only thing I've eaten for days on end are M&Ms and from what I've read here they are gluten-free. I thought also garlic could have led to the indigestion -- but for 10 days??

Any clues from you all??

thanks

Amelia

I had my gallbladder out it will be 16yrs this Halloween, it was 2 months after i had my first child csection. I instantly had pain in my chest area that radiated to my back and sometimes down my arm, I thought i was having a heart attack, I would throw up a lot when i had these attacks, I went to my surgeon after a trip to the ER, i never made my appt. for my ultrasound, I ended up back in the ER and had surgery that night....That is when all my Gastro problems began, and here i am just now as off late August dx with celiacs..sooooooo it seems like the gallbladder has a lot to do with celiacs. I would lay off the M&M's, you might be lactose intollerant, which means choc isn't a good thing to eat so much of..goodluck, Lori

[FootballFanatic]

A HIDA scan is a really accurate test to see how your gallbladder is functioning.

Talk to your doctor about that. I was CONVINCED my gallbladder was my problem....but I had the scan and I found out it was functioning above average.

[debmidge]

A HIDA scan is a really accurate test to see how your gallbladder is functioning.

Talk to your doctor about that. I was CONVINCED my gallbladder was my problem....but I had the scan and I found out it was functioning above average.

I had my gallbladder removed 8/16/07.....

I have to interject here....my HIDA scan was showing that my gallbaldder was functioning, but the HIDA was useless in diagnosing my inflammed gallbladder disease. The gallbladder was going thru the motions but the gallbladder was on the track to becoming infected (serious like appendicitis). HIDA just shows the tracking of the bile from the liver to the gallbaldder into the intestine. My tracking was fine - it rules out bile duct blockages which I did not have. Bile duct blockage is serious in itself; if you ruin a bile duct with stones it is difficult to repair.

My surgeon reviewed the HIDA test results and mentioned that for some HIDA isn't going to find what is wrong. After the HIDA the thing to ask is "what are the symptoms the patient is having?" If HIDA finds no problems and there's no other symptoms then perhaps gallbladder is not involved.

The biopsy of my gallbladder was: diseased gallbladder and adherent stones to gallbladder wall and my gallbladder was filled with cholesterol deposits.

I was very, very ill this summer from gallbladder disease. I don't want anyone else to have to go thru this.

My symptoms were:

For months: Stabbing Pain in back at location of under shoulderblade, always had pain on front of right abdomen - alongside ribcage --- as if I bumped into something; and an occasional gallbladder attack; indigestion, belching, gas, bloating, diarrhea, extremely tired, emotionally and physically drained, after several months of this I became nauseous and knew if I ate I'd throw it up. From this point on the little I ate was low fat and bland. I was eating about 300 calories a day and dropped about 17 pounds in a few weeks. I felt like I was dying. My co workers said to me after I was feeling better that I was gray in color. In the days just prior to my gallbladder removal, my liver enzymes started to climb; showing inflammation of liver

So a HIDA scan doesn't tell the whole story in some cases. Also gallbladder polyps are serious as they can be cancerous. My sonogram results were mixed in that it stated polyps vs. adherent stones; no way to tell which until they removed the gallbaldder. Again, HIDA didn't pick this up and neither did a CAT scan.....so don't underestimate your gallbladder ...

[Amelia01]

Thanks all for your replies. I went to my gastro doc the other day and he thinks that this constant ill feeling and trouble digesting is right now caused by the birth control pill (just started up for the first time in many many many years). Need to keep on taking it for some hormonal balancing issues but hope to not stay on longer than a couple of months.

I am unfamiliar with the HIDA test but will speak with my doctor about it. I had a gastric emptying exam which involved eating a plum cake and having a nasal tube (like an oxygen one) hooked up until I digested everything (a long 4+ hours later! exam results -- "pathological"). But it was explained to me that this is often the case with celiac disease patients.

I've been to two surgeons, one who said he is the "plumber" in the situation and will take out my gallbladder if I want it out, but wouldn't advise on whether or not to do it , the other figured I might as well take it out, but I've also seen some horror stories about people who had worsened their problems with it out.

Debmidge, other than your liver enzymes off kilter, were any other blood tests awry for time prior?

Anyone, wouldn't the MRI be the most "visual" of all exams (ultraound, sonogram, CAT scan etc)?

thanks, amelia

[lmvrbaby]

I went through weeks of sharp burning stabbing pain and was told it was a peptic ulcer. They gave me meds for that I told them the meds were not working. So I had the ultrasound done and it showed nothing, no gall stones. Next test after many blood tests was the HIDA scan. That showed that my gall bladder was working 12.8%. I asked "out of 100%" and was told yes. Then I was told to go on a low fat diet and it was my choice whether to have it out or not. Well, that was a no brainer as I could eat low fat for the rest of my life and be in pain off and on OR have it out. It came out 2 weeks later and I have been fine since. This was also when I had the endo done and was told a biopsy was done cause the doctor didn't like the looks of the small intestine, and I found out after all these tests that I had Celiac. I had no other syptoms what so ever. SO all of this news was a shock to me. Went from thought of being healthy, nothing wrong, to being told peptic ulcer which wasn't the case at all to gall bladder disease and in those findings with other tests of the Celiac. So I went gluten free and now when I slip up, most cases not knowing it I pay for it dearly.

[Generic]

My daughter had her gallbladder taken out in Aug. (She is 16 y/o) I figured out what was wrong with her by her symptoms. No Dr. ever suggested it. First they gave her pills to break up the stones, which ended up being a worse situation than the attacks. She refused to have surgery. So she ended up getting really sick. She was hospitalized for 8 days and wasn't allowed to eat the entire time. Apparently a stone moved down into the duct and blocked her, gallbladder, liver and pancreas. All her levels were through the roof and she had a severe infection and was in severe pain.

She was diagnosed via sonogram, then when she was in the hospital they did the dye test. Which I believe is the HIDA test. It isn't anything to mess around with. It could have killed her, because she was being so stubborn. I finally told her she was going to the hospital whether she liked it or not.

[ladybugpumpkin]

Your symptoms sound ALL TOO FAMILIAR!!! I had my gall bladder taken out in 2003. You should see about getting yours out. I feel much better afterwards!

[debmidge]

Thanks all for your replies. I went to my gastro doc the other day and he thinks that this constant ill feeling and trouble digesting is right now caused by the birth control pill (just started up for the first time in many many many years). Need to keep on taking it for some hormonal balancing issues but hope to not stay on longer than a couple of months.

I am unfamiliar with the HIDA test but will speak with my doctor about it. I had a gastric emptying exam which involved eating a plum cake and having a nasal tube (like an oxygen one) hooked up until I digested everything (a long 4+ hours later! exam results -- "pathological"). But it was explained to me that this is often the case with celiac disease patients.

I've been to two surgeons, one who said he is the "plumber" in the situation and will take out my gallbladder if I want it out, but wouldn't advise on whether or not to do it , the other figured I might as well take it out, but I've also seen some horror stories about people who had worsened their problems with it out.

Debmidge, other than your liver enzymes off kilter, were any other blood tests awry for time prior?

Anyone, wouldn't the MRI be the most "visual" of all exams (ultraound, sonogram, CAT scan etc)?

thanks, amelia

Amelia: my alkaline phosphate (spelling) was high too and liver AST and ALT were elevated for 3-4 weeks before and 3-4 weeks after surgery. It meant inflammation, pre-infection stage.

I do not know if MRI is most visual of all tests. CAT did not pick up my gallstones at all nor did it tell doctor that my gallbladder was diseased. All I know is that the CAT scan was very expensive....

I have to say that this is the best I've felt since about December 2006. I didn't realize how sick my gallbladder was making me. I have my energy back and I can go back to eating normally. But it took almost 9-10 weeks after the gallbladder was removed.

As to the gallbladder pills, two things with these pills: 1) your gallstones must be of a certain composition for them to work 2) it could take a year or two on the medicines to break the gallstones down. Meanwhile you could have a gallstone attack while waiting for that to happen.

Doctors don't urge you to get surgery anymore...they suggest and make you make up your own mind lest they get sued for urging you to do it. The doctor is proceeding with caution for HIS legal benefit.

Deb