Worried Mom having an emotional night

[Andi5 0]

Hello everyone,

My symptoms began three years ago when I was pregnant with my son. I suffered from sharp, unending pains underneath my right rib. My OB at the time diagnosed me as having gallbladder disease, prescribed Protonix and pain meds (which I refused to take except for when the pain become intolerable) and told me to try and control it by what I was eating... in the hopes of avoiding surgery. I endured the spasms until after my son was born, at which time they gave me another ultrasound. Unable to find stones, my doctor advised me to "wait and see" what happens.

The sharp pains subsided after a month or so, but she suggested that the gallbladder should be removed or else I would endure the same pains with future pregnancies.

Just as I was getting close to having the operation (I had waited for some time because I was nursing and taking care of my infant), she closed her practice and my records were transferred to her partner. That partner then refused to go forward with the surgery... saying that there was no indication of disease.

Soon afterward I began to have pain in my back. I actually went to my chiropractor for treatment and when his adjustments didn't bring any relief he suggested I be tested for gallbladder disease. This surprised me since he had no prior knowledge of the issues I had during the pregnancy. I made an appointment with my GP. Knowing that the ultrasounds had been clear just a year prior, she referred me to have a HIDA scan with CCK.

A few minutes into the HIDA scan I ended up violently vomiting... all over the tech. I was mortified, as it was totally unexpected. He said that had never happened to him before and he sent me home to wait for the results. Ultimately, my ejection fraction in that test ended up coming back highly elevated ... at 93%.

My GP called me back in to her office to discuss options. She ended up letting me know that she has "no doubt that my gallbladder is diseased and should be removed". However, she had spoken to all the surgeons at our hospital and none of them would agree to do the surgery based upon the "normal" results from the HIDA scan. She then recommended I have more testing in the hopes that something would show up to support her thinking.

I ended up having an endoscopy / colonoscopy with biopsy. However, I didn't get a chance to speak with the doctor because I was coming out of antisthesia when he spoke to my husband. Ultimately my results came back as having "no findings" on the biopsy. A week later, the tornado in Joplin distroyed those office buildings and all the electronic records.

Since then, I have begun to notice other symptoms which I had previously ignored. I am beginning to connect them with gluten intolerance and question whether I might have Celiacs. I spoke to my doctor and she feels that they would have tested for Celiacs during my biopsy... though she can't be sure without the records. Apparently they have paper records somewhere in Oklahoma but I haven't gotten anyone who will retrieve them for me to know for sure.

Now, my symptoms include lethargy, slight depression, lack of motivation, headaches, severe bloating in my upper abdomen (often feels like I am 7-8 months pregnant with my skin so stretched that it itches) and slight cramping in my upper abdomen anytime I eat wheat or prepackaged foods. I've also noticed some loss of circulation... it seems like my fingers, arms, legs and feet "fall asleep" much easier than they used to.

I have also had strange episodes where, when bending over or twisting, I will feel a "rolling" sensation in my right rib, followed by an intense cramp. They knock me to my knees and I have to concentrate to relax before they go away. The last few times this has happened, it was so severe that I could literally see a lump about the size of a golf ball protruding from under my skin in that area.

Then, a week ago, my mom called. Unaware to me, she had been having the exact same symptoms. She had suspected that they were related to disk problems she has had in her back and so she hadn't mentioned it to me. They did an ultrasound and found that her gallbladder is full of polyps. She has an appointment with a surgeon this Thursday and will most likely be having her gallbladder removed now.

Hearing this, I contacted my doctor with this information and she suggested I have another ultrasound to see if anything has changed in the three years since I had one. I am scheduled for that test tomorrow morning.

Trying to fit all the pieces together, I have come to believe that I have a diseased gallbladder, coupled with Celiacs or some sort of gluten intolerance. This was furthur solidified for me when I read the article (referred to several times on these forums) here: http://www.pontowebti.com/gallbladder-problems-common-in-celiac-disease-may-be-missed-by-doctors-because-of-normal-tests

My concerns are that they still won't find any answers tomorrow. I am so tired of feeling sick and "off". I'm even more tired of being told that I am "perfectly healthy" and that I just need to take some antacids. I live in a small town and I question whether (aside from my GP) my concerns are just being dismissed due to lack of education on this issue.

My GP has offered to refer me to a surgeon in Kansas City who has agreed to do the surgery. Despite being angry that the surgeons here won't do it, I am also somewhat scared to have an organ removed by someone who may be a bit overeager to take it out. Also, that option would require me to pay out of network fees.

I think my present plan of action is to see what the Ultrasound brings tomorrow. Then, if I am still left with no answers I think I will insist on someone locating the records from my biopsy to see if I was actually tested for Celiac. Not sure what I'll do after that.

I appreciate this board and can see that you all are a very supportive group. By now everyone is tired of hearing about my "pains" and I don't blame them. Thank you for allowing me to let out my story and frustrations here. I'd be interested to hear any advice that you can offer to my circumstances.

Best wishes,

Andi

[ravenwoodglass 1,346]

It would be a good idea to have a celiac panel done even if you had one a while ago and it was negative as things can change. Doctors do not always do a biopsy looking for celiac when we have an endo. They need to be looking for it to find it as often the celiac changes can not be seen with just the scope. After all celiac related testing is finished then go ahead and give the diet a strict try. You have nothing to lose and may be able to keep your gallbladder. Welcome to the board and ask any other questions needed.

[Bubba's Mom 103]

Hello everyone,

My symptoms began three years ago when I was pregnant with my son. I suffered from sharp, unending pains underneath my right rib. My OB at the time diagnosed me as having gallbladder disease, prescribed Protonix and pain meds (which I refused to take except for when the pain become intolerable) and told me to try and control it by what I was eating... in the hopes of avoiding surgery. I endured the spasms until after my son was born, at which time they gave me another ultrasound. Unable to find stones, my doctor advised me to "wait and see" what happens.

Soon afterward I began to have pain in my back. I actually went to my chiropractor for treatment and when his adjustments didn't bring any relief he suggested I be tested for gallbladder disease. This surprised me since he had no prior knowledge of the issues I had during the pregnancy. I made an appointment with my GP. Knowing that the ultrasounds had been clear just a year prior, she referred me to have a HIDA scan with CCK.

A few minutes into the HIDA scan I ended up violently vomiting... all over the tech. I was mortified, as it was totally unexpected. He said that had never happened to him before and he sent me home to wait for the results. Ultimately, my ejection fraction in that test ended up coming back highly elevated ... at 93%.

I ended up having an endoscopy / colonoscopy with biopsy. However, I didn't get a chance to speak with the doctor because I was coming out of antisthesia when he spoke to my husband. Ultimately my results came back as having "no findings" on the biopsy.

Since then, I have begun to notice other symptoms which I had previously ignored. I am beginning to connect them with gluten intolerance and question whether I might have Celiacs. I spoke to my doctor and she feels that they would have tested for Celiacs during my biopsy... though she can't be sure without the records. Apparently they have paper records somewhere in Oklahoma but I haven't gotten anyone who will retrieve them for me to know for sure.

Now, my symptoms include lethargy, slight depression, lack of motivation, headaches, severe bloating in my upper abdomen (often feels like I am 7-8 months pregnant with my skin so stretched that it itches) and slight cramping in my upper abdomen anytime I eat wheat or prepackaged foods. I've also noticed some loss of circulation... it seems like my fingers, arms, legs and feet "fall asleep" much easier than they used to.

I have also had strange episodes where, when bending over or twisting, I will feel a "rolling" sensation in my right rib, followed by an intense cramp. They knock me to my knees and I have to concentrate to relax before they go away. The last few times this has happened, it was so severe that I could literally see a lump about the size of a golf ball protruding from under my skin in that area.

Trying to fit all the pieces together, I have come to believe that I have a diseased gallbladder, coupled with Celiacs or some sort of gluten intolerance. This was furthur solidified for me when I read the article (referred to several times on these forums) here: http://www.pontowebti.com/gallbladder-problems-common-in-celiac-disease-may-be-missed-by-doctors-because-of-normal-tests

I think my present plan of action is to see what the Ultrasound brings tomorrow. Then, if I am still left with no answers I think I will insist on someone locating the records from my biopsy to see if I was actually tested for Celiac. Not sure what I'll do after that.

Andi

I also had gallbladder pain while pregnant. I had a very severe episode that took me to the hospital. They were going to remove it even though I was PG, when one of the Dr.s wanted to try to reposition the baby to see if it would relieve the pressure. It did, and I went for many years without problems. Your history sounds a lot like mine.

If you are taking Protonix it can interfere with gallbladder function. Yours tested at 93% which is really good, but it may be the timing the of the squeeze that is off? Were you tested for stomach acid production? Low acid production has the same symptoms as too much. If you were put on Protonix when you don't need it, it can cause problems.

The fact that your local surgeons don't want to take out a gallbladder with 93% ejection is good. Don't rush to surgery. If you have a problem with gluten, it could be the cause of your symptoms?

The lump/spasm that you describe sounds like a hiatal hernia? I have that as well, so it sounded very familiar. Also common in Celiacs.

Have you had Celiac blood tests? Including the genetic one?

It's very possible that you have Celiac, or at least gluten intolerance? So many of your symptoms fit..and are like mine.

My gallbladder function was 30% and surgery was advised. Instead, I've gone off the Protonix, and I'm taking digestive enzymes with meals and eating gluten-free. It has aleviated some of the pain I was getting under the right ribs. I'm hoping for more healing and NO surgery.

Good luck to you..I hope you get some answers.

[birdie22 7]

Bubba's Mom...what type of digestive enzymes are you taking?

Sorry to hijack.

[Andi5 0]

I also had gallbladder pain while pregnant. I had a very severe episode that took me to the hospital. They were going to remove it even though I was PG, when one of the Dr.s wanted to try to reposition the baby to see if it would relieve the pressure. It did, and I went for many years without problems. Your history sounds a lot like mine.

If you are taking Protonix it can interfere with gallbladder function. Yours tested at 93% which is really good, but it may be the timing the of the squeeze that is off? Were you tested for stomach acid production? Low acid production has the same symptoms as too much. If you were put on Protonix when you don't need it, it can cause problems.

The fact that your local surgeons don't want to take out a gallbladder with 93% ejection is good. Don't rush to surgery. If you have a problem with gluten, it could be the cause of your symptoms?

The lump/spasm that you describe sounds like a hiatal hernia? I have that as well, so it sounded very familiar. Also common in Celiacs.

Have you had Celiac blood tests? Including the genetic one?

It's very possible that you have Celiac, or at least gluten intolerance? So many of your symptoms fit..and are like mine.

My gallbladder function was 30% and surgery was advised. Instead, I've gone off the Protonix, and I'm taking digestive enzymes with meals and eating gluten-free. It has aleviated some of the pain I was getting under the right ribs. I'm hoping for more healing and NO surgery.

Good luck to you..I hope you get some answers.

Thank you for the suggestions. I will research more and talk to my doctor about these things once I get my test results. As far as the Protonic goes, I only took it during the pregnancy and the HIDA was done a year afterwards. There is some disagreement due to recent studies as to whether a HIDA over 70% is actually "good". According to my research, some doctors consider it to be hyperactive at that stage and removal of extreme cases (like mine) often can result in total elimination of symptoms. Unfortunately, having a HIDA scan THAT high is rare... though the hyperactivity has been linked to Celiac as well. I'm just nervous to have an organ cut out when so little is known about having an overactive ejection fraction.

Thank you for your thought about the spasm being a hiatal hernia as well. I will definately check into that... it is an odd and painful sensation.

And no problem on the highjacking Birdie... I'm curious too!

[Bubba's Mom 103]

Bubba's Mom...what type of digestive enzymes are you taking?

Sorry to hijack.

I'm taking Source Naturals daily Essential Enzymes.

Each capsule contains 500mg of an all-vegetarian, broad spectrum blend of enzymes. Take one capsule with water at the beginning of a meal. If meal is very large or unusually high in fat take 2 capsules.

Contains no yeast, dairy, egg, gluten, corn, soy, or wheat. No sugar,starch, salt, preservatives, artificial color or flavor.

I bought them online through Vitacost.

These enzymes are mild compared to the ones with HCL.

I also have Meijer brand Naturals Super Enzymes..these are a little stronger and contain Betaine hydrochloride, Ox bile extract, and various fruits/veggies. I use these if I'm eating a pretty good amount of protein which is a bit harder to digest. They contain no sugar, salt, dairy, yeast, wheat, corn, or soy.

These state on the bottle not to use them if you have ulcers, gastritis, or persistant abdominal pain.

[birdie22 7]

I'm taking Source Naturals daily Essential Enzymes.

Each capsule contains 500mg of an all-vegetarian, broad spectrum blend of enzymes. Take one capsule with water at the beginning of a meal. If meal is very large or unusually high in fat take 2 capsules.

Contains no yeast, dairy, egg, gluten, corn, soy, or wheat. No sugar,starch, salt, preservatives, artificial color or flavor.

I bought them online through Vitacost.

These enzymes are mild compared to the ones with HCL.

I also have Meijer brand Naturals Super Enzymes..these are a little stronger and contain Betaine hydrochloride, Ox bile extract, and various fruits/veggies. I use these if I'm eating a pretty good amount of protein which is a bit harder to digest. They contain no sugar, salt, dairy, yeast, wheat, corn, or soy.

These state on the bottle not to use them if you have ulcers, gastritis, or persistant abdominal pain.

Thanks! Ordered some from Amazon.