Post-operative Gallbladder/bile Duct Problems

[DreamWalker]

Uhm.. well... here goes..

I'm not sure about the relation between bile-duct issues & celiac disease (nor do any doctors that I've seen) but I've been having upper-right quadrant abdominal pain for about 13 months. Actually, it was gallbladder attacks (if that is indeed what they were) that lead to me seeing a doctor, being referred around, and ultimately discovering Celiac Disease in Oct 2008. Ironically, the initial problem (right-sided pain) that sent me to the doctor in the first place was never resolved. Anyhow, I had two HIDA scans - one before celiac diagnosis - one several months after. The first one had a 24% ejection fraction yet they forgot the CCK so I had to undergo another whose ejection fraction was 91%. Go figure. Unfortunately, the second one (January) lead to me being incapable of holding anything down for days & I wound up in the hospital in IV nutrition & IV dilaudid. None of the hospital doctors had seen a GB ejection fraction over 70% & were pretty much stumped yet wouldn't remove it. They sent me home with percocet & tramadol. I was then quickly ushered to my GI who said the pain was permanent & prescribed more tramadol. I was fed-up with doctors at that point and did not return. Honestly, I should have as the pain always became intolerable when I sat up for long periods of time. For instance, I had a night class that was three hours long & one day per week. About halfway through, I'd be in so much pain I'd have to run to the bathroom and throw up. Fast forward to July, I found a new GI who immediately referred me to a surgeon and on June 1st I had my gallbladder removed. Here's the thing, I'm worse. The pain begins on my right-side, pierces through my ribcage, spreads up my spine, and burns right between my shoulder blades. Sometimes (no idea why) it spreads to my left side/ribcage. By the end of June, I started having vomiting problems again but I had just moved to a new area (and I'm not from CA originally anyhow) and had enrolled in a rigorous summer program. So, stupidly, I attempted to ignore it. The pain kept getting worse but I seemed to be controlling the throwing up. Although, given that this pain is very position oriented, class became too excruciating to sit through. I'd be in tears running to the bathroom within 40 minutes. Only, before the surgery, the pain would leave at times. Now, it's constant & much more intense. My only way of controlling it is to simply not eat. I mean nothing. Carrot juice, apple sauce, bananas, everything sets this off and (not to be dramatic but...) it reaches levels that are .. intolerable. Fracturing my elbow hurt less than this and it lasts for hours sometimes days. A few weeks ago, I started uncontrollably throwing up in the street after eating two bananas. I went to the local ER and was admitted until... well it's all a bit blurry... sometime the following day. They did an abdominal CT & pelvic exam - all normal. Although, uhm, the shifts changed & the new doctor came back to tell me my gallbladder, liver, and pancreas looked fine - to which I doubt I replied. I had been awake, puking, and in excruciating pain for too long and I just wanted to go home. They prescribed me 15 vicodin. I saw my GI a few days later & he had no idea what went wrong but "hopes I don't have another episode" and prescribed me zofran & promethazine. Here's the thing - I'm still getting worse. And my GI (who is 3 hours of train rides away) is out of town is on vacation and obviously I had to drop my summer term. First, I withdrew without documentation as m GI said I needed to ask my GP to write a letter. I don't have a GP and have no idea where to start looking nor do I have any of my records not even the ones from my gallbladder-removal. (I ordered them three weeks ago........ I'm ordering them again but it'll take at least two weeks for them to be processed. I seriously can't wait two weeks.) School-wise, this means I'm in jeopardy of losing my admission. Is anyone familiar with the CA system? I'm from out-of-state and can't seem to navigate through the red-tape.

I've scheduled an appointment with the surgeon who originally removed my GB yet that's in six days. I'm not entirely sure they're understanding this when I say "I CAN'T EAT." I literally can't. I've been eating in very small increments & drinking warmed almond milk. It takes a great deal of force to get myself to eat as I'm becoming terrified of the pain returning to levels I can't bear - especially the night in hospital. And despite the small amounts, I'm still in tears within 10-15 minutes after eating - anything. Also, I have to be sure to lie on my stomach with a few pillows under my chest (my belly becomes very swollen after eating). Although, my computer, homework, essentially my life has been on the floor since September. Sitting up has always provoked the pain - it's just... so much worse now.

I was already underweight so this is .... scary. So, I started doing my own research online about Sphincter of Oddi & Postcholecystectomy Syndrome yet I never found out what exactly was wrong with my gallbladder as I never had a post-op with my surgeon and they never sent the records. If there were small stones the ultrasound I had a year ago didn't detect, there could be some lodged in my bile duct causing this insane amount of pain. SOD seems to be exacerbated by opiate pain medications - which - although it vaguely helped, the vicodin did aid and I was capable of eating & holding down more than warm almond milk and random bits of fruit. I'm not jaundice or vomiting bile which was listed as some surgical complication. I'm getting desperate. Some doctor somewhere has to believe me and at least run tests and the fact I'm facing expulsion is...... I can't believe this is happening. Part of me is starting to wonder if this pain could be psychosomatic. Is this possible? I can't begin to comprehend how it's possible for such a level of pain to be psychological but what other explanation can I feasibly arrive at? Whether or not this pain is in my head, I truly am desperate. Yet, I can't go back to urgent care - not just because they charge me more than summer tuition - but that night was not one I want or could relive. Besides, unless I'm throwing up my guts I doubt they'd even ... do anything. And... I quite simply cannot go back to that hospital where I couldn't move out of a position that exacerbates this pain. I don't think they believed me either despite the fact I showed up truly unable to control the throwing up, vomited all over the floor, myself, and could barely talk. I'm afraid to ask for pain-meds as I don't want *any* doctors to stop looking & think I'm some college kid after drugs so I just do my best to keep my mouth shut. But when I kept begging them to adjust the bed so I could get into a different position, the nurse would ask me what my pain level was - I'd say 8 or 9 and she'd reply "really" and walk off. The last thing is sort of stupid to complain about, but someone who hasn't held liquids down whatsoever that day can't exactly pee without being rehydrated. Yet, when I first arrived, the nurse kept demanding I pee in a cup. I'd return 15-20 minutes later with nothing telling her I needed an IV before there would even *be* any pee. She'd get flustered, return an hourish (? maybe sooner/later like I said it gets blurry) later without an IV and I'd have to try again. We kept repeating this routine until I passed out - then they gave me an IV. I still had to pee in the cup first but by some miracle my bladder found liquid. I don't understand. Is saline a crime? Did they think I was on drugs or something and were concerned it'd flush through my system? Okay. I'm sorry. This is turning into a rant. I'm just getting desperate to eat - sleep - something- and I'm losing my admission to university and quite possibly my housing if my landlord finds out I'm no longer enrolled. If anyone has any ideas..... I don't know. What would you do?

[ravenwoodglass]

Gosh I wish I had some answers for you. I am so sorry you are having such trouble. Is there anyone who can help you with this? Perhaps a parent or other family member who can get ahold of the GI who told you to contact your GP for the med slip for class withdrawl? Also did they make certain the meds they gave you were gluten free? Have they done an endoscope to see if you may have an ulcer or something else going on? I am so very sorry I couldn't be more helpful and hope someone may have some more helpful ideas for you.

[strawberrynin]

I'd wondered if they'd done an endoscopy to verify that you hadn't had a complete closure of the remainder of the bile duct. I've had something like this happen, but with gastric bypass surgery.

[DreamWalker]

Thank you for the replies.

As for what they gave me in the hospital, I did emphasize everything needed to be gluten free as I had Celiacs and tried to keep track of what they gave me but I passed out a few times/lost consciousness so I'm really skeptical of my memory. They did give me IV promethazine & zofran. (None of which stopped the vomiting but I never felt nauseas in the first place.) For the abdominal CT, I had to drink *something* white & milky that tasted like berries. Errrr. I have no idea how much of that I kept down. So, the nurse kept returning with more. It took a few hours.

Although, I told them I'd already had a clean abdominal CT in November but they gave me the dye alone (injected) and I wasn't required to drink anything. (My medical bills are getting ridiculous and I didn't want to repeat a test I've already had yet since I haven't had any tests since the surgery I agreed to it - who knows maybe the surgery altered something detectable via CT.) I was also on an EKG since I kept lapsing out of it at one point. I know anxiety can raise one's blood pressure & heart rate - obviously. Yet, I kept having the pain come in really intense waves then it'd subside and I couldn't stay "awake." My heart rate oscillated from ~160 to 62-70 bpm for awhile .... um... I'm not sure what that was about but if they gave me anything during that time, I wouldn't remember. I just recall weird sensations - like feeling as though something heavy & crushing was sitting on my chest and this powerful need to fall asleep. Then the pain would return (sharp, burning) and my heart rate would escalate again. I didn't mention that at first as I think it might be mental (anxiety?) and I'm a bit... embarrassed.

The initial doctor I was assigned was actually rather kind & was the one who not only ordered the tests but seemed to have an idea what could be causing the pain. Yet, the shift-change happened before the tests she ordered were carried out.

I had an upper endoscopy last summer to check for ulcers. My doctor put me on a PPI (protonix) despite the negative test results at some point last year which caused me to wake up in the middle of the night vomiting bile Although, months beforehand, I tried rantidine/zantac (an H2 blocker) which didn't seem to help or worsen matters. (Yet, this was before the celiac diagnosis and the acidic-burping feelings cleared up with the gluten-free diet.)

If I remember properly, it's a different endoscopy for bile-duct/gallbladder related issues. Time for google, I suppose.

And thank you again for the replies. They're useful, they're always useful even if it's just for a sanity-check. With the exception of my current GI, I don't "like" most doctors and haven't since I was little. So, I sometimes wonder if it colors my perspectives a bit.

As for contacting someone to help out.... my father knows what's going on but he's extremely busy... Plus, he's not in the immediate area and my GP is several hours away, has only seen me twice, and that was pre-celiac diagnosis, gallbladder removal, etc so he wouldn't have any records. I moved across the country last summer and pretty much picked a random doctor out of a clinic directory. (Where else do you start?) He did want me to return since my thyroid came up abnormal, yet he had to cancel at the last minute & I had already been diagnosed with celiacs (separate clinic he referred me to). I was assigned a random on-call doctor who told me it was impossible for me to have Celiacs but wanted to repeat the blood work & said there was only one celiac antibody & the gluten-free diet had no affect on its presence. (I quickly learned that one does not correct doctors.) Then she refused to check the box for the thyroid test despite the fact my doctor ordered it.... so..... I pretty much never returned. Although, I liked my initial GP. Okay. Wow. This is incredibly old information and probably irrelevant. Sorry. I really, really, need to eat or at least attempt to as I've had nothing but almond milk since yesterday morning (it's now 4 pm) and I'm dizzy, confused, etc. Plus, I can't take any supplements (calcium + vitamin D for osteopoenia) without food.

I heard that bile-duct spasms could explain Postcholecystectomy Syndrome or Spincter of Oddi and that muscle relaxants can alleviate some symptoms that come with eating. I was prescribed some ages ago (joint pain/inflammation another pre-gluten-free thing) then stopped taking them when the stiffness subsided. Maybe it'll help keep things down. The anti emetics don't work and I'm really frightened of the pain, which, obviously, they don't help with. At least I know the Soma is gluten free. I don't know what else to do except wait for student health to re-open (Monday) and hope a doctor will be willing to write me a note and head back to the surgeon (Weds). I've never withdrawn due to medical necessity without permission before yet the deadline for a W was fast approaching and my professor took one look at me and said I wasn't "at all healthy enough to be taking classes" and couldn't imagine why I'd lose my admission given the situation.... Although, she has no power over my particular college/department so the decision is up to my adviser if I don't receive a medical letter. Ahh. I'm really sorry I'm babbling. Thank you for reading if you made it through my rambling...

[EJR]

Thank you for the replies.

As for what they gave me in the hospital, I did emphasize everything needed to be gluten free as I had Celiacs and tried to keep track of what they gave me but I passed out a few times/lost consciousness so I'm really skeptical of my memory. They did give me IV promethazine & zofran. (None of which stopped the vomiting but I never felt nauseas in the first place.) For the abdominal CT, I had to drink *something* white & milky that tasted like berries. Errrr. I have no idea how much of that I kept down. So, the nurse kept returning with more. It took a few hours.

Although, I told them I'd already had a clean abdominal CT in November but they gave me the dye alone (injected) and I wasn't required to drink anything. (My medical bills are getting ridiculous and I didn't want to repeat a test I've already had yet since I haven't had any tests since the surgery I agreed to it - who knows maybe the surgery altered something detectable via CT.) I was also on an EKG since I kept lapsing out of it at one point. I know anxiety can raise one's blood pressure & heart rate - obviously. Yet, I kept having the pain come in really intense waves then it'd subside and I couldn't stay "awake." My heart rate oscillated from ~160 to 62-70 bpm for awhile .... um... I'm not sure what that was about but if they gave me anything during that time, I wouldn't remember. I just recall weird sensations - like feeling as though something heavy & crushing was sitting on my chest and this powerful need to fall asleep. Then the pain would return (sharp, burning) and my heart rate would escalate again. I didn't mention that at first as I think it might be mental (anxiety?) and I'm a bit... embarrassed.

The initial doctor I was assigned was actually rather kind & was the one who not only ordered the tests but seemed to have an idea what could be causing the pain. Yet, the shift-change happened before the tests she ordered were carried out.

I had an upper endoscopy last summer to check for ulcers. My doctor put me on a PPI (protonix) despite the negative test results at some point last year which caused me to wake up in the middle of the night vomiting bile Although, months beforehand, I tried rantidine/zantac (an H2 blocker) which didn't seem to help or worsen matters. (Yet, this was before the celiac diagnosis and the acidic-burping feelings cleared up with the gluten-free diet.)

If I remember properly, it's a different endoscopy for bile-duct/gallbladder related issues. Time for google, I suppose.

And thank you again for the replies. They're useful, they're always useful even if it's just for a sanity-check. With the exception of my current GI, I don't "like" most doctors and haven't since I was little. So, I sometimes wonder if it colors my perspectives a bit.

As for contacting someone to help out.... my father knows what's going on but he's extremely busy... Plus, he's not in the immediate area and my GP is several hours away, has only seen me twice, and that was pre-celiac diagnosis, gallbladder removal, etc so he wouldn't have any records. I moved across the country last summer and pretty much picked a random doctor out of a clinic directory. (Where else do you start?) He did want me to return since my thyroid came up abnormal, yet he had to cancel at the last minute & I had already been diagnosed with celiacs (separate clinic he referred me to). I was assigned a random on-call doctor who told me it was impossible for me to have Celiacs but wanted to repeat the blood work & said there was only one celiac antibody & the gluten-free diet had no affect on its presence. (I quickly learned that one does not correct doctors.) Then she refused to check the box for the thyroid test despite the fact my doctor ordered it.... so..... I pretty much never returned. Although, I liked my initial GP. Okay. Wow. This is incredibly old information and probably irrelevant. Sorry. I really, really, need to eat or at least attempt to as I've had nothing but almond milk since yesterday morning (it's now 4 pm) and I'm dizzy, confused, etc. Plus, I can't take any supplements (calcium + vitamin D for osteopoenia) without food.

I heard that bile-duct spasms could explain Postcholecystectomy Syndrome or Spincter of Oddi and that muscle relaxants can alleviate some symptoms that come with eating. I was prescribed some ages ago (joint pain/inflammation another pre-gluten-free thing) then stopped taking them when the stiffness subsided. Maybe it'll help keep things down. The anti emetics don't work and I'm really frightened of the pain, which, obviously, they don't help with. At least I know the Soma is gluten free. I don't know what else to do except wait for student health to re-open (Monday) and hope a doctor will be willing to write me a note and head back to the surgeon (Weds). I've never withdrawn due to medical necessity without permission before yet the deadline for a W was fast approaching and my professor took one look at me and said I wasn't "at all healthy enough to be taking classes" and couldn't imagine why I'd lose my admission given the situation.... Although, she has no power over my particular college/department so the decision is up to my adviser if I don't receive a medical letter. Ahh. I'm really sorry I'm babbling. Thank you for reading if you made it through my rambling...

Hi Dreamwalker,

I just read your post and can really empathize with what you are going through. I had my gall bladder removed in December '07 and have had terrible abdominal pain ever since. After many trips to the ER I also have gotten nowhere. It is extremely frustrating! All they ever seem to want to do is refer me back to the surgeon who took my gall bladder out and when I have seen him all he wanted to do was a colonoscopy. And that is the extent of his help. He never even took the time to listen to my story.

I don't have the vomiting that you describe. Here is how it went for me. I had my gall bladder removed because of large polyps which weren't causing me any real symptoms. Apparently they can become cancerous. A couple of weeks after the surgery I developed a daily problem with diarrhea. My potassium levels dropped many times because of the problem. This continued actually until just two months ago (about 1 1/2 years). During this time my lower bowel has become dreadfully sore. Everyday by evening it is extremely bloated with an incredible feeling of pressure. I cannot pass gas and am to say the least very, very uncomfortable. When I try to sleep the pressure and pain shifts higher up in my bowel and often causes intense pain under my left and sometimes right rib cage. The pain is so bad that I have spent many, many sleepless nights and countless very, very bad days. My life has ground to a standstill. I a;sp am having a great deal of difficulty eating. I no longer seem to be able to tolerate so many foods (basically at this point the only foods I am able to eat are white potatoes (boiled), plain chicken breast, canned salmon, green beans, carrots, canned pears, peeled grapes) and a small amount of avocado. I've been eating almost this same diet for about a year now and boy am I sick of it. Bread and cookies, dairy, eggs etc. make me very bad as does any food(s) that have insoluble fibre. I have lost 50 pounds since the surgery and certainly did not need to loose that much. I am 5'7" tall and previously weighed 168 lbs and am now 118 lbs. I force myself to eat everyday even though I know that by evening I will be in pain. It happens pretty well everyday to varying degrees. The only treatment that doctors have suggested to me is Questran (cholestyramine) which is supposed to absorb excess bile. It does not work for me at all (actually it causes me to vomit and generally feel terrible). So when I ask for help all I ever hear is you won't take the Questran (or a similar product) so we can't help you. Lovely hey! I'm supposed to take something that makes me feel worse. Go figure!

I've read a lot of the information on the internet regarding problems following gall bladder removal and none of it really seems to fit what has happened to me although I understand that some people do experience diarrhea and bloating. Just two months ago my constant diarrhea changed to constipation and my bowel became impacted. I had to go to the ER with that problem and did not enjoy the high colonic enemas. So now I have to try to keep more fibre in my diet and that seems to make the bowel pain and pressure even worse.

I wish I had some answer for you (and for me). The vomiting and pain level that you are experiencing sounds atrocious. I sure hope someone will try to figure this out for you. I just seem to get treated like I'm making it all up. You mentioned using a muscle relaxer/anti-spasmodic to help with the pain and yes, for me they do help but I hate taking them all of the time because they are very addictive. Buscopan and other mild anti-spasmodics don't work for me at all. The only one that does seem to help is a benzodiazepine and I am really frightened of using them very often.

I will say a pray for you tonight. I sure hope that you will keep in touch and if I can help you with any more information I would gladly do it.

Joyce

[debmidge]

I had GB out in 8/07. I take Questran for diarrhea - but I do not take the entire dosage (packet)

One packet lasts a day or two for me.

As to original poster....you need to see a competent GI (where are you from?) You could have a stone in the bile duct, but you'd probably be jaundiced by now. I hope you get the relief you need right away.

[Lisa16]

I believe there is a relationship to celiac and gall bladder dysfunction. I have never seen a good explanation of the relationship, but I suspect it is rather common for celiacs to be diagnosed with gallbladder disease. In the absence of stones I wish they would test for other things before operating.

I am having a hard time figuring out how long ago exactly you had the gallbladder out. Was it June 1st of this year? If so, that is only about 6 weeks ago.

This is not an easy surgery to recover from-- I had severe symptoms for well over a year after having it out. The questran did not help me. I would pass pure bile every possible way. And having the surgery seems to have kicked the celiac up a notch. Eventually my body did adjust and eventually I arrived at the celiac diagnosis, but it was a very dark time and it was very depressing to be in constant pain for so long. But it did get better.

Ok.

You definitely need to get yourself checked out for complications from the surgery. I hope they can figure it out for you and that there is an easy answer.

As for school.... generally speaking there will be something like an administrative withdrawal that you could qualify for. It may be called something else in that system, but in ours you would get it from the dean's office. It exists for people who have medical emergencies, deaths in the family, mental health issues, etc. This withdrawal should allow you to drop out for a semester or two without any financial or administrative consequences. Ususally the professor has to sign it and you have to write a brief explanation. You might also want to check out student health services to see what they could do for you.

Good luck and hang in there.

[Generic]

Ok, a bit of history and info about sphyncter of oddi. I had my first gall attack Christmas eve 07, had my gallbladder removed Jan 08. I continued to have the pain, even afterwards. I made several trips to the ER, to only be treated like a drug addict. (Just like you, I wasn't taken serously). The e.r. Dr. calls me the next morning after one of the many trips to let me know there is a 3 mm stone in my common bile duct. I begged and pleaded for them to do an an e.r.c.p. (cut the bile duct). They did, I could feel it spasming still. I begged some more for a second e.r.c.p. The Dr. finally agrees. Low and behold the stone drops out. I had a stone in there for 4 months. After each surgery/procedure I would feel no pain for several days and then the constant pain and more severe pain attacks would come creeping back. I too dropped out of college, I have not gone back and I don't think I will be able to.

Fast forward to being bounced around and having a kidney stone removed and to about a week ago I have had constant pain. I put my life on hold and am still kinda holding. I had yet anothercat scan, drank a ton of barium and had the dye injected. I was diagnosed with Sphyncter of oddi type 3.

I get neasuea (SP) and some times throw up. I often feel like I have a golf ball under my ribs and a pressure feeling around my chest, but on the inside. I have constant pain that makes me wish I was dead. The percocet dulls the pain, but it never goes away. Sometimes eating causes it to be worse, sometimes not eating causes the pain to be worse. I can't win. Stress causes it to flare up. I get my pain on the left side in my ribs. The same place I felt the gall attacks.

There are apparently three types of SOD. Type 3 is chronic and your blood work comes back normal. The Dr. told me I will have this for the rest of my life and told me they are going to refer me to a pain management specialist. This all happened most likely due to the fact that there was a stone in my duct for 4 months. I probably have severe scar tissue inside of it. They can't surgerically repair it and there isn't really any medication that helps. Smooth muscle relaxants, calcium channel blockers, anti-depressants and pain meds can "sometimes" help. I have heard also that pancreatic enzymes can help, but they can't be the time released ones and my insurance company will not not cover them.

I hope your outcome is better. If you have any questions you can send me a pm, as I don't get on here all the time.

[DreamWalker]

Generic, I'm so sorry. Your story ....

I don't understand what's wrong with the medical community. That is one of the most horrendous things I've heard. It really is. I can't believe a stone was lodged for four months and no one believed you. (I mean, I believe you I'm just ... speechless... at how cold doctors can be.)

Lisa - I've heard of exactly what you're describing in undiagnosed celiacs who have their gallbladders removed. It's why I waited to have mine taken out. I did have it on June 1st of this year. Yet, I don't have diarrhea or any of the symptoms you're describing. The only time I threw up bile was last summer when I was put on a PPI (proton pump inhibitor). Vomiting bile is what would wake me up in the middle of the night - weirdest thing. I stopped protonix & the vomiting bile issue magically vanished.

I'm still in the same position although the vomiting has let up. The pain seems to localize to the left more (exactly like the right where I felt the gallbladder attacks) & it's very sharp. It can reach the point where I have a difficult time catching my breath since inhaling deeply causes sharp, shooting pain.

My surgeon told me it was in my head. I convinced my old GI to order an MRCP. The results are still being processed & will hopefully be reviewed by my new GI. . . (Long story about where the old one went. He was actually decent.... )

Desperate barely covers how I'm starting to feel from pain alone. I have a GP now who ordered all my records from the clinic I used to go to. He told me that he'd never heard of a case like mine & didn't even know where to begin. Yet, at least he's doing something.....

As for my new GI, he wanted me to return to eating gluten so I could have a biopsy confirmed diagnosis. . .. um... no.... I'm actually rather confused about the whole diagnosis now. This is how it went down: last year (when I had a GP - I've moved since then) my GP's sub (who was ignorant) ordered a blood test for one & only one of the celiac antibodies. I had been gluten free for about a week & a half (I was put on the gluten-free diet as a trial by my surgeon & I had never heard of celiac before.) Anyhow, despite the fact I couldn't convince her to order the panel, I called the clinic back & my GP added in the panel. (My blood had already been drawn.) When I returned to my GI, she was furious, called the whole thing a mess, and canceled the panel. She insisted I had a hyper sensitive stomach not Celiac. So, I pretended I hadn't researched a single thing on Celiacs and asked if there was a genetic test since it runs in the family. (I didn't know this for sure yet but one could pretty much check off celiac-related cancers & autoimmune diseases that numerous people on my mother's side have endured.) She ordered it to "rule it out" as she was certain I couldn't have celiac. Ironically, she used my bad gallbladder to justify it. (You can't have two issues?!)

Anyhow, the sub left a message on my phone telling me the celiac antibody was positive - I'm not even sure which one. Then, I found out I had both DQ2 & DQ8 plus I was seeing improvements on the diet. (The D that I had for years had begun to let up & I had reached the point where I was getting up hourly throughout the night.... um.. it was pretty much water.. Everything I ate seemed to pass right through me. It took months for a lot of other random issues to clear up. Yet, I went from somewhere in the mid-to-high eighties in Oct to 106 lbs in April. I dropped a bit with the gallbladder attacks but only 2-3 lbs nothing big.)

That was more than enough for me. To her defense though, she sent me off for a bone scan since I had fractured my arm by falling which showed osteopoenia. So, at least she caught something. Although, I was ignorantly under the impression I had an official diagnosis since, well, it's written with the diagnostic code & everything one the bone-density scan order for my insurance company. Now, the mystery antibody test shows up as a clerical error on my records. What? Is there a way I can contact the lab directly? I'd have to find out where they send blood work off to first though & this is sort of on the back burner. I'm attempting to get this GI to take me seriously without a gluten trial. I'm... barely functioning as it is. How would eating something that very obviously makes me ill help? It's absurd.

In the very least, my new GI ordered blood work. I'm still waiting for the results yet that's more than the clinic where I had the surgery did...

They have to believe me. I was 104 (no shoes) before going into surgery. I'm around 95 now with clothes & shoes....and the only reason it hasn't dropped more is because I'm practically living on my floor. (The less sitting up - the more I'm capable of eating.)

I also ran into some info on Lyme yet I'll have to go through my GP if I want testing. (I doubt I'm barking up the right tree with that one though.)

I'm pretty much not functioning so a friend is coming to stay with me for a week thank god. I truly have some amazing friends.

As for school, unless a doctor writes me a letter there isn't anything that can be done...Also, to get the summer off my record I have to see a Dr. in student health. Since I withdrew, I'm ineligable unless I pay out of pocket. (Not possible.) Yet, I can petition later assuming a student health doctor believes me if I enroll in the fall. . . At the moment, I don't have enough money for tuition and even though I'd receive a refund if I withdrew within a week (which was my plan) ...well... it's not happening. I'm a black hole according to my parent so I'm not trusted to get the tuition back successfully. I really don't know what to do about that. If I cancel my registration - I'm out for good. If I withdraw I can try to be readmitted in the spring & I'll have a decent chance.

I reviewed my post & realized how confusing it is since I didn't clarify between the different GI's. The new one is #3. The first one moved. The second one... well.... received an angry phone call from a parent (about writing a note for school) & I was dropped as a patient.

I don't know. Does anyone have any ideas? Generic, I'm going to write you about how you went about the SOD diagnosis...... ......

Sorry. I think a lot of this was just an aimless rant. It's also a way for me to keep track of myself/remember things. My memory is beyond crappy at the moment.

Anyway, if you made it this far thanks for reading. I can be terribly confusing when I'm not feeling well.....dizziness? who knows.

[Generic]

DreamWalker I understand exactly what you are going thru. I went back to the Dr. more times than I care to

remember. I just kept telling them I have the same pain as my gallbladder pain and that it went away and then came

back. I finally got refered to another GI Dr. who took me serious. They did an endoscopy, which came back normal.

So then they moved on to the cat scan, which showed just a slight dialation of my bile duct. Given the past history of

the stone being in the bile duct for 4 months and my blood work being normal, she decided on the final diagnosis of

SOD type 3. This is a pretty good website from a Dr. who has a blog about SOD.

Open Original Shared Link

Good luck with everything. Let me know if you need anything else.

[DreamWalker]

Chronic Pancreatitis.

At least I have my answer. I look like a skeleton and I've pretty much been living on my floor this entire time yet at least it's no longer a mystery. . . and I don't feel like a loony hypochondriac.

Thank you for the link Generic.

Did you ever managed to try the pancreatic enzymes?

CP in its more advanced stages is difficult to detect as blood tests wind up returning normal as your pancreas degenerates. I had issues with my insurance covering them as well yet my GI wound up giving me several boxes of samples and each came with a free RX card. All I have to do is activate it and I have a month's supply at my fingertips.

[Generic]

I did try them but it didn't help. I am now going to a pain management specialist.