I am absolutely desperate for a diagnosis.

[Fairy]

Hi guys. I've been MIA for some time, as my life, as with all of you I'm sure, got insane, and I decided I needed a break from some of the online commitments. I'm back right now because my husband is very sick, and I don't mind telling you, I'm at the end of my rope desperate. I think it's got to be his gallbladder, but the doctors aren't sure, and his level of suffering is kind of killing me. My eyes have officially glazed over reading the same stuff over and over, and I could use some other opinions.

* DH has always had a sensitive stomach for at least the 21 years I've known him, and thinks he has an insensitivity to dairy. If that's true, it's a random, inconsistent insensitivity that makes zero sense.

* Four or five years ago, DH got really sick, chest pains, vomiting, painful gas, we rushed to the hospital. It was basically dx'd a virus and dehydration, but they did find gallstones on the u/s, which were deemed an anecdotal finding, not a cause. He got better.

* Cut to some time last year, random gastrointestinal attacks start coming far more often. Maybe four or five last year? Intense upper GI gas, belches that won't stop and can't be quelled, painful bloating that won't go away, and violent vomiting for hours. HOURS. Six, seven, eight times in an overnight. The next day he's wiped out and can't fcn.

* This year I've lost count of how many times this has happened in just the last five months, but at least once a month until April & May, when it's been five times just in those two months alone. Three times this past week including tonight.

* U/S found the same exact stones and same exact polyp as the scan four years ago with zero change to the size and shape of the polyp, they say it's 99% nothing and not the polyp. The rest of the u/s was inconclusive, so he's scheduled for a HIDA scan, which is a fcnl test of the gallbladder on Thursday. Then they say they'll know if it has to come out of if it's a food allergy, and those are the only two things they think this is.

* No fever, he's NOT dehydrated, there's never a significant lower GI manifestation, it always has to be thrown up.

In the meantime, my poor DH is afraid to eat, because I cannot say enough how random and inconsistent it all is. He ate at a Japanese steakhouse last night, including fried rice, ice cream, and cheese earlier, and he was FINE. Buttercream frosting on a cupcake, and FINE. Tonight he ate a fresh salad with no dressing and chicken soup, and he's having another attack and about to throw up. He can eat all manner of dairy, gluten, and red meat and be fine, and the next time he does it he's not fine. I've already done all kinds of elimination testing, and we can't pinpoint a thing he'd be allergic to.

Additionally, he's never once gotten sick on food I made at home. Only when we eat out. Cheap restaurants, expensive restaurants, fine restaurants, fast food, it's all in scope as potential triggers. He's also never gotten sick out of town, where he spends 75% of this time. Ever. In 15 years, never once has he had an attack out of town, only here at home, which is only ever Thursday night through Sunday afternoon (he's working at home half this particular project, so he's home more right now). Finally, he's never gotten sick in the morning or daytime, only later at night starting at about 7pm at the earliest, it usually hits about 10pm then goes on all night long.

This was very long, I'm sorry ... some things never change, I guess. But we're not convinced that the HIDA scan is going to turn up anything if the u/s didn't. I have had 400 heads up my crotch and been cut open 15,000 times, so when I go to the hospital I am happy to stick out my arm for the IV and say which OR today? DH has never had ANYTHING and gets very anxious when he's sick or at the concept of any hospital procedure. But even he's so desperate that I think he'd let them cut off a finger if it would cure this.

It sounds classic gallbladder to me. Doctors aren't so sure. I'd appreciate any input. Thanks so much.

-- Fairy

[crayonblue]

Fairy, glad to see you back. I've only got one possibility. My younger brother had similar symptoms and did have his gall bladder taken out. It didn't help. He still has stomach issues but over time the severeness has wained. For several years it was debilitating to the point that he kind of withdrew from life. I was poking around on the internet recently and found "abdominal migraines". I think that is what my brother suffered with for years. http://www.webmd.com/migraines-headaches/abdominal-migraines-children-adults

[eagle]

fairy, charles is an (online) friend of mine. read this and see if this helps...

http://www.liminality.org/archives/262/

in his case it was gall bladder. i dont have any personal experience. im only posting in hopes that it will somehow help you.

[KpbS]

I agree, sounds most like gall bladder to me. Very odd that he hasn't had any problems with food cooked at home or foods while traveling. Mysterious.

Regardless, I hope you guys can get some clear answers soon! I hope he can get all the way better. Sending big hugs, Fairy! :hug: :hug:

[KpbS]

Interesting theory about the abdominal migraine--Corey's son has had these. Hope she will chime in also.

[american_mama]

Fairy, I was just talking to DH two days ago about something you once posted. I am glad to see you again, but very sorry for the reason you are posting. It sounds like a horrible situation.

I have no advice, but I do think sometimes things don't follow a textbook pattern. When I had appendicitis, it was preceded by two severe vomiting attacks in the preceding three months, which is apparently atypical. The third time, I went to the hospital and still it took 24 hours to diagnose due to atypical presentation. Like your DH, I had never had IV's or surgery and only been hospitalized for childbirth. It was a big deal to me and I would just follow your DH's lead if he wants to be babied, wants to talk about his fears, seems to dwell, etc.

I also found it interesting that you say it's only food eaten out and locally. Since you say the type of restaurant varies, I wonder if there are other factors common to many different dining out experiences.... higher fat content, additives in the food, different spices/oils, contamination with other food or something else in a commercial kitchen, larger quantity of food, different time of eating, the addition of alcohol with the meal. As for happening only locally... well, that seems like a psychological component to me, or else mere coincidence.

I truly hope you find a solution.

[mom2binsd]

No idea on a diagnosis, have you been to multiple docs?

Hope something definitive is found, I'm surprised they don't want to take out the gallbladder, you don't need it and I bet that might solve the problem.

Good to see you on the boards!

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[citymama]

No advice, just wanted to offer p&pt and hope that you'll find the correct dx soon. I am glad to see you back, although I wish it was in more positive circumstances.

[Tondi G]

My uncle has a very rare thing called Cyclic Vomiting Syndrome. It might be something to research. He has these attacks that come out of nowhere. He just pukes and pukes and feels like hell. Then a day or so later he is fine. http://cvsaonline.org/what-is-cvs/

[essnce629]

I have no advice at all Fairy, but just wanted to say I'm so sorry that you're dealing with this. It sounds horrible. I hope you can get some more leads from the suggestions on the board. (((HUGS)))

[daniele_ut]

My uncle has a very rare thing called Cyclic Vomiting Syndrome. It might be something to research. He has these attacks that come out of nowhere. He just pukes and pukes and feels like hell. Then a day or so later he is fine. http://cvsaonline.org/what-is-cvs/

This was going to be my suggestion as well. The daughter of one of my best friends has this and her attacks are very similar to what you are describing.


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[JustMe]

I was going to say abdominal migraines too!

What you describe sounds an awful lot like what happens to my ds, and the biggest theory is abdominal migraines. He was getting them pretty frequently, but it has really slowed down so we have stopped pursuing a dx at this point...but that's where we were heading.

So good to see you back!

[kdeunc]

I was going to say abdominal migraines too!

What you describe sounds an awful lot like what happens to my ds, and the biggest theory is abdominal migraines. He was getting them pretty frequently, but it has really slowed down so we have stopped pursuing a dx at this point...but that's where we were heading.

So good to see you back!

:yeahthat: DS had these same episodes for several years. His have slowed down too-he's 11. We come from a strong family history of traditional migraines. I will say that with DS, once his "attack" was finished (usually 5-6 hours) he was perfectly fine, ready to eat, etc. If I were in your DH's place I would have my gallbladder removed despite what the tests say and see if that helps. If not, then look at some of these other options. Best of luck!!

[Philly Mom]

Has he had a colonoscopy? Have they ruled out colitis or crohn's?


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[MamaMolly]

Have they checked his pancreas? What you describe sounds a lot like what DH had leading up to his pancreatitis attack in 2010. It became necrotic and we nearly lost him. :( We still don't know what caused the pancreatitis, he doesn't have the lifestyle factors (heavy drinking) but we have narrowed it down to an association with his triglycerides medicine or perhaps a scorpion bite, both of which are distinct possibilities for us.

When we went to the ER they first thought it was his gallbladder, too.

[AnnieW625]

Lots of mojo coming your way.

[egoldber]

I was also wondering about cyclic voming. I have a friend with CVS and his attacks sound very similar.

[SASM]

No advice to offer but sending huge (((hugs))) your way. You have a lot of sound advice... I hope some of these suggestions help. My only thought is a commercial additive such as MSG.

[Indianamom2]

I'm so sorry to hear about all the trouble your husband is having. I know how hard it is to go to great lengths to figure out what in the heck is wrong. I am glad to see you around again though! :)

I definitely think the HIDA scan is a good idea. Sometimes that shows gallbladder problems that no other test will show. My in-laws have had issues with their gallbladders and had them removed. A lot of your DH's symptoms sound very similar to their symptoms, which in 2 of the 3 cases where not typical and only found with the HIDA scan.

I also think I'd look into abdominal migraines and cyclical vomiting. I don't have any real experience with either (I just get regular migraines with nausea), but if the HIDA scan doesn't show anything, that would probably be my next route.

I hope you and your DH can get some concrete answers (and relief) ASAP. :hug:

[R2sweetboys]

Yikes, that sounds just awful! Is your DH seeing a gastroenterologist? Has he had an upper GI endoscopy? I'd want someone looking at this area to make sure there is nothing that needs to be addressed. It's a fairly quick procedure and they'll dope him up with something like Versed so he won't remember it. :D DH has had one and my dad has had many without any problems.

As far as dx, it certainly could be the gallbladder but I wouldn't want it removed unless they strongly believe that is the problem. ( I wouldn't want it out "just to see if it helps" without an upper GI scope first). The first thing I thought of was possible H.Pylori infection. http://www.mayoclinic.org/diseases-conditions/h-pylori/basics/symptoms/con-20030903 H.Pylori is a bacteria that many people have without issue, but for some it can cause problems. DH had it and was dx after his scope. His symptoms were intermittent nausea that came on VERY suddenly(no vomiting) and would only resolve after a belch or big yawn.(???) He was treated with the standard triple med cocktail of abx/abx/acid reducer and is now better. My dad also tested positive for H.Pylori which had turned into MALT lymphoma in his stomach. MALT lymphoma is often caused by long term untreated H.Pylori infection. I do not say this to scare you, just to offer as much info as possible. It is highly treatable, my dad is considered cured and is healthy today.

Good luck to you in finding answers soon. I too am glad to "see" you but am sorry for the circumstances. :hug5:

[SummerBaby]

I recently had a HIDA scan for suspected gallbladder problems. I don't vomit, but I have many of the other symptoms your DH has. The HIDA scan revealed my gallbladder only functions at 12% normal rate- it is called biliary diskenesia. If the gallbladder is his problem he should know when he has the scan- they inject you with something that makes your gallbladder contract. When they did that to me, it replicated my symptoms exactly.
Good luck- I hope they can figure it out!

[TwoBees]

No suggestions, just lots of :hug:

I hope you figure it out soon.

[kittymom]

DH had similar symptoms and it was his gallbladder. He needed the HIDA scan to diagnose it because there were no stones. It took 2 months, an ER visit because he initially thought he was having a heart attack etc before anything was diagnosed because he had severe nausea and pain but not in teh typical pattern. The HIDA found a 15% ejection fraction which essentially means that it wasn't working well at all. It also means that it was not sudden but instead going downhill for a long time and it was also exacerbated by eating out bc we eat very low fat and healthy. Also, it took him a while to rebound from the surgery to remove it because of what they called "sludge" in the common bile duct that needed to clear. Now he is doing great and is feeling so much better. He was SO sick for long time until they figured it out. I have no experience with CVS or abdominal migraines but I am guessing those are not diagnosed until everything else is excluded.

[Fairy]

Thank you so much for all the comments and advice. Very helpful, and I appreciate it so much. Thanks for nice welcomes back, too :-). Last night was not as bad as it was starting out to be. For the first time he pulled something I do, which is he refused to throw up. All the other symptoms were there, but he gritted his teeth and refused. This morning he's better, but his left lower abdomen is tender and a little warm. Unless his organs are reversed, which I'm thinking they'd've found by now, it's not his appendix. But that's not where the gallbladder is, either. I suggested we just go to the ER today and move things along faster, but he refuses. Part of my frustration is that I'm great with medical everything, he's not. So, he suffers, I suffer, we wait for the Thursday HIDA scan.


Fairy, glad to see you back. I've only got one possibility. My younger brother had similar symptoms and did have his gall bladder taken out. It didn't help. He still has stomach issues but over time the severeness has wained. For several years it was debilitating to the point that he kind of withdrew from life. I was poking around on the internet recently and found "abdominal migraines". I think that is what my brother suffered with for years. http://www.webmd.com/migraines-headaches/abdominal-migraines-children-adults

This is definitely not it for DH, but lemme tell ya, eye opener FOR ME. I have had these all my life and had no idea until I read this. I get migraines, and I always know when one is coming on; I've got them pretty well managed now, tho I just had one last week that was killer. But I've also had these phantom stomach pain attacks that are debilitating. Had a couple last year. Nothing helps but waiting it out. I always thought it was popcorn and sushi that I was getting sick on, now I just wonder if an ingredient is a trigger. Anyway, gonna look into this for myself, cuz I felt like I was reading about myself when I read this. Thank you!


fairy, charles is an (online) friend of mine. read this and see if this helps...

http://www.liminality.org/archives/262/

in his case it was gall bladder. i dont have any personal experience. im only posting in hopes that it will somehow help you.

Very interesting stuff. His whole perspective on the surgical experience was amusing. Not a haha funny amusing, but a kind of fascinated amusement, cuz my perspective is so different. Every time I have an OR experience (been a couple years), I try to notice something new. Last time I tried to not go under with the MAC. I knew I was going to lose conscious consciousness, but I literally tried to stay as aware as I could. Last thing I remember was that thought, then I was waking up. Charles's experience was good to read about, cuz not everyone is all "hey man, 'sup?" about surgery. I'm the weirdo there, I know. His experience sounds alot like DH's. It was kind of calming for me to read it.


Has he had a colonoscopy? Have they ruled out colitis or crohn's?


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He needs a colonoscopy, and I've tried, but he's not wanting to. His mother barely survived the same cancer Farrah Faucet died of, so it's in his family history, and he knows this. It's not that he's in denial, he just is in serious avoidance. Even I do not want a colonoscopy, but I'd do it. He's understandably eh on this. But I think this wake up call is a good one. Maybe they can do one while he's under for the inevitable gallbladder. I'll check. He has no symptoms of Crohn's or Colitis, there's never diarhhea (a word I can never spell -- ever) involved, it's all upper GI.


Have they checked his pancreas? What you describe sounds a lot like what DH had leading up to his pancreatitis attack in 2010. It became necrotic and we nearly lost him. :( We still don't know what caused the pancreatitis, he doesn't have the lifestyle factors (heavy drinking) but we have narrowed it down to an association with his triglycerides medicine or perhaps a scorpion bite, both of which are distinct possibilities for us.

When we went to the ER they first thought it was his gallbladder, too.

I don't think it's his pancreas from the positioning, but I'm adding that to the things I'm askign the doctor about.

I didn't go into the u/s room with him, but this is a lesson to me that I need to from now on. I ask quesitons, I look at the screen, I am a verbal kind of patient. DH is not. He said she said, "it's a mover" about the stone, but he didn't ask what that means. I would have asked how the other organs nearby look, but he doesn't ask these questions. I do. Lesson to me.

[wendibird22]

I agree with PPs...HIDA for gallbladder, abdominal migraines, cyclical vomiting, etc. I also would strongly encourage a celiac blood panel and an endoscopy (not colonoscopy...endoscopy goes further up) to rule out gluten. I totally get what you are saying about having gluten and not seeing symptoms and then having them appear during a seemingly harmless meal. Cue me. I would've sworn to you there was no way gluten was my problem. There was no pattern to my attacks. But 3mos on a gluten free diet and I was a new person. I've since read a lot from people in the GF community (celiac and non celiac alike) who've had their gallbladder removed for low functioning only to have their symptoms continue. Scary! Gluten in those who are intolerant tends to cause systemic inflammation which impairs gallbladder function, remove the gluten and the function improves. Remove the gallbladder but not the offending food and little improvement.

If he's going to undergo other testing the celiac blood panel (as for the full panel) is just an easy blood draw. DH would need to be on a full gluten diet for accurate results. After the testing it might be worth doing a full gluten elimination diet for at least 8wks and see if there's improvement (can do while you are doing all the other testing). That means no hidden gluten (soy sauce, things with malt, etc).

I really hope you get to the bottom of it. It sounds positively horrible! P&PTs to you both!

[Fairy]

I recently had a HIDA scan for suspected gallbladder problems. I don't vomit, but I have many of the other symptoms your DH has. The HIDA scan revealed my gallbladder only functions at 12% normal rate- it is called biliary diskenesia. If the gallbladder is his problem he should know when he has the scan- they inject you with something that makes your gallbladder contract. When they did that to me, it replicated my symptoms exactly.
Good luck- I hope they can figure it out!

I had no idea this would happen during the test (replicating the symptoms). I DID ASK what would happen during the test, if he'd be in pain or if there would be a reaction, and they said NO. I really appreciate this information, thank you, I'll be ready.


DH had similar symptoms and it was his gallbladder. He needed the HIDA scan to diagnose it because there were no stones. It took 2 months, an ER visit because he initially thought he was having a heart attack etc before anything was diagnosed because he had severe nausea and pain but not in teh typical pattern. The HIDA found a 15% ejection fraction which essentially means that it wasn't working well at all. It also means that it was not sudden but instead going downhill for a long time and it was also exacerbated by eating out bc we eat very low fat and healthy. Also, it took him a while to rebound from the surgery to remove it because of what they called "sludge" in the common bile duct that needed to clear. Now he is doing great and is feeling so much better. He was SO sick for long time until they figured it out. I have no experience with CVS or abdominal migraines but I am guessing those are not diagnosed until everything else is excluded.

I kind of am teary after reading this cuz it's exactly DH's experience. Thought he was having a heart attack (happened twice now that I remember, there were two ER visits in the span of a year in 2008 or 2009 or so), and I cook very low fat, extremely healthy, and that might be why it's restaurants that do this to him. When he's on the road, he is more of a subway, chipotole person, and if they go out to a restaurant he tends to get salad, tho sometimes he's livin' it up with higher fat, too. But while home and eating out, I'm 100% sure that the foods are a ton higher in fat than what I cook at home. I make alot of ground beef, and I have been getting 85% cuz it's cheaper when it's grass-fed, but I rinse it to hell and gone after browning it before doing anythign esle with it. I also do alot of ground turkey, and when I pan sear a chicken breast with or without breading, it's olive oil, never butter, and it's half bread crumbs half oatmeal. Things are fallign into place with this post, and i'm thinking very carefully about what exactly I'm cooking

thank you again for all the responses!

[Kindra178]

First, I am so sorry you are dealing with this. I think there may be a combo of things going on. I think he needs a scope and colonoscopy asap. Do you guys like your GI doc? I have a great rec if you are interested.

Next, a dairy sensitivity may be worsening these existing symptoms. When a person has a dairy sensitivity, the symptoms can be very non specific, like acid reflux or bloating. To complicate matters, even the most dairy sensitive person can tolerate a certain amount of dairy, especially if it is butter. Put another way, a dairy sensitivity could be described as filling an ever changing cup of water. Some days, you can tolerate more, other days less. You simply never know when that proverbial cup is going to overflow. Eliminating all dairy (casein, whey, etc) for 8 weeks may make him feel better.

[marie]

It sounds like PP have given you many good leads so I have nothing to add except PT's and a hearty welcome back to you!

[Indianamom2]

Fairy, definitely warn your DH that the HIDA scan will cause him to feel bad for a short time. My MIL told me it made her VERY nauseated during the test. Just something to keep in mind!

[reneed]

I went through the same exact thing for 5 years, all tests were negative, and I suffered. The pain was worse than childbirth ever was. Finally, they found gallstones. Once they removed my gall bladder the pain was gone.

[zag95]

Thinking of you both- if it is gallbladder, there is no pain and discomfort like it- even labor isn't as intense (at least that was my experience and I've had 2 kids!!). Hope you are able to solve the mystery and bring resolution to things. I agree with other PPs- get an endoscopy also!! Esp if there is a family history.