GERD-like symptoms, but all tests say NO...

Hi all,

Long time listener, first time caller here...

I'm going crazy trying to find a solution for my current condition, and am hoping someone might be able to offer some advice.

I'm a healthy (I think!) 35 y/o male, and lead a healthy lifestyle. However, for the last 3 months I have gone through a series of odd symptoms that I've never had before, and so far all doctors/tests are stumped.

Originally the main symptom was a sharp pain under my solar plexus, along with light nausea. After a day or so that faded into more generalized chest pain (heat and tightness). I first tried OTC PPIs (Prilosec), but after a week went to see a GI who put me on Protonix 40mg. After 2 weeks of that (up to 2x/day) and an elimination diet that left me eating little more than chicken breast, steamed broccoli and rice (with no change), I went to see a cardiologist to make sure I wasn't having cardio troubles. Since then I have had:

- Cardio stress test - normal

- Echocardiogram - normal (minor heart murmur that I've probably had forever)

- Multiple EKGs - all normal

- 24h Holter monitor - normal, no signs of palpitations

... and on the GI side ...

- Routine blood chemistry: All normal, though high bilirubin (but I think Gilbert's may run in my family)

- Abdominal ultrasound: normal aside from 2 tiny polyps and some sludge in my gallbladder (polyps run in my family, as does GB disease in general)

- H.pylori test: active infection negative, but antigen positive (so I've had it at least once before, somewhere)

- EGD - Signs of "minor gastritis", slightly irregular Z-line, but the GI said nothing that I should be able to feel, or be concerned about (still he put me on Dexilant 2x/day for 2 months to see if the symptoms would clear, which they didn't).

- Manometry: Normal, no sign of spasm (though I was on PPIs at the time)

- 24h pH monitor: Normal, very minimal reflux events (though again I was on PPIs)

- MRI/MRCP - Normal, aside from the GB polyps the ultrasound found

My symptoms for the last month to 6 weeks have generally been:

- Frequent (but not constant) mild burning or hollow sensation in chest area between my adam's apple and solar plexus

- An occasional "minty" feeling and tingling in the back of my throat (just below the adam's apple)

- Tightness/feeling of something in throat (globus). Occasionally I can burp and this will dissipate some, but it's hard to get the burp to come out (I have never had trouble breathing or swallowing). One GI suggested I try 20mg amitriptyline (a tricyclic antidepressant) that has had some success with reducing globus symptoms, but it didn't do anything for me.

- Feeling my heartbeat under my solar plexus (yes, I know that's where the aorta is... It's something that I don't normally feel, so I'm throwing it out there too.

So a diagnosis of GERD/LPR isn't really satisfying since I a) don't have the most normal symptoms, but b) also don't respond to diet changes and medications like you should. I don't know what tests to ask for next. One GI recommend a CT scan, and while I'd really rather avoid the radiation, I'm getting to the point where I'd rather have the peace of mind of knowing there isn't something terrible we've all missed (or not...). Nobody seems to want to do a chest or neck MRI, which given the option would be my preference.

Another doc recommend checking with an endocrinologist, though I don't think I'm having thyroid symptoms (weight and appetite are stable, and while my 3 kids leave me exhausted every day, they were doing that before I was symptomatic).

Yet another suggested I might be having some kind of mechanical trouble with my esophagus, and to look into biofeedback therapy. I haven't yet found anybody in the South Florida area that does that for GI issues.

I apologize for the tome, but wanted to be complete. If anybody has suggestions, I'm all ears at this point.

Thanks,

Rick

I agree, think manometry and ph would have given a much clearer picture of what's happening off ppi.

Hope you find a resolution soon

Rick
I have exact same symptoms like yours... just wanted to share that i had a "million" dollar work up done. The only deviations are minor reflux, minor elevated acidity and gastritis identified through the cell analysis from endoscopy. Net, nothing glaring or major or treatable. I looked at my heart, and all is within normal range. I am just over 40, healthy otherwise, do not drink, etc... although i have three kids too anyways, i saw two very good specialist and they both gave up stating it is something "functional" meaning stress, life style related. I have been like this since Jan, although i learned to manage symptoms via diet, yoga and breathing. Now, i am fine most of the time but still have a restrictive diet (which actually made me anemic recently). so i am changing it now. i take St John's W herbs before food and Althea root after to coat the stomach. Not sure what is next but now it is bearable and i am hoping it will eventually clear. Please keep me posted on your progress and findings. Like yourself, i hope if nothing major is missed then i might learn to manage those symptoms. good luck

hi Rick
i understand that the diet may not make it go away... but if you eat something spicy or fatty red meat - would it change/exacerbate symptoms? that might show if the issue is stomach/acid related or something else/mechanical. i have "heartbeat" in my stomach too and sometimes also wondering pain/needles in the chest area. my symptoms tend to change over time from sharp irradiating pain to a dull heaviness in the stomach after eating. I have symptoms daily. let me know if you find something out. I am having X-ray of the bowel to determine if the issues are caused by the bowel spasms and if i am emptying enough - my GI thinks that might be an issue. He also prescribed me a mix of antacid with a numbing agent (used in dentistry) to take orally to sooth any sensation of pain in the throat or esophagus. good luck and good for you for being so tenacious... another Dr thought it might be food intolerance. I had a test done, which indicated high index to milk, wheat and beans, etc... i avoid those but did not get any significant positive feedback, will keep on trying

Nara:

I tried every dietary option I could think of, and kept a detailed log for 3 weeks. Whether I ate spicy or bland or fatty, the condition remained. In fact, for several mornings I fasted until about 2PM just to see if the mere act of eating caused the problem (since I'm frequently asymptomic in the morning), but it didn't. And of course the first thing I did was eliminate the alcohol, caffeine, and other common triggers (3 months without coffee sucks). I'll be interested to hear the results of your next test. My "common sense" feeling is that whatever I'm dealing with has to be from the LES up (especially since my MRCP came back normal), but you never know.

Pat: Thanks for the kind thoughts. I did see a highly regarded ENT just recently, and the very first thing he mentioned was LPR (and in fact one of the GI docs I've seen mentioned it too, but in a noncommittal way). He used a laryngoscope, but I think it was analog, as there was no video output that I was aware of. He checked the upper esophagus and then where the trachea meets it and the vocal cords, but apparently everything looked normal. I've thought of going to a pulminologist a few times, but I'm pretty sure the first thing they're going to say is "get a CT", so it's not at the top of my list... yet.

Thanks again, all
RS

Another brief update for anyone who might happen to be going through the same thing

Another Dr ordered a chest x-ray to eliminate the possibility of anything (large-ish) on the outside of the esophagus causing problems. That came back all clear.

Thus, I've decided to go for a HIDA scan (functional scan of the gallbladder using some kind of radioactive tracer that simulates bile) after hearing an anecdote about my wife's friend's husband that sounds very similar to my own story.

At this point I'm cautiously optimistic that they'll find my gallbladder is performing poorly (which is a strange thing to be optimistic about). If that test is nominal, I'll go get the CT out of an abundance of caution, since there's literally nothing else left to look for.

Scott

You could have an impedance study to see whether your symptoms are related to reflux or not, as a pH test on PPIs is useless, and impedence will allow you to stay on them. It may be that you actually are having reflux. Are you still on PPIs? If so then I guess it isn't really necessary as you shouldn't have any esophageal damage on them.

I have had similar problems to you only mine are quite more severe. One thing that helped immensely was amitriptyline, it is used to treat people like us that have 'phantom reflux' and you only need to take a low dose. My pain was much worse than yours and it completely cured it. Unfortunately it has come back as I came off the drug and some antibiotics seem to have set it off again.