How to go about being diagnosed properly? Please help, I might have found my own lead, but unsure..

Hey guys, I have posted here a few times but having been on a long 3 month work trip just haven't had time to say much. I wanted to recap a bit of what's been happening with me, and get advice on how to proceed. To this day I have not been formally diagnosed with anything, they simply hear my symptoms and prescribe medicine :/

So, about a year and a half ago I was in the middle of moving and had a lot of bloating, gas, etc, which eventually led to a lot of mucus congestion feeling and then, burning, tightness in the chest, etc. When I saw a doctor about this she just said it's acid reflux, prescribed me a PPI called pantoprazole, and I went about my way. This medication did help suppress the pain but I never quite felt right again. She had told me to get off the medicine after 2 months and see how I was doing, after about 2 weeks of being off the medicine I had a really bad attack that burned my throat, ears, etc. I went back on the medicine and have been taking it since. Since then I got an endoscopy and that yielded nothing but them stating I have irritation of the esophagus.

Due to the nature of my work being gone so often, I find myself trying a lot of my own things to see if I can help myself. I've tried taking HCL tablets (acid basically) to see if I had too little (read a lot about this), i've tried many probiotics, i've tried decongestant medication for the mucus issue, but in reality nothing i've tried has yielded much result.. Aside one thing, which is making me scared. Basically, I read a lot about the dangers of PPI use, my main concern started with 2 things, first, I noticed my hair was falling out a lot, second, a lot of joint pain was beginning to surface after taking the medication about a year. I tried to stop the PPI cold turkey and was met with horrific pain from it, so bad that I could barely function a couple days after, and that spooked me to keep on using it until my work was over.

Since then, I began taking an organic apple cider vinegar 2 times a day, as well as gaviscon liquid at night. While doing all this and taking the PPI, I was still having the same sort of problems. Then I got home.. and I tried something I got on amazon that is just a colon cleanser that last 14 days. During the time of taking this, i'd feel some pain in my stomach in the morning due to needing to take a bowel movement, and would take a bowel movement maybe 2 times a day while on this supplement, during that time, I ranged from feeling bad the first day, to pretty good for a week, to feeling amazing for one or two days. Then the supplement ran out (as it should, they say only to use it for 2 weeks) and the next day, all my symptoms returned with a vengeance. My chest hurts, I feel acid, gassy, and i'm choking on mucus every few minutes at best.

As of right now, all i've been taking is the apple cider vinegar, occassionally tums, and gaviscon right before bed. I am not however taking any PPI, and have been off it 3 weeks now. I guess my fear is that right now, my joints feel better, I have some peach fuzz and some straggler hairs coming back on the areas I lost hair on my head (though I don't know if it will ever fully return), and in general I just feel good to be away from PPI for the moment. Unfortunately I still have no peace in my health and feel my quality of life is just continually being destroyed, and every time I see my doctor she just suggest taking a different PPI, or in the case of the mucus, to try flonase (which didn't work).

I guess I find myself bewildered, I can taste food I ate 8 hours ago still coming up, I have constant bloating and gas, acid reflux, fatigue, joint pain (much less so now that i'm not using PPI), hair loss, terrible mucus clogging my throat, and in the end my doctor so far has only run a blood test for H pylori, an endoscopy, and otherwise prescribed ppi and flonase for the other issues. I want to know if you guys have any advice on how I should proceed, be it because you might have an idea of what could be wrong with me, or the sort of test/procedures I should be looking at? I read a book about the digestive tract and stuff like SIBO (small intestinal bacteria overgrowth) and a LOT of the symptoms are similar to mine, but I don't know if that's really sound science and I imagine my doctor would basically laugh at me for even suggesting it :(

I'm so desperate for peace in my life, and terrified of my future, I feel i've tried and read it all at this point, and the closest thing I came to for peace required me to basically crap my brains out 2 or 3 times in the morning over a couple hours, which just seems weird. If anyone can help me, i'd be eternally grateful, and if I ever find closure in this issue I would happily post my entire story and how I got better if it could help even one person :(

I have not gone back to my doctor since I got home because i wanted to be off the colon cleanser thing before bothering, but I guess I don't know how to approach her, I want to be investigated and helped, not just say I feel this and get a drug. I had a miserable time just taking my fiancee to a carnival the other day, I don't even want to leave my home anymore :(

Post Edited (catch) : 5/31/2016 6:19:24 PM (GMT-6)

Yeah they saw nothing in the endoscopy that would cause the issue, so the outcome of that was nothing but 'irritation of the esophagus'. I've mentioned these same symptoms to the one GI doctor and 2 other doctors, and they just blow it off as unrelated, which could be the case but seems unusual to all be happening at the same time :(

I was in a similar situation. After 3 years of being told I had COPD and reflux (which they just kept switching my PPIs when I told them they did not work), I finally got fed up. I called a gastroentologist and went directly to them. they sent me for the 24 hour pH monitoring and the test that measures your swallowing capabilities. He knew as soon as I explained my symptoms what was going on but sent me for the tests to verify. I had a case of severe Silent reflux. I had the Nissen surgery on September 1 of last year. Once they found out I had asthma instead of COPD and started treating that correctly, I have never felt better. I think between this and my exercising that i am now able to do, I might be healthier than I was as a teenager. I have learned one very important lesson from this: If you are uncomfortable talking through this with your doctor, you need a new doctor. No doctor should make you feel bad for wanting to find out what is wrong. I felt uncomfortable because I thought they would think I was questioning them, but it got so bad for me that I could not survive without taking 4 ibuprofen every 4 hours. (which is NOT good for you!). Good luck. I hope you find your answers!

So my appointment today had them test my blood for celiacs and they told me to see the GI doctor again. Not much ground there, unfortunately my symptoms seem to be shifting around again since going off that colon cleanser, my stomach has been 'warm' feeling most of the day, like its kind of burning, so i assume it's acid. It makes me wonder if going off the PPI will backfire but it's been 3 weeks :/