Atypical GERD symptoms

Hello @jamierb and welcome to Mayo Connect. I am sorry to hear of all of these uncomfortable symptoms that you are experiencing without any resolution to the problem. Many on Connect, myself included, have dealt with hard-to-diagnose health issues and I know how frustrating it can be.

We have other discussion groups on Connect similar to your situation. Here are the links to those discussions, https://connect.mayoclinic.org/discussion/mayo-rochester-gi-dr-recommendations/ and https://connect.mayoclinic.org/discussion/chronic-digestive-disorders/

You have had a number of tests. Have these included a look at your gall bladder? Are there any swallowing issues? Did the certified dietician mention trying a low Fodmap diet? This has been helpful for some people who have issues like yours.

Finally, have you considered a second opinion at a university medical center or at a facility like Mayo Clinic? These health centers are research-oriented and have a multidisciplinary approach. This might be helpful to you as you are understandably concerned about this wide variety of symptoms that you feel are not typical of GERD. If you would like a consultation at one of Mayo Clinic's three facilities here is a link to appointment information, http://mayocl.in/1mtmR63.

I hope you find some resolution to these symptoms. Will you post again with an update?

I have had a similar experience; GERD, gastritis & swallowing. I also have facial flushing; intolerant to sucralfate & Famotidine. Please check out the Histamine Intolerance websites. I am on a DAO supplement now ( histamine blocker & low histamine diet), w/a PPI and it has alleviated 70% of my issues. Currently being tested for IBS & SIBO. Returned to my Homeopathic doctor who is helping me detox my GI bile system; gallbladder a major issue. I have developed a major intolerance to many foods due to my underlying GI Issue / Portal hypertension.
Please check out the low histamine diets-but I would recommend a GI specialist who is versed in nutrition. Also, maybe have your doctor run a 24 hour urine histamine test to check for histamine levels.
Best wishes for a healthy resolution.

@hopeful33250 I had my gallbladder removed years ago. I’ll take a look at Fodmap diet. The “swallow test” was negative. Have second opinion scheduled for early Sept. very difficult to get appointments for anything these days!

I had something similar, went through all that, was in ER multiple times thinking it was MI. There was a feeling of rigidity near the diaphragm area and digestion would slow, but also constrict slightly my throat, I would break out in a sweat, and would be anxious, even though that's not me. The first ER visit they said it was GERD and anxiety. I never had GERD symptoms nor anxiety issues. Was put on omeprazole and Tums, and I felt worse. That actually caused constipation. Was admitted for observation a week later for continuing problem but they only ruled out cardiac issues, again. Went back to ER 2 days after discharge for fainting and not being able to get in a deep breath, still having gastroparesis and inability to bear down for a BM. Ruled out for PE. Consulted with a gastro, who barely spoke and didn't answer questions, and he ordered an EGD. The office scheduled it for 1/2/20 but insurance required new approval and then the pandemic shut things down. I had similar milder flares up after the first big one. Never had any pain anywhere. After doing some overhead work, it flared badly again and that's when I correlated it to a really strenuous project at work 2 days prior to the first ER visit. Since then, I've been shuffled around to different specialists. There is a delay in activity and symptoms and since there was no pain, I didn't correlate it back in 2019 to activity. I was also athletic and able to lift heavy boxes of books and move them around in my work for a book distributor. I did very little heavy lifting after gyms closed. I had mild flares when I walked uphill or jogged, all felt in the abdominal wall starting near the diaphragm. I decided to see a new physiatrist because the one I saw in the past was no longer in my insurance plan.

Since I had other musculoskeletal problems that caused a dorsal scapular nerve irritation, I went back to my former sports medicine and spine specialist. He basically said he had no idea. I found a new physiatrist, who was an osteopath, and asked if this could be related to the phrenic or vagus nerves. She thought so but sent me to a pulmonologist for asthma testing and to a neurologist that specializes in diaphragm dysfunction for phrenic nerve EMG studies but he's booked through October. The osteo had done a diaphragm release or manipulation and I already had a mild flare from that. I have very mild seasonal asthma but had noticed the feeling like I had to make myself breathe. Pulmonologist said I had moderate asthma because PFTs were not good, and don't go for phrenic nerve testing. I didn't think it was moderate asthma. Never had cough nor wheezing. The inhaler he prescribed actually made me cough. During testing, I couldn't exhale hard enough nor long enough because it felt like my muscles weren't strong enough. Using my stomach muscles triggered a flare up the next day that lasted for 3 weeks. I ended up back in the ER 7/2/2021 because of dizziness, weakness, and gastroparesis because the osteo couldn't see me and didn't think her manipulation did anything to cause a flareup. ER doc suggested I see a neurologist who specialized in neurogastrology and myopathies. None of the docs had an answer for the intermittent nature of the flares. I was eating prunes to help with BM because in addition to the gastro, I also developed constipation. The osteo didn't feel the diaphragm work contributed to my problem but I didn't want to do that again. I went back to the physiatrist I had consulted with in 2017 for mid back pain. He spent an hour ruling out different systems based upon the intermittent nature. I work in healthcare and do have a science degree and agreed with him for the most part that it wasn't GERD, any kind of myopathy (like ALS) or autoimmune disorder like MG. I was disappointed when he didn't send me for a followup C and T spine MRI. I know herniated or bulging discs usually don't result in pain but I was really curious if something spine-related was happening because I have several bulging discs in C and T spine. He referred me instead to an integrative MD who had just opened a practice. BTDT. He also said to go to my PCP and have her order a scan (didn't say what kind) of my abdomen. My PCP retired and her last day was the next day. Can't get an appointment with a new one for months.

I had cervicogenic headaches in the past that were eliminated with movement exercises so I started doing those again, since the phrenic nerves/vagus nerve runs so close to the cervical spine, and figured if one of the adjacent discs was causing inflammation and muscle tension, it might help. If it's the phrenic nerve, I don't have chronic symptoms so probably not a candidate for a phrenic nerve device. I was getting temporary relief from a specific mid back movement so I upped the number of times per day I did that. Then I added a stretch for costochondritis. Almost immediately I felt a sense of relaxation in my mid section, front and back. I've been doing a regimen for 3 weeks and have had no flare-ups of the gastroparesis, my breathing is better and I've been very active again. I sent a message to the physiatrist with this info and waiting to hear back.

That’s interesting. I have considered that some of symptoms could be related to upper back or neck issues. I even bought a new desk chair and elevated my computer monitors for my home office, where I was working during most of this. Trying to stay off of phone/iPad at night too.

What is a DAO supplement? Baz10

What is a DGL before meals supplement?

DGL stands for deglycyrrhizinated licorice. Studies have found it can help with mucous production.

I don't know what your diet is like but I cut out all soda, booze, juices,tomato,and vinegar products and any product made with high fructose corn syrup. I drink a low acid coffee in the morning. No seasonings. My Barretts was gone on my last scope.

Thank you! If the complete word isn't printed, I don't know what it means. Sorry~~~Baz10