Atypical GERD symptoms

Posted by jamierb @jamierb, Aug 10, 2021

Sorry this is so long, but I wanted to get everything out there.
At end of December after a heavy meal I woke to indigestion and stomach pain. Began as gnawing in lower stomach then upper and continued daily. Started 10 day course of Prilosec. Had similar issue a few months before and was prescribed Prilosec and it resolved. Prior to that, about 2 years before, I had ended up in ER because in addition to indigestion, I had pain in my upper chest and left arm. No cardiac issues; stress and GERD were diagnosed.
Early January I had a telephone visit with PCP. Some food triggers, worse on empty stomach and upon waking. Not always stomach pain; indigestion with spread to shoulder and arms. Sinus-like pressure in face. Mild cough with indigestion hours after eating. Occasional hot flashes/cold sweat and overall feeling unwell. No appetite. PCP prescribed continue Prilosec; second course if needed.
After 3 weeks, still no better, so saw another doctor in PCP office. He ordered blood work and prescribed sucralfate. At the same time, I was trying to get an appointment with a doctor in the digestive health area, but was told next appointment was 6 weeks out. Finally got a video appointment with a gastroenterologist. No interest in blood work; changed to liquid sucralfate and scheduled an endoscopy for 6 weeks later. Could not tolerate sucralfate so was switched to famotidine 40 mg. 2x day.
Blood work showed high Gamma GT and elevated CO2. Emailed PCP who said since liver enzymes looked good would not normally have checked gamma GT, but would order liver ultrasound if I wanted. I have had liver enzymes show as elevated in past blood work on and off over many years. Liver ultrasound once, but nothing showed as abnormal.
Endoscopy showed small ridge at end of esophagus appeared mildly thickened, so ordered fluoroscopy esophagram. Biopsies of tissues were normal. Esophagram results were normal.
I can go for a month or two with no symptoms, but when they start they continue for many weeks. I have been on famotidine continually since mid-February. I consulted a nutritionist to get some ideas on how to change my eating habits. I wondered if the fatigue was due to lack of protein, etc. One thing she suggested is DGL before each meal and that seems to help with stomach pain.

What bothers me are the symptoms that I don’t see as being typical GERD symptoms:
indigestion pain spreading into shoulders and arms; sinus-like pressure in face and foggy brain; fatigue; hot flashes with quick wave of anxiety; feeling like I need to concentrate to breath, but having no trouble taking a deep breath or exercising; bouts of severe constipation. I have Hashimoto’s thyroiditis, but it is controlled. My latest routine blood work came back fine, including test for Celiac markers. So frustrating that I keep being told my blood work is good — but I’m not feeling “good”. Just don’t know what to do next.

Interested in more discussions like this? Go to the Digestive Health group.

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?

REPLY

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.

REPLY
@hopeful33250

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?

Jump to this post

@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!

REPLY

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.

REPLY
@debkl

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.

Jump to this post

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.

REPLY
@tracyfurtiscaudle

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.

Jump to this post

What is a DAO supplement? Baz10

REPLY

What is a DGL before meals supplement?

REPLY
@baz10

What is a DGL before meals supplement?

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

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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.

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@jamierb

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

Jump to this post

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

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Still feeling really “off”. I’ve decided to try weaning off of famotidine to see if that helps with hot flashes, anxiety, and fogginess. My stomach has been pretty good with DGL and a round of doxycycline (prescribed for tick bite!) Added a probiotic after antibiotics at suggestion of nutritionist. Anyone else had side effects from famotidine?

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@baz10

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

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@baz10 I'm with you on that. .. this one I would not have figured out. No way I could remember how to spell it.. so might write it out once in the post and then abbreviate… or copy and paste. That I can do. 😁

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