Silent reflux, in my head, or both?
November 10, 2015 5:25 PM   Subscribe

I've posted about my adventures in health before. I have a clusterfuck of reflux symptoms but most tests--not all--are coming back normal. I met with a surgeon today, after my most recent test came back normal, and he said there was nothing they could do. I'm at a loss and wondering if any of it could be psychological. More inside.

My problem started with a cough and progressed to trouble swallowing. Food would either get stuck in my esophagus and go up and down or I would just bring it out. I also need to clear my throat constantly and my voice is raspy. I was put on Flovent for the cough, which worked wonderfully, but I was tested for asthma three times while on the Flovent. It was negative all three times. Allergy testing was also entirely negative.

When I started regurgitating, I was sent to a GI doctor, who did an endoscopy--negative. He put me on reflux meds.

Meanwhile, the allergist sent me to a speech pathologist, who sent me to an ENT. He put a camera up my nose and down my throat, noticed marked inflammation, and said I have LPR. For the trouble swallowing, he sent me for a modified barium swallow. That showed food getting stuck at my LES, causing my esophagus to balloon out. They suspected Achalasia and referred me to GI and a thoracic surgeon.

GI sent me to surgery for a manometry and 24-hour probe on meds. The manometry was... normal. Except it showed my LES was too loose. The probe showed reflux of liquid but no acid. At follow-up, GI said there was nothing physically wrong with me (which was infuriating) but if I'm still having symptoms go see the surgeon.

Surgeon reviewed the results and ordered another barium swallow and a Bravo PH test off meds. The barium swallow was normal, except it showed the pill get stuck at a couple points in my esophagus. The Bravo was normal. He said he didn't want to do surgery and there was nothing else they could do. I saw him today.

This has all lasted over a year. I'm at a loss. Is there nothing wrong with me? I had NO reflux lying down. I don't think it's all in my head. My throat was very inflamed. But if it IS psychological, I want to know! I'm at a loss. I will push things out if I feel them come up or else they get stuck. I don't think there's a psychological component to ALL of it, though. Perhaps stress causes episodes of dysmotility. I was stressed when that happened.

The throat symptoms, however, are unmistakable. My tonsils are chronically inflamed. My throat is chronically inflamed. I hear noises in my throat. The irritation extends up to my sinuses--I'm chronically congested and catch everything. Everytime I eat I get remarkable amounts of phlegm in my throat. My voice is raspy.

I'm at a loss. I'm considering going back to the ENT. He only discharged me when he thought I had a motility disorder. He wanted to keep seeing me when he thought it was LPR. I've also considered seeing this doctor, who invented and is considered an expert in LPR. The symptoms are troublesome, but I also worry about my family history. My grandfather, his brother, and his sister died of esophageal cancer. My mother and AT LEAST two of her brothers have Barret's. One has severe Barret's that is incredibly close to developing into cancer. I feel like, if nothing is done, that will be my future, especially considering my onslaught of symptoms.

What would you do?
posted by Amy93 to Health & Fitness (14 answers total) 3 users marked this as a favorite
Did you get biopsied for eosinophilic esophagitis?

Go back to the ENT to help you manage your care and perhaps refer you to another GI. A doc who is dismissive of actual symptoms and actual diagnostic results is not the doc for you. Also, of course the ph probe showed no acid if you were on meds, that doesn't mean that you're not having trouble getting your food from your mouth to your stomach. Infuriating. Best of luck to you.
posted by PorcineWithMe at 5:39 PM on November 10, 2015

Go see another Dr. I know one year seems like a long time to get a diagnosis but it sounds like your symptoms are slightly atypical and the Doc's that you have seen are getting hung up on them. I would keep searching.

One tip from the land on the undiagnosed: keep a copy of all test results and dr notes. Keep copies of all x-Rays and other scans. They will put them on a disc for you. Tell them you need them for a dr. Appt. I skip the office and go directly to medical records at the hospital where tests are done. It is so much easier when you do see a new dr to just hand them a copy of everything.

Good luck.
posted by cairnoflore at 5:40 PM on November 10, 2015

I had similar problems. I coughed all the time, always had post-nasal drip, felt wheezy sometimes, and sometimes had difficulty swallowing. For years my PCP treated me as if I had asthma with occasional bronchitis, so with inhalers and antibiotics. Blamed my weight (I am fat). Instead, it turned out I had a fist-sized sub-sternal goiter which made my esophagus look like an S in the x-ray I finally got. I only got the x-ray because I had pneumonia and they finally decided to have a look. Oh, giant mass in your chest? Oops. I've since had two separate surgeries to remove all of it.

I have also been diagnosed with a hiatal hernia, GERD, and Barrett's. But they found all of that using the tests you had (I had an upper GI, two endoscopies, lots of chest Xrays, nuclear scan, MRI, and several CAT scans over the course of my diagnosis and treatment). After several years the Barrett's seemed to have cleared, which is excellent. But the hernia is still there, and the GERD is still there. I take daily omeprazole (which I hate having to do) to take care of it.

SO I guess what I'm saying is I understand and feel your frustration. I'd go back to the ENT and keep pushing, because I am pushy. I would also seek out a second opinion. Don't let them try to convince you it's nothing if you think it isn't. I thought my symptoms were asthma for at least five years while a tumor got bigger and bigger in my chest. As a result I had to have a partial sternotomy and man, you do NOT want that recovery if you can avoid it.
posted by clone boulevard at 5:44 PM on November 10, 2015 [1 favorite]

I was diagnosed with acid reflux, but the stomach acid was the least of my problems. My histamine intolerance is what made me miserable--watery eyes, plugged-up ears, stuffed up nose, etc. I take an OTC acid reducer and an OTC H2 anti-histamine every day, and sometimes twice a day. I try to avoid foods that trigger the histamine release. Chris Kessler on reflux and histamines.
posted by Ideefixe at 5:46 PM on November 10, 2015 [2 favorites]

Thanks for the replies. I tested negative for eosinophilic esophagitis. It definitely seems like a waste, having done the first test on meds. What's baffling is that the second PH test, the bravo, was negative. But that only tests heartburn, which has never been my main problem. My main problems are regurgitation of food/liquid and throat smyptoms.

A histamine intolerance sounds interesting. I'll review the links. I want to look into managing it with diet for now. I'll likely contact the speech pathologist, who really seems to believe that my problem is real, to discuss follow-up care. It's just beyond frustrating. I like the surgeon, too. He wasn't dismissive. He admitted that the tests have shortcomings. He just didn't think surgery would help.
posted by Amy93 at 5:54 PM on November 10, 2015

Could there be a neurological component contributing to difficulty coordinating or timing swallowing? With the local inflammation and irritation maybe secondary effects? (Maybe see a neurologist?)
posted by cotton dress sock at 6:41 PM on November 10, 2015 [1 favorite]

Ask yourself a question. What do you want medicine to do for you? What is it that the doctors have to offer that you want? Are the treatments that they offer worse than the disease you have?

I read your question. It reads like what you are looking for is validation. Validation that your symptoms are real, you're not making it up. You're also looking for an explanation of why this is happening to you.

What you do not mention are the goals of medical care. How are your symptoms affecting your life? They are obviously distressing, but what other limitations do they impose?

It's important to work with the limits of medicine. Doctors don't exist to validate your feelings and doctors can't explain everything. Treatments have side effects. If your symptoms seem manageable without treatment, then a conscientious doctor will not offer care. The care might leave you worse off.

You could decide to wait and see what happens to your symptoms. Sometimes doing nothing is better than doing something. Worth considering, even if it is deeply unsatisfying.
posted by crazycanuck at 7:22 PM on November 10, 2015 [1 favorite]

It could definitely be neurological. Something I've considered. I could see a neurologist down the road. I'm just hesitant to start on a new path of new tests.

crazycanuck - I'm just looking for relief from my symptoms. That's it. I also want an answer really badly, but besides that, I want an explanation and relief. I can live with it. I just don't want to. Also, with the family incidence of cancer, I think it could be dangerous to let this go unchecked long-term. I'm almost positive that I'll develop Barret's someday, especially if nothing is done.

You're right, though, in that I also want validation and likely won't get it from doctor's. They SHOULD believe their patients, but I shouldn't specifically seek that. It will hurt me long-term. I need to stop. Symptom relief, though, especially considering I'm 22? I think that's a reasonable thing to want.

My preliminary plan is to take a break from getting tests done. It's exhausting. So I'll probably do that for a couple months, but I want to hear what others think first.
posted by Amy93 at 7:51 PM on November 10, 2015

When you asked your most recent previous question about this, I noticed from your earlier questions that you'd had a diagnosis of strep, and I wondered whether the sphincter at the base of your esophagus was locking up to prevent the rest of your GI tract from being exposed to the strep when its levels were high, but didn't think that was plausible enough for an answer.

But as you mention in this question, you continue to have lots of inflammation in your throat, so I went looking for evidence that strep was associated with Barrett's, and found something intriguing in a 2009 Forbes article that seems to turn my original thought on its head:
Could having the wrong bacteria in your throat give you cancer?

That’s the question raised by a new study by researchers at New York University Langone Medical Center. They found that people who have either chronic heartburn or a more serious, precancerous condition called Barrett’s esophagus had completely different kinds of microbes living in their throats than those who were healthy. The research was published in the current issue of the medical journal Gastroenterology.
The NYU researchers sequenced bacteria DNA samples from the throats of 12 healthy people, 12 with gastro-esophageal reflux disease (GERD) and 10 with Barrett’s. In the healthy people, 82% of throat bacteria were Streptococcus.

In those with esophageal disease, the bacteria in the throat were more like those in the stomach; only a quarter of them were Strep. Scientists divide bacteria into so-called “gram positive” varieties like Strep, which lack rigid cell walls and can be stained with dye, and “gram negative” ones that have cell walls and aren’t dyeable. The throats of the people with GERD and Barrett’s were full of gram negatives.

This opens up several possibilities, says Zhiheng Pei, the paper’s lead author. The bacteria could actually be a cause of GERD, and acid reflux actually follows the bacterial change. Another possibility is that they get flushed up by the acid reflux. But Barrett’s, which results from chronic GERD, can lead to adenocarcinoma of the throat, a cancer. Perhaps, Pei says, exposure to the wrong kind of bacteria, not just acid, is one cause of the disease.

If the bacteria really play a causal role in disease, the upset will be as big as the discovery 20 years ago that bacteria, not just stomach acid, are the major cause of ulcers. GERD and Barrett’s are currently treated with stomach acid drugs like AstraZeneca’s Nexium and Wyeth’s Protonix.

A great deal more work needs to be done to sort out what’s happening here.
Based on this, it seems more likely to me that your sphincter is locking up to prevent bacteria from your stomach from washing up into your esophagus and causing the problems that lead to Barrett's esophagus and even cancer.

In an ideal world you would be able to find a doctor who was aware of this research and had developed treatments that took it into account, but in actuality that's probably pretty tough; I don't know.

If I were you, I would be trying various probiotics (not in pill form!) in hopes that one or more would be able to establish themselves in your throat and esophagus and thereby help to prevent stomach bacteria from making trouble.
posted by jamjam at 9:34 PM on November 10, 2015 [1 favorite]

I have achalasia and it has been surgically treated (to the point where it logically *cannot* happen anymore), and when I am under a lot of stress, it happens. Food gets stuck and sometimes goes the other way.

I can't explain it. I have had all the tests - the muscle has been cut and is basically not there anymore. But on an EGD, food was sitting in my esophagus. Nothing is physically wrong anymore (except the esophagus is stretched from 3.5 years of undiagnosed achalasia). But last fall when I was finishing my degree and incredibly stressed, it was back.

I have to be mindful when I eat, make sure to chew really well, don't load up on liquids while eating. Some people with achalasia drink a Diet Coke to get food moving down. Anything carbonated is the worst thing for me and I can't do anything like that while eating.

Memail me if you want. I know it's not necessarily achalasia at this point, but I'm part of a group with a few people that are very versed in this and maybe they will have some ideas.
posted by getawaysticks at 10:08 PM on November 10, 2015 [2 favorites]

I assume you have tried taking reflux medication, available over the counter, to see if it improves your symptoms?

I would agree with the suggestion to get a second GI opinion - I don't think it has to be the world's expert on the subject, just see someone else, possibly someone at an academic tertiary care center. World's experts are great for some things, but having been practicing for 20-30 years can also mean you're not on the cutting edge of medical knowledge.
posted by treehorn+bunny at 12:39 AM on November 11, 2015 [2 favorites]

I don't know if Google gave me this based on the search I did a bit ago, but autoimmune GI dysmotility came up on a second try. It's apparently a form of autonomic neuropathy limited to GI symptoms (which can include orthostatic dizziness, and has been linked with the development of some cancers). More from the Mayo Clinic. There are tests for it, & treatments ( i.e. immunotherapy) that have been successful. It's rare, though, which as treehorn+bunny said, means you'd need to see someone up on this (for them to even consider excluding it).

Also though, apparently, chronic reflux can contribute to the development of Barrett's (also because of autoimmune involvement).

As someone with a few (much more mild) difficult-to-treat things, I agree with crazycanuck that medicine and science are limited, and that particular healthcare systems are even more limited. And I understand completely that you might be fed up with tests and waiting rooms and not being believed, totally understand wanting to take a break, that makes sense. But if there's a possibility there could be an answer, you don't have to accept "no" with finality, if a "maybe" exists somewhere (and you have access to the system that contains it). Good luck.
posted by cotton dress sock at 1:28 AM on November 11, 2015

I also have these symptoms and have for years. I also lacked many of the telltale symptoms of GERD. Recently during a respiratory illness, I started treating post nasal drip symptoms with a nasal inhaler and lo and behold, my symptoms disappeared almost entirely. YYMV but it has been a gamechanger for me.
posted by lieber hair at 12:09 PM on November 11, 2015

Thanks for the replies. I haven't marked any best answers because I hate picking favorites.

I'll look more into the bacterial explanation and autoimmune dysmotility. I also think I'll contact ENT/speech, since they were the only ones who really seemed to listen/think outside the box.

Thanks again.
posted by Amy93 at 6:08 PM on November 11, 2015

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