My Visit to the "Burp Doctor" About No Burp Syndrome, Abelchia, Retrograde Cricopharyngeus Dysfunction (RCPD)

Me during my much skinnier days, in 2014, at 180 lbs but still with enough of a belly that I looked pregnant. I'm now about 100 lbs more than that.

Warning, this post might be classified as TMI, "too much information". Be warned if you continue reading.

In my post about how Ehlers Danlos Syndrome affects my body, I wrote a little bit about No Burp Syndrome or Abelchia, officially called Retrograde Cricopharyngeus Dysfunction (RCPD). 2 weeks ago I went to the one doctor in my country that deals with it, so I wanted to talk more about it and what I learned since then.

Why do people burp? People burp as a way of releasing gas that we have in our upper digestive tracts, the stomach and the esophagus. When we eat or drink we swallow air and release oxygen and nitrogen when burping. When we drink fizzy drinks, we burp up carbon dioxide. People also swallow air when chewing gum or eating sucking candies, and some people swallow air as a nervous habit. There are certain medical conditions such as GERD that also cause people to burp more because they swallow more air.

It's normal to burp up to 30 times a day, and up to 4 times after a meal is normal.

When you swallow air, it gets trapped in your stomach because of the lower esophageal sphincter where the stomach meets the lower esophagus. This muscle usually stays closed, but sometimes it relaxes briefly. When this happens, air gets trapped in your throat and it can make the top part of your esophagus bulge out. This triggers a response that relaxes the muscle between your throat and esophagus, the upper esophageal sphincter, letting the air escape back into your mouth so you can breathe it out. The cricopharyngeus (in the name of the disorder) is the main muscle in this sphincter. 

When someone has RCPD, this process happens up until the point of the upper esophageal sphincter relaxing, which it doesn't. So the air just gurgles (often really loudly and embarassingly) but stays stuck inside the body. 

When all this air that can't get released just stays in the body, it causes people to get bloated.

About two months ago I was going for a bra fitting and when I was looking at the mirror and thinking about my body shape, I acknowledged that I am fat, but my stomach bulges out far more than my fatness would account for. Even when I was skinny, my stomach stuck out. Ever since I was a skinny kid my stomach stuck out. My mother, a physical therapist, would tell me that my abdominal muscles were weak and I needed to strengthen them. So I worked on strengthening them but my stomach still suck out. Then I was told that it must be that my transverse abdominal muscles were weak and that was what was causing my stomach to stick out. Strengthening them didn't make a difference. I was told that my having diastasis recti made it stick out. Healing that didn't fix it. Basically, my whole life I was just told "If you just strengthen this/do these exercises, you'll lose the belly". 

But here's the thing.

My stomach is rock hard. Fat jiggles. And sure, I have some jiggly fat on top of my rock hard stomach. Weak muscles also are jiggly. So my rock hardness is a combination of my muscle strenth and... something else.

I didn't know that it was a "thing" that some people couldn't burp until more recently. I just thought it was a weird quirk of mine. But I googled it and discovered a subreddit called "NoBurp" and there are so many other people out there with it. I learned that it had a name and it has many side effects. The gurgling, The bloating. The excessive gassiness because of being unable to burp. It explained so much. The treatment for this is generally a shot of botox into the cricopharyngeus muscle, the upper esophagus sphincter, which causes it to relax, which makes it able to release the air bubbles that come up the esophagus.

I've long avoided foods that cause gas because they cause me pain. People often say "So, what's the big deal, you fart a little bit". But it doesn't work that way for me. Because I'm gassy to begin with, if anything makes me extra gassy, my stomach extends so much that I can't move without being in lots of pain, and I end up needing to lie down almost in fetal position until I can pass enough gas that the pressure in my abdomen abates enough for me to be able to move again. 

After that good hard look in the mirror, I decided that it might be time to see the one doctor in my country that deals with this syndrome. She's an ENT who specializes in voice disorders as well as RCPD. It costs $575 for a 30 minute appointment with her.

Before I made an appointment with her, because of the cost, I first wanted to do some "research" so I asked a bunch of questions in the reddit group to see whether or not the treatment they do actually helps. Because if it doesn't really help, then what is the point of paying a lot of money and going to a doctor to diagnose me with what I already know I have?

But after the feedback I got, I decided to take the plunge. Before making the appointment, I first wanted to make sure that she was familiar with EDS because that can affect treatment for different things.

At the doctor, I learned a few things. First of all, I learned that the first paper on RCPD was only published in 2019! This whole diagnosis is a baby! This means they're still learning so much about it, since it is only in the beginning stages of having knowledge about it. I also learned that the subreddit is actually mentioned in the study, as people in the subreddit came forward to be part of the study because of the initial patient's post there. 

This doctor told me that the way she got involved in this was by working in NYU (I think) temporarily and while she was there a patient with RCPD came in and asked for the botox treatment, and she learned about it and performed it on him successfully, and then with a bunch more patients. She told me that her success rate is very high, that the only patients that the treatment didn't work on them were people that she wasn't sure had the issue to begin with (they didn't come in presenting as "I can't burp, my throat makes gurgles, etc..." but instead with stomach pain, and "I don't know if I burp.") 

She gave me a referral to a scan of my upper GI tract, if I'm not mistaken, and then invited me to book an appointment for the treatment.

The receptionist gave me details of the treatment. It was done under full anesthesia at a certain hospital nearby... and it cost $3500. 

Welp.

There goes my hopes of getting it done.

Because for most people, the intial treatment is enough. For some people, they need to do a follow up treatment a few months later. So that would be $7000.

I don't have that money for something that might or might not solve the issue. My stomach being bloated? That's aesthetic mostly. Right?

If it can make me less gassy, that would be nice. But is that the solution? Is that the only thing making me gassy? I mean I frequently have diarrhea, so maybe the same thing causing the diarrhea is causing the gas, and my not being able to burp is just an additional thing?

People on the subreddit proposed that it's possible that the diarrhea is caused because the gas makes everything move along faster. Googling isn't giving me information on that, just about RCPD causing constipation, but that doesn't mean it isn't true, because, as I mentioned, knowledge about RCPD is just in its infancy. However, it is just supposition.

I mentioned this whole thing to my physical therapist, and how there is treatment for it in England for under 1000 dollars, and that maybe it would be worth flying there, but she mentioned that once I factor in the extra costs it might work out to be close to the same price. I don't know... The reason I mentioned it to her is because I have hyperlordosis, my lower back is rounded too much. I know that this goes hand in hand with my stomach sticking out, but does it cause my stomach to stick out or does my stomach sticking out cause my back to round? She said that my having excess bloat in my stomach is what is causing my back to be rounded, and it causes my center of gravity to be off, and a lot of my lower back pain can probably be relieved if I get rid of the bloat. She said that the $3500 payment for treatment might have financial payoffs, if I need less frequent physical therapy if it works I can save that money.

A lot to think about.

I'd have to save up before I'd do such a treatment. And it's the most expensive treatment I'd ever do. More than both my homebirths combined. But not knowing if that is even going to solve my main issue, the bloat and gassiness, it's a hard choice.

I decided that I will try to save up money. But at the same time, I will pursue other avenues. 

I've never had a full checkup with a gastro, just told "oh, its just IBS" without ever having been tested. SIBO, small intestinal bacterial overgrowth could cause my symptoms. I've never had a colonoscopy or endoscopy. So I asked around for a gastro that is good through my insurance and booked an appointment for next month. I got the name for a gastro that is an expert on EDS related gastro things, but he only sees people privately, so I have to decide if I want to go to him if the first one doesn't work out.

I heard that the low FODMAPs diet has helped some people with RCPD, and if it makes you less gassy it might help with my bloat. The problem is I'm already on a restricted diet. I know that I can't eat gluten, oats, brassicas (broccoli, cauliflower, cabbage, turnips, radishes, boy choy, kale), legumes (lentils and beans and chickpeas), eggs, certain dairy, most nuts and seeds, etc... Needing to cut out even more foods seems too hard, especially since many of my staples are on the not allowed list, and many of the things that are allowed are things that I can't eat, so my diet would be very restricted. This is a lot of work, and as it is I have a hard time feeding myself regularly enough to help with my POTS, and if I have to cut out more that may be even more problematic... (Then there's also the whole can't eat garlic, onions, scallions aspect that makes me want to cry.) Not to mention the mental and exhaustion aspect of needing to restrict my diet even further, which is why I no longer eat Paleo...

But before I spend $3500 on a treatment that might not work because maybe my issue is actually caused by an intolerance to fermentable short-chain carbohydrates, maybe I need to give that diet a try.

I don't know.

All I know is that I have some facts on the ground.

1) The cost.

2) Where to do the treatment.

3) It may or may not help me.

4) Bloat reduction can help my back pain.

5) There are other ways to try to reduce bloat.

It made me want to cry when I left her office. I went in feeling hopeful and left feeling so crushed when I heard the cost. Our national insurance doesn't pay for it, and even more expensive private insurances don't pay for it. Just writing this up makes me want to cry.
Maybe if I wait longer, wait for there to be more knowledge about this, insurance will finally cover it? But more years of suffering?

I have an appointment with a gastro coming up. 

So that's my next step.

And in the words of Brandon Sanderson, the next step is the most important step someone can take. And I have that. That's all I know.

I wish I could finish this post with something more conclusive. But hey, at least I educated you about something. And maybe my post can help someone else dealing with this little known medical issue.

Have you ever heard of this medical issue? What would you suggest I do? How would you proceed in my place?