Laryngopharnygeal Reflux (Silent Reflux)

I learned something new yesterday from one of the celiac support groups of which I am a member. There is something called Silent Reflux!

For several days, I had been experiencing something like acid reflux, but it seemed to get stuck inside my throat. It was a very uncomfortable feeling and made my glands and voice box feel swollen.

 I did a little research and came across a website at the MidWest Ear, Nose & Throat P.A. (MWEN&T) which names the problem as Laryngopharyngeal Reflux (LPR) and describes some of the symptoms as:

• Hoarseness
• A "lump" in the throat
• Trouble swallowing
• Chronic cough
• Too much throat mucus
• Heartburn

Here is how it happens:  For people who don't have this problem, the food they eat goes into the stomach where digestion begins and that is the end of the story. For those who do suffer from reflux, some of the food comes back up again. In LPR (Silent Reflux), not only do the stomach contents back up into the esophagus, that backflow (food and/or stomach acid) goes all the way back up “into the larynx (the voice box) or the pharynx (the throat)” (MWEN&T). It can happen at any time, even when no food has been ingested, which explains a lot for me. I couldn't figure out why-- if I hadn't eaten anything-- I was still having this problem!!

 Also, when I was originally diagnosed with GERD back in late October 2009 with my first couple visits to the ER, I couldn’t understand how it could be GERD because I had never been one to have acid reflux (at least as I understood it) and rarely had heartburn. And suddenly, these medical professionals were telling me I was experiencing acid reflux but it didn’t feel like any acid reflux!

I couldn't understand it. So I followed all the guidelines for GERD (no acidic foods, no laying down after eating for several hours, no drinking caffeinated beverages, avoided fatty and fried foods, sugary foods, chocolate) -- and it seemed to make no difference what I ate, or what time of day I ate.

According to the MidWest EN&T, “many people with LPR never have heartburn” (italics added) and because it is so “silent,” it can be difficult to diagnose. For people who have had it in the past without realizing it, we don’t feel the heartburn because the “acid does not have enough time to irritate the esophagus and cause heartburn” (MWEN&T).

On the other hand, if that backflow does end up all the way into the throat, apparently even more damage can be done because the throat and voice box are very sensitive to stomach acid and can even injure your lungs and cause difficulty breathing.  Damage can occur not only to the larynx but to the trachea, bronchi, and lungs (hmmm…. thinking chronic bronchitis, here).

“The lack of GERD symptoms can mean that silent reflux damage is quite advanced when it is finally diagnosed. Long-term silent reflux damage increases the risk of acid reflux complications” (Michael McGrath, “Silent Reflux, Esophageal Reflux and Symptoms") .

Many times over the years, I have had difficulty clearing my throat, and my voice was often hoarse, particularly if I had to lay down (whether on the table at the doctor’s office, the dental chair, or anywhere). MidWest EN&T also suggests that some people “have a problem with too much nose and throat drainage, that is, too much mucus or phlegm.” And yet another sign is a post-nasal drip (which I suddenly developed out of no where with no sign of sneezing or sinus trouble).

Did you know that studies "demonstrate that LPR patients are more likely to have reflux in an upright position whereas GERD patients are more likely to reflux in a supine position" (Postma and Halum, “Laryngeal and Pharyngeal complications of gastroesophageal reflux disease” GI Motility Online)? This might explain why I would experience this silent reflux while sitting up, watching TV or typing away on my computer.

Did you also know that it takes longer to treat and resolve LPR than GERD ?  LPR can take several months to heal, while GERD symptoms can improve rapidly (Postma and Halum). The bad news is that people with silent reflux have a greater chance of esophageal dysplasia (cellular changes in the esophagus) and cancer than those with regular GERD (for cancer to develop as a result of LPR, the LPR must be very severe and go untreated for many years. Source: MWEN&T). As well, esophageal damage by acid and pepsin exposure can be reversible, while your voice box and throat can be easily and irreversibly damaged (Postma and Halum).

Did you also know that symptoms of LPR can also include chest pain (McGrath)? Yep, have had that in my little line-up of symptoms, but I'm not saying that is the cause. According to McGrath, “Hoarseness is most common in the mornings, as lying down increases the chances of esophageal reflux.” I’ve had plenty of experience with that. McGrath also states that “if stomach acid reaches the salivary glands, the glands may flood the mouth with a sour, salty liquid called water brash.” Again, another new experience during my 4-day silent reflux also. I couldn’t figure out why my mouth was watering at weird random times.

Did you know that LPR and GERD are not treated in the same way? They need to be treated differently because the laryngeal mucosa is so much more easily damaged than esophageal mucosa. Postma and Halum say that “the esophagus can tolerate exposure of up to 50 episodes of reflux a day without injury” and that “as few as three isolated episodes of laryngeal acid/pepsin exposure per week have been shown to induce injury.” In a nutshell, GERD is easier to treat and responds to treatment, but successful treatment of LPR requires chronic therapy.

That might explain why the clinic orginally had me on the Prilosec (omeprazole, a PPI or proton-pump-inhibitor) twice a day rather than once daily (more commonly for GERD). For LPR, you would need “twice daily PPI coverage” and would need to take it 30 – 45 minutes before breakfast, and again before dinner.

I actually had stopped taking the Prilosec once I finally got the official diagnosis of celiac disease because it didn’t seem to matter whether I took it or not. However, I also found out later that I was not taking it properly (on an empty stomach, at least 30 minutes before eating). It wasn’t until recently that I felt the silent reflux (LPR) again and this time it lasted for several days. But at the time, I didn’t even know it was silent reflux—I just thought it was “reflux” and couldn’t figure out what the heck it was doing in my neck and getting stuck in my throat!!

Just for the record, I am not a pill person. Taking vitamins is bad enough, but at least I know they are all natural, and have no fillers or extra chemicals. Whereas, these medications—I would just as soon do without. Yet, according to Postma and Halen, I need to stay on it for at least 6 months, and if the inflammation is gone I can taper off and eventually discontinue the antireflux meds. According to Postma and Halen, “50% of LPR patients on twice-daily PPI therapy have symptomatic improvement at 2 months, and an additional 22% improve from 2 to 4 months after initiating therapy.”

Other treatments may be as simple as basic antacids like Mylanta and Maalox. MidWestEN&T recommend 1 tablespoon four times a day—basically, one after each meal and one before bedtime. In case you haven’t already noticed with my own personal story (and according MWEN&T), when you have LPR, changing habits and diets don’t always work. So stick to treatment.

What is the connection with celiac disease? According to Postma and Halum, “immunocompromised patients may mount little response with infectious laryngitis” and as such are more susceptible to infections. More chronic forms of LPR can be found in those with autoimmune diseases: “autoimmune diseases that produce laryngeal inflammation most commonly have coexistent systemic symptoms” (i.e. people with an autoimmune disease uaully have symptoms that affect multiple organs, systems, etc.) and if not treated properly, there is a greater rate of reoccurrence and complications.

According to Natural-Reflux-Cure.com, “digestive juices can get into the upper throat at night as with regular acid reflux or GERD, but more people with LPR have damage occur during the day than at night” --which explains my daytime symptoms completely.

The Natural-Reflux-Cure website lists the following as common possible symptoms of LPR:

• Asthma or asthma-like symptoms
• Bad breath that won’t go away
• Belching or burping
• Chronic Cough
• Difficulty singing or extended talking
• Dysphonia (changes with the voice)
• Ear pain
• Feeling of a lump or something stuck in the throat
• Hoarseness
• Laryngospasm (feeling like one can’t catch one’s breath)
• Post nasal drip
• Sore throat
• Throat clearing
• Trouble swallowing
• Weak voice
• Wheezing

So, how is your LPR or Silent Reflux? Are you minor, major, or life-threatening? If it is just an annoyance, than it is minor (like mine). If it is major, than your symptoms interfere with your social life and/or with work. Certainly, if it is life-threatening, then you have an “airway obstruction problem, severe pulmonary disease, or malignancy” (Postma and Halum).

How do they diagnose LPR? A throat exam is the first step in the diagnosis because your throat will likely look red and swollen. A couple nights ago, for example, my voice box felt so swollen I had to breathe through my mouth a few times, or scoot my jaw foreward (which I find myself doing a lot anyway because my jaw seems set too far back-- at least that was my reasoning for breathing better, anyway).

Tests for LPR include pH monitoring (or pH-metry) and a barium swallow in which you swallow a chalky liquid that can be seen on x-rays. It will reveal any narrowing or abnormalities in the throat or esophagus (MWEN&T). The pH-metry involves a 24-hour, over-night test (done at home) in which a tube is placed through your nose and stays in your throat to measure acid.

And believe it or not, LPR can occur in babies and children! It can cause throat and lung problems and even breathing problems in babies who seem to have a lot of phlegm of difficulty swallowing or nursing. I would have never guessed a baby could have acid reflux!

Personal conclusion: Sometimes I wonder if this is why I could never yell (my yells end in fits of coughing) or speak loudly (why I am always so ‘quiet’) or read aloud for long periods of time—my voice becomes weak and hoarse and I begin coughing or just lose my voice. When I was younger, doctors would just dismiss it and say “Oh, its probably just scar tissue from repeated bouts of strep throat.” I’m beginning to think I’ve had this LPR off and on, all my life.

Diagnosis Confirmed!

My first visit with the internal medicine specialist was a little stressful for me, but one of relief, as well.  It was stressful because I didn't really know where to begin.  I was having so many symptoms and they seemed to cross multiple systems in the body.  But it was also one with relief because for the first time in thirteen weeks, the doctor looked at me like he was genuinely interested in what was going on, and just as curious as myself as to the cause!

We discussed several things that were happening-- from the rapid pulse at random (it was 114 in his office at the time), the drug reactions (which I had never had prior to all of this), to the fatigue, the heart palpitations, and even the rashes on both my arms.

The best part about the visit was that there was an answer that would explain several (if not most) of the symptoms: Celiac Disease.  But how could I have CD with the blood tests coming back normal?  His answer was that I had Dermatitis Herpetiformis (DH) and that in order for the blood tests to be positive for CD, I would have had to be on a high (very high) gluten diet for 2 to 6 weeks!  And each time I was tested, I had either been off gluten for a while, or on a very low gluten diet.  The DH was definitive enough, and he told me that experts do not recommend a small intestine biopsy as long as that rash is present.

My DH had been present for 5 years, and nothing (and I do mean nothing!) could make it go away-- whether it was OTC medications, or prescribed.  It will take some time to heal, but it is gradually softening and diminishing.

The internist did order other tests, including more thyroid tests, a 24-hour UA, a DEXA scan (for bone density), a Holter Monitor, and a stress-echocardiogram to find out more about why my heart might feel so weak, or have palpitations.  He also suggested I continue my vitamin supplements, particularly D3, K, Iron, and Calcium/Magnesium.

In the meantime, I joined a couple of online support groups for CD and found an immense number of similarities in symptom stories, particularly with heart palpitations, weakness, and fatigue.  It seems as though the medical community does not have any direct answers regarding the connection between the heart and CD, but keep in mind that CD is a cross-system disorder and can affect any system in the body in a number of ways.  Perhaps the medical community just doesn't want to say one way or the other... playing it safe in their eyes, but not so for the CD community.

My thyroid tests ended up being normal, and at this point I don't know the results of the 24-Hour UA, the DEXA scan, nor the Holter Monitor results (which I wore for 48 hours).  During my time wearing the monitor, the palpitations were mostly quiet or so faint I couldn't be sure it was what I was feeling, so I guess it will be up to the experts to decide.

Happily, my stress-echocardiogram showed "one beautiful-looking pump" (cardiologist's words) with nothing wrong, whatsoever, that he could see.  My blood pressure was great (108/78), my cholesterol was great (162), and there was no visible reason to suspect anything wrong with my heart.  Though it did make me feel better, it does not take away the nervousness when something feels weird with my heart.  Perhaps it is my body's way of dealing with such a vital organ.  I can handle anything with any other part of my body, but my brain does not like it when my heart doesn't feel normal.

At the least, I can say that my heart seems to have settled down a bit and is in a mostly quiet mode these past few days.  Let's hope it continues.

Celiac and Vitamin Supplements

One of the questions that I have been mulling over, is whether I am wasting my money in continuing to take vitamin supplements if CD has made my body unable to absorb nutrients.

For the past several years, I have taken several vitamin supplements rather than one multivitamin. I have regularly taken Iron, Evening Primrose with Black Currant Seed Oil, CoQ10-100, Biotin, Resveratrol, and Lithium Orotate (5 mg), and a variety of others depending on my budget (Licopein, for example). When I became very ill in late October, I stopped taking all supplements, stopped taking any OTC medicines whether for pain or allergies, and also completely altered my diet, eliminating diet caffeine sodas (and all sodas), fatty or fried foods, and sugar.

Being overwhelmed with fatigue for the past couple of months, I have started taking iron supplements again, and would like to go back to my other supplements as well. For some reason, I am thinking that these extra vitamins may be what kept me somewhat healthy during such stressful times. But am I just throwing my money away if my body can't absorb the nutrients anyway?

I did some research and was directed back to the website I have listed here in "Helpful Links," Celiac.com. I found an article by Jefferson Adams called "Do Vitamin Supplements Benefit Celiac Patients?" (03/10/2009). Adams states that "B-vitamin supplements are helpful in raising vitamin B6, B12 and folate levels and in reducing homocysteine levels in people with celiac disease." It also goes on to say that people with CD may have higher rates of hyperhomocysteinemia-- which I had to look up-- due to low levels of folate and vitamin B12.

Hyperphomocysteinemia (according to my old nursing school books) is simply too much homocysteine in the blood. Basically, homocysteine is a protein waste product--in fact it is an amino acid itself (proteins are amino acids), and it creates little 'irregularities' inside the surface of our blood vessels. The problem is that these little irregularities tend to snag fats which in turn begin to build up in our arteries. Too much homocysteine can lead to coronary disease, stroke and peripheral vascular diseases. In fact, it can damage the inner lining of the arteries and in turn may end up causing blood clots.

The American Heart Association says that:

"Several studies have found that higher blood levels of B vitamins are related, at least partly, to lower concentrations of homocysteine. Other recent evidence shows that low blood levels of folic acid are linked with a higher risk of fatal coronary heart disease and stroke."

Adams (Celiac.com) reminds us that:

"The best way to prevent Hyperhomocysteinaemia is to eat things that contain B6, B12, and folate such as potato, greens, beans and fish."

In his article, Adams states that a team of researchers set out to evalutate the effectiveness of vitamin supplements for B6, B12, and folate on homocysteine levels in people with CD (check Celiac.com for specifics). What they found was that those with CD who used vitamin supplements had higher blood levels of vitamin B6, and folate, and that they also showed lower levels of plasma homocysteine.

Ultimately, the study "confirms earlier studies suggesting that both the presence and severity of celiac disease determined homocysteine levels" and "the regular use of supplemental B vitamins resulted in higher levels of serum vitamin B6, folate, vitamin B12 and lower levels of plasma homocysteine in patients with celiac disease" (Adams).

So I do believe I will continue taking my Biotin supplement because it also contains vitamins B12, B6, B2, and B1 and others. According to Adams, B vitamins seem to offer some protection against the death of the villi in my intestines. It could very well be that I didn't develop the adverse affects of CD earlier because I have had these supplements in my system for the past few years. As my budget waned through this financially stressful year, I was taking fewer supplements, often skipping days without them. And then my body said "OK, can't do it anymore. Wake up and recognize the problem."

Today I have an appointment at the clinic, and will present my ideas and lifelong symptoms. Until now, I had never made the connection between my health and anything wrong because to me it was normal-- it was all I knew. I adapted and moved on, just like every other kid with something wrong. And because the symptoms of CD are so diverse, it is no wonder that nobody else caught it earlier, either.
If you are interested in where I buy my vitamin supplements, I buy them from Andrew Lessman's ProCaps Laboratories. I like these supplements because they are all natural with no additives or fillers and contain no gluten, etc. They can be purchased on Autoship, which means they will be shipped to me regularly, or I can delay and change the shipment times. And the best part is that they are affordable.