Week 18 Recap: Fine Tuning

Now that I am finally feeling like some healing is taking place in my body, it is time to start fine tuning and working on the last remaining “symptoms” that have either not been addressed or not completely gone away.

Last week went quite well – at least during the day time. All of my treadmill walks were completely normal, the palpitations and left subclavian pain have all but dissipated, and there was very little to report out of the ordinary, other than the internal trembling and fluttering that seems to be increasing, particularly in the evenings and at night. Trouble is, I can’t think of a way to describe what is going on, but I will try anyway.

It has become common for me to experience a mild stomach ache after eating—the larger the meal, the greater the stomach ache. The higher the fat content, the higher the chance for digestive problems. It will usually start with an ache, not long followed by a sensation of mild foaming or reflux, which then triggers a trembling or quivering, usually beginning in the chest makes me feel like my heart is fluttering when it is not). This is not something new for me—it has happened in the past, but it had stopped for at least a month, and then started again on April 20th and has since then increased in regularity and intensity.

The inner trembling often lasts throughout the night, and sometimes during the day as well. Sometimes it gets so bad that it feels like it triggers heart palpitations, causing me to be short of breath in the middle of the night. When that happens I have to sit up, or change positions in bed. It is scary, but I am usually so groggy it is something for which I simply make a mental note, and really don’t remember all that well.

I read recently that sometimes gallbladder disease goes hand in hand with celiac, and will do a little research on it to see if it matches these weird symptoms that have cropped up again, and promise to post the results of my research here.

ODD THINGS THIS WEEK:

• Felt some right-ear pain a couple of times during one night but didn’t happen again all week. Wondering if it has anything to do with being shocked by the treadmill (ear buds) several days ago.

All 17 miles of my treadmill walks this week were uneventful. In addition to treadmill walks, I worked out for 105 minutes with Pilates, and 100 minutes of weight-bearing exercises.

Though I have mentioned the odd trembling to doctors before (for which all medical professionals gave me puzzled looks), I have yet to mention the upset stomach after eating. It will be next on my list to fine tune my health…

 

Week 15 Recap: Still Learning

Did you know that most Yoplait Lite yogurts contain aspartame? I had been so busy looking for “GLUTEN FREE” on the labels I failed to notice the aspartame listed in the ingredients. I don’t react every time to aspartame, but suspect I am more sensitive to it now, than in the past.

I think I accidentally glutened myself over Easter weekend… one of those things that in retrospect I ask myself “What was I thinking?” I used distilled white vinegar in a recipe and think that may have done it. As to whether vinegar is safe or not, is debatable.

According to Gluten Free: The Celiac Site:

“Distilled vinegar (or white vinegar) has been listed as unsafe for people with celiac disease by the major organizations in the United States, but not by organizations in any other countries. This position changed in 2001. The Gluten Intolerance Group® and the Celiac Disease Foundation now state that all vinegar (except malt vinegar) is safe for people with celiac disease to consume. The American Dietetic Association has also stated…that distilled vinegar is gluten free.”

While according to Celiac.com and the Celiac Sprue Association (CSA):

“Distilled vinegar, however, is still on the CSAs ‘Low Gluten Items to Avoid List.’ The CSA still maintains that distilled vinegar and alcohol are ‘questionable,’ even if there is no detectable gluten/gliadin in them, and even though the Gluten Intolerance Group (GIG), Celiac Disease Foundation (CDF) and the new guidelines from the American Dietetic Association (ADA) all include them on their safe lists . The CSA urges celiacs to ascertain the source of any questionable ingredients from their manufacturers.”

I may have been reacting to something else, such as Hershey’s Kisses, but it sure felt like a gluten stomach-ache! Do achy joints have anything to do with being glutened?

The results to my EGD (endoscopy) last week came in, and both biopsies of the stomach and small intestine were normal. Yay! The doctor did not expect to find anything relating to celiac due to the time I’ve spent gluten-free (three months now), but there was also no sign of GERD (gastroesophageal reflux disease). This does not mean I don’t have reflux, it just means it hasn’t advanced to the stage of disease—so I guess I have caught it early enough, which is a good thing!

Besides waking up in the wee hours of the morning every single day and not getting enough sleep, the week was not a bad week. In fact, my treadmill walks were the best ever, feeling almost completely normal! For the first time in about eight weeks, my heart was feeling stronger and stronger—almost as if it has healed. I hope that is the case.

ODD THINGS THIS WEEK:

• A little pain to the left of my sternum, off and on for a couple of days.
• Minor left subclavian pain, off and on all week.
• Tingling tongue, and upper lip, also!
• Strange hives on my knuckles during the week.
• Minor right subclavian pain for about three days.
• Weirds pangs under mandible again.
• Fluttery sensations in chest from time to time, particularly when not feeling well.

“Physical Therapy” totals for the week include 55 minutes of Pilates, 60 minutes of weight-bearing exercises, and 18.309 miles walked.

It is ironic that the more I learn about celiac disease and how my body reacts to gluten, the less I realize I know about celiac and my body!  I am still learning, but it is a good learning.  Because I can be somewhat stubborn and hard-headed, it may take a couple of times to get through my head, but getting through my head it is-- and hopefully sooner than later-- I will finally reach the "Level Two" step (Step 1 = Beginning self-management and Foundation; Step 2 = Intermediate self-management and Expansion; Step 3 = Advanced level self-management and Maintenance) (Celiac Sprue Assocation).

This second step of "rehabilitation" includes (CSA):

• Establishing an individual treatment plan
• Keeping a daily diary and recording all intake, amounts, and reactions
• Identifying and eliminating immune-response triggers
• Waiting 2-4 weeks before reintroducing new or questionable items.
• Expanding knowledge of CD/DH

 Just when I think I have reached Level Two, I end up back in Level One, still trying to figure it all out.  15 weeks and still learning...

Week 14 Recap: Finding "Normal"

This week I found out that our neighborhood has levels of PCE (the nasty carcinogen, tetrachloroethylene) higher than the state allows due to the laundromat leakage in 1989 about a block away, and have been wondering what this means for us... I've always believed this house was making us sick. I drink more water than anyone in this family and I drink it out of the tap. If PCE isn't in the water, is it in the ground? We’ve kept a vegetable garden for years! Our house was not one of the random houses tested, but it would be interesting to know.

Well, back to the recap:

I’m beginning to believe ergocalciferol (prescription dose Vitamin D) might be causing or contributing to what I call occasional “left subclavian” pain— pain that is in the general area below my left shoulder that tends to follow the left subclavian vein/artery. Sure enough, within a day of taking the ergocalciferol, this annoying and random pain was back. The good news is that it is not a long, sustained pain, but something that is just felt off and on throughout the day.

On Wednesday morning I went in for the EGD (esopagogastroduodenoscopy), in which the doctor sent a scope down my esophagus and took a look around. At 8:30 in the morning, I was prepped and ready to go. My blood pressure at the time was 106/72, and I was hooked up to a saline IV solution. By 9:15 I was wheeled into the procedure room full of monitors and equipment.

The nurse told me she was going to inject some medicine into my IV that would make me sleepy, and then told me to lay on my left side. I proceeded to lay on my left and the next thing I remember, I was waking up in a completely different room, the procedure already completed. I was informed that the doctor had tried to talk to me but apparently I was still out cold. It doesn’t take much to knock me out, it just takes a bit to keep me there! I don’t have complete memory of laying on my left side, so I am sure somebody must have been there to catch me. We joked later about the medical staff taking bets to see how long till the patient hits the table.  Somebody could have scored big on me!!

As it turns out, I have a “small hiatal hernia” and biopsies were taken from both the stomach and the duodenum (small intestine). I doubt anything will turn up regarding celiac disease since I have been gluten-free for three months (to the best of my knowledge and abilities).

After the procedure, I felt a bit woozy, but otherwise fine. I tried to sleep off the medication, but in a noisy house full of kids, telephones, and barking dogs, even a medicated sleep was impossible. Oh, how I would have loved to sleep! Once the medication finally did wear off I realized just how sore my throat, stomach, and small intestine actually were! To top it off, I had to deal with this achiness for about two more days, including the continual taste of blood in the back of my throat, and an unpleasant three-day flare-up of acid reflux.

The arrival of the weekend marked my next dose of ergocalciferol, and right on schedule, I felt the first definite heart palpitation I’d felt all week and a double palpitation later in the day. I was also experiencing left subclavian pain again off and on all day, just when the same pain earlier in the week had finally settled down. One other thing I noticed with the ergocalciferol is that for a day or two after taking it, my stomach will feel somewhat glutened and achey. I’ve been having doubts as to whether there isn’t some cross-contamination or small amount of gluten in the pill.

ODD THINGS DURING THE WEEK:

• A headache enough to make me nauseous-- not so much when I sat down but whenever I stood-- both sides of the head.
• Left arm felt slightly numb, and the front of my left shoulder a little achy, and left hand tingling-- on two separate days during the week.
• Tongue began tingling again, late in the week.
• In the wee hours of one morning I woke up enough to feel a heavy trembling in my neck.  I was too groggy to worry and noticed only that it was a very heavy trembling when compared any previous trembling I had felt.  I fell back asleep almost immediately.

Week 14's "physcial therapy" went well.  My treadmill walks seemed easier — no palpitations, congestion, or pain that I noticed.  I totaled 115 minutes with Pilates, 80 minutes with weight-bearing exercises, and walked 16.35 miles. 

In spite of some very minor setbacks with the EGD procedure and possibly with ergocalciferol, it was a good week.

Week 12 Recap: What Recap?

Recap, recap, what is there to recap?  The new "Symptom of the Week"?

What can I say to spice things up a bit?  Basically, the congestion in my chest has shifted up to my neck. I was hoping to find some answers this week with the scheduled MRI, but it never happened. The most frequent “new symptom” was feeling like I had the mumps on the left side: numb below the ear and an achy jaw, every single day.

I did have some good news this past week: the heart palpitations have calmed down considerably; and the other good news (though not such good news for my kids) -- my kids all got sick, but I didn’t —which is the first time in a long time. This could be the result of one of two scenarios: (1) my immune system is finally kicking in, or (2) they all had the swine flu for which I was inoculated late last fall. I’m putting my money on the stronger immune system.

I found a little bit of a pattern in the heart palpitations recently. It seems as though when my oxygen supply either runs short or gets backed up by a kink in the neck (just my guess) I end up with a palpitation—such as when craning my neck to see something, or when talking for a long enough period of time that I need to take a breath.

During the week, I continued to wean myself off of clonazepam (again) by taking smaller and smaller doses. I found this helps avoid the inevitable headaches and sleepless night when I stop suddenly.

I also continued my physical therapy, comprised of two 30-minute treadmill walks, 20 minutes of Pilates, and 10 minutes of weight-bearing exercises, for six days a week, though I did miss one or two Pilates sessions. I kept my treadmill walks slow so as to determine whether I could do it without any heart palpitations, and the results were pretty good —I felt only one palpitation during a treadmill walk all week. The only thing I had to deal with was some upper chest constriction (as if my lungs refused to fully inflate) and some chronic neck congestion, almost entirely on the left side.

Last week's total physical therapy consisted of: 80 minutes of Pilates, 50 minutes of weight-bearing exercises, and walking 17.19 miles.

ODD EVENTS DURING THE WEEK:

• On one day, I ended up with a sudden bout of nausea and a weird feeling on the left side of my head. When I barely touched my head above my left ear, I felt pain sensations shoot out and upward.
• Another day I experienced some minor ringing in my left ear.
• Occasionally, my neck would throb in various areas, sometimes on the right side, but mostly on the left.
• My throat felt itchy and sore, and the right glands felt swollen.
• At least twice that week I awoke to a bloody taste in my mouth, and a lot of left-sided head and neck pain.
• One day I went to use my earbuds while on my treadmill but the left one kept shocking me for some reason, and created an earache in that ear.  Decided to opt out of using earbuds while on the treadmill.

On the day that I was scheduled for the head/neck MRI, the hospital ran a CT scan first to determine the nature of the prosthetic in my right ear (having had a stapedectomy almost 20 years ago). Turns out, there was some kind of metal in the prosthesis, and the MRI could not be done. Now what? We faxed the University of Washington Medical Center for my records so we could get a brand and model number of the prosthesis, but the MRI would have to be rescheduled. I left feeling very disappointed because I still had no answers.

That very same day, I had a consultation with a GI specialist, who seemed rather perturbed that my doctor did not confirm my celiac disease with a small intestine biopsy. She accused him of making a lot of generalizations without confirming the disease, but also admitted he could be correct in the diagnosis. As for herself, she refused to call it celiac until something shows up in a biopsy (of which she said celiac likely won't show up now, having been g-free for three months), or I have the gene for it (which they will apparently do at the same time). So bottom line, I go in for an esophagogastroduodenoscopy (EGD) on March 31.

The EGD will look at my esophagus, stomach, and duodenum (first part of the small intestine) with an endoscope, which can also be used to biopsy different areas if necessary.  According to SurgeryEncylopedia.com, it can be used:

"to diagnose early-stage cancer and can frequently help determine whether a growth is benign or malignant. The doctor can obtain biopsies of inflamed or suspicious tissue for examination in the laboratory by a pathologist or cytologist. Cell scrapings can also be taken by introducing a small brush through the endoscope; this technique is especially helpful in diagnosing cancer or an infection."

At the same time, this procedure can be used for:

• removal of polyps and other noncancerous (benign) tissue growths
• stretching narrowed areas (strictures) in the esophagus
• stopping bleeding from ulcers or blood vessels
• removing foreign objects that have been swallowed, such as coins, pins, buttons, small nails, and similar items

With the EGD, the GI-specialist can look for things like: 

• causes of abdominal pain
• achalasia, a defect in the muscular opening between the esophagus and the stomach
• Barrett's esophagus, a precancerous condition of the cells lining the esophagus
• Crohn's disease and inflammatory disease of the small intestine
• esophageal cancer
• gastroesophageal reflux disease (GERD), a condition caused by excess stomach acid
• hiatal hernia
• irritable bowel syndrome
• rectal bleeding
• stomach cancer
• stomach ulcers
• swallowing problems

The only thing that worries me at this point is that I still have random heart palpitations and that we don't know what is going on in my head and neck.  An EGD is contraindicated in patients who are at risk for heart complications or stroke (NIH), and in my mind, as long as we still don't know why I get random heart palpitations or whether I actually  had a TIA or am at risk for a stroke (where was that MRI when I needed it?), there is some risk involved with the EGD.  It may be a low risk, but without answers, to me it is still a risk.  Better safe, than sorry, right?  But I guess we won't know until the actual procedure.

Till next time...

Week 11 Recap: More Questions, but No Answers

Although this past week was better than the one before, it was still full of questions as new symptoms seemed to pop out of nowhere.

For example:
Can GERD cause spasms or trembling of the esophagus? If so, I finally realized the connection this past week. While still in bed on Sunday morning, I noticed that when I shifted positions, my esophagus would start trembling and then eventually settle down. It always happened on the same side on which I was laying. I wondered if a little stomach acid wasn’t leaking into my esophagus with the changing of positions. Was the trembling a reaction to that acid? Could this cause any kind of damage to the nerves?

And most importantly:
Why was this still happening on a strict g-free and GERD diet? The reflux was bad enough that I couldn’t eat because my stomach always felt full, and I spent most of the week with a constant knot under my sternum. I wondered if my esophagus wasn’t inflamed because it was so difficult to eat and drink.

I started out the week with my usual “physical therapy” which consisted of two 30-minute treadmill walks, about 20 minutes of Pilates, and about 10 minutes of basic weight-bearing exercises— six days a week….

...well, that was the plan, anyway...

Monday’s exercise was fine— in fact, almost too easy! The previous week I had difficulty keeping my heart rate down, and now all of a sudden, I couldn’t keep my heart rate up! Even the Pilates and weight-bearing exercises seemed suddenly easy. This made me happy because I felt like I finally cleared another hurdle and was getting stronger!

...But it didn’t last…

Tuesday started out fine, but I began to feel double and triple palpitations as opposed to a single random one here and there. Though multiple palpitations had happened in the past, this was the first time it had ever happened more than once in the same day! Additionally, while I was taking one of my kids to the middle school for band, I felt a pain in my upper left chest that rapidly branched out and then dissipated. It was weird.

Weirder still:
By late afternoon, the jaw behind my left ear began aching. During my second treadmill walk my heart rate was not very high but still felt like I couldn’t get enough air. I experienced a lot of congestion in my neck—as though someone’s hands were around my neck. Why were these double and triple palpitations happening and why did it feel like I couldn’t get a good breath? Will more happen like this?

That same night, we had company come for a short visit that and at about 9 o’clock I started to speak and couldn’t without stammering and stuttering. I couldn’t get my lips and tongue to shape the words I wanted to say. I have no idea what could have caused it but it seemed to clear up a little later—probably in less than a minute. Had I not tried to speak I would never have noticed! Trying to ignore the thoughts racing in the back of my head, I ended up taking a ½ clonazepam to settle myself down and go to sleep.

Medicated or not, I barely slept, and that was the story for the next couple of days. I resorted to one treadmill walk and no other exercise during that time because the heart palpitations seemed to occur much more frequently than before. Also, my neck still felt tight during the walks, even though I had slowed them down considerably, and my chest would ache for the rest of the day. The lumps and bumps in my neck seemed to ache (not my throat, just my neck) and felt tender. I went around with two knots all day: one at the base of my throat, and one on the top of my stomach.

I finally had to admit that Tuesday night’s inability to speak sounded suspiciously like a “mini stroke” or TIA (transient ischemic attack). I knew that a TIA could possibly lead to a full-blown stroke and determined I needed to see my doctor. My doctor performed a neurological evaluation and noticed that I have a “bent” carotid artery—the same left carotid artery that had been numb and tender most of the week. He ordered a head/neck MRI for the following week and told me to take an enteric-coated full-strength aspirin (325 mg) every day for now. I knew this was to help thin the blood (avoiding more clots), so as long as it didn’t irritate my stomach (hence the enteric-coating), I was fine with that. And still, on the way home, I experienced another double or triple palpitation, even though I was actually feeling pretty good. Why?

By the weekend, the GERD was not so bad and the constant knot seemed to die down. I slowly reduced the clonazepam throughout the week and hope not to need it again…. but it is there to get me through any more anxious nights.

I have my own theory as to why I might have blood clots floating around, but since I am not a doctor, it is just a lay-person's wild idea.  Back when my heart wasn't doing so well (some kind of myocarditis or cardiomyopathy), my ejection fraction dropped to borderline low (55%).  When the heart does not pump out efficiently (systolic), some of that blood can kind of "back up" so to speak-- and cause some clotting.  With all my aerobic exercise since then, perhaps some of those clots have been breaking loose-- whereever they may be hidden.  But that is just my wild-eyed-theory and probably far from reality.

Just the same, I experienced too many mysterious events this week and as usual it can be very frustrating. My hope is that we will have answers this new week with the MRI and a GI consultation on the same day.

Stay tuned…

Week 10 Recap: Gluten Reactions?

People have warned me about reactions to gluten once you have been g-free for any length of time. I have been told that each accidental exposure seems to result in a different or worse reaction than before. If what I experienced last week was a result of an accidental exposure, I think I ran the gamut of every sick feeling I’ve ever had -- and all in less than five days.

The week started out great, well into the 90th-percentile for me. I continued my “physical therapy” with two 30-minute treadmill walks, upped my Pilates time to 30 minutes, and upped my weight-bearing exercises to 15 minutes. My plan was to do continue with a six-day exercise program.

I also decided that I didn’t want to continue using clonazepam to help me sleep anymore. I have never liked the idea of taking drugs that do anything to my brain, and I don't like the idea of having to be “weaned” off of medications, especially ones that might require additional medications to counter the side effects of weaning. Well, the idea was a good one but I ended up taking lorazepam instead (Ativan). It was a tiny dose and I figured it would be a good way to slow down. It worked— I slept through the entire night for the first time I can remember in a long time!

But by Tuesday I started having a lot of what I call “subclavian” pain (just because it is in the general area of the subclavian vein --below my shoulder). It was so pronounced I gave it a 5.5 on the pain scale: moderate pain. It was not the first time I have experienced pain or congestion in that same area, but it seemed pretty strong this time and the pain radiated from the left subclavian area toward my left armpit as well. It lasted off and on all day and I ended up taking lorazepam to help me sleep again.

By Wednesday, I wasn’t feeling very good. I was feeling flu-like and couldn’t seem to keep my heart rate down during my treadmill walks. At the same time I developed a migraine headache on the right side of my head that steadily worsened throughout the day. By bedtime I was feeling weak and shaky and my insides were “trembling” again. I was so uncomfortable I resorted to lorazepam again to help me sleep because it had worked so well the previous two nights. It didn’t occur to me that the lorazepam might contain gluten.

The next day I continued to have trouble keeping my heart rate down during my treadmill walk and ended up reducing the speed and held on to the rails when I felt too winded. I also continued to battle the right-sided migraine as well as left chest pain that radiated upward into that left shoulder/subclavian area. The only good news was that my headache went away when I did my treadmill walks and suspected it was due to the increase in oxygen in my body. I determined not to take any more medications to help me sleep, and took Advil to dull the headache, instead.

As you can imagine, I didn’t sleep that night, and had to put up with internal muscle trembling which seemed to start in my esophagus at bedtime and worked its way all the way through to my intestines by morning. At least the headache went away! That Friday was the day I noticed the involuntary gasps which have happened several times over the past week or two, sometimes during the day, mostly at night, and for no apparent reason. The kind of involuntary gasps you experience while crying. Sometimes just a single one, sometimes 2 or 3 in quick succession; sometimes in the day time, but mostly at night. Chalked it up to just another one of those things, but wondered if it wasn’t somehow connected to everything else I was experiencing that week!!

Throughout most of Friday I was feeling very weak. Once again, I had a hard time keeping my heart rate down during the treadmill walk, sometimes exceeding 95% of my heart rate by several beats. I didn’t feel hungry, but forced myself to eat and ended up with a bad case of reflux all afternoon in spite of the twice daily omeprazole (Prilosec). It felt like the reflux was pressing against my lungs and chest, making my chest feet very full.

To ease the reflux and the bloating I was feeling, I took Mylanta twice that evening, but it didn’t do much good. I hardly slept again that night, and I felt intestinal trembling all night long, clear into dawn again—it was like I had a motor running that I couldn’t turn off.  (If you ever want to know how this trembling feels, stand in the shower and let the spray beat down on your chest.  That is how it feels, but from the inside.)

I spent most of Saturday morning feeling “weird and weak” like I either had low blood-sugar or low blood-pressure. My stomach felt hungry, but my brain didn’t. I weighed myself for the first time in I-don’t-know-how-many months (my only weight came from doctors' offices) and was at 108 lbs. That is probably the lowest I have been in 5 years, since the DH (dermatitis herpetiformis) first showed up. Though 108 is actually a good weight for me (between 105 and 110 is generally when I feel my best-- I am a small person), I am not trying to lose weight. If I was trying to lose weight and felt good, I wouldn’t care, but I don’t feel good, so I’m not sure that it’s such a good thing.

It took another night before all these weird symptoms even began to subside. I decided to skip the sixth day with Pilates and weight training and even came close to giving up the treadmill for that day, but somehow I managed to get it done, and that made me happy. My exercise totals for the week: 18.85 miles on the treadmill, 130 minutes with Pilates and 60 minutes in weight-training.

Overall, it was a rough week and I don’t want a repeat of this week any time soon— in fact, never again would be nice.

I believe I was having a reaction to gluten, though I do not know the source for sure. I know that I am very strict with my diet, and so I suspect it may be the lorazepam which was prescribed for me during one ER visit to help me get over the “hurdles.” Regardless, I won’t be taking it again!

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.