So, I didn’t go back to the doctor as planned. Things didn’t really work out for me to be able to do that. I’m hoping to see him this week, though.
As such, this will just be a short post to report on the last week.
In a previous post I outlined a few reasons why I think I might have Celiac disease, or at least some sensitivity to gluten. I gave the gluten-free diet a try last week, and I’m even more convinced that this is the case.
Since giving up gluten, I can confidently say that I’ve been doing much better. The bloating in my face and stomach are gradually subsiding, and I’m not as gassy at nights as I used to be. I still have a few problems with my salivary glands, but they have been very minor. And most of the time, when I do have an issue, it’s because I accidentally exposed myself to gluten again, like the oreo cookie bits in my Jell-O pudding, or the mozzarella cheese in my sandwich wrap. As long as I stay away from sources of gluten, I have been mostly okay.
I must admit, giving up gluten hasn’t been as hard as I thought it might have been, but there have definitely been some challenges. At least for the time being, my diet is very restricted. As a result, I have to be a lot more mindful about my meals than I used to be – especially when I’m going to be out during the day. When I’m on the road for a long time, there isn’t much that is readily available for me to eat, as so much of our diet here in Jamaica is based on flour. Therefore, I have the following options to consider each day before I leave home:
I can make a meal myself and eat it before I leave.
I can think of a restaurant where I can get something safe to eat. Usually, this food is a bit more expensive than other options, and will take a while to make, so I have to budget both the time and the money for this.
I can prepare my own meals and snacks and take them with me.
This week I have made different choices each day, depending on what my schedule will allow. It’s a bit challenging, because I don’t really like cooking, and I used to eat out quite a lot. But I think that I will become more comfortable with this new lifestyle, especially as I become more acquainted with foods and recipes that I can eat without suffering afterwards.
It’s a challenging new lifestyle for me, but I’m happy to be feeling better. None of the cakes, burgers, or patties in the world could convince me to make myself suffer again.
Another challenge that I’ll have is that I need to get tested, and I’m supposed to continue eating gluten until I do. However, I understand that it is possible to be genetically tested for Celiac disease, and I think I know a place where I might be able to do that.
I guess what is really important right now is for me to see the doctor for some advice. So I will continue staying off gluten, and I’ll work on getting a doctor’s appointment.
I’ve been feeling extremely tired today. Actually, it’s 5:30 now and I still haven’t gotten out of bed. I always seem to get really tired whenever I have an especially bad episode.
I was sitting up in bed about a half hour ago, updating my friends and my mom on my condition. My duct was still swollen, and I was kind of playing with it with my tongue. All of a sudden, I felt something hard break off into my mouth. I pulled it out with my finger, and lo and behold, there was the salivary gland stone. Believe me when I tell you, this thing is tiny. I don’t think it measures even a millimeter across. If that caused so much pain and suffering, I can’t imagine what some people go through with some of the huge stones that you see on Google image search.
I rushed to my chest of drawers and carefully put the stone down, determined to show it to my doctor tomorrow. Then I hurried over to the mirror to see what was happening with the rest of the blockage. The mass that I could see under the skin was definitely larger than what had just broken off. I thought that maybe it was just a piece of a larger stone. However, when I pressed on my gland, I saw that whatever was left in there was ready to ooze out. After about 20 minutes of continuous pressure, I was able to force out a copious amount of something thick and white… probably pus. Holding the disgusting effluence in my mouth, I rushed to the nightstand, dumped out my bottle of melatonin on the desk, and then spat everything into the empty bottle. I got the tiny stone from the drawers and dropped it in there too. Now that the blockage is finally free, two days’ worth of saliva is trying to empty out into my mouth. It tastes awful, but I’m trying to expedite the process by sucking on the duct. I’m going to spit everything that comes up into this bottle until it’s full, and take it to my doctor tomorrow. It won’t be long now until I have to stop, because I’ve already filled it 3/4 of the way.
I’ve filled this bottle 3/4 of the way with saliva in less than an hour
I’m really excited that I’ve finally been able to save a stone. The last time this happened, it came free in my sleep and I swallowed it, but I definitely know it was there. My ultrasound, X-ray, and CT scan all failed to show a stone in my duct. The doctor said that there may have been uncalcified debris in the gland, but based on the CT scan results, he thought it was unlikely, and didn’t think an MRI was necessary.
I definitely have a sample for him now. I know that saliva normally contains minerals, and I can’t say I know what normal saliva looks like – but there’s a lot of sediment in my sample that’s settled at the bottom, including the stone. I really hope he takes this seriously enough to have it tested to see what exactly is wrong.
In the meantime, I’m going to try drinking a lot of water to help my gland wash out and help rinse this disgusting salty taste out of my mouth. In light of the results I got from the Celiac Disease Foundation’s diagnostic test, I’m going to continue keeping away from gluten until I’m sure I know what’s going on with me. Tomorrow, I will update after my doctor’s visit.
I’ve gotten a little better since last night. I’m really tired, and I had to cancel all my plans to go out today because one side of my face was horribly swollen. I didn’t eat until tonight, because it hurt to swallow. But towards the end of the night, I had a greek salad and some baked chicken wings. I haven’t had any problems with my glands, except for residual issues from last night.
Though my swelling has softened up, it hasn’t completely subsided. There seems to be something blocking my Wharton’s duct (the duct opening under your tongue that you gleek through) – I’m pretty sure I can see it just under the skin. I can’t push it out… trying to do so is painful and irritates the gland. So what happened, was, after I ate, my gland swelled back up. It’s now painful to swallow again.
I mentioned celiac disease in my last post, but I didn’t really explain why. I’ve been doing some reading since my oral surgeon sent me off to get tested for autoimmune disease. Since then, three possibilities keep surfacing: lupus, sjogren’s syndrome, and celiac disease. For a while, I was thinking lupus, but even saying the word is scary, and I didn’t want to alarm anyone around me, so I kept my thoughts to myself. I saw a video on Youtube by this girl with lupus, who was talking about the very same salivary gland issues that I’ve been having, and then I read a comment below the video, about the connection between Sjogren’s, lupus, and angioedema (remember that my CT scan showed edema in my cheeks).
After reading that, I pretty much started gearing myself up to receive the diagnosis. But I think the way things happened last night changed my perspective a bit.
I had one meal yesterday. And by the time I had finished that meal, I was swollen and in pain. My salivary gland was clogged and swollen. My throat was swelling up. Even my stomach was so bloated that I couldn’t see my feet when I looked down. My throat and my nose were itching… just like an allergic reaction. I started thinking about celiac disease and gluten sensitivity. I have a friend who’s allergic to gluten. I know she always talked about how she would get swollen if she had bread, and her fibromyalgia would act up. I wondered if maybe the bread in my burger had set off an allergic reaction.
The more I thought about it, the more it made sense. My illness has been slowly progressing for about a decade now. My standard Caribbean diet consists of a lot of flour – bread, dumplings, Johnny cakes, pastries, fritters, roti, patties… when I thought about my illness as an allergy that kept worsening because I kept eating the things I was allergic to, it made sense. It made sense that sometimes antihistamines helped, but antibiotics never really did. All my other allergies getting worse- metals, pollen, contact dermatitis – made sense too.
While writing this post, I’ve completed a quiz by the Celiac Disease Foundation, and confirmed the following symptoms:
Chronic fatigue
Anxiety
Depression
Bloating
Gas
Weight gain
Menstrual irregularities
Eczema
Sjogren’s syndrome was listed as an associated autoimmune disorder, but I haven’t been diagnosed, so I couldn’t include it. But the issues I’ve been having with my salivary gland do seem to suggest that there may be Sjogren’s syndrome as well.
The test results said that I was at an increased risk for celiac disease.
So… it isn’t a diagnosis. But it certainly seems to be a possibility.
If my gland continues to fail to empty, I’m going to have to go back to the oral surgeon’s office on Monday. My parents are going to help me with some money this week, so that I can get an appointment with a rheumatologist and get tested. And I’m going to do my part to stay off of flour. I know that you really aren’t supposed to come off of gluten until you’ve been tested, as it can affect the test results; but I think it’s clear at this point that it’s only a matter of time until I swell up and die from eating the wrong thing.
It seems like there might soon be a light at the end of the tunnel for me. I certainly hope so. Here’s hoping this week will bring better things.
I’m having another attack tonight. I suffered a bout of depression today, because of some other things going on, so I only had one meal today.
I ordered a burger and fries from my favourite restaurant at the food court in the mall. But as soon as I was finished, I felt the familiar tension in my salivary gland duct – this time on the right side. I went to the mirror, lifted my tongue, and attempted to gleek the blockage out, but I couldn’t produce even a drop of saliva from that duct. Before I knew it, I was completely swollen from my chin all the way up to my ear.
I’ve tried placing a hot towel on the swelling, but it doesn’t seem to have helped much. I think I might have seen something white trying to poke out of my duct, so I placed some pressure on the swollen gland to try to force it out. Nothing came out, though, and the gland was too painful, so I gave up. I think it might be starting to empty, drip by drip, but I’m not sure. I’m drinking water right now to try to encourage the gland to flush out. I don’t think there’s anything much else that I can do. If this is going to be like the last time, then I’ll just have to wait for sufficient pressure to build up behind the blockage to force it out, and hope that I don’t suffocate to death in the meantime.
I also have some intermittent itching inside my nose and in the back of my throat… like an allergic reaction. Could this be celiac disease? I know I said a couple of posts ago, that I wouldn’t jump to conclusions, but the itching is really interesting. And now that I think about it, when the swelling started, I got really itchy under my chin, and a fine rash broke out. I wonder if the bread in my burger might have triggered an allergic reaction…
Sigh. I really hope some money comes through soon, so that I can start testing.
I guess I’ll end this post here. As long as I don’t die during the night, I’ll update on my progress tomorrow. I’ll try to get some sleep in the meantime.
I got a bit of a wake-up call this week concerning my weight.
Twice, while trying to dress for school, i couldn’t wear what I had planned to because it didn’t fit right. Shirts wouldn’t stay buttoned, pants could barely stay closed. Apart from being annoying, it was a startling reminder that I wasn’t eating properly and taking care of my health.
Ever since I was diagnosed with PCOS in 2012 or so, my weight has been on an upward trajectory – I’ve gained 40 lbs in about six years, and gone up at least 7 dress sizes. It’s pretty awful when I think about it.
Over the last several years, I’ve made many short-lived attempts to reduce my weight, but they’ve failed for a few different reasons.
I think the major reason is that I just wasn’t able to commit to my goal. The weight gain came on rapidly and seemingly out of nowhere, and I felt powerless to do anything about it. Some of it was exacerbated by medicine I was on, like Prednisone and Microgynon.
I’m far from blameless, though. Around that time, I also succumbed to emotional eating, in an attempt to cope with the stress from other problems I was having at the time. Sweets and fatty foods became my retreats from anxiety and depression. I still struggle with emotional eating on a regular basis.
However, sitting down for the past couple of weeks to write about my health issues has made me realise that there’s actually a lot going on with my body, and it would be good for me to start doing what I can to improve my health.
So, I’ve made a renewed effort to try to lose weight and eat better. Currently, my BMI rating is 29.8, which means I’m overweight. Just 0.2 points more, and I’ll qualify as obese. My goal is to lose the extra 40 lbs I gained. That will get my BMI down to 23.5, and right in the middle of a healthy weight range for my height. I’ve been told in the past that losing weight should improve my hormonal issues, so I’m looking forward to that. It will also be great to be able to shop for clothes at more than just a few stores.
This was a bit of an aside until I see a rheumatologist. I’m not able to see the doctor just yet, due to financial constraints, so I’ll work on my weight and fitness in the meantime.
When I saw the oral surgeon in September, he said that there seemed to be pus coming out of my salivary glands when he expressed them. This, he said, was due to an infection because of the pooled saliva in my blocked glands. He prescribed me ten days’ worth of apo-clindamycin, to be taken once every eight hours.
I found it extremely difficult to take that medication, as it was causing me two major problems. For one, the antibiotics caused awful heartburn, which forced me to stop taking them after two days. I went back to the doctor’s office, but because I’m allergic to so many antibiotics, I couldn’t change the medication. They prescribed me some Zantac to take along with it, which helped a little.
The other problem I had with the medication was that, for some reason, it made the excretions from my salivary gland more prolific, which means that I was dealing with more blockages. It seemed like while I was on the medication, my glands refused to empty on their own. They were extremely swollen, and I had to constantly stroke or push on them to get them to empty.
In all, I probably took the medication for five days total.
A couple of days before my October appointment, I decided that I really needed to finish my medication, so I started again in earnest. On the second day, I was having lunch at school when I felt the familiar tenderness in the duct of my left submandibular gland. I was annoyed, but I figured that the blockage would leave the duct when it was ready. Before I was finished eating however, I felt the swelling worsening, and decided to go home to try to empty it myself. However, it was pouring outside, so I had to wait a while before I could go home.
Sometimes the blockage gets so bad that it feels like it’s pressing on my airway and my ear canal. I know the ear canal doesn’t make sense considering the location of the submandibular gland… maybe it pushes the parotid gland upwards. I’m not sure, but I certainly feel something.
A diagram of the major salivary glands and their positions in the head, from patient.info
While I waited for the rain to let up, my throat started to feel like it was getting smaller, and the swelling was getting really bad, really fast. And for the first time, the swelling was actually painful. I was getting worried, so I called my doctor’s office. By this time it was about 4:30. When the receptionist picked up, I explained that I thought I was having an emergency – that I thought a stone was stuck and causing swelling, and that my throat was closing up. After (presumably) checking with the doctor, she told me that he was seeing his last patient for the day, and I would have to come in the following morning. Even though I was scared that my throat was closing.
Disgruntled and worried, I went home and decided to rest until the following day.
I can’t remember much of what happened immediately afterwards. I do remember calling around to see if there were any other oral surgeons that could help me, but everyone had gone home for the day. Maybe I also went to sleep. I remember that in the night, the swelling was really progressing. I called my mom, and she encouraged me to go to the hospital, so I asked my sister to go with me, and we called a cab to take us.
After waiting for a long time, I finally saw a doctor. As I had expected, she couldn’t do anything to help me. She offered me a hydrocortisone shot for the swelling, but as I was convinced that it was a stone, I refused it. I cried a little bit in the lobby while I waited for the cab to take me home. I was tired, I felt awful, and I was frustrated that I had been paying so much money to try to get my illness diagnosed, and while I was having an emergency, no one was able to help me.
On the way home, I started to feel like the stone might be ready to come free. As soon as I got home, I rushed to the mirror. When I lifted my tongue, I saw something small and yellow just barely pushing out of my swollen duct. I tried to push it out, but to no avail. It was extremely painful to do so.
After a while, I gave up, and decided to go back to bed. I was pretty sure that the blockage wouldn’t move without surgery, so I refused to eat or drink anything for the rest of the night, in preparation for the next day. My friend, who is a student at our university’s dental school, offered to come with me to the doctor’s office the following day.
I stayed up for most of the night, as I was too scared that if I fell asleep, my throat would close up and suffocate me. At about 3 a.m., my throat felt really tight. I called 119 for an ambulance, and a very rude operator informed me that I had called the wrong number for an ambulance, and that someone would call me back. I could barely speak, because of how small my airway was. To date, no one has called me back (Welcome to Jamaica!). Frustrated, I called my mom, who I found had been sitting up, waiting to hear back from me. When my call with her cut off, I tearfully called another friend, who graciously stayed up with me for about an hour. Before he hung up, he suggested that I place a warm compress on my throat. I microwaved a damp hand towel and held it to my neck until it got cold, and then I fell asleep. It seems like during the night, the stone or whatever it was came free, because I woke up about an hour later, and found that awful tasting, salty saliva was slowly seeping into my mouth. It made me nauseous, but I was glad that the stone had come free, because by that time, the swelling was so bad that I was actually choking. When the sun finally came up, I was relieved to have survived the night.
I showered and went to the doctor’s office at about 10:30, where my friend from the dental school was waiting for me. She sat with me and fussed over my swollen face, until it was our turn to go in to the doctor. And it was then that I got the disappointing news, that there was actually no stone in my salivary glands.
I really wanted to cry after that, but my friend comforted me before returning to school. I was extremely tired, so I went home and slept. My swelling went down over the next couple of days, and I was extremely tired.
This is a picture of mumps, but is not unlike the way I looked that night. My swelling was noticeably worse on the left side, and took a few days to go down completely
That was, by far, the worst episode I’ve had to date. Since then, I continue to have swelling and express white threads. At this point, I’m trying to get an appointment with a GP, so that I can get a referral to a rheumatologist. The next step in my journey is to begin testing for autoimmune diseases. I have a theory about what I might have, but I don’t want to jump to any conclusions just yet.
Hopefully, my next post will be about my visit to the rheumatologist.
When I really think about it, I realise that my illness might have been gradually progressing for several years.
I’m not really sure when I started getting the itching under my jaw. I hadn’t started university yet, so it was definitely before 2015, but that’s as much as I can say. I didn’t really pay it much attention at the time; I couldn’t even pinpoint what was causing the irritation. It could have been my eczema, or it could have been hirsutism from my recently diagnosed Polycystic Ovarian Syndrome (diagnosed 2011). It was kind of a joke among my family, the way I would dig at my jawline with my index finger. I couldn’t really blame them for laughing – sometimes I would scratch so vigorously that I felt like a dog scratching with its leg.
Sometimes when my allergies acted up, the itching would spread to my nose, throat and ears. When that started happening, I figured it was due to an allergic reaction. I could sometimes calm the irritation with a dose of Piriton. It never completely stopped, though. I’ve been going at it for so long, that I have small rough patches on my neck where I usually scratch.
While my itching remained a mystery for many years, as it got worse, I was able to gradually decipher what was exactly going on.
In September 2017, my allergies suddenly got worse, when I seemed to develop a pollen allergy. I began sneezing almost constantly, and I think the constant stimulation to my salivary glands exacerbated whatever had been causing the itching for all those years. I can’t be sure that the itching got any worse, but I started experiencing near constant swelling under my jaw. At that time, I thought that it was my tonsils that were swollen, and so I was going to the doctor almost every month, getting antihistamines and antibiotics. Obviously, it didn’t really help much. At best, I would feel better while on medication, and then as soon as I came off it, my symptoms would return. At one point, I was actually planning to have my tonsils removed in the summer of this year.
This is a good example of what my jaw looks like… it looks slightly worse or better depending on how bad the swelling is
The progress of my illness hit a plateau until April or May 2018, when I started noticing new symptoms.
I would notice that when I started scratching, inside my mouth felt swollen and tasted weird. After spending some time pressing on the gland, saliva would gush into my mouth, and gradually the situation would improve. Within a week or two of noticing this new development, I started pulling some white, stringy substance out of my mouth before the saliva gushed out. I can’t explain what I felt, but there was a distinct feeling whenever one of these white threads would present in my mouth. One time, I rushed to the mirror when I felt the sensation, and lifted my tongue. I saw a white thread peeking out of my Wharton’s duct. I grabbed it and pulled it, and it slid out of the duct, with little resistance. I remember feeling extremely grossed out. At that point, I abandoned my allergy theory, and became convinced that my salivary glands had been infested by worms.
The “openings of the ducts” show the position of the Wharton’s duct – it opens at the base of the frenulum
Around the time that I had come to this conclusion, I found a particularly good doctor at my school’s medical center. He ordered an ultrasound of my neck, which came back completely normal, except for what he described as a node on my lymph nodes. He assured me that it was very likely benign, and due to continuous infection. He assured me that if there were worms in my salivary gland, they would have shown up in the ultrasound; however, by this time, I had collected a number of them in a pill bottle, submerged in rubbing alcohol, and I wasn’t convinced. He didn’t have enough evidence to have me referred to another hospital’s microbiology unit for testing, so I returned home to continue my own research.
By this time I had come across several online forums where people were discussing symptoms similar to my own. I had seen Sjogren’s Syndrome mentioned many times, so I decided to look into that possibility. After searching my symptoms along with the term “Sjogren’s Syndrome” I found a few articles written for the newspaper by a local dentist.
Eventually, I made an appointment to see her. She found my case pretty engaging, and for the first time, I found someone else who was as interested in my gland threads as I was.
The white threads that have come out of my salivary gland. As shown in the one on the lower left, they’re long and thin; but because they’re so sticky, they fold in on themselves before i can get them into the bottle.
She actually took one of the threads out of the bottle with an instrument like a pair of tweezers to get a closer look at it and take a picture. Unfortunately, because they had been stored in ethanol and not formaldehyde, they would have been broken down too severely to be studied. However, the dentist hypothesised that the threads were probably uncalcified material that was periodically blocking my salivary glands. Through her, I got a referral to an oral surgeon, who had me do an x-ray and a CT scan.
However, like the initial ultrasound, all of the tests came back showing nothing wrong. In fact, the report from my CT scan explicitly stated that everything was normal, including my thyroid gland, my lymph nodes, and my salivary glands and ducts. The only thing of importance that my oral surgeon could show me was diffuse edematous swelling in the tissue around my jaw. He explained that if there was uncalcified matter in my gland, it would show up in an MRI, but because everything appeared normal, he didn’t think it was necessary to prescribe the test. Also, he noted, it was very unlikely for me to have stones in both glands, as both glands were affected.
So now I’m here – waiting to get tested for autoimmune disease to explain my continued swelling.
While I don’t know exactly what is wrong, I do understand now what is happening in my mouth. Some kind of material is coming up into my salivary ducts and blocking them intermittently. Due to the thick, stringy mucus that sometimes comes up, I have hypothesised that it must be especially sticky mucus that has become bound together. I imagine that the long stringy shape is caused by their journey through the duct.
When this matter moves into the duct, saliva backs up and causes swelling. The itching that I’ve been feeling is actually the sensation of the distension of the gland and the duct. While it has almost never been painful, I do sometimes feel a great deal of discomfort when the blockage moves into the narrow ducts. Through scratching – or more recently, stroking the gland – I can force the saliva out until enough pressure builds up in the duct to force out the blockage. Sometimes this can be difficult to do, and the duct becomes swollen and tender due as the obstruction stays put for hours.
Online, there are a number of home remedies for stimulating the duct, but as you will read in my next post, sometimes this might cause more problems than it’s worth. For now, I try to increase my water intake whenever I notice that the gland has been blocked, and that seems to help it to flush more easily.
In my next post, I’ll talk about the worst episode of swelling that I’ve had to date, the catalyst that inspired me to finally start this blog.
I am suffering from something, but I don’t know from what. Neither do any of my doctors.
While it doesn’t seem to be life-threatening, at times it can be pretty scary; and at other times, confusing, or just annoying.
My most obvious symptom is swelling under the jaw. Up until very recently, I had believed that this was a problem with my submandibular salivary glands. From time to time, they become clogged and swollen with saliva. In order to relieve the discomfort, I have to manually empty the glands by stroking them. This action produces spurts of salty-tasting saliva, thick, stringy mucus, and some sticky white threads. The threads are the strangest substance produced by my glands, as no dentist or doctor has been able to determine what they are.
For the last several months, I have undergone several tests to try to discern what was causing the blockage of my salivary glands. However, recent CT scans have shown that there is actually nothing wrong with the physiology of my glands, nor is there any stone or any other obstruction inside them. Instead, it showed that I had some edematous swelling around my jaw and cheeks.
Lost for any other ideas about what might be wrong with me, my oral surgeon has suggested that I begin seeing a rheumatologist in order to begin testing for autoimmune disease.
Now that my research and testing have taken a new turn, I have decided to document my illness, testing, and treatment on this blog. I have found a lot of unresolved discussion online about people suffering from swollen salivary glands that produce white strings – however, there doesn’t seem to be anything published by any medical institutions about it. Thus, this blog is my effort at adding to the online discourse, in order to help someone else who may be seeking treatment for the same illness. I have no idea where this journey will take me, and in time, this blog may change identity to reflect whatever diagnosis I (hopefully) receive.
In the meantime, I will begin my writing by documenting the previous progression of my sickness, as well as things I have learned along the way about relating to others about my illness.
Thank you for coming along on this journey with me. I hope that we’ll be able to discover a breakthrough together.
What's Wrong with My Body? 