Category: Updates

My gland finally emptied

maladieLeave a comment

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.

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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.

 

Why I think I might have Celiac Disease

maladieLeave a comment

Update, because I didn’t die last night.

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).

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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.

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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.

Another bad episode of swelling

maladieLeave a comment

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.