Tag: celiac disease

Going gluten-free

maladieLeave a comment

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.

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.