BC Becky

Never thought I'd want to be a breast cancer survivor

Tag: celiac

  • I almost didn’t go …

    I almost didn’t go …

    My proposal for a paper presentation at the Health Humanities Consortium Conference in Houston in March was accepted. When I was first accepted I was really excited about it. Then the plane tickets cost a little more than I’d like. I found myself doubting – do I really want to go? I found myself justifying all the reasons why I might not go.

    It was the celiac talking. It was me trying to avoid going out because the food might make me sick. I was deciding not to go because of fear – not for any really good reason.

    Yes, I’m nervous about the travel – air travel makes me anxious. I used to love it, now I worry that I’ll starve, and end up packing so much food that all I do is eat my way through the flight.

    I worry that I’ll be hungry during the conference. I even asked the conference organizer about food – which they haven’t planned yet. I got an awesome reply. They said they’d try – I cannot really ask for more.

    Once I realized the reason my waffling was fear talking, I decided to push through. I booked my flights, hotel, and registered for the conference. I’m committed now.

    I haven’t been sick since July. That is six months without accidentally consuming gluten. My blood anti-body levels are back to normal. From a celiac perspective, I am healthy.

    I have also tried to get past my fears on a local level. The other day I went out for fish tacos at my favourite local taco place. I only had one thing – fish tacos. I figured that if I tried anything else and got sick I wouldn’t know what made me sick. Next time I’ll try the carnitas (pulled pork) tacos. If I get sick then I know I need to stick to fish. I find that I need to take this one step at a time.

    I’ve also learned that if I’m going to branch out and try something – I might as well try a lot of it and really enjoy it. You see – if something is going to make me sick it doesn’t matter how much I eat. The level of sickness I experience is no different between a quarter teaspoon of flour and two cups of flour, so if something is going to make me sick I might as well get the most of it and really enjoy it – as it will likely be the last time I try it.

    Of course, now that I’ve decided to go the conference, I need to figure out my presentation. I’m working on my research now. I won’t get a huge amount of time to talk – so my presentation will need to be short and focused. I realize now that my past presentations have been a bit scattered – they have included snippets that were not relevant to the message – they may have been relevant to me personally, but they were not relevant to the overall storyline or the message I was trying to send. So now, I’m trying to figure out – what will be the theme for my short presentation?

    Feature image CC0 via Pexels.

  • Hidden sources of gluten

    On Tuesday we had our official meeting with the dietician about celiac disease. The meeting itself wasn’t particularly insightful – but we went into it well informed to begin with. I didn’t really know what to expect. The dietician was friendly and she did ask us some questions and told us a few things. In the end, we left with a three page handout with the most important information. In addition, now that we’ve met, I can email her with questions at any time.

    Looks at this experience as an educator, and reflect, I see that she did some things really well. Instead of giving us an handout with an overwhelming amount of information, she cut it down to a concise three page handout with the most important information. The information included some general guidelines for gluten free eating, a short list of what to eat, what to avoid, and hidden sources of gluten, some quick meal ideas, and three good websites for more information: Celiac Disease Foundation, Celiac Support Association, and Gluten Intolerance Group. I was aware of the first, but not the other two.

    I keep thinking that I should be getting more information. I keep thinking that this should be a bigger deal. But in reality, it is pretty simple. I have an auto immune disease that is completely treatable by maintaining a gluten free diet. The challenge is figuring out all the hidden sources of gluten.

    Last night I started going through my medications. I called my pharmacy to have them add “gluten” as an allergy. I was impressed when the Express Scripts pharmacist says that now that it is listed they will check all generics before sending them to me. For all the meds I already have, he gave me the phone numbers for the companies. This morning I started making calls. Sadly, the melatonin I use from Costco is not considered gluten free. Fortunately, I’ve found the CVS brand melatonin is. The meds I’ve checked so far are OK, but I have a few more companies to call. Hopefully by the end of Friday I will have checked all my meds.

    Ironically, Tuesday just before the going to see the dietician I got glutened (in the celiac community, the verb ‘to be glutened’ means to have accidentally ingested some form of gluten). I asked my husband to grab a smoothly for me at the office. He grabbed one for each of us and allowed me to choose. I looked at the ingredients – one had ‘wheat grass’ so opted to not have that one. Neither were labelled gluten free. I thought that I had chosen the safe one. It had fewer ingredients and none that looked suspicious to me. I learned from the dietician that one of the ‘hidden’ sources of gluten is in “artificial flavor” and “natural flavor”. Upon returning to the car we learned that “natural flavor” was an ingredient. I can confirm (based upon my bodies reaction) that indeed the smoothy was NOT gluten free. Live and learn.

    On the list of hidden sources of gluten that surprised me:

    • brewers yeast
    • triticale
    • malt

    I noticed the little gem about “artificial flavor” and “natural flavor” are not on the list from the dietician. She also promised a list of bad ingredient in medications and supplements – which I don’t have appear to have. Good that I can just send her a message on the my Health (secure email) system.

    In addition, the dietician mentioned that “starch” when listed as an ingredient is suspect unless you know the source of the starch or the food item is listed as gluten-free. So, potato starch or corn starch are OK, but starch or vegetable starch is not. I’m also in the process of going through any powders that I consume – such as electrolyte drink. I’m going to have to change from my previous favorite to the Vega brand, which is labeled as gluten free.

    NaBloPoMo November 2015

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