The not so fun part of living with celiac disease

Passing out on the grass from exhaustion while walking around Quebec City after getting 'glutened'.

Passing out on the grass from exhaustion while walking around Quebec City after getting ‘glutened’.

I have been sick all week. I have a mouth full of canker sores. I am exhausted. I feel like my stomach is a toxic dump. And I am up most nights in the washroom. I have hit my low. I try incredibly hard to be positive about having celiac disease but weeks like this really bring me down. I love traveling and eating out but eating out while traveling is what made me so sick and there is very little those of us with celiac can do about it.

Option 1: Travel and eat out and take chances.

Option 2: Stay home, eat safe and have FOMO (Fear Of Missing Out).

Option 3: Balance of option 1 and 2.

I try my best with option 3 but it is hard adjusting no matter how long it has been (over 10 years since diagnosis and 8 years eating strictly gluten-free). This is a bit of a rant but I think I should also represent the reality of celiac disease sometimes. Having celiac disease sucks and while I will continue to be positive about it the majority of the time and share recipes and gluten-free tips for eating out I will take moments here and there to recognize the pain and frustration. It is not fun to be sick for a week and not feel right for a week later. It sucks to miss out on birthdays and dinners to stay home being ill. It is not fun to spend vacation in serious pain. It’s even more stressful to be the person who cancels work meetings at the last minute because they can’t leave the washroom. It all sucks. Rant done.

Hope everyone is taking care of their diets and feeling well. I tend to take my health for granted until I get a bad exposure and I am reminded why I have to be so careful.

Any tips on what helps you when you have been glutened?

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8 thoughts on “The not so fun part of living with celiac disease

  1. ashleyfitzpatrick says:

    I feel yea! I’ve had Celiac for about 5 years and I definitely struggle with wanting to travel more but not wanting to be sick the whole trip. Nothing but drinking lots of water seems to help me.

  2. The Sociable Celiac says:

    This post is the reason I started my blog. I needed an outlet to show that when I have bad days that there were good days that came before and there will be good days when I get better. I have my few favorite go to foods (like cheese) that I can always depend on when I feel sad. I hope you feel better soon!! We are a community and must stick together is times of food depression (what I call my celiac induced sadness).

    • Kris says:

      Thanks! Celiac induced sadness is a great way to describe of the brain fog and depression associated with a bad poisoning. Always helps to be reminded that others share our experiences, both the good and the bad πŸ™‚

  3. Paige says:

    It’s such a tough balance! And irritates me beyond belief when people say “can’t you just try it? Maybe it won’t have any gluten?” I’ve had to pack for myself many times and sometimes ended up hungry because I’m worried about getting sick on an airplane again (got glutened by cross contamination once on a 4 hour flight and spent entire time in the bathroom. Zofran did not help at all. Worst experience). With a long distance boyfriend across the country, 8 hour travel days happen every other month for me now. Posts like yours make me feel not so alone. Thank you for sharing! It’s gotten easier for me with the fantastic celiac community recommending places and my increased familiarity with pretty much all of the major airports on the east coast (and a few on the west).

    My post glutening go to is ice cream. I get food poisoning symptoms with gluten so my stomach feels very acidic and off for days. Ice cream coats it somehow.

    I look forward to hearing about your gluten free travels and all the amazing gluten free places (and not so amazing ones too).

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