Tuesday, April 2, 2013

When I get glutened

On Good Friday, at the Royal Children's Hospital Easter Appeal fair with my family, I ate some chips from the Nando's outlet at Etihad Stadium (in Melbourne).

I ate the chips because I was hungry, and because I have eaten Nando's chips before and never gotten sick from them. Nando's doesn't have any fried products that contain gluten, so, theoretically, the chips should be fine.

Except they weren't. Whether by crumb contamination or from some other cause, my chips had enough gluten on them (and it really only has to be a small amount) to set off my immune reaction.

I am a Coeliac. Coeliac Disease is an auto immune disorder, which is co-mordid with a range of other auto-immunes, some of which I also have. A friend and I were joking just yesterday that it's like a really sucky game of pick up sticks, having auto immune problems - she, a sufferer of Crohn's, has a few hanger-on immune problems like I do, and our collective array of medicaments and management strategies is simultaneously impressive and depressing.

So anyway, being Coeliac, when I eat gluten, here is what happens to me. (Everyone's reaction differs; that's why it can be so hard to diagnose).

- Within an hour, I start to feel nauseous. I rarely actually throw up, but the strong sicky feeling will hang around for 1-3 days without respite.
- Within three hours, I have bad abdominal pain and cramping. This is usually only a 2-5 hour phase, ending when it is succeeded by
- *Ahem*. The toilet part. Without being too explicit, I then spend 1-2 hours glued to the porcelain god as the first wave of reaction passes through.

I'm sort of lucky among my kind in that my gut upsets are usually all done within 12 hours. But that's not it; next we move on to Wave 2.

- The day after glutening, I wake with a kingpin headache, the kind that Panadol does not touch. This will last anywhere from 1-5 days depending on how much the universe hates me. This time, it was only 2 days, so that was a mercy.
- Late on this day, or sometimes the day after, I become aware of joint aches. They can be mild or severe. (This time - severe).
- It's also on this day that extreme fatigue sets in. As in, narcoplepsy-type random falling asleep, zero energy to do anything, and unrestful rest. This will peak on day 3 but I won't be back to normal energy for at least a week.
- My ability to concentrate on anything is shot six ways to Sunday. I find it hard to maintain linear thought, and harder yet to write. This is worst on days 2 and 3 post-glutening, and I am usually rediscovering a brain cell or two by day 5. (Which happens to be today).

I'm writing this today because I am tired of being asked why I insist on gluten free food, why I won't eat food I'm not confident about,  and why I now decline restaurant invitations if the venue cannot cater safely for me.

I'm writing this to hopefully explain that when I say, "It needs to be gluten free", well, IT ACTUALLY NEEDS TO BE GLUTEN FREE. I am not willing to sacrifice a week of my life just to avoid someone else's momentary inconvenience or social discomfort with my "pickiness".

I'm writing this because it is not fair or reasonable to ask me, or anyone else, to attend a food based function if my dietary needs cannot be met. No, it's not OK for me to "just eat before I come" (Yes, I have had people suggest this) or "just take a punt" (NO.) I do not want to sit watching other people eat while I sip my water. I refuse to risk being made sick because it's too much trouble to make my food safe.

This glutening was my own doing, sort of (I ordered the food, I trusted it based on past experiences, I ate it. These things happen). But I have been caught multiple times in the past by other people's lack of concern or lack of interest, and you know what, bugger that. If this makes me a bad guest, so be it. I'm not doing it anymore. The sequelae of being glutened is just too revolting.


  1. Thank you for sharing this. It sounds absolutely terrible. I think that is not nearly enough discussion about these illnesses, especially given their growing trends.

    Fairy wishes and butterfly kisses lovely

  2. Oh my goodness, this is awful - of course you should not eat gluten - how dare anyone even suggest otherwise?? People's inability to understand these things makes my mind boggle - my son has severe allergies and I was once told by someone - that he should eat it (her food) because it was home made and that the allergies are only for commercial food - I wanted to thump her! Their inconvenience is insulting isn't it?
    Hope you feel better soon xx
    Josefa from #teamIBOT

  3. It's totally fair for you to insist on being able to eat food that suits you. I agree - a week spent in pain and discomfort is completely unfair.

  4. That sounds downright miserable. :( How long have you known about it? It really makes me wonder about what we put in our mouths these days! Not just people who have known problems, but all of us. I can only just begin to imagine how hard it must be, especially in social situations. -Aroha (#teamIBOT)

  5. I never understood the importance of gluten free until we realised that my son had a wheat intolerance. Obviously not as severe as your condition, but considering he's only just turned 3, the difference we've noticed since eliminating wheat is AMAZING. So now I take people far more seriously when they tell me then need gluten free options!

  6. I commented and looked away and then the box was empty again. Did I publish? lol.
    What I was saying was that I never understood the importance of gluten free until we discovered our son had a wheat intolerance. Not quite as severe as your situation, but the difference in him since we eliminated wheat is AMAZING. So now I have a new found respect for gluten free requirements!