I am starting to dread the SCC (Standard Coeliac Conversation) that happens at most social gatherings. No matter how much you might not want to talk about it, it invariably comes up whenever you refuse a repeatedly offered “desirable” food item (pizza, cookie, birthday cake).
Person: Want a piece?
Me: No thanks
Person: Oh go on!
Me: No thanks, really, I’m good.
Person: *offers to everyone else then returns to me*
Me: No thanks, I can’t eat that.
Person: You CAN’T eat it?
Me: *sighs* (Quickly decides whether or not it’s worth starting THAT conversation)
If you decide to talk with a stranger at a party about coeliac disease, you can guarantee that one of the two questions will come up:
1) “So what happens when you eat gluten?”
2) “So how sensitive are you?”
The first is sort-of-but-not-really a silly question and depending on the situation my answers can get quite dramatic, in the hopes that they will at least never ask that question again to a stranger. I have been known to use the phrase “waves of diarrhoea” when someone is not satisfied by my original answer of “gastrointestinal problems”, as if ingesting something that your body views as a foreign invader could ever result in anything BUT vomiting/nausea/diarrhoea.
The second question always baffles me somewhat, because I never know how to answer it. I have always known in theory that coeliacs could react to the slightest crumb, so I have been as careful as I can, especially after I was apparently glutened by pizza dust on a “gluten-free” pizza at Hell Pizza (since closed down, nothing to do with me, promise!).
Since us coeliacs tend to have very sensitive tummies anyway, it is always difficult, if not impossible, to know whether you have been glutened or whether you are just reacting a bit strangely to something you ate. That is, until last night when I got glutened by a glass.
Bars in Holland seem to have a relaxed attitude to washing their beer glasses, but normally soft drinks are served in slightly different glasses so it’s generally ok. I didn’t even think about this until I was two iced teas down and starting to experience “whirlwinds of gas” in my gut. Strange, I thought, and went up to order my third. I saw the woman behind the bar “wash” my glass in what can only be described as a hotbed of potential cross-contamination. I realised too late what had happened and drank my next drink straight from the bottle, while trying to surreptitiously conceal the sounds my gut was making.
By the time I got home I had a poorly stomach but thought to myself that such a small quantity can’t have any real effect beyond that can it? Well when my alarm went off I could barely open my eyes. I had intended to deliver some leftover food to my friend who lives down the street before 8am, but I found myself cancelling, drowning in fatigue. I slept in until 10:30 which is practically unheard of for a morning person like myself.
So to answer your question “Just how sensitive are you?”, I appear to be very sensitive. I am so sensitive that cross contamination from a badly washed beer glass caused me intense pain that night, and the next day I am fatigued, nauseous, sensitive to touch, and rather headachey. It annoys me because it sounds like I’m making it up, it sounds like I’m exaggerating. It also annoys me because I purposely didn’t drink in order to avoid a hangover, and now I have all the symptoms anyway. People can’t quite grasp that something they mindlessly consume many times a day can result in such a bad reaction from such a small amount.
I’m so sorry you were so poorly. And you’re right about how easy CC can be, at least in my case as well. I’ve suffered in the past from having a glass of coke that came out of the nozzle rather than the bottle. I presume it was because people have lager shandy and they dip the nozzle right into the drink? Anyway, it can be frustrating feeling forced to describe in exactly what way you suffer and how sensitive you are. People don’t really respect privacy any more – it isn’t dramatic enough. It’ll be a few days, I know, but I really hope you’re feeling better soon.
Thanks Vikki, it means a lot. It’s been 5 days now and I mostly feel better, just sort of fatigued and a bit down. Still symptoms or just Monday morning? Who knows.
Good to know!! I normally order wine at bars, so less of an issue of mixed-use glass, but it is never something I considered. I think my worst yes-I’m-really-that-sensitive moment was a couple of years ago when my s.o. kissed me on New Year’s after forgetting that the last thing he drink was a beer, and I spent the next couple of days woozy and in GI distress…
Happy gluten-free holidays,
Another-celiac-named-Samantha-living-in-the-randstad
Yes, getting kissed by gluten-mouth is the worst! Happy gluten-free holidays! 🙂
Hello The Happy Coeliac,
Oh my goodness, I am so sorry to hear you went through this. Again. What a pain, in both ways.
I have recently had a ridiculous conversation with a family member (who accidentally bought wheaty food on two occasions) who believes strongly that wheat and gluten sensitivity was literally unheard of ‘back in the day’, so I casually dropped in that I haven’t fallen unconscious due to wheat for a few years now.. 😀
I am always being asked what happens and whether I would die from it and what’s the worst reaction I’ve ever had. As you say, it varies. It hurts. No, it causes excruciating agony which, on top of a chronic (and very painful) spinal injury, has you lying on your side, curled up like a damaged beetle.
I send a frustrated growl in your direction for you to use in conjunction with your replies to the same… old… questions…
Wheat Free Franco, possibly Coeliac Franco judging by the recent four day firework display within my abdomen.
Oh, I totally know what you’re talking about! They just don’t get it and I get so tired of trying to explain over and over. I recently found this open letter to gluten-eating people written by a person eating gluten-free and I’m sending it to just about everyone I know because this is exactly how I feel all the time. http://vitalbalanced.com/a-letter-from-a-gluten-free-dieter-to-gluten-eating-friends-and-family/
Thanks for inspiring us all and sharing so openly. It’s not easy to be gluten-free in a gluten-eating world!
Happy Coeliac, thank you for your blog.
I found it while Googling for good German food recommendations whilst travelling to Munich on a three-week assignment for work.
As to this posting, the most annoying thing I hear is, “can’t you just scrape it off?”
After about the 500th time arguing the “Why not?” ‘s, it occurred to me to answer “Would you ever tell someone with a nut allergy to pick the peanuts out of a Snickers Bar?” That seems to get the point across with clarity.
Hi Happy Coeliac,
Just wanted to let you know that I also react very, very strongly to CC, and I have exerienced several times that mugs/glasses in cafes were full of little dry gluten crumbs after having been “washed” in what appeared to be a gluten soup … it is really hard to explain to non-coeliacs just how sensitive we are.
Have a good Sunday,
Nana
Wow! Thank you for explaining how serious Coeliac can be. I come from a different view point. With my allergies and my son’s, once we take Benadryl and wash the contact area (if it gets on our skin) the main danger is over. We still keep an eye out for later reactions, but major part of the insult to our immune system is over.
I never understood how Coeliac was different. Now I do.
I have had similar problems with people not believing how extreme my son’s allergies are which usually means he had an anaphylactic reaction before they take more serious precautions.
My son has what I call exciting allergies, like he spilled a cup of cow’s milk down his front at two years old and we are going to the emergency room kind of exciting. (Grandma and Grandpa’s house) Thankfully as he grew older, he learned how to avoid coming in contact and the people around him learned how to help him avoid it. (First week of kindergarten a kid sitting next to him at lunch spilled milk on my son, and I was called in. He was moved to a milk-free table after that. I guess the people at the school didn’t believe me before that)
Also fortunately his allergies have calmed down over the years. His skin still reacts to contact with milk proteins but he also hasn’t has as large of exposures as he has in the past. And if he ingests food with milk products it is usually a small amount and Benadryl and rinsing out his mouth usually is enough. Coeliac takes allergies to a new level or a different level.
Again, thank you for explaining what I didn’t understand completely