A few days ago I was speaking to my friend who happens to have another friend with coeliac disease. Whilst we were cooking dinner together she noticed how careful I was being and how much attention I was paying to everything. I scrubbed every pot, pan, knife and spoon before we used them and checked the labels of each and every ingredient we were cooking with. All of this is normal practice for me.
Apparently her other coeliac friend isn’t nearly as cautious but not only that, she also sometimes ‘cheats’ and eats small amounts of gluten from time to time..KNOWINGLY!
I understand that accidents happen and the possibility of being glutenated is certainly a risk, especially when eating out, but I can’t imagine anyone who has been diagnosed with coeliac disease and who understands both the short term symptoms and long term consequences of eating gluten wanting to risk being careless.
Admittedly I have always been a little OCD and by nature can become very obsessive about things even when they aren’t extremely important, never mind when they are, so I can certainly understand why not everyone would be as cautious as myself. However, I still cannot understand why any coeliac would KNOWINGLY choose to eat something containing gluten!
I could perhaps even understand a situation arising when you couldn’t find
Lots of gluten free cereal
anything safe to eat and chose to risk something you weren’t certain about. I personally wouldn’t risk it but I can understand why others may. What I’m referring to though is a completely different story. It turns out that my friend’s friend eats (gluten containing) Rice Krispies from time to time and toasts her gluten free bread in the office toaster alongside normal glutenous bread. I am amazed by this! There are plenty of safe, gluten free cereals out there so why eat a cereal which is known to contain gluten? And why deliberately contaminate yourself with glutenous crumbs? It makes no sense at all! Can anyone understand this or are you amazed like me by the unnecessary sillyness?? Would you eat something you knew contained gluten just because?? I’d love to hear your opinions on this…
Mithat
Mar 10th, 2011I currently live in Istanbul and was diagnosed last summer on one of my semi-annual trips back home to the USA. At that time, I asked my GI specialist Dr. whether I had to go into OCD mode in my gluten avoidance, and she said said very emphatically that I did.
Sensitivity and awareness of celiacs isn’t very high in Istanbul, though it seems to be improving. But given the current state of things, this place begs you to be tempted. The range of labeled GF products here is very narrow, and it tends to be prohibitively expensive. Eating out is so far out of the question. I’ve spoken to enough high-end restaurants to understand that they have no understanding.
In spite of this, I have been meticulous in the care and feeding of my condition. Every single meal and snack I have eaten here I’ve prepared myself. Of course I scrutinize every label, and in addition I take care to rinse my rice and lentils just in case they were dusted with flour or wheat starch during packing. (Sadly, there’s not much I can do about the locally available corn and rice flour to eliminate contamination.) I don’t leave the house without a feed-bag. My cooking skills are improving as is my ability to invent tasty combinations from the same basic ingredients. Planning meals and cooking is now a central activity in my life, not an afterthought.
Last summer, my tissue transglutaminase clocked in at 100+. I was told that with a result that high it was possible that I would never have “normal” tissue transglutaminase no matter how much I avoided gluten. Last February, it was measured at 5–just above a weak positive. I got the sense that my Drs. weren’t expecting such a rapid bounce-back, but I suspect my meticulousness has something to do with it.
I’ve been training those around me that having celicas is a lifestyle, not a lifestyle adjustment. Sure, I miss my old life–but I don’t want to end up despising this one by inflicting more damage on it than I need to.
Sofia Morais
Mar 10th, 2011Hey! Here I am, your favourite reader 🙂
Yes, I think it’s silly and I can hardly believe it’s true. Maybe your friend isn’t telling the real version of the facts. Are you sure the girl is coeliac and not just gluten sensitive?
Despite the fact I am hypochondriac and obsessed with details :O), I don’t think I am as cautious as you are. I don’t share my kitchen, so I don’t need to worry about cross contamination at home. However, whenever I visit my mom I rarely check for crumbles on the dishes/pans she uses. Do you think this is risky? I don’t want to become more picky than what I am now!
Laura
Mar 16th, 2011@Mithat How interesting. I agree that celiac is a lifestyle and not only an adjustment. You explain that you are OCD and very meticulous where you diet is concerned and I am the same way. It’s great to hear that your results improved by such an extent. This clearly shows that the care you take of yourself has been worth it 🙂
@favourite reader, I 100% agree that it’s silly. I can hardly believe it’s true either and whilst my friend appears to be sure that her friend is coeliac, I hope she is mistaken!
Like you at home I don’t need to worry. When I eat at family/friends homes I tend to give anything they are using to cook for me a rinse just to be safe. A lot of the time I’m probably being more cautious than I have to be but it makes me feel better so for me it’s worth it 🙂
Mithat
Mar 17th, 2011@Laura Just to be clear, I ‘m not OCD in any area of my life except (now) my diet–and it has been a tough adjustment. I get the feeling that some people think I am needlessly exaggerating the situation and that maybe some even think my illness is mental in nature. If I were more socially oriented than I am, this would create even more pressure to “cheat”.
I wonder how prevalent similar attitudes are in other parts of the world (or groups of friends) and how much they affect celiacs. In other words, I am wondering if our biggest problem is actually social in nature. Of all the places you’ve been, where has it been easiest socially to be a celiac?
Laura
Mar 17th, 2011@Mithat, I understand. Personally I am OCD in some other areas of my life too. I have very strong focus which can be positive or negative depending on what I focus my mind on. With celiac I think it’s positive because it means I’m always super careful and don’t make mistakes and risk being glutenated.
I too sometimes feel that some people think I am over exaggerating the importance of being so strict and certainly where cross contamination is concerned but generally it’s people who aren’t fully aware of what having celiac disease really means. Most of my family and friends are just as scared about contaminating me as I am which means lots of caution is taken 🙂
Buenos Aires was probably the easiest place to socially be a celiac for a number of reasons. There were lots of different places at which to eat out, 100% gluten free bakeries and various stores called dieteticas which stocked lots and lots of different gluten free foods. They had a labelling law passed in Dec 09 which hadn’t yet been completely followed but still many gluten free products in supermarkets are labelled as “suitable for celiacs”. Most people I spoke to were familiar with what celiac disease is and I even saw public service announcements on televisions in the subway. The rest of the country is not as celiac aware but Buenos Aires is great for celiacs..and beautiful too!