By default, my assumption about food has been that I can eat it. I would rarely check the full list of ingredients – with a few minor exceptions. This is, perhaps, one of those “lifestyle” changes that needs to be made with a celiac diagnosis.
Since I’ve been travelling in the UK this last week, I’ve learned to do the opposite. This became very clear during the lunches at both conferences. In both cases, the issue was that the meals were served buffet style. In both cases things were not labelled. Unfortunately, since gluten sneaks into a lot of things (e.g. an incredibly large variety of potato chips have gluten), the default assumption needs to be that the item includes gluten unless it is specifically labelled as gluten free.
I’ve found that when travelling, I’m relying a lot more on processed foods. If it comes sealed in a package that says “gluten free” then I know I can trust it. For the most part, I can trust homemade meals. However, restaurants pose a challenge. If they are good restaurants, then they understand – and things are free from contamination. However, if they are not accustomed to dietary requirements then there is much more risk of exposure.
My message to conference organizers is that if people are travelling from out of town to attend, and they declare a serious allergy, then you should make an effort to ensure they have food they can eat (and snacks). The first conference failed at lunch, but when I inquired about snacks someone went and got me something that I could eat (I’m eatin a lot of macaroons). The second conference didn’t do so well. Not only did I not get food for snacks, I also didn’t get lunch. There might have been something delivered that I could eat, but because nothing was labelled, I didn’t know. Everything was highly suspect (sandwiches were a definite no, soup could have noodles, thickener or barley, and chicken tenders might have wheat breadcrumbs or be fried in a frier that had traces of wheat in it).
When travelling, and especially when travelling internationally, this poses an extra challenge. I am still learning about what food I can and cannot eat. Labelling differs by country, which also makes it challenging. I’m still learning how to make adaptations – and how to effectively pack my own lunch when I’m on the road. I cannot simply just grab something at the corner store. Often I cannot even just grab something at the grocery store. I need to figure all this out. It is less challenging when I’m at home.
I am finding that I’m eating a lot more fruit. In part this is because whole fruit is something that often appears at the dessert table at buffets, and I can guarantee that it hasn’t been cross contaminated.
In Manchester, I found some good organic yogurt at one of the corner stores. I found that yogurt and fruit was a good lunch. Interestingly, I would not have found that before. Before, I would not have found it to be filling, but now I do. It is very interesting to see how my taste buds and the way my body feels is changing.
When I get home I’m going to have to explore yogurts. I’m going to have to see if I can find a brand that is organic, packs well, that I like, and that I can digest without the need for a lactose pill. I’m crossing my fingers that I can find this magic combination.
I also need to discuss with the GI doc blood tests for various nutritional deficiencies. I already know that I’m anemic (a common celiac side effect). I just don’t know what other nutritional deficiencies I have – so I don’t know what things I need to look for in my diet or what things I should be thinking about supplementing.
Another one of the “lifestyle” changes relates to how I cope with eating out – especially, I how I cope in social settings. It is one thing for me to research a restaurant and make a deliberate choice about where I get my dinner. It is a whole other thing when I’m visiting friends and we decide to go out to dinner, or when I’m staying with friends and we go out for a meal. It is a struggle to stay strong, and stick to my guns – to not cheat. Funny, but I am not tempted (at least not yet) to cheat on things that I used to like (e.g. chocolate fudge cake). I can usually convince myself that wheat is poison, so I can either forgo or choose differently. However, it is really hard to do this when I am part of a larger group (either in a professional setting or with a group of friends). I find myself thinking – It isn’t such a big deal, I could eat a little bit, a little won’t hurt me …
For some people, even a little is bad. For me, I don’t know yet. I don’t know how sensitive I’ll be after I’ve been off gluten for a longer period of time. But I also know that the longer term effects of celiac disease are not well known. I do know that the longer term effects CAN be a lot worse than just a little stomach upset … they can be severe (e.g. non-hodgkin lymphoma, brain damage). It isn’t just a temporary stomach ache with some bloating. Those would be the acute symptoms that are well known – it is the longer term ones that are much more scary, and also what makes me want to never cheat.
And so, the lifestyle change I need to make is that of changing my default setting. By default, I cannot eat a given food, especially a prepared meal. By default, I need to assume that it is poison for my body. So, if you are planning something, and someone with celiac is attending, please make an effort to label anything that is safe – because otherwise, we have to assume that it is not.