Since my celiac diagnosis, I’ve been totally stressed out about travel. I love to travel. One of the things I love most about going to new places is trying out the different regional cuisines. However, with celiac disease that is really difficult. Any amount of gluten in the food makes me sick. What some people with celiac do is bring their own food or make food for themselves. I get that, but I also would feel like I was missing out so much. I want to be able to enjoy the experience of being in a place without having to fear that I’m going to get sick.
Over the last four months I’ve done rather well on a gluten free diet. My anti-body levels (which is how they measure whether or not you are being exposed) are now down to almost normal. I see this mostly in my skin symptoms (dermatitis herpetiformis) which have almost completely gone.
At my last follow up appointment with my GI doc, I asked her about this study drug which is hopefully coming on the market by 2018. Her response was encouraging. Although it isn’t a cure or a magic pill that can be taken to allow indiscriminate gluten exposure, it will help for those times when it is unavoidable or very difficult. The drug (larazotide acetate) is about to go into a phase 3 trial (http://www.innovatebiopharma.com/inn-202.html). The initial publication of the results is here: http://www.gastrojournal.org/article/S0016-5085(15)00199-7/abstract. It isn’t like a lactase pill for diary exposure – which you can take anytime. It is more something that you would take occasionally if you were accidentally exposed to gluten. Since it blocks a protein, my guess is that long term repeated use would lead to some form of malnutrition. But for those occasional times, like when you are on vacation or need to travel, the freedom to be able to not stress about food is huge. I would sign up for the trial except that I’m not willing to intentionally expose myself to gluten for the purposes of the study. I’ve seen the adverse affects of gluten exposure in my family, and I’m not willing to do intentional harm for the sake of a drug trial. However, I’m glad that others are willing to give it a try. I’m looking forward to when the drug comes to market.
Personally, I’d still chose to avoid gluten. I know that for me it is poison. That is what I think of every time I see bread, cake, etc. However, it also causes me to get a little anxious in social settings – and especially at events with communal meals. For example, at one place the food (except the bread) was all gluten free. However, they put the bread basket behind the salad. This meant that every time someone grabbed a piece of bread, crumbs would fall on the salad. I had to point out that they needed to position things to avoid this. It is this level of stress that I just don’t need. To be able to not worry about it with every single meal when I’m not feeding myself would be a huge relief.