It is a very brave thing to write about your life as it unfolds. You are bearing your very soul, knowing that people are reading it contemporaneously with your days that are unfolding. The future is uncertain, the present may be messy and, as we all know, the path may change course when you least expect it.
As a blogger, you may get personal email responses from friends with probing questions when they see your recent posts, and you harbor very real concerns about how clients or colleagues may react or readers may judge you based on what you have written. You need to build up a thick skin and learn not to be stressed about what people may think.
Funny enough, having celiac disease has given me those qualities in spades. Every time I am invited to lunch by someone new and need to recite my shortlist of “likely but not 100% sure to be safe” restaurants, I am putting myself out there. Every time I need decline a dinner invitation, or pack my own food to bring and eat “out,” I am revealing more personal information than I would wish. Every time I fight back tears that something I am missing (forever) that others take for granted, and try to smile through it, knowing that my poker face needs more practice, I realize how my life has become something else, smaller and greater at the same time. Yes, writing about it publicly is doing it on a larger stage, but it is the same exercise I carry on in my own home and neighborhood.
Just having celiac disease and taking the steps one needs to stay healthy, I have come to realize, is an inherently defiant act. I don’t invite the defiance, yet I am defiant in the same way that any other group in human history has needed to stand up for itself just to have basic human rights. Every day, I defy the status quo. I dare ask for what I need, and I fully expect to get it.
Just having celiac disease and taking the steps one needs to stay healthy, I have come to realize, is an inherently defiant act…. Every day, I defy the status quo. I dare ask for what I need, and I fully expect to get it.
When I first started a blog, I didn’t actually know if anyone would read it. Now, after years of writing about celiac disease and some time being away from it, I know how important my message is, and how many people I can help by being open and honest. There are a lot of words spilled about celiac and other chronic diseases. Monetary incentives, false motives and deliberate misinformation. And then there are those of us just trying to get along, not wishing to be activists, but realizing that our greatest contributions to the world just may be our willingness to share what we have learned.
So I choose again to write and take the risks that may come. The rewards are greater.
On to my garlic powder story….
I have a house that is mostly gluten free, except that my teenage son who is a growing boy and budding chef has some gluten products he still likes to eat. It has been the source of some debate in our home about how much gluten to allow in. Since my son has been making garlic bread, one day someone bought him his “own” garlic powder and put it in the cabinet.
It was not specifically marked on the label as gluten free – or for exclusive use by my son – but the ingredient list did not contain gluten, wheat, barley, rye or malt (all words that indicate gluten is present). I probably would have replaced it if I had known it was there, but I didn’t even see it among the rest of the many spices we have.
At the time, a few months ago, we had someone cooking dinner for us many nights with ingredients from our home. And on random, multiple occasions, I would get sick. As we went through what she used to create each dish, trying to find the culprit for my ailments, it never surfaced that this very garlic powder was the common thread. If you have never lived with a chronic disease, you have no idea how debilitating it can be. Your muscles can ache, you can get depressed and you can feel a bit hung over whether or not you’ve had a drop of alcohol. And these are only some of the symptoms. So I was not always in the right frame of mind to do the type of investigatory work one might expect to try to track this down.
Anyway, one day as I was visiting someone else’s home, I reached to borrow garlic powder – as I was cooking for myself there – and I noticed it said that “may contain traces of wheat,” so I didn’t use it. When I got home, an alarm went off in my brain, and I took a look at my own spice cabinet. I found the garlic powder I mentioned a few paragraphs above.
I realized they were both made in China, and although China is obviously a huge country, they could have very easily been from a factory with similar manufacturing standards, with the only difference being the labeling. They could have made it through U.S. customs without anyone doing testing for whether wheat or gluten was actually present. They could get on the grocery store shelves, into my cabinet and into my immune system. And, it became clear, they had.
They could have easily made it through U.S. customs without anyone doing testing for whether wheat or gluten was actually present.
The proof is in the pudding, as they say. When I eliminated the garlic powder from my diet, I started to feel a lot better. I made no other changes, so it is clear to me that this was my hidden nemesis. I have realized after years of living with celiac disease that anecdotal evidence is sometimes all I will ever have, short of testing every product in my home or seeing a specialist as often as I sneeze.
I share this today in case you are living with celiac or another condition that requires an elimination of gluten, and it is helpful to you. Or if you are throwing a dinner party for someone else, and you are struggling to understand he/she seems so “paranoid” about the sourcing of ingredients. Trust me, it’s a healthy paranoia. An appropriate level of paranoia, as I have come to call it.
My story here will be told in bits and pieces, and at some later date I will give more background about the details around gluten free labeling and some suggestions for where to get safe spices in the U.S. (as I have since done my research more carefully). Come back or subscribe for more.