I live a life in fear. Fear that the person serving me food will unintentionally be handing me a plate of poison. Fear that the grocery store clerk was handling a bread sandwich just before bagging my groceries, and neglected to wash his hands. Fear that the plate my friend served me food on has had bread on it. Fear that the kitchen I am working in has flour in the air which will settle in my hair and on my clothes causing me to become contaminated for days. Fear that a loved one or friend will hand me a piece of food saying, “I made it gluten-free for you” with the look of sincere love that breaks my heart, because I have to quiz them about what ingredients were used, how the food was prepared and possibly decide that it is not, in fact, safe for me to eat. Fear that the next bite will cause me to be in physical, emotional and psychological pain for the next 2 weeks. And this fear causes isolation.
I always want to present the best face. I want to be positive, a role model to look to, an example of how wonderful life can be when one lives a gluten-free life. Because it is a wonderful life, free from pain, hurt, and psychological issues. But there is another side to this face. The other side is the one that has fear before every meal that is not within my control. The underlying concern that I will get cross-contamination, or actual contamination from gluten, because this causes hurt, pain, and psychological issues. It is a life lived in fear. I am constantly afraid that the food I will be served by the waitress, or my friend, or my family, or that I bought which says “gluten-free” but is not certified, will have some gluten in it and cause me to be sick.
Here is the real issue: many thousands of people are somewhat sensitive to gluten. Thousands more are sensitive to minute amounts of gluten, amounts so small that the single visible crumb you see from a piece of bread can cause pain and agony for days, or in my case, weeks. Although that speck of gluten doesn’t cause anaphylaxis (a life-threatening, sudden closing of the airways) it does cause: gas, bloating, constipation, diarrhea, stomach cramps, muscle fatigue, tiredness, crankiness, sensitivity to light and sound, depression, sadness, difficulty with vision and hundreds of other symptoms. (There are 625 documented symptoms that can occur due to gluten intolerance, some are listed here: http://glutenfreeworks.com/gluten-disorders/celiac-disease/symptom-guide/#.UN5VX7Y1bQw) Additionally, many people who have some sort of sensitivity to gluten also have some other health issue(s) that is exacerbated by any exposure to gluten. Not only does this make them more sick, it means that health is that much harder to regain.
Some people tell me I shouldn’t go out to eat at a restaurant or friends house if the problem is that severe. I have one challenge to those people: You try for 30 days to live a normal life, go out with friends, socialize, go to restaurants and bars like normal, only don’t ever eat anything that you didn’t prepare with your own two hands. That will give you a small peak into what my life is like. So when I have the opportunity, I do like to go out to a restaurant once or twice a month, and if the restaurant advertises serving “gluten-free” meals, I need to be able to trust that.
I am glad I have extreme gluten intolerance, I am so luck to know exactly what I need to feel healthy and be happy. There is almost no other illness or disease like it on the planet, where a strict adherence to a diet means no pills, no injections, no illness and no pain. What it requires from me, however, can be more difficult, I have to have an iron will and vigilance to make sure I avoid any level of contamination with gluten. This has become easier because of more places testing and being certified gluten-free (by companies like the Gluten Intolerance Group), and more difficult by the thousands of food manufacturers and restaurants that advertise “gluten-free” but have no education and pay no attention to direct or cross contamination of food. The United States of America is one of the last industrialized nations to NOT have any regulation in place regarding gluten testing and labeling in food. The Food and Drug Association has been dragging their heals since 2004 when the “big 8” allergens were identified; gluten was included in the FDA proposal and put on hold 4 times since then. (http://www.fda.gov/food/labelingnutrition/FoodAllergensLabeling/GuidanceComplianceRegulatoryInformation/ucm106187.htm see SEC. 206. GLUTEN LABELING). Thousands of people just like me live their lives in social exile for fear of getting contaminated. And then if we do get gluten we live with the days or weeks of repercussion.
I have written this blog because I don’t really tell my friends how scary it is to eat, I just laugh, smile, remind myself and them that my life is sooooo much better than when I was consuming gluten on a regular basis and always sick (tho I didn’t know it then). But I want you to know. If you are struggling with standing up to others to protect your health, that’s OK, it is tough and you can do it. If you have a family member or friend you just don’t understand, try to hear what their world is like. If you run a restaurant and want to make food that your gluten sensitive customers can enjoy without fear, I encourage you to learn all you can about making food truly free from cross-contamination. (Visit the GIG at http://www.gluten.net/). No person is an island, we all rely on each other and we all need to clearly communicate. This is my way. I really believe that some day gluten sensitivity will be understood by everyone and treated with the deference it deserves. Until then, those of us that can speak up, must. I am trying to do my part.
Thank you for reading.