Most of our articles on the celiac-disease website are about gluten-free products, restaurants, and reviews, in other words, we write about how to avoid gluten. But even those of us who are vigilant, read ingredient lists over and over, and ask tens of questions every time we eat out at a restaurant will at some point be accidentally “glutened”. To be “glutened” is not an official word, you won’t find it in the dictionary, but for those of us who have celiac, or are gluten-free out of necessity, it has become part of our nomenclature. If I use this term with people unfamiliar with the gluten-free world, I get some pretty odd looks, but for those who follow eating gluten-free, we know all too well.
When we get glutened, symptoms can vary greatly. Some people feel it as soon as they have swallowed the offending food item, while others may not feel anything for days. Some of us may get an upset stomach, or a rash, some may have neurological symptoms, some may have a blinding headache, some may have weakness, some may be sick for months, and some of us actually have no symptoms. Many of us in this last group is the luckiest one….they can eat gluten, and not feel the pain afterward. When it is a reality, it may be the most dangerous of them all, because their bodies are actually suffering silently. They are still incurring the damage inside, but don’t feel the symptoms, so that doesn’t even have a gauge to know when they accidentally get it.
Unfortunately, there is no set list to give as a warning about how someone will feel if they accidentally (or intentionally, for that matter) ingest gluten. It is just such a personalized thing, that everyone reacts differently. And may even react differently depending on how much gluten they have eaten.
I like to consider myself extremely careful with my gluten-free way of life. Since being diagnosed with celiac, I have gone cold turkey and transformed our house into my gluten-free haven. Our house is the one place where I know I am safe. I do the shopping and cooking, so I know that most things coming into the house were brought there by me, and I will check over ingredients once, even twice of items from toothpaste to lipstick to tater tots. My family is now educated on it, and they also know only gluten-free items make it past the door. Even when I have guests over for a dinner party, book group, or drinks, I ask them only to bring the beverages, I will supply the food, just so I can remain feeling comfortable in my own house.
Of course, eating out is more difficult to control, and every time you eat out, you are taking a chance of cross-contamination. Even a restaurant with a gluten-free menu, strict handling procedures, and the best intentions can inadvertently make you sick. After a while, you will begin to learn the places where you feel comfortable and where you don’t. I went from being a person that loved eating at any hole-in-wall and eating anything put in front of me without question. Since having celiac that has completely changed, and I have definitely become a creature of habit, and tend to return to places where I feel I can eat safely.
Recently I discovered no matter how careful I was, I could not escape being glutened. Ironically, it seems the times I have been glutened, since being diagnosed, has been at home, the place that I consider my safe place. Once it was from tempeh, once from ricotta cheese, once from a spice blend, it will get me from products that I believed were safe and the ingredients looked to be safe as well. These events have happened less than a handful of times, and when it has, my symptoms tend to start as mild heartburn which gradually gets worse and worse within an hour until I feel extremely uncomfortable, bloated, and in pain. Sometimes I will also get the chills and get sleepy. If I am out somewhere when it strikes, I would be useless. To get relief from these symptoms, I take Pepto immediately, followed by at least 2 cups of hot chamomile tea. I will still feel pretty awful for an hour or two, but I will gradually start to feel better after an hour of taking these things. But the experience is still miserable enough that I would never, ever intentionally do this to me.
But this most recent episode was a complete break in my gluten-free security system. I tend to buy my daughter gluten-free frozen waffles as a quick option for breakfast. I have been buying them for years (even before being gluten-free), and I always look at the box to be sure I am not buying ones that contain gluten. I always, always double-check.
So one morning, a couple of weeks ago, as I was getting ready to take my daughter to school, I asked my husband if he could heat one up for me too. This is extremely unusual, as I try to stay away from empty carbs, but I knew I would be out for a while, and needed to eat something fast. While I was running out the door, I grabbed the waffle and my tea and went to the car. I started eating the waffle in the car and thought to myself, wow, this texture is different. Maybe they added flaxseed to it or something. I thought it was grainy. And then I had a sudden thought (after completely finishing the waffle – big mistake), called my husband and he confirmed my worst fears. I ate a gluten waffle. I actually accidentally bought gluten-filled waffles, and neither my husband nor myself noticed.
This was honestly a nightmare come true. I have had dreams about eating this quantity of gluten, I didn’t think it would actually ever happen. I have not had this much gluten since before being gluten-free. The only gluten I have had since has been minuscule, by mistake. I had no clue what to expect, was I going to pass out? Was I going to be sick on the spot?
After bringing my daughter to school, I went straight home to try and do damage control. I drank endless amounts of hot tea and water. 2 hours went by and so far nothing, not even any stomach discomfort. I thought maybe the waffle was mislabeled and it really was gluten-free. Or maybe I had so much, my body was in shock and couldn’t react? But I was soon to find out how wrong I was. It hit me completely differently this time, with hours of feeling like I was on a very rocky boat and throwing up non-stop, not even able to keep down water, and ending up with a horrible migraine and in bed. I actually never had a stomach ache this time, however.
It was a truly miserable experience, and even though I felt better by the next day, it is not worth it to ever feel that way again. I couldn’t believe the waffles slipped by my extremely careful eye.
The moral, for me, is to always check, check, check…even if you think you are buying the same thing you buy week after week, a quick glance at the ingredients is more than worth it. Mistakes will happen all along the way, which is almost inevitable, but taking a couple of extra minutes while shopping or asking questions when being served, by someone else, is so worth it in the end.
What symptoms do you get when you get glutened? Or what has been your worst glutened experience?
I went on a anniversary trip with my husband and ate three meals out in restaurants. Each tune I followed the GF protocol. The morning that we were leaving after eating a breakfast that we brought ourselves I started to get a headache. Now it’s two months later and my bowel has been cycling between one end of the spectrum to the other. I must have eaten a whole sandwich of gluten or something big! My doctor put me on Citrucel fiber to help with the excess water and then dryness of my stool. I have not been able to eat normally and feel tired. I wonder if I will get the courage to travel again. I have lost my sense of trust.