DC Cross, all rights reserved, reprint with permission of author.
“It must be something else.” For 50 years that is what I heard whenever I had a food reaction.
My childhood was spent with multiple doctor visits every week. I was allergic to everything, trees, grass, hay, cats, dust, oranges, tomatoes, the list was long, the shots twice a week. Multiple tests, what could be wrong with this little girl, we cannot figure it out. When I was 14 and had Greek food for the first time. I Loved it and thought it was amazing, but it made me incredibly sick. “Did you eat something else”, no, “did you take some kind of drugs”, no, “did you wash your hands properly”, duh. Well it can't be the food, “it must be something else”. It was always somehow my fault that I got sick.
In my house if you didn't eat what was put in front of you, you didn't eat anything else until it was gone. Food was used as torture, a way to control me. If I was not “good” enough that day, I was sent to my room without food, sometimes for many days in a row. I tried hiding food in my room so I could eat when they did this, but they searched my room regularly and would find the food and then I would not get food because of that. But starving was better than fed. I could think, I was happy, I didn't throw up. I was an eating disorder waiting to happen but somehow managed to side step that land mine.
Once in the Corporate world it was Fine Dining or the Food Court. My go to for Fine DIning was Risotto and the Food Court was Chinese, Sushi, or Thai so I was usually okay, until I ate something else and then I wasn't, but “it must be something else”.
I moved to Colorado in 1999 and in 2000 Benjamin came into my life, the sweetest Golden Retriever ever, perfect in every way, except he was very itchy. The Vet's solution was to put him on Prednisone, turning my energetic loving puppy into a blob that slept all day. I did not accept it as a solution and took him to a homeopathic vet who explained that many Goldens have skin issues and most of them can be fixed by not feeding them food with Wheat. As Ben would want a taste of everything I had I always made sure it did not have wheat in it. My diet prior to that did not include much wheat anyway as I found it to put weight on me very quickly.
Time went by and it was always something else. I left the Corporate World and became a Level 3 Sommelier and Senior Wine Educator and was the top instructor at my Wine School. I edited the Food and Wine Pairing Textbook for the Level 3 Sommelier Program and gained an understanding of Food and Wine pairing that even the author recognized as above his own. I created my own Wine Import Education Company and travelled to taste with winemakers from around the world and sold their wines to the best Restaurants in Colorado. To showcase my wines I hosted Wine Dinners at some of Denver's Best Restaurants only to get home and throw up all night. I would speak to them about what was in the meal and the conclusion was always “it must be something else”. I stopped doing wine dinners in restaurants and started hosting them in my home. I did not get sick. I realized that as long as I made my food I would not get sick. What was the difference. Was my kitchen cleaner than a restaurant, not likely with the number of dogs and horses I had.
So many people loved my wine selections and my food and said I should have my own restaurant that I started to consider the possibility. Knowing the industry the way I did and the fail rate I was quite hesitant. But my Import company was difficult to manage, it legally required many partnerships of trust and reliability and it was becoming increasingly more difficult to find those partners. I started looking at restaurant spaces and working on a business plan. I wanted my restaurant to be Plant Based so while I was waiting for the perfect place I developed vegan meats, “turkey”, “roast beef”, “burger” using a product I had never worked with before, Vital Wheat Gluten. I could make anything taste like anything with my skills and knowledge as a Sommelier, I just needed the right texture. VWG gave me that texture, I nailed the flavour profiles and I had Vegan 'meat'. But it made me sick. I made myself sick. It was no longer it must be something else, it was food, it was Gluten.
I put an offer in on an existing restaurant, which in retrospect was luckily turned down. An off hand comment about wanting to be a Gun Free Zone changed my plans of opening in the Denver area as I was told if I tried that in Colorado I would either be a target or go out of business. A little more research into the situation made me realize that I was likely the only one walking around Colorado that did not have a gun, concealed or open carry. So I decided to move back to Canada.
But I had 3 dogs and in order to get them to Canada I had to buy an RV and drive there. My diet changed, I no longer had my resources and there were new things and places to try. I started to get sick again. What could it be, not the food, I made sure to order Gluten Free items, “it must be something else”. Maybe the water, or the new wines I was tasting.
And then I did it. I opened my own restaurant. I created my own menu with the recipes I had been using for years and new recipes that were all gluten free. I wanted a restaurant where everyone could eat safely. After years of hearing from the Gluten Intolerant and the nightmares of the Celiacs I wanted a place where they felt heard, considered, cared for.
I loved eating out and tried out the different restaurants in my new town and I started to get sick again. I would inquire about the meal, “it must be something else” is what I was told. My home was Gluten Free, my Restaurant was Gluten Free, I could go weeks without being sick if I ate my own food. But running a restaurant by yourself is impossible and exhausting, and I like supporting the local economy. I would order GF dishes, pay extra for the GF crust, but I was still throwing up. My usual choices were Chinese and Sushi and while I did not feel great after, I did not throw up. "It must be something else."
It started with a little patch of dry skin on my foot that I assumed was caused externally. I treated it with Apple Cider Vinegar and it seemed to go away at first. And then there was another patch, and another patch, and more patches. And then my feet would be on fire and so painful I could not stand up. My arms and legs were so heavy they felt like I had played two concerts, a Tennis Tournament and a Hockey Tournament in the same weekend. I put many of the symptoms aside assuming it was exhaustion due to working 20 hour days, mostly on my feet on very tiring marble floors. My days off would be spent in bed, only moving to feed and care for my 2 horses and 3 dogs. I was always exhausted and even more concerning extremely unhappy. Miserable in fact, which made my misery even worse because I was doing something I had dreamed of doing for over 3 decades. My own place, my own boss, living my dream, but it was a nightmare. I had to battle my body every day, I had to cajole myself to get in the car to drive to work, I had to calm myself down on the drive to work crying the entire way. I would spend an hour in the kitchen doing dishes before opening crying and shaking. The weird lizard skin patches were increasing in size and quantity, getting more itchy, and showed no sign of stopping. The ACV would work for a bit and then the patches would get worse. Was it stress, possibly, exhaustion, that too, but this was a hole of sadness and lethargy that I could not shake. Like the cloud that follows Eyeore around I could not get rid of it. I was unable to focus, my mind was fuzzy, slow, I made mistakes that I never would. My coordination was off, I was grumpy and angry, everything hurt, I was bloated and my skin was not its perfect glowing no make up self. Was it PMS, Menopause, Stress, Exhaustion, maybe even Depression. It was like a part of me would go missing for a few days and then I would be back to normal. But I was living Gluten Free so “it must be something else”.
But the Gluten is there, in the Rice Vinegar, in the Soy Sauce, even in my fav Tamari. It was in Beer, in barrel aged alcohol, Vodka, Scotch, Rye, Whiskey, and other alcohols. In hair colour, and I still have not found one that is GF. In my favourite Buckwheat Noodles, it did not occur to me to check the label for wheat when buying Buckwheat noodles. It was in the fryer for French Fries, my usual go to order in bars. In the air in the bakeries I would get wheat bread from for customers who were offended by being given GF Bread. Sake, really, Sake, it is Rice Wine, but some Sake has gluten in it. And the worst for me, it is in my favourite Wines, and the very expensive wines I specialize in.
So I got rid of all of it, except the wines, I limit those to just tasting, it is my job and I have not found I react to them negatively. Finally I was feeling better and more importantly, happier, my mind was coming back, my mood was improving, energy on the rise. The weird skin things went away, I could wear sandals this summer. My feet no longer ached. My legs were recovering faster, I had more energy. I had it figured out. It only took 50 years but now I knew what was wrong with me, nothing.
I made my restaurant 100% Gluten Free and just smiled back at the gluten offended and explained that I cannot serve what I cannot taste so no gluten in my restaurant.
For Celiac Awareness Month I decided I would put my experience, expertise and knowledge to the test and see how many restaurants in my town that claimed to be GF, or have GF dishes really were GF and if I could offer my expertise. I also joined several Celiac pages to see what the knowledge level for those with the disease was. I was very surprised at the lack of knowledge at every level and even more surprised when my research and expertise was questioned by someone with anecdotal evidence like “I ate that one time and was okay”.
My town is not great for GF selections and no one is certified GF. I knew not to bother and try some of them as they had already glutened me and I was not giving them another chance. I went to new places and asked questions first, or sent in emails to see what was done and what the level of knowledge was. The ones that were mostly gluten free or had separate fryers and procedures for GF and went the extra step for GF were getting my money and I was looking forward to finding some new GF places to hang out. Maybe even somewhere I could go on a date with someone where I would not get sick.
There is only one 100% GF Baker in town but I had heard some people had reacted and the response was “it must be something else” so I decided not to try them. There are several other bakers in my town that claim to be GF but when I asked if the kitchen they use was 100% GF they avoided the question multiple times until I got a no or figured it out myself. They claim their product is Gluten Free but do not disclose that it is not made in a 100% GF kitchen. The law does not require them to disclose that fact. They know what they are doing is not safe, they know flour stays in the air for 48 hours, they do it anyway. I wonder if any of them use vinegar and if it is 100% GF. I did not try any of these products, I was not willing to risk it. But it was very concerning how many questions I had to ask in order to get the truth. And how they all tried to convince me it was okay and I was crazy for insisting on a GF kitchen.
Some restaurants I walked out of because their answers to my GF inquiries were so incorrect I couldn't even explain it to them. Of the ones I did eat at or get take out, I got glutened. Every single restaurant that claimed Gluten Free for their dish made me sick. Every single restaurant. Nothing I ordered should have been anywhere near gluten. But every place made me sick, some more severely than others. And when I informed them that their GF food had triggered a gluten reaction their response was “it must be something else”. From every single one of them.
I cook and taste multiple dishes and different cuisines with a variety of ingredients for 12 hours a day 6 days a week. I get myself from my GF Home to my GF Restaurant with multiple errands in between for weeks on end and not get sick. But the one day I eat at a restaurant I am supposed to believe that is the day that I accidentally gluten myself. Or come into contact with something that glutens me that has nothing to do with that restaurant. “It must be something else.” But I know it is them. It cannot be anything else.
One of the chefs I informed of my reaction vehemently insisted it could not be his place, insultingly so. In fact attacked me on a Social Media Celiac page for calling out his ridiculous response when I informed him I had reacted to his food even though I did not mention the name of his restaurant. He recognized his ridiculous quote, sadly it was not just him I was quoting. It was an assault on Causality and Logic like nothing I have ever seen before. He simultaneously acknowledged my experience and knowledge, criticized me for it and dismissed it. Mansplained how Cross Contamination can happen at anytime and anywhere but nothing of the sort could have happened at his restaurant because of their protocols so "it must be something else". That he spent an hour researching my order to see if their were other potential allergens. Yes he used the word allergens, could he show his ignorance more. He was offended, as if his tirade would make me say, oh, gee, “it must be something else”. That by now I can't tell which food made me sick. And seriously, how hard is to do fries in a GF fryer and not contaminate them. All those years of getting sick and saying I think it was the food at that place what did it have in it, oh, no silly little girl, sit down and be quiet "it must be something else".
So much is misunderstood about Gluten and the reactions. Personally I think there are more people who are gluten intolerant than we realize. But that this thing called Gluten can trigger an Auto Immune Disease that makes the body attack itself ultimately killing you should be cause for concern. Especially as there is a version called Silent Celiac, which means your body is killing itself but you don't know, and likely won't until it is too late, or you are dead,.
Much more knowledge, care and understanding are needed from governments, health care professionals and the food industry. It is more than just puking, or pooping or feeling like crap for days. It is weeks of debilitating symptoms, depression, rage, pain and discomfort. There is no cure. There is no pill or shot to make it stop. There are limited things to do to even mitigate the symptoms.
It turns food into something that you fear, something that instead of nourishing you is now your enemy because you are starving and can't eat. And when you do eat and it makes you sick and you are told “it must be something else” you feel like you are crazy. But you are not crazy because it was not something else, it was Gluten. Don't sit down, don't be quiet. Yes we should encourage more GF selections that are done correctly and with proper care. But we also need to inform places when that care is not taken. Restaurants need to understand how to prep, prepare and design GF dishes and how to react with compassion when informed they did not quite get it right.
They estimate about 9% of the population is Diabetic and no one questions their desire to not eat sugar. At least 10% of the population has a negative reaction to Gluten. It is time we do better especially given the medical consequences.