Dear Gluten-Free Friends,
I saw a reel yesterday from a gluten-free account I follow, that has stayed on my mind. The reel talked about wishing there had been one last gluten containing meal before switching over to GF, after a celiac diagnosis.
One last meal.
This previously mentioned account also creates a lot of great, informative, positive content. The account highlights where to find gluten-free food, while promoting products and stores to buy these products at. This account is run by someone who was diagnosed after getting very sick as an adult. I can’t imagine how hard it must be to go for years eating what you love, and having the rug pulled out from under your feet essentially overnight. I used to be so sad that our daughter was diagnosed at such a young age and felt annoyed when a friend suggested that she was lucky. I see the luck now, having had a diagnosis at 3 is incredible! My daughter was spared health issues from an unknown cause at a later age. She was spared establishing a routine, having built up nostalgia around certain foods, and then having that taken away. Still, I keep thinking about the tone of the reel that spoke about one last gluten meal, and I’m left feeling sad and a bit annoyed. Maybe the last meal would be more about a restaurant, or a favorite brand that doesn’t offer gluten-free options. Maybe the last meal is more about emotional attachment to a memory. My husband has a favorite hot dog place from where he grew up and has refrained from talking up how good it was, knowing we can’t bring our daughter there. I get the sentiment around the “last meal,” whatever deeper meaning that might have. On the other hand, I want to challenge the idea of the last meal and talk about how this negative mindset feels like a contraction to promoting gluten-free food. Maybe the objective of this content creator is more around an awareness of what celiac is, and what brands to try after diagnosis. Nonetheless, the belief that from diagnosis onward all past meals have gone to die is a concept that I’m having trouble accepting.
Since I am the parent of a celiac child and not someone who can personally relate, I realize I might be presenting a harsh argument here. I do not know how it feels to change my diet because of a health restriction. I have gone gluten-free for my daughter though, and as an adult I can speak to the options and also make a comparison. I think we have a long way to go for our society to be educated enough to protect and include our celiac friends and family on a lot of levels. The label, “gluten-friendly,” on menus drives me nuts. They tried, a little, to be inclusive, but left out the celiacs and severely allergic within the attempt at including gluten-free options. To me, it just doesn’t even count. That being said, those who are trying, the companies who have closely perfected baked options, the restaurants who dedicate spaces, the businesses who include their gluten-free employees, schools who provide gluten-free options, the growing gluten-free section of grocery stores, I see you and I appreciate you. The options are growing. The gluten-free diet has come a very long way since the banana diet in 1924. So, the “one last gluten meal,” feels gloomy with all things considered.
Our daughter was on a gluten-free diet for a celiac diagnosis for 3 years before a new GI Dr suggested doing a gluten study because she had never been scoped with her initial diagnosis. We saw a GI Dr after her pediatrician diagnosed her, but the guidance was minimal, and it was advised that she did not need a scope considering the results of her celiac panel. We didn’t know any differently, so we took the advice and went gluten-free without a scope. 3 years later, we had a new GI Dr encourage doing a gluten study, telling us that sometimes at a young age, the celiac panel could show incorrect results. This new Dr was now suggesting that our daughter might not have celiac after all because in children 3 and under, the blood test may not be accurate. What a whirlwind as parents. We go home and start to introduce gluten back into her diet after spending 3 years teaching her about cross contamination, after cutting out favorite snacks and finding new ones. How do we now reintroduce foods and NOT confuse her? We did it wrong at first. We bought goldfish crackers, which she had once loved, and told her it was ok to try again. We explained the gluten study to her, but she was so worried about having a gluten reaction, that she ate the goldfish and threw it up. So, we reevaluated our approach, we intentionally contaminated her food to start out the study. We bought gluten bread, gluten pasta, mixed it together. Made all familiar foods, but didn’t mention if it was gluten-free or not. What we found, our daughter grew to dislike the texture of gluten bread! To this day, if we find a bread that is so soft, it leaves the rest of our family applauding the company who made this gluten-free masterpiece, our celiac daughter turns her nose up at it. “Too soft,” she says. She prefers a firmer texture. As far as baked goods, between how much I love to bake, and also having found amazing options within the grocery store or from local bakeries, she truly doesn’t miss anything. She also doesn’t remember Wegmans doughnuts, and that being a treat to eat while I did our grocery shopping. Even still, I wouldn’t personally want a “last time,” because I don’t want to attach sadness to this change. I want to instead find the amazing gluten-free doughnuts or make them. We keep moving forward.
I recently heard a child psychologist talk about what it means to be resilient. Resilience sounds positive, but having to be resilient is not positive. The space between the known and the unknown is HARD. Similarly, the learning curve between diagnosis and new routines is the same uncomfortable learning period. Resistance to change, and longing to go back to what is familiar is completely understandable.
Our food is learned behavior. As adults, we are more resistant of change than kids are. Let’s think about how much food has evolved. From hunting and gathering to instacart dropping off everything we need right at our doorstep. If our city doesn’t have the best gluten-free doughnuts, we can have them shipped to us. It isn’t cheap, it isn’t as simple, but it is an option for now. For now, because the options will keep growing, there will always be a new gluten-free option that’s better than the last. Options will grow, and those options will keep on evolving to be better and better. The demand for those products will create the growth in options and the evolution of the quality. As the parent of a celiac child, buying gluten-free for me is another vote for the gluten-free options to be available more and more, so I keep on voting. I’ve found myself having trouble shifting out of the mindset of needing food to be gluten-free when I’ve been out to eat without my daughter present.
After our household went gluten-free for our daughter, a few years later, and during covid, we decided to go vegan. Talk about a challenge. This challenge and learning curve for us also removed the focus on food being gluten-free vs not. Now, we were learning how to eat plant-based and educating ourselves about the benefits of that dietary choice. Covid left us looking for something else to do and think about, so we explored adding another dietary change to our lives. That being said, this is why our household is pretty diverse now with our food choices. While we are predominantly vegetarian, and all in all, mostly plant-based, we also layer in other options. Some of us eat meat sometimes, while some of us do not, we get eggs from my parents’ chickens, we buy nut milk, and limit cheese from time to time, but we don’t make a big deal about it. We removed the label; we don’t dwell on holding tight to declaring a food identity. I don’t love meat, but sometimes I want turkey, and then I don’t again. Our celiac daughter is the most interested in eating plant-based, but then recently reintroduced gluten-free chicken nuggets. Eating for a medical necessity is hard, especially when traveling, so the knowledge about healthy food is critical, but allowing moderation with sweet treats or whatever cravings there may be, are so important for a positive mental outlook around food. That is our goal, a positive relationship with food. Not one where we are mourning the day where she could have anything, but embracing the change and celebrating how much gluten-free food is evolving. A plant-based diet is naturally, predominantly gluten-free. For us, the learning experience around plant-based cooking and baking, mended our relationship with gluten-free food. A diet rich in whole foods is easier to navigate gluten-free than a routine that includes a lot of processed foods and restaurants. We can embrace new routines, find new nostalgic foods, and kids especially, (even picky eaters,) will be on board if we as the grownups guide the positive outlook. We need to get creative sometimes, but it is possible.
Gluten-free food is just as good, maybe that’s an unpopular opinion to have. Some gluten-free food is bad, so bad I wonder how those companies stay afloat. Some gluten containing foods are also so bad, so bad for you, prepared in poor conditions, and so on. The quality of the food, gluten-free or not, the preparation, the clean ingredients, that’s what defines food being good or not to me. I hope my kids grow up to have a positive relationship with food and can be resilient enough to make positive changes for their health. Someday, one of them might need to make an adjustment because of an allergy, or another medical condition, they might need to implement an exercise routine or have an injury and adjust their routine. Whatever it is, I hope that they can make the adjustment and keep moving forward, not dwelling on what they can’t have or can’t do but seeing the positive options ahead. With respect, I can see the point of the gluten-free content creator wanting a food one last time, expressing how it feels to miss a specific food, but just like any relationship, if it isn’t good for you, it’s time to move on. When it comes to a celiacs relationship with gluten, that’s an abusive relationship. There is so much good that comes from being strong enough to make changes and do what is best for your mind and body.
With love, Tiffany
