Imagine the following scenario
You go to the doctor after years of suffering and finally receive a diagnosis. The treatment seems surprisingly simple: take this prescription with zero side effects and you'll be fine.
You make your way to the pharmacy to get your prescription filled feeling optimistic and even excited about taking this step towards feeling better. The pharmacist is having a pretty busy day and while filling your prescription, a pill from somebody else's prescription accidentally gets mixed into your pills. Maybe the pharmacist even notices it but thinks "Eh, what's the harm? One tiny little pill won't hurt. I'm really busy and need to finish this up so I can move on."
It turns out that one little pill does the opposite of the drug you need. What do you think happens? Can one little pill, such a small amount of medication, really hurt you?
Of course, this is a horrible scenario but something similar is happening to people with celiac disease and non-celiac gluten intolerance every day.
From here on out, I'll just refer to both celiac disease and non-celiac gluten intolerance as "celiac disease" but know that I'm talking about both.
They say food is medicine but for those with celiac disease, that is truly the case. Our doctors aren't writing us a prescription for a pill but literally prescribe us a gluten free diet (yes, that diet that's been at the butt-end of jokes the past few years) to manage our condition. Our food is our only medicine and should be treated as such.
Now, I'm going to tell you a true story
A few years ago, I learned that there was a place not far from home that made these beautiful, hand-painted chocolates. I looked on their website to discover that all of their products were gluten-free! Places like that are not only rare but also extremely valuable to people like myself because no gluten-containing products in their facility means no risk of cross-contamination of gluten - a situation where even a trace amount can cause me severe illness for a month and a half. I know that sounds crazy but it's not all that unusual for people with celiac disease. I've heard as little as 1/64th of a teaspoon of gluten is enough to cause intestinal damage.
My sister and brother heard me talking about the chocolates and surprised me with a large (and not cheap) box of their chocolates for christmas that year. I was so excited! We passed the box around so everyone could see all the intricate decorations.
I picked out a chocolate to try but flipped over the box to double check the ingredients, a habit I'll always have, only to see the words "may contain wheat". What?! Why?! I continued to scan the ingredient list and saw it contained wheat-derived ingredients.
I had to break it to my brother and sister that I couldn't eat their thoughtful gift, contact the company, and get their money back.
What did this company have to say about all of this? They thought it would be rare that somebody who had a true gluten intolerance would order their chocolates.
Seriously?
It's not just food manufacturers either
Us bloggers are guilty too.
I've seen it so many times on Pinterest. There will be a recipe I'm thinking about pinning and the pin's image says it's gluten free. However, I know to look closer than that. A quick scan of the ingredients reveals that the recipe calls for corn flakes, rice krispies cereal, steel cut oats, or any variety of oats without the "gluten free" specification. Sure, a lot of bloggers will specify in the recipe notes but too many don't.
If I were to make any one of these recipes, I would know not to get the brand name corn flakes or rice cereal and to look for the gluten free versions. I would also know to not only get the gluten free oats but more specifically, the purity protocol gluten free oats (as opposed to mechanically sorted).
But what happens when somebody who's newly diagnosed makes these recipes? Or if a friend, family member, or coworker wants to make one of those recipes for somebody who can't eat gluten. They may not know what pitfalls to look for and take the term "gluten free" at face value. I know I made myself sick plenty of times when I was first diagnosed. There's a huge learning curve!
Of course, this can only be taken so far. Any naturally gluten-free ingredient has the potential to be contaminated with enough gluten to make somebody sick. I wouldn't go as far to specify using the "gluten free version" of things like nuts, oils, produce, or any ingredient that's typically gluten free. However, I think it's important to specify the gluten free versions of things that aren't typically gluten free like cereals or are usually unsafe like oats. Additionally, making brand recommendations can be very helpful to people making the recipe.
Restaurants
I get it. Somebody sits down to eat at a restaurant, asks for their gluten free diet to be accommodated, then orders the chocolate lava cake for dessert and the staff is left wondering why they even bother making the accommodations in the first place. Gluten free as a weight loss diet has sent mixed signals to restaurants and the population in general. It has led people to believe that gluten intolerance isn't real and to joke that celiac disease only happens to the trendiest among us who also have been blessed with a Whole Foods sized grocery budget.
The reality is, celiac disease doesn't discriminate and it is very real. Of course I don't have any issues if a non-celiac, generally healthy person wants to share my diet with me for whatever reason but people preparing our food need to understand that there is a difference. The person cheating on their diet doesn't need kitchen staff taking special precautions such as changing their gloves or using freshly washed equipment but there are people out there who really do need those accommodations. Don't let one group of people ruin it for the rest of us.
A lot of you probably know that I stopped eating in restaurants a few years ago so I can't speak much on how things are being handled these days. Doing a quick Google search of a few popular restaurants brought a big change to my attention.
When I was still eating out in restaurants, most places had a "gluten free menu". These menus came with a disclaimer at the bottom with various statements about how the food is not made in a gluten free kitchen and that the restaurant cannot guarantee the absence of gluten in any of their menu items but do their best to accommodate.
Today, when I looked at these menus, most of them were no longer called "gluten free menus". Instead, they use variations of menu titles like "Gluten Awareness" (54th Street) and "Mindful Choices Around Gluten" (Culvers). Even Papa John's states that their gluten free crusts are "Not recommended for customers with Celiac Disease as pizzas may be exposed to gluten during the preparation process."
This may seem disappointing to those with celiac disease but I think their statements really show that restaurants are becoming more educated. Or scared of getting sued. Something like that... but I would rather restaurants be honest and advise me not to eat there than to claim they're meeting expectations that they don't currently have the capacity for. I don't know how obvious the fine print is when ordering within the restaurant as opposed to looking at the menus online but I hope they make it clear. Maybe somebody who's eaten out more recently can fill me in?
Friends and family
You mean well and we love you for it. However, take the time to talk to the person you're cooking gluten free for. Find out the best practices for preventing cross-contamination of gluten in a non-gluten free kitchen. Let the person know what ingredients (and brands) you're using. Educate yourself on the hidden sources of gluten. Don't be afraid to email a company if you have questions on the gluten-free status of a product. And if the person you're cooking gluten free for isn't comfortable with somebody else handling their food, respect that. We've all gotten sick too many times at the expense of wanting to be a polite guest.
My request
What I want those who are making these claims to understand is that our health is what's at stake here. This isn't about keeping up with food trends or offering everything the competition offers. There are lots of reasons why people have to eat gluten-free and even though the non-medical reasons seem to get the media's attention the most, many people cannot consume it, even in trace amounts, because they have celiac disease, non-celiac gluten intolerance, any number of medical conditions, or simply feel better without it.
If somebody's not 100% confident and educated in their gluten-free claims, they shouldn't try to force it. Gluten free products, recipes, and menus are so convenient but lose that convenience factor when they make us sick.
Again, our food is our medication. Manufacturing and properly labeling that medication is not a job to be taken lightly. If even a small amount of gluten finds its way into our "medication", it has the opposite effect of the medicine we need. Please ensure our "gluten free" food is celiac-safe or remove the gluten-free claim altogether.
Meagan, this is so thorough and so well explained! I never knew about cross contamination issues, or that even things like oats and rice are not necessarily safe. Extremely eye opening!
Thanks Patty! I didn't know about that stuff at first either and when I learned about it, I was sure it didn't affect me. I was so wrong! I wish I would have had somebody really explain it to me from the start but I doubt I would have believed them if I didn't experience it for myself.
You are really doing a great job. Hands off to your struggle of helping the people.