When you live with celiac disease, as I do, it is imperative for your personal safety to know about the possibilities of gluten hiding not only in the food and drinks you consume, but in non-food items as well (medications, supplements and beauty products, to name a few).
As an integrative nutrition health coach who specializes in helping clients with celiac disease and non-celiac gluten sensitivity, I hold myself to an even higher standard when it comes to being knowledgeable about myriad sources of gluten, so that I may protect myself, and share this information with my clients. (For more information on how we can work together, visit my website: www.liveonwellness.org)
However, after a recent trip to the dentist left me extremely sick (“glutened”), I felt compelled to share my story with the Gluten-Free Living community, so that what happened to me doesn’t happen to anyone else, and to spread awareness, which is imperative in a world where gluten is everywhere.
As I do with every medical professional I encounter, I made sure my dentist knew I had celiac disease which meant we would work together to ensure that any materials used during dental exams or treatments would be strictly gluten free.
When she recommended a custom-fit mouth guard to prevent tooth grinding while I slept, I reminded her that I had celiac disease and was informed that it would not be an issue. After having an impression and fitting appointment several weeks later, I was instructed to wear the mouth guard one hour the first night, two hours the second night, and increase the duration incrementally until I felt comfortable wearing it the entire night.
I wore the mouth guard for one hour the first night, and woke up the next morning feeling nauseous and had an upset stomach. I noticed my upper abdominal area seemed bloated, which tends to be a sign of accidental gluten ingestion for me, so I went over a mental checklist of everything I ate the previous few days, (followed by a glance at a food app on my phone where I log everything I eat and drink— I highly recommend that my clients keep a record of everything they eat, whether in a food journal, diary, or app on their phone), to determine if I could have come into contact with gluten. I had prepared all my own food in my home for several days prior, which is a safe space for me, and nothing stood out as a source of possible cross contact, so I decided I might have a stomach bug or was otherwise under the weather.
The next night I wore the mouth guard for several hours before removing it and woke up the next morning incredibly sick. I was nauseous and started to vomit, my upper abdominal area was extremely distended, I had brain fog and an awful upset stomach; now I knew for sure I had been glutened. Once again, I went through a mental checklist and my food app, in case there was something I missed, and this time I had an epiphany: I realized I had slept with my new mouth guard for several hours the night before, and one hour the previous night, when my symptoms first appeared.
I immediately turned to Google, since I remembered that when doing the research for my upcoming book I had come across an article about a young girl with celiac disease, who had symptoms appear after being given an orthodontic retainer.
I wondered if perhaps my mouth guard was comprised of any gluten-containing ingredients.
I contacted my dentist, explained how sick I was and asked for the information for the laboratory that made my mouth guard, so I might determine if there were any gluten ingredients used in its production.
The culprit: methyl methacrylate
A quick Google search had led me to an ingredient known as methyl methacrylate which is a polymer used in many plastic items, and in particular, orthodontic retainers and mouth guards. I later received a phone call from my dentist explaining that she contacted the laboratory and methyl methacrylate was indeed used in the production of my mouth guard, and therefore it did contain gluten.
She was extremely apologetic, and informed me she would find another lab to make me a mouth guard without gluten-containing ingredients.
Her sincere apologies aside, a number of factors stood out to me as having contributed to this “snafu” (for lack of a better word). First and foremost, when living with celiac disease or non-celiac gluten sensitivity, communication is key; each of us must be our own advocates and communicate ad nauseam until we truly feel heard and therefore safe. Here, I felt I had communicated sufficiently with my dentist about my concerns, however at some point in the communication chain between myself, my dentist, her office staff and the laboratory, there was a break in the chain. Regardless how this communication was broken (indeed, I will never know), the result was a horrible few days of sickness, which is the worst possible outcome for anyone living with celiac disease.
Another troubling issue which my story highlights is an overall lack of education in our society when it comes to gluten, celiac disease, sources of possible contamination, and the effects of contamination on individuals. I truly believe that had my dentist, office staff and/or laboratory staff known of the possibility of gluten containing ingredients in mouth guards and possible effects it might have on patients with celiac disease, the outcome could have been vastly different.
How can the gluten-free community better educate the public about the seriousness of our concerns when it comes to gluten?
I believe there are four key steps we can all take to increase awareness: education of friends and family, education of others with whom we come into contact, raising these issues in other contexts, and ensuring prompt and proper feedback and awareness if you are glutened.
Education of Friends and Family
The first and most important step we can take to ensure our future safety when it comes to gluten contamination is to educate those closest to us – our friends and family. These are the people with whom we have the most contact, and who are present at times in our lives when we are at risk for contamination (i.e., family dinners, celebratory meals and events, cocktails with friends, BBQs, brunches and weddings, to name just a few).
These individuals also have the biggest investment in our personal wellbeing, since they presumably love and care about us. That is not to say, however, that they are responsible for making sure we are safe; rather, they are our closest allies as we advocate on our own behalf.
Here, the first thing I did after realizing I had been glutened by my mouth guard was to let all my closest friends and family know. After listening to my story each of them took away new knowledge, which hopefully they will share with others at some point in the future.
Education of Others With Whom We Come in Contact
Our next line of defense is to educate other individuals with whom we come into contact. The degree of contact with these individuals may be regular (a waiter from your favorite restaurant) or it may be someone with whom you have limited contact or encounter only once (staff members at a catered affair you attend out of state).
Regardless of the duration or frequency of contact with these individuals, we can use everyday conversation as an opportunity to educate them about the seriousness of being glutened if you have celiac disease.
For example, when ordering something at a restaurant, coffee shop, or bar, after you take the time to explain how your food/drinks must be handled to avoid cross contact, you can take an extra moment or two to explain the repercussions if this is not handled correctly. You may even choose to tell these individuals that gluten is hiding in many places other than just food and drinks, and elaborate on how careful you must be to avoid becoming sick.
When we educate individuals about the seriousness of gluten contamination, they will each likely tell other individuals, who will in turn tell others, in exponential ripples. This is a powerful way in which we can protect one another and spread awareness and knowledge.
Raising These Issues in Other Contexts
Instead of limiting these conversations to locations where we are consuming or purchasing food and beverages, we should raise them in other situations and contexts as well. Consider the possible ripple effect if we talk about these issues at the dentist’s office, hair or nail salon, wellness spa, schools and other educational institutions, doctors’ offices (all specialties), entertainment venues, religious settings and community situations such as town hall meetings or local library events.
Each of us is equipped to speak about personal experiences, articles we have read, situations we have heard about from other members of our gluten-free community, and I truly believe we owe it to ourselves and each other to spread the ripple effect of information.
Ensuring Prompt and Proper Feedback and Awareness if You Are Glutened
If we end up getting sick from accidental gluten ingestion, we owe it to ourselves and each other to provide prompt and proper feedback to the source. If we track everything we consume and where it came from, we are better able to recognize the source of contamination. If we can determine the source of accidental ingestion, we can then contact the establishment (restaurant, bar, market, event venue, hair salon, dentist office, etc.), and explain the situation and our personal outcome. This enables the establishment to correct any bad or misleading practices, and helps to spread the ripple effect of information and awareness.
I feel confident that having learned of my story, my dentist and her staff will pay more attention in the future to the needs of patients with celiac disease. In fact, she recently informed me that she will be overhauling the products she uses in her entire office to ensure they are gluten free.
Dental/Orthodontic Exam Recommendations
Follow these suggestions to ensure you are safe at any future dental and/or orthodontic appointments.
- Communicate with your provider: Explain in depth about your health concerns and be ready to answer any questions your provider may have about celiac disease. Ask questions and voice any concerns you may have. Make sure your provider highlights your diagnosis and health concerns in your medical chart and remind your provider that you have celiac disease at the beginning of every visit.
- Be your own advocate: Request information about the laboratories and/or manufacturers they use for all products you come into contact with, so you can check ingredient safety yourself.
- Know your options: If you are unsure or uncomfortable with any ingredients used in your care, or about your provider’s understanding of your health concerns, you have the right to find another provider.
As members of the gluten-free community, we have the power to advocate for ourselves and one other. Speaking up, sharing information and personal stories, and spreading awareness and knowledge helps all of us to live on in wellness.