I recently asked an online celiac support group what messages they would like to send to an audience of healthcare professionals. I was really surprised at one of the answers.
People wanted a formal letter from their doctor to their family members explaining that celiac was a real thing, and that gluten cross contamination was a real problem. This is in part because I asked the question just before a major US holiday (Thanksgiving). There are a lot of people out there with celiac disease, who get really sick when they eat food that has been contaminated with even the smallest amount of gluten. I find it really sad when family members need a doctors note in order to believe the severity of the issue.
Thanksgiving is a difficult holiday for those with celiac. It is also known as “turkey day” as turkey is the traditional meal. Unfortunately, turkey is usually prepared with stuffing that is made from bread. If the turkey is stuffed with bread, then there is no way to avoid cross contamination. Another problem is that many turkeys are injected with things like chicken stock to make them more flavorful and moist. Again, these injections can contain gluten, causing the entire bird to be cross contaminated. Thankgiving is a social time, a family time, but also a really stressful time for those with celiac who end up being unable to join in the feast – especially when family members don’t appreciate that this isn’t a dietary fad, it is a real disease with real long term impacts.
I am also sad that there is very little information on celiac disease provided by healthcare providers. There is no one specialist that treats the disease – rather you have a smattering of specialists based upon the different manifestations of the disease – but typically you see a GI specialist for the gut manifestation and a dermatologist for the skin manifestation. That is, if you live someplace where you have access to specialists. Otherwise, you see your GP/PCP.
But GPs don’t necessarily have all the information about celiac disease. This led to another area of concern. Some GPs just say “stop eating gluten” and leave it at that. They don’t talk about the potential long term impacts of “cheating”. They don’t talk about (or know about) what might happen if someone with celiac keeps eating gluten. They also don’t talk about how to stop eating gluten. I am trying, but this isn’t an easy process, and I’m highly educated. I have access to some of the best healthcare in the world. And yet, as I detox from my diagnosis (which requires eating gluten), I still find myself getting accidentally exposed.
And so, this Thanksgiving if someone in your family says they have celiac disease, please be considerate. Think about providing some portion of the meal that is not cross contaminated, so that they too can safely partake in a Thanksgiving feast.