By Rachel Sircy
Well, the New Year has come and it’s the time of year to make lists of resolutions for the coming 12 months. For celiac patients, we have a long list of resolutions that are often hard to keep. A couple of weeks ago, I was having a conversation with my new primary care physician about how difficult it can be to really live gluten free. It seems to me that every time I think that I’ve got the gluten free lifestyle mastered, I find something that I’ve been doing wrong, or that a company that I trusted has changed their manufacturing practices or that I’ve made a bad choice when faced with hunger and eaten something that I knew I shouldn’t.
I also told my new doctor that it’s enough to make me cry sometimes that I cannot find a physician who knows a good deal about celiac disease. Ever since the first day of my diagnosis, I have longed for someone who could guide me through this tangled minefield of gluten intolerance. My doctor suggested, of course, that I try the myriad websites dedicated to the gluten free diet. Of course, I do often consult internet sources for the latest research on celiac disease and gluten intolerance. I pointed out to my doctor that sometimes the information that you look for online can lead to conflicting answers and contradictory advice. What one person says is safe is condemned by another person. Who is right? Most of the time, I try going by my own gut and common sense and hoping for the best.
After thinking these things over, I’ve come up with some ideas that I want to follow through with in 2019. I say that I want to follow through with them because, if I’m being honest with myself and with you, I have to admit I have a real problem with follow-through. Maybe you’ve noticed that if you follow my blog posts. Oops. But, I hope this year to be better than I was both physically and mentally than last year and I think these three resolutions will help me to do that.
- Actually keep a food/symptom diary. (Again, I’m using the word “actually” because I’ve started about a thousand food diaries and just ended up letting them go.) My doctor told me how important this is when I was describing some of my current symptoms to him. He said that it’s impossible to find out if the new symptoms I seem to be having an issue with are truly new without a diary of what I’m eating and what I’m feeling both physically and mentally. He said that illnesses often build on one another and that he cannot get to the root of my issue without seeing the patterns behind what I’m eating, thinking and feeling.
If you are like me, you may want to try writing everything down by hand (I’m pretty old school myself). However, if you browse in your phone’s app store, there are a ton of apps that provide a place for you to log what you’ve eaten, the medications you’ve taken and how you’ve felt throughout each day. Some of them, like Symple, can actually take the data that you put in and create a report that you can give to your doctor.
- Use reliable sources. My second resolution is to make sure that any information that I get on celiac disease – and especially any that I give to you – is from a reliable source. Of course, I really try to do this anyway, but I intend to be extra careful this year. I tend to trust articles from The Celiac Disease Foundation, the Mayo Clinic, The Cleveland Clinic, Harvard Health Publishing and other articles published by trusted medical clinics. I vow to try never to put anything into this blog that has not been put out there by a source that we can all trust. Suzy Q. Blogger’s opinion on the safety of a new brand of potato chip is something that I will try not to put on this website without thoroughly researching it first. My doctor also pointed out to me a website that I was previously unfamiliar with called UpToDate.com. He said that it is a website with research-based articles that can be used by patients, but that is also a favorite place that medical practitioners go for the latest information on a number of subjects, including celiac disease. So, I will probably be using information from this website as well.
- Share knowledge. My last resolution is to push ahead and make more information available for everyone with celiac disease everywhere in the world. Think about it. If all the celiacs across the globe decided that they were really tired of being sick and of not being taken seriously by their doctors (if that is the case for them), we could create a huge demand for more research. Wouldn’t it be great to have answers to all of our questions? Perhaps we will not have all the answers in our lifetime, but more research now ensures a better quality of life for future generations of celiacs.
So, how do we do this? Well, the place that I’m starting is with my choice of a personal care physician. My old PCP was a very nice man, but he knew next to nothing about celiac disease and he really didn’t seem very interested in learning much about it or helping me get better. I’ve already taken the first step to fix this situation and that is that I have a new doctor. I believe this doctor is a better listener and is willing to actually help me figure out how to manage my condition and get well. (Isn’t that funny? When I was a kid, the only thing that came to my mind when I thought of being well was that I was definitely not going to get out of going to school. But now, the idea of being well haunts my dreams. I long to feel better. Don’t you?)
The second step that I’ve already begun to take is joining the iCureCeliac patient registry. This is a huge database of celiac patients that is being created by the Celiac Foundation. Once you create your patient profile, you take a long, long series of questionnaires about your disease, how you were diagnosed, your desired outcomes (like do you want celiac to be cured? Would you take medicine if it would mean you could eat whatever you want?). The purpose of this database to give researchers ideas on how to direct their research. Per their website: “Sharing your personal experience living with celiac disease helps researchers better understand the diverse and complex ways this disease impacts the lives of patients like you and your loved ones.”
You can join this data base at: https://celiac.org/icureceliac/
I truly believe that if we all push together by firstly taking charge of our health by managing our diets to the best of our ability, staying on top of the latest medical research and pushing our healthcare providers and the medical research community for answers they seem to be unable to give us at present, we can change life with gluten intolerance for ourselves and for our children for the better.
Happy New Year!