People living with celiac disease and their families are at the heart of everything we do at Beyond Celiac. Last year, we started the Patient and Family Advisory Council (PFAC) to help guide our work and make sure we are meeting the needs of the community.
Each month, we’ll introduce you to members of the PFAC so you can learn more about people just like you who help to drive our work.
What is your relationship to celiac disease?
I have been diagnosed with celiac disease since February 21, 2011
Can you tell us a little bit about your path to diagnosis?
I started not to feel well in 2010. I often was very exhausted and I had rashes and dry skin patches. I saw a doctor for the exhaustion and he prescribed anti-narcolepsy pills. I saw a dermatologist for the rash, and he prescribed some cream. I had pins and needles and numbing, so the doctor thought I had nerve damage!
The exhaustion and rashes did not go away and, by late 2015, I was so tired and out of breath all of the time that I could not make it up the second flight of my house without feeling lightheaded. Then the pains started - stomach pains, gas pains, pains in my back, my joints, fingers, etc. I honestly was trying to figure out what the issue was on my own, thinking it was something I was eating, but what? One afternoon, I went to use the restroom and noticed there was blood when there definitely should not have been.
I went to a new doctor who was very concerned from the start and began to run a battery of tests. When my vitamin levels came back, she was in shock and told me I was malnourished and severely anemic. Shortly after the results came in, she sent me to a gastroenterologist who said just from my symptoms he felt I had celiac disease, but needed to do blood work and have a follow-up endoscopy. Within a week of that appointment, I was officially diagnosed with celiac disease.
I feel lucky because my journey to diagnosis was only a few short months compared with some who go years without knowing what is wrong. My experience could have been a lot shorter if I had been more vigilant about seeing doctors and not waiting until something like bleeding occurred.
Can you talk about your life after diagnosis and your experiences living with celiac disease, both the successes and the struggles?
Successes: Life after my diagnosis was so much better! After about two weeks, I started to feel my energy come back. I could stay awake past six p.m., the aches and pains were disappearing and the rashes were clearing up. One of the greatest things was to feel the brain fog being lifted. I really felt like a new person, and I kept thinking “this is life; this is how I should feel.” I was able to start working out again and I felt I was regaining my happiness.
Struggles: I am lucky that my family and friends have always been very understanding and supportive, so I never felt a struggle there. However, I do love to go out to eat. At first it was very frustrating and some days it left me feeling sad to navigate what I could not eat, having to say goodbye to my favorite pizza or Italian restaurant, worrying about cross-contact, feeling alienated at parties and gatherings. There was also the process of learning how to read labels. There were a few cross-contact incidents until I learned what I should be looking for and how to read labels properly.
In your opinion, what are the biggest flaws of the gluten-free diet?
Personally I feel like the biggest flaw in the gluten-free diet, is it being called a gluten-free diet. I never tell people I am on a gluten-free diet because then it sounds like it is a choice. I feel like the word “diet” places less importance on this being a legitimate medical issue. I tell people I have celiac Disease and I have to eat gluten-free. My hope is that we can educate our community to replace the word “diet” with something else.
What are your hopes for the future and what changes do you wish to see in the celiac disease field?
My hopes for the future are greater education and acceptance that celiac disease is something serious. That it is not simply a food allergy or a fad. There needs to be a way to get the point across via different media platforms that celiac disease is as serious any other disease.
I also hope that the FDA puts further restrictions on what can be labeled gluten-free. There are a lot of terms being thrown around now, like “cleaned” and “separated,” and that is definitely confusing.