Riding the Celiac Wave
Diagnosed 29 years ago at age 35, I have experienced the colossal advancements made concerning the awareness of celiac disease. Compared to 1994, these are truly remarkable times for the celiac community and those with any dietary issues. For example, the labeling of food ingredients has become mandated by law, the availability of gluten-free foods in a local food market has greatly increased, and the vast information online is truly phenomenal. Furthermore, gluten-free menus in restaurants are extremely popular, dare I say trendy. GF meals can even be pre-ordered on flights! Though there is still work to be done, things have gotten much better.
How it all started
The week before Thanksgiving 1994, I began suffering from severe diarrhea, bloating, vomiting, and general lethargy. I lost 17 pounds in two weeks; lab results proved multiple vitamin and mineral deficiencies. I had a severe calcium deficiency, making my teeth very soft. Having no energy, scared, and sick, I was becoming depressed. All of these are symptoms of celiac disease, and in retrospect, I had these minor symptoms since childhood, which was normal to me. Ironically, I was told to eat bland foods, including crackers and bread, to calm my belly literally up until the momentous day of my diagnosis.
Being one of the few fortunate people, I was diagnosed within 2 months of the first visit to a primary care doctor. He referred me to a gastroenterologist who first thought that I had a parasitic infection called Giardia from drinking spring water while on a hike in the Pocono Mountains in Pennsylvania. This new-to-me physician was savvy; he scheduled an endoscopy and did a biopsy of my duodenum. About a week later, while showing me photos in a textbook of the lining of a gluten-damaged small intestine, he explained to me my celiac disease diagnosis. (He had only seen two patients with celiac disease before me.) He told me the “cure” was to eat gluten free; in other words, gluten-free food is my medicine. In just three days I felt so much better. I thought to myself, “Wow! That was almost too easy, there must be a catch.” Then I realized…this is for the rest of my life! I really became depressed, yearning for my days of rye bread and raspberry streusel. I mourned, and yes, I cried.
Celiac disease is an auto-immune response to the protein found in wheat, barley and rye: gluten. Many symptoms mimic other illnesses while some people may exhibit no symptoms at all, thereby making it a long and difficult process to get a diagnosis. Once thought rare in the U.S., it has been found to affect 1% of the population or 1 out of every 133 people.
Celiac disease impacts more than just your gut
Educating family, friends and every physician I came across was a big deal. I stayed away from family gatherings for a bit until I felt more comfortable asking for the accommodations I needed to stay healthy. I always carried, and still do, GF crackers or bread and a dessert of some kind with me, so as not to go hungry when I’m out and about - it is a terrible feeling when everyone else is eating and you are left out, so I find it is best to be prepared.
Going to restaurants was another anxiety-laden affair. I can’t tell you how many times I was served croutons on my salad after a lengthy conversation about how I cannot eat bread, wheat, etc. - Folks had no clue back in the ‘90s. Even using gluten-free alert informational cards did not seem to help as some servers and chefs thought I was just being difficult or they just did not care to abide by my request. Sadly, any kind of travel also became a nightmare. I would have to plan, purchase, and pack a separate bag with my gluten-free food. Thankfully my husband helped advocate for me during our travels, as it became exhausting to explain celiac disease everywhere we went.
I have seen amazing progress over the years in celiac disease research and a huge increase in awareness and availability of gluten-free foods. Eating gluten free since 1995, I never imagined that I would be able to go to my local grocery store and purchase such tasty options. If GF options were available at all, they were few and far between at health food markets - the quality was horrible and the expense was exorbitant. Previously, I had to ship in my breads, pasta, and other foods from Canada (there were maybe two bakeries in the United States that shipped gluten-free bread at that time). Now, there are shelves full of numerous brands of GF bread, crackers, cookies, pasta, etc. There is every combination you could think of for gluten-free flour mixes for cooking and baking.
However, what hasn’t changed is the cost.
The high price tag still makes this medicine (GF foods) inaccessible to lots of people. However, the cost of not consuming this medically necessary medicine is much higher when it comes to the health and well-being of individuals with celiac disease.