“How can a person get sick from something like bread?”
“There’s nothing to eat if I can’t have bread and pasta!”
“Why on earth does that have gluten in it??”
“What is gluten anyway?”
I know we’ve all said these phrases at one time or another. For some of you it might have been decades ago, for others it might have been last week. I muttered those words for the first time nearly seven years ago after my celiac disease diagnosis.
Like many of you, that is not the beginning of my story. More than fifteen years earlier, when I was in tenth grade, I was feeling a little run down. My Mom took me to see our family doctor and after a blood test, we found out that I had mononucleosis and was extremely anemic. People think that having both of those, you would barely be able to function. However, I was busy playing basketball on the school’s team 4 days a week, and kept up with all my homework despite of this. When you are tired all the time, it doesn’t seem odd because it was my normal. You’d think that would be when doctors were tipped off about my celiac disease, but instead I had doctors put me on iron supplements, 3 times a day, for months. Once my iron levels were up, they would say that I could cut back on the supplements. As soon as I stopped taking the supplements, my iron levels would begin to drop again. That resulted in me being put back on iron pills until the iron levels rose, and discontinuing them when the numbers were good again. This continued for a while, and eventually I just stopped going to the doctor, because I knew what they were going to tell me.
I continued on with my life – having low iron levels was a normal for me. Seven years ago I went to donate blood and after doing the finger prick test at the beginning, they sent me to talk to one of their nurse practitioners. He told me that their testing revealed that my iron numbers were extremely low. He was quite concerned about how low they were, and told me to go home and make an appointment to see my family doctor.
This time when I went to see my doctor, he mentioned another thing they were going to test for while checking my iron levels. They were going to do a test for celiac disease. At this point, I was beginning to have other symptoms of celiac disease, like sore joints and digestive issues, even though I didn’t know that’s what they were connected to at the time.
Did you know that, according to Dr. Alessio Fasano, anemia is still the most common way celiac disease presents itself today?
After a positive blood test, the next step was the small intestine biopsy. I don’t remember much from that day, but I do recall being asked if I wanted to be put under for the procedure. I hadn’t known that was an option – of course I wanted to be under! When I was waking up after the procedure I remember a nurse looking at my charts and saying “boy, I hope that’s not what you have”. What she didn’t know is that being diagnosed with celiac disease was a huge blessing in my life. A lot of the problems that I had been living with most of my life could be corrected simply by changing what I ate. I didn’t need to undergo any surgery. There are no pills I needed to take for the rest of my life. As far as I was concerned, it was an easy fix.
Well – Easy was the word I used until I went grocery shopping for the first time after being diagnosed. Armed with a printed list of ingredients that I should now avoid, most of which I couldn’t even pronounce, that first shopping trip took about 3 hours. Stopping and reading each and every label, and then trying to figure out whether they were all safe to eat. I know you can relate – that first shopping trip is a nightmare. The second time I went, I didn’t bother to buy anything new, I just went with the things that I had OKed the week before.
Thankfully – things have gotten a lot easier from that first shopping trip. Instead of the health food stores carrying only one brand of gluten free bread, which I refused to buy because it resembled a brick in both looks and taste, I can now buy a variety of breads, rolls, and bagels at the grocery store. I will never forget my first gluten free bagel. A few months after my celiac diagnosis, we attended a gluten free market put on by the Canadian Celiac Association. It was like a dream come true. After spending so many months of being so diligent, reading the label on everything I put in my mouth, I could walk around and sample all the different gluten free food without worrying. Udi’s was an exhibitor there, and after sampling their bagels, I was amazed. I hadn’t had good bread in months, and those bagels were so soft and chewy, I nearly cried. Even my husband, who does not have to eat gluten free, loved them. We asked if it was possible to buy some bagels, but because they were at the show as an exhibitor only, they did not have the necessary paperwork that they required to sell in Canada. Instead, they gifted me with a pack! Being a newly diagnosed celiac, that pack of bagels was treasured. Thankfully, in the last seven years, finding Udi’s products has become a lot easier. Any time I want to enjoy a bagel, or a grilled cheese sandwich, I just swing by the gluten free section of the grocery store. Seven years ago, I couldn’t imagine the grocery store even having a gluten free section.
Through doctors being made aware of the symptoms of celiac disease, and knowing to test for it more often, more people are discovering that they have celiac disease. Right now, it is estimated that 1 in 133 people have celiac disease, but of those 133, 87% of them are not diagnosed. It took me over 15 years to be diagnosed, which is not uncommon. The average amount of time that it takes people to get diagnosed is 4 years. Getting diagnosed early is important, because undiagnosed celiac disease can lead to a slew of other problems, including other autoimmune disorders, osteoporosis, neurological problems, and even cancer. This is also why it is important to not “cheat” on your gluten-free diet once you have been diagnosed with celiac disease. It is much more than having digestive issues, joint pain, or a foggy brain for a few days – the damage to your intestines can take months to heal.
This is my gluten free journey. Everyone’s gluten free journey is different. With celiac disease having over 300 symptoms, no two patients will look the same. I’d love to hear about your journey, so please leave me a comment telling me about it. Did you exceed the 4 year average to get a diagnosis? Were you diagnosed after a traumatic event? Have you encouraged family members to be tested? Maybe you had no symptoms at all (yes, that is possible). What’s your story?
Learn more about living gluten free! Visit http://udisglutenfree.com/community
This is a sponsored conversation written by me on behalf of Udi’s Gluten Free. The opinions and text are all mine.