Celiac Awareness

The Diagnosis that Changed My Life for the Better

For those who don’t know, May is #SupportCeliacAwareness month. Given the ignorance about this disease among friends, members of the public I have encountered and even a couple family members, I would like to take this opportunity to inform and educate people about it from my perspective. In this first post, I will share my story of how I came to discover I had this disease. Tomorrow or Saturday, I will post about the misconceptions and occasional difficulties of adjusting to life with Celiac.

For those who have never heard of Celiac Disease, here is a crash course. Celiac Disease is an autoimmune condition in which the body has an adverse reaction to gluten, a protein found in wheat, barley, rye and spelt. When gluten is ingested, it damages the villi of the small intestine. Because the villi are what absorb the nutrients from the food we eat, when villi are damaged, this means that nutrients cannot be absorbed properly by the body, so people with untreated Celiac are basically malnourished. This can lead to all sorts of problems such as sudden weight loss, fatigue, stomach upset, headaches, infertility, loss of hair or teeth, neurological problems and even stomach cancers. It is genetic so chances are if you are diagnosed with it, others in your family have it as well. Right now, approximately 1 out of every 100 people have been diagnosed with Celiac Disease, but because doctors often mistake Celiac symptoms for other things, and because some people just don’t want to know, the actual number of people with Celiac Disease is likely much higher. The only treatment at this time is a strict gluten free diet for life.

Until 2012, I could have been a spokesperson for gluten. I loved it and probably rarely, if ever, went a meal without it. Einstein’s bagels slathered with cream cheese were my favorite breakfast. Lunch was usually a sandwich made with two pieces of this wonderful whole wheat bread, or on weekends something like macaroni and cheese, pizza or ravioli. There was no better way to top off a day than with a dinner of breaded meat and a big slice of cake or a cookie. Ah yes, those were the days and I thought they would never end.

All that changed one day when I got a phone call from my doctor. I have heard from several people who felt miserable for years and saw countless doctors until they found one that finally figured out they had Celiac Disease. In my case, I had been feeling fine, or so I thought, when I started seeing a new doctor as our insurance had changed. I did notice that lately it seemed as if I was always exhausted. I could fall asleep at the drop of a hat. But then again, I had been staying up pretty late working on college projects. Once I graduated and had no responsibilities, I would catch up on my sleep and be fine again, I thought. I have always been prone to migraines, but lately they seemed like they were increasing in frequency and severity. But around that same time, my go-to headache medicine, Excedrin Migraine had been pulled from store shelves because of a contamination issue in the factories that produce it, so I figured maybe it wasn’t that my headaches were getting more severe. Maybe the inferior headache medicine I had to settle for didn’t work as fast, so the headaches just had more time to get worse before the medicine kicked in. Staying up late finishing homework could have contributed to the headaches as well. A couple years earlier, in light of a borderline high hemoglobin A1C test that my doctor feared was a precursor to diabetes, I had resolved to cut back on the sweets—my biggest weakness—eat more fruits and vegetables and walk at least two miles every day. I had lost quite a bit of weight and was feeling great. But second semester of my last year of college, I started noticing that I was always hungry. I would gobble up a huge meal and then feel hungry again almost right away. Many people with Celiac experience sudden weight loss, but I experienced sudden weight gain. There is an added layer of anxiety the last semester before graduation though. I was never in danger of failing any courses and not graduating. I was on track to graduate magna cum laude in fact. But I had this weird fear that something would go wrong the one semester that Mom and Dad invited relatives from out of state and spent quite a bit of money purchasing a dress, and the cap and gown to celebrate. Perhaps I was resorting to emotional eating as a means of coping with this anxiety. As soon as graduation is over, I will knuckle down and rein in my eating again I reasoned.

I had my first physical with this doctor a couple weeks before graduation, and was so unconcerned by these changes that I didn’t even mention them to her. But just to get a baseline, the doctor wanted to do a few blood tests. Since I had to fast for these tests, I decided to get through the graduation festivities and go in for the tests the week after. Two days later, the doctor called to say that one of my tests showed elevated liver enzymes.

My parents and I were puzzled. How could my liver enzymes be elevated? The only thing I knew of that caused liver problems was excessive alcohol consumption, but I don’t drink at all. (To me, alcoholic beverages smell so sickening that I have no desire to ever taste one). The only thing my mom could think of was that the headache medicine might be stressing my liver. We always use the medicine as directed, never taking more than one dose a day, but sometimes even one dose of such medicines can elevate liver enzymes. Rather than speculating though, we agreed to let the doctor order some additional more comprehensive tests.

Then on the morning of June 6, 2012 just as Mom and I were finishing breakfast, the phone rang. Mom saw on the caller ID that it was my doctor calling with the test results. I gave my mom permission to put the phone on speaker so that we could hear the results at the same time as we were both concerned.
I will never forget that moment when we were sitting side by side on the couch with the phone on my lap as the doctor said that the tests showed I was anemic and had high antibodies that pointed to Celiac Disease and may have to avoid gluten which is found in wheat. The doctor said I could continue to eat gluten until I could get in to a gastroenterologist who knew more about Celiac and could confirm whether I had it with additional testing.
Now that I have been gluten free for almost two years, I have gotten in to the bad habit of trash-talking people who I am sure have Celiac but are resistant to going gluten free. But I really shouldn’t throw stones because I entered the gluten free lifestyle kicking and screaming myself. I ate gluten right through breakfast on the morning of July 17 when I got in to a gastroenterologist, and when this doctor looked at my antibodies and said I definitely had Celiac because they were off the charts, I insisted on a “last meal” to say goodbye to gluten after the appointment. (My last gluten meal by the way was one of those giant burritos from Chipotle and an ice cream cone). So as you can see, I would be lying if I said there wasn’t grief involved in giving up gluten. I will elaborate more on that in my next post. But I can honestly say that now that I am used to this lifestyle, I feel so blessed to have had such an observant doctor who discovered I had this condition because I feel so much better. I had no idea how miserable I had been because it happened so gradually, but upon going gluten free, the frequency of my headaches dropped off dramatically, and when I do get them, they are nowhere near as severe as they used to be. Ironically, the couple times I have had severe headaches, we discovered accidental exposure to gluten, such as the time when Grandma made gluten free brownies in a pan with folded corners that were very difficult to clean and thus were full of gluten crumbs. I can stay awake for the whole day, and feel full and satisfied after normal-size meals. I didn’t realize this being that I am blind, but Mom said that my skin color used to look pale and sickly, but when I went gluten free, my color returned too. So if you always feel miserable and doctors haven’t been able to figure out why, you should consider asking to be tested for Celiac Disease. If you have been diagnosed with Celiac but are a cheater, please stop cheating! There will be a grieving process, but when you experience how wonderful it is to not feel sick anymore, I think that like me, you will find that the grief over all the gluten you loved will quickly become a distant memory. If a self-confessed former spokesperson for gluten can give it up, anyone can.

Published by Allison Nastoff

As I write this in 2020, I am 30 years old. I am blind, and Gilbert was my first guide dog. He passed away on December 2, 2020, but I decided to keep the title for my blog as a tribute to him because he will always hold a special place in my heart. In 2012, I earned a Bachelor of Science in Communication with a journalism emphasis, and went back to school for a Paralegal certificate in 2014. I worked for five years at a Social Security disability firm. When the pandemic hit, I did some reflecting and decided to resign from this job and take seminary courses. My dream is a career as a teacher or writer where I can be a blessing to others.

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