Another One Bites the Dust: My Celiacs Diagnosis Story
Me again.
While I still haven’t fully come to terms with my Celiacs diagnosis, I felt that sharing it with you all might help bring some peace...so here goes nothing!
Being a T1D, I always knew there was a chance I would end up with another autoimmune disorder. I’ve been told countless times over the last 12 years that developing Celiacs was a possibility, but it was one I prayed would NEVER happen to me.
In the Fall of 2016, while on the Disney College Program, I started to notice that I could no longer enjoy ice cream. Weird, right? My stomach would bloat and ache for hours after eating it, so naturally I assumed I was mildly lactose intolerant. Seeing as how ice cream was really the only primarily milk product that I ate, I decided to give it up and move on.
Unfortunately, things kept going down hill. I started to notice that I pretty much couldn’t eat ANY food without becoming sick. As someone who lived off of Chick-Fil-A for all three meals of the day, I started to think that perhaps it was my unhealthy lifestyle that was making me sick. After all, fast food for every meal, followed up by goldfish, crackers, and other gluten filled foods was most definitely not good for me.
In early 2018, after a year of pain that seemed to be getting worse and worse, I decided to spend a few weeks cooking every meal at home.
Even with cooking at home and eliminating junk foods, I was still in pain. I was eating plenty of fruits, veggies, and grains, but nothing was helping. I continued to both feel and be sick after every meal. I also started to notice some other weird symptoms. My anxiety was gradually getting worse and worse. I was forgetting things and having trouble focusing. My whole body would ache as if I had arthritis, and I found myself feeling overly emotional pretty regularly.
“I think I have celiacs.” I told my mom in mid March of 2018. My mom, of course, tried to be incredibly positive and convince me otherwise. “It’s probably because you eat so bad.” She would say.
But, I knew. Something inside of me knew that there was more to it than just poor food choices.
As the symptoms continued to get worse, I decided to let my NP know, during my T1D check up at the end of May, that something was wrong. He opted to do some blood work to check for celiac antibodies. However, when the results came back, I was showing very low levels. In fact, they were so low that most people I spoke with felt sure that I did not have celiac disease. But, when I read the results, I sobbed, because as I said….I knew.
We planned for an Endoscopy at Atlanta Gastroenterologists as soon as they could schedule me, which happened to be at the end of July. After the procedure, my doctor informed us that she was fairly certain I had celiac damage in my small intestine, but she would send the biopsy off and call us with the results.
August 1st, 2018, I received a call notifying me that I had been diagnosed with Celiacs Disease and needed to immediately begin a gluten free diet.
I recognize that this is far from the worst call a person could receive, but to me, it was devastating.
“WHY do I have to have something ELSE wrong with me?”, “What did I do to deserve this?”, “Now I am just going to be even MORE of a burden on my friends and family.” All of these thoughts and more raced through my mind as I sobbed on the car ride back to Athens for my senior year of college.
“Why me.”
As time has passed I can’t say that I don’t still find myself occasionally thinking these same thoughts and asking these same questions. However, I am slowly coming to terms with this new lifestyle that I have to live while also learning to accept myself again for all that I am and all that I am not. Just as I did with the Diabetes Community, I am slowly finding a beautiful community of people, who also live Gluten Free, that can relate to many of my same feelings.
If I could wish away Celiacs, I would, of course. However, I am thankful to my Celiacs for several reasons:
I am now healthier than I have ever been.
I am forced to branch out and try new foods!
I have found a new passion in educating others on Celiacs Disease...a condition that typically takes 6-10 years to be diagnosed!
I recognize that this post could come off as negative, but I hope that you won’t see it that way...I certainly don’t. It is a piece of my story and I love my story! While it has definitely been one of the more painful pieces, it has taught me a lot and for that I am thankful.
If you or a loved one has been diagnosed with Celiacs, or if you are a person with diabetes that also has celiacs, please don’t hesitate to reach out! I would love to talk with you about your experiences living Gluten Free.
All my love,
Teg