The Journey Behind My Celiac Diagnosis

So I’ve had this blog for a little over a year now and although my “About Me” page briefly describes my diagnosis, this description doesn’t do it justice. After reading what other Celiac champions have experienced and the horror of their journeys, I felt compelled to share my story in hopes that people don’t feel as alone. Yes, Gluten Free and Glittery is intended to be a blog focused on traveling with celiac disease, but sharing experiences is very important for the celiac community. So here it goes..

Beginning my freshman year of college, I was sick after every meal. It started out as just stomach pains and cramping, but progressively got worse. Sure, I was eating a ton of junk food so I blamed it on this. But every couple of months I would end up with “food poisoning”—so bad that I would end up in the ER. How weird, right? How could I keep getting food poisoning especially when I was eating pizza or pasta? Bad luck, right? Well, between the ER visits, I started having chronic diarrhea and cramps after each meal starting at the beginning of my sophomore year. The pains were excruciating and I was constantly bloated. Fall 2011 was filled with constant migraines and extreme fatigue. My neurologist blamed my spike in migraines on being stressed in college and prescribed a higher dose beta blocker.

Fast forward to Christmas 2011, I spent the evening laying by the toilet, dumbfounded by how I could be so sick. I vowed to see a doctor and I did so shortly afterwards. Doctors have to take family history and I understand that—but as soon as I said my family has a history of stomach ulcers and that I went to a high pressure ivy league, the doctor automatically diagnosed me with stomach ulcers. He instructed me to only eat bagels to “soak up the acid” and add some peanut butter to get more protein. I was sent on my way with proton inhibitors and zofran to prevent vomiting/diarrhea.  I tried to stick with this “tummy friendly” diet and spent Spring 2012 as sick as can be. The fatigue and headaches increased as well as major mood swings and a significant drop in weight. My hair was falling out and my teeth were developing black spots, which my dentist blamed on sodas and coffees—neither of which I drank at the time. The amount of time spent in the bathroom far exceeded the amount of time spent eating. My canker sores were blamed on stress. Everything was blamed on stress. Pre-med overachiever? Yup, has to be the stress, right?

Finally, I realized that all I was eating was bread…what does bread contain? Gluten. My friend in college had celiac disease so the notion of celiac disease  popped in my mind. I made my doctor perform a blood test for celiac—-negative, but that was due to the fact that I had virtually no IgA. Sufficient IgA is required for this blood test. Thus, my results were false negatives. I then proceeded to have an endoscopy/colonscopy after months of me asking for it….Yes, I had to wait months. Granted this was even with one cousin having Type 1 diabetes and the other having lupus and Sjogrens…conditions linked to Celiac Disease!

When I woke up from the colonoscopy, the doctor informed me that the villi in my intestines were completely flattened and she could tell just by looking that I had celiac disease. Yes, my intestines were so damaged that they could be seen by the naked eye. She took biopsies and told me I had celiac disease. The nurse sadly gave me  rice krispy treats to make sure I could hold down food before leaving. After eating them, I had excruciating stomach pains…again. The nurse told me that it was normal after “cleaning out” to have excess gas and pain. Later I found out that rice krispys contain malt..a form of gluten. A nurse who had just been informed that I was diagnosed with celiac disease gave me something with gluten……

So a neurologist, dentist, ER doctors, and general practitioner all blamed my symptoms on something else….I don’t fault them. Celiac disease is not well known in the medical community, but I hope that physicians begin to educate themselves on celiac disease and the symptoms so that more people can be properly diagnosed sooner…

Now, throughout this whole process, I was very lucky because I had the most amazing support system ever (this will be an entire post on its own! stay tuned). My boyfriend was there through it all. He drove me to the ER on more than one occasion and sat there with me as I threw up everything in my system—he has a stomach of steel and a heart of gold. He was the one who made me go to the doctor to get checked out and he took such great care of me. My mom was a hero too—she was there for me through it all even with being halfway across the country at the time. My best friend Lauren was also there the very day I was diagnosed. Support systems are crucial when being diagnosed with celiac disease and I cannot thank them enough.

Well, that’s it for now. I hope that this post will help someone going through this realize that they are not so alone…What is your celiac story?

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6 thoughts on “The Journey Behind My Celiac Diagnosis

  1. Hi Paige. Wonderfully written. It is quite unnerving to write about your personal journey with celiac disease but it is also cathartic. It puts many things in perspective and it validates to yourself that all those years and visits to hospitals etc, you really were not malingering. You really were sick.
    It took me quite some time before I stopped being really angry with our GP of 11 years and a paediatric gastroenterologist: http://glutenfreeandtheaustralianteenager.com/food-for-thought/open-letter-to-gps/
    I did talk with said GP and explained that my son was diagnosed with celiac disease while he had been on holidays and asked why it hadn’t been picked up considering his long history of visits to him for gastro issues. He shrugged his shoulders and told me that he had a 50 year old patient who had only recently been diagnosed…. and at that I stopped listening and he is no longer my GP.
    Diagnosis at any stage in one’s life is traumatic and chaotic but more so when it has been a long time before someone actually listened!
    Importantly, it is so heartening to know that celiacs like yourself, write a blog to make a difference for other celiacs. And your blog is empowering for you.

    Keep at it.

    Liked by 1 person

    1. Thank you for your kind words ❤️ that meant so much to me. You are right: writing this truly helped me and I hope it helps others too. I always felt guilty for being upset with having celiac–especially when people are suffering from cancer! But I’ve realized that this is a traumatic experience and it’s okay to not always be sunshine and rainbows.

      And thank you for sharing your story! I am disheartened to hear what you had to go through, but I admire you for sticking up for your son. He is very lucky to have you as his support system. I’m sorry you had a negative diagnosis experience too!! It infuriates me how heartless (and clueless) some physicians can be. I have a fantastic GI Doctor in Philadelphia who is in charge of their celiac center and I have nothing but happy things to say about him. My GP here in VA on the other hand has been terrible with dealing with celiac especially with comprehending that medications can contain gluten. One ER back at school after suffering from a bad case of glutening told me I would be fine to eat gluten if I just took vicadin before hand to numb the pain–really?! This was an MD! How horrible! I plan to write a blog post regarding my experiences with physicians after being diagnosed–hope you will check that out too!

      Best wishes to you and your family! Thanks for stopping by here 🙂

      Like

      1. I remember a doctor saying to my son post diagnosis, you might be able to get away with having a hamburger every so often. Yep and then 2 days in bed in pain!!! It is a misunderstood disease and people caringly might say, it all depends upon how bad you have it (celiac disease) but they don’t understand that there is no degrees in how bad you have the disease: you have it or you don’t have it and gluten causes damage. There is only degrees in immediate allergic reaction: discomfort, bloating, pain, debilitating pain.
        I look forward to reading your future posts.
        Celiac disease is a tough gig.

        Liked by 1 person

    1. Thank you for reading 🙂 good question!! my favorite brands are as following:
      1) for bread: Udi’s multigrain. I buy the large loaves at Costco! They are normal size pieces of bread unlike the normal Udi’s I seem to find everywhere else that can’t even fit a piece of cheese–plus they are not frozen! Which makes the texture superb 🙂
      2) pancake mix: Bisquick gluten free mix
      3) cake/cupcake mix: gluten free Betty Crocker
      4) flour: cup 4 cup
      5) crackers: crunchmaster multi grain crackers (perfect for cheese or hummus)
      6) frozen dinners: Udi’s, specifically the sweet potato ravioli
      7) mac & cheese: Annie’s gluten free Mac & cheese or Ancient Harvest quinoa Mac and cheese
      8) pasta: tinkyada brown rice pasta

      Whenever possible, I try to find sauces and ingredients that are naturally gluten free to avoid higher cost and lack of variety. Wegmans grocery store is fantastic with its gluten free labeling and most of their sauces are naturally gluten free 🙂

      Do you have a particular food that you are interested in? My list goes on, but I would be happy to offer my suggestions for any you are curious about.

      Like

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