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Monday Mailings #2: Celi-HACKED

This post is a little on the personal and health side, but I would like to share it so that more people know about Celiac disease and my journey with it. Somehow, I managed to go 25 years without being diagnosed, and my Dad went 67. We don’t know if either of his parents had it. Though my Grandfather never showed symptoms, my Grandmother Joyce died in 1995 in her 60s from pancreatic cancer. It is possible that either of them had it, as it is hereditary.[1] Celiac Disease is an autoimmune illness. You can have the genes for it, but they also need to be triggered in order to get it. The triggering is the part that still isn’t understood very well. The body identifies gluten as an intruder, and starts an immune attack on the small intestine. This wears down the villi. The small intestine when looked at under a microscope, is supposed to look like a shag rug. When diagnosed, the small intestine of someone with Celiac Disease will look more like a hardwood floor, depending on how long they have gone undiagnosed.[2] Thankfully the intestines are a pretty amazing part of the body. Once gluten stops being ingested, the intestines get to work right away on trying to heal. The process of healing starts in a couple weeks but can take up to several years. In some people, healing may never occur.[3] There are over 300 symptoms of the disease. Gluten Dude , an amazing celiac blogger asked his followers what their symptoms were. He got hundreds of responses and created this infographic so that people could see many of the symptoms. 

Now that I've provided some background, I want to tell my story of living undiagnosed with Celiac Disease for 25 years, and how my life has improved now that I have been gluten free for six months!

Growing up, I was always the kid with the “sensitive stomach.” This was the case from the very beginning of my life. Breast milk made me sick and my parents had to switch me to a soy formula to stop me from spitting up everything I ingested. On many mornings I would get a stomach ache on the drive to school. One morning, I felt so sick that I raised my hand in class to ask to go to the bathroom, but ended up vomiting all over my desk at school before receiving permission to leave. This was one of the most embarrassing things that happened to me. The funny thing was that after I threw up, I felt totally fine. I was sent home anyway.

This next story is also embarrassing but is a key part of my story. While everyone and their brother was ringing in the new millennium, my mom and I were in the ER because I had the worst stomach pain I had ever felt. Turns out I was extremely constipated. Yep. But life went on and the question of why things had gotten so bad was never contemplated. The doctors and hospital staff did not order tests on me or ask about my diet. The doctor just told me to drink more water. It actually happened again a couple months later.

I was constantly sick from strep throat, to ear infections, and in fourth grade, I was diagnosed with asthma. In 7th grade my Dad was diagnosed with lymphoma of the central nervous system. Despite all his blood testing, he was never tested for Celiac Disease even though he also had significant stomach troubles. All of this was attributed solely to the chemo and other medications. Of note, undiagnosed Celiac Disease has been linked to cancer.[6]

High School was pretty “normal”except that I would get so painfully bloated for what seemed like no reason at all. At that point, I had figured out that eating bread caused me to gain weight, but I assumed the amount of weight I was gaining was normal. In my senior year, I got my wisdom teeth taken out which was a disaster. After the teeth were removed, I got sick with the flu so badly that I ended up with pneumonia and was sick for a good two weeks. I could never figure out why I was sick so much more than my friends. This continued throughout college.

When I began my master’s studies, I got my vocal folds scoped and they found a graneola on my false folds. Probably from acid reflux, they had said. So I started taking PPIs as well as Zantac. About a year later, I started reading how bad PPI’s were for your system and decided to wean myself off them. Anyone who has ever done that can tell you how rough it is. You need to have tums on you at all times because of the acid rebound and it is still miserable. I had never noted the acid reflux before, so I was quite surprised that it kept getting worse. That year, a different doctor noted that I had a swollen thyroid, but the ultrasound came back cancer free and my thyroid levels were normal. Nobody could tell me why my thyroid was swollen. The summer I graduated from my master's I was feeling pretty rough. My nails were cracking and my hair was starting to come out. When I went for a physical, my doctor told me I could stay on my vegetarian diet, but that I just needed to start taking iron supplements. Other than that, I was "extremely healthy." Guess I fooled her pretty good. Six months later, February rolled around and I felt even worse. Working as a restaurant server was taking a huge toll on me, I felt pretty depressed, and I could barely get out of bed. I went back to the doctor and my anemia had gotten worse. The doctor prescribed three iron pills a day. I tried that for a week and just couldn’t do it. I made the decision to start eating meat again, which was really tough for me because I had been veg for a year and a half.

 After a couple months, I felt better but I just kept thinking that something else was up. I put on a recital back home in June, and after my rehearsals I was having extreme pain in my lower neck. It would start at the base of my neck and radiate up into my jaw and ears. I went to the doctor when I got back from Wisconsin. They told me the last ultrasound of my thyroid had been normal, but that if it was bothering me so much I should “just get it removed." What?! Seriously, not happening I thought. I asked if there was anything else it could possibly be. The doctor said it could be Hashimoto’s Disease (a thyroid autoimmune illness) but that this was not likely because my thyroid hormone levels were normal. Nevertheless, I pursued this lead. I searched around the internet and found the book “Hashimoto’s Protocol” by Dr. Izabella Wentz. In the first chapter, Dr. Wentz says that many people that have thyroid problems have Celiac Disease. As such, Dr. Wentz suggests that anyone with any type of thyroid issue should be tested. I didn’t want to jump to conclusions. As recommended by Dr. Wentz, I did a two week elimination diet with no gluten, dairy, sugar, caffeine, or alcohol. By the end of the two weeks I was feeling great. Then I went on vacation, started eating all these things, and again felt horrible.

When I got back from vacation, I immediately messaged my doctor, explained my circumstances, and asked to take a gluten intolerance blood test. She reluctantly ordered the test. I’ll never forget that I was hanging out with my boyfriend Omar when I got the e-mail from my doctor saying that I had tested positively for gluten intolerance, and that I needed to see a GI doctor. I waited two weeks for the appointment with the GI doctor, and in the meantime stopped eating gluten. Again, I was feeling better. But when I met with the GI doctor, he required me to resume eating gluten. This was necessary for an accurate endoscopy. Th GI doctor explained that all the auto immune markers were there especially with my thyroid problem but that he wanted to nail the diagnosis down for sure. I was disappointed that I had to go back to eating gluten, but at the same time I didn’t want to get a false negative on the endoscopy. Over the next two weeks, I tried to enjoy what would be my final cookies and muffins, but really I was just head-achy and scared. I thought my life was over (obviously it wasn’t).  How would I eat gluten free forever!? Omar took me to the endoscopy on August 1, 2017, and right after it was over, Doc told me he could definitely see damage on my small intestines, and the biopsy also confirmed a positive diagnosis.  At last I had a real answer. My gluten free life could finally begin!

When one person in the family is diagnosed, it is highly recommended that every person in their immediate family be tested.[5] My mom and brother both tested negative, but my Dad tested positive. He was disappointed as well and couldn’t believe it! Once the initial shock wore off, he started eating GF and started feeling better within a couple weeks. His fatigue, anemia, and hand neuropathy has all significantly diminished. My Dad has been eating gluten-free for almost five months now and is feeling much better.

I can confidently say that I feel like a whole new person. I feel better. I naturally lost weight within the first two months of eating gluten free. I now wake up in the morning feeling refreshed. The brain fog has worn away. I was dreading the holiday season, but all my friends and family made it so easy for me. They had gluten free things just for me and my Dad! Thanks to everyone who has made this life change way easier than I thought it would be, especially Omar for being there for me during the diagnosis process and always cooking GF for me!

Celiac Disease and gluten free living will be one of the main topics on my blog. Although this is a lengthy post, I think it is a necessary one. Please share with anyone who is struggling with Celiac Disease diagnosis or gluten sensitivity. If you think you might have Celiac Disease, HERE is a checklist you can go through. 

To anyone out there who thinks something might be up with their body, keep digging, asking questions. Nobody knows your body better than you do!

[1] Celiac Disease Fast Facts, Beyond Celiac Foundation, available at https://www.beyondceliac.org/celiac-disease/facts-and-figures/ (last visited Feb. 19, 2018)

[2] Overview of Celiac Disease, The University of Chicago Medicine – Celiac Disease Center, available at http://www.cureceliacdisease.org/wp-content/uploads/FactSheet1_Overview-of-Celiac-Disease.pdf (last visited Feb. 19, 2018).

[3] Treatment of Celiac Disease, The University of Chicago Medicine-Celiac Disease Center, available at http://www.cureceliacdisease.org/wp-content/uploads/FactSheet3_Treatment-of-Celiac-Disease.pdf (last visited Feb. 19, 2018).

[4] See supra note 1.

[5] See supra note 1.

[6] Celiac Disease and Cancer Risk: A Population-Based Study, The American Journal of Gastroenterology, available at https://celiac.org/blog/2014/09/celiac-disease-and-cancer-risk/ (last visited Feb. 19th, 2018)