free from gluten | dairy | soy | egg | peanut | tree nut | shellfish | seafood
My EoE Experience
Symtoms
For as long as I can remember, friends and those who ate with me remarked on how slow of an eater I was and it took me years to figure out that this wasn't just because I just tended to take small bites. Rather, my unconscious was having me eat slow and small in order to reduce the risk of trouble swallowing. Other symptoms I thought were typical and only started to question after I turned 18, these were chest pain, heartburn, acid reflux, and baby barfing with every meal. But senior year of high school, I noticed myself needing to have something to drink, regardless of what I ate, in order to force food down my throat and avoid it getting lodged. Quickly, trouble swallowing turned into choking. First, at family Thanksgiving senior year. Second, my first week of eating resident hall dining food, how ironic. Then, like clockwork- once a week.
Updated November 15th, 2021
Diagnosis
After numerous incidences choking and regular bloody noses, which I thought were affiliated but turned out to be a much simpler diagnosis, I finally reached out to my doctor who put in a referral to gastroenterology within 24 hours. In January 2020, I was seen by my wonderful doctor, Dr. L., who had blood tests taken as well as performed an upper endoscopy. Done. I had a white blood cell count of 31 and was diagnosed with EoE and prescribed Budesonide to take twice a day. The blood results were almost normal, with elevated levels in ANA, which is sometimes linked to an autoimmune disease but Dr. L. wasn't concerned.
Setbacks
Unfortunately, being the irresponsible 19 year old college kid I was, I took the Budesonide unreliably. Though, the first month I was religious about it and within a few weeks I could eat better and with the least amount of pain I'd ever felt. But come summer, I hadn't taken it in weeks and couldn't get myself back on track. I try not to let my body rely on medication to help my body and mind learn to fight off issues on it's own, obviously I only let this rule go so far. When headaches take a turn for the worse and cramps become overbearing, of course I'll take Ibuprofen. But in general, I try to tough it out. Well the combination of avoiding medicine and lack of responsibility resulted in symptoms coming back and choking one a week again. I let this go on for too long and in August of 2020, I reached back out to Dr. L. to hear about other treatments as I remembered him mentioning the elimination diet back in July.
The 6-Food Elimination Diet
After a phone call and referral to a R.N, Melissa Phillips, I was on my way. Starting early September 2020, I started the 6-food elimination diet. This restricted me from eating dairy, eggs, soy, wheat, peanuts, tree nuts, shellfish, and seafood as well as eating out at nearly every restaurant because of cross-contamination. You see, my diet up until this point was ramen, cereal, pizza, mac n cheese, Subway, Culver's, and maybe a smoothie here and there. I had not eaten a salad in my life nor many vegetables, and fruit entered my system only a few times a week. Initially, the cravings were overwhelming and I would ask my friends to smell their pizza to get some sort of satisfaction, strange I know, very strange. I remember the first day grocery shopping after starting this diet caused me to have a mental breakdown in Target and feel defeated when I spent three hours reading label after label. But this, like many new challenges, got better. I started remembering brands to look for and learning how to be efficient. Such as most things with "creamy" as an adjective will have milk, and most junk foods are off limits. After a month, the food cravings stopped when I was sober but were still strong when under the influence. Then, about six weeks in, the cravings stopped all together. This doesn't mean I didn't want to get in the Chick-Fil-A drive-thru but it was increasingly easier to not feel envious or frustrated when seeing my friends get to eat Cosmos Pizza at 2am. My roommates and friends showed and sent me recipes of foods I hadn't heard of before but came to be staples: cauliflower gnocchi, risotto, and tolerable salads. For those two months, I was back to being able to eat without needing a drink, not choking once but still difficulty swallowing foods every once in awhile.
True Emotions
If anything, I wish I would have recorded my day to day thoughts. Some days, I felt great and had the emotional capacity to create three full, nutrient rich meals but most days, I dreaded knowing I had to spend time in the kitchen and would only eat a bowl of oatmeal and microwave popcorn. A few days a week, I was determined to fuel my body well and other days, I ate an entire bag of Twizzlers and called it a day. What I'm trying to say is, it's not easy but I know in the end it will be worth it.
My daily emotion tracker would
looked similar to this
Noticeable Body Changes
Of course, after shocking my body by providing it with nutrients for the first time in 20 years, my body reacted positively. The first thing I noticed was my weight. Because I hadn't eaten vegetables before this diet, my tastebuds weren't satisfied with only apples and salads so I ate a lot of potatos and chicken which allowed me to maintain weight when it was assumed I would lose 10 or more pounds. The next thing I noticed was my skin, hair, and nails. I had the most control over my acne since taking Accutane in high school and it started to radiate, feeling soft and looking healthy. My hair, eyelashes and eyebrows included, grew quicker and softer. My nails were also growing quicker but stronger too. A not so obvious or expected change was my bowel movements. Not to be TMI, but I started having regular, healthy, and predictable poops. The pros definitely outweigh the cons, but there were a couple negative side effects. First, I was tired. I'm not sure if it was not eating enough or just missing a few key nutrients, although I do take a calcium supplement and Women's One a Day to combat this. The second, I stopped menstruating. The week after I started this diet, I got the Paraguard (Copper) IUD, a non-hormonal birth control that is supposed to let you still get your monthly period and a typical side effect is heavier flows- not no flow at all! I'm headed to the OBGYN clinic within a week and will keep y'all updated on if this is a larger issue.
Second Endoscopy
On November 23, 2020, Dr. L. completed a second upper endoscopy to track progress and get an eosinophil count. Normally, what he would have hoped to see was little or no inflation and a smaller eosinophil count but regrettably, the opposite occurred. There was more inflation, as well as a white blood cell count increase from 31 to 34. In a normal EoE case, I would've reintroduced shellfish, seafood, and peanuts back into my diet and recorded my symptom changes if any. Since there was no improvement, I was given two options, 1) go back on Budesonide or 2) add more food to eliminate. Because I'm in a great life situation- cooking for myself, not supporting a family, having a personal kitchen, have access to numerous grocery stores, etc., I went with option 2. Starting January 5th, I will be eliminating chicken, corn, potatoes, and legumes to my foods to avoid for two months. Come March 5th, I will have another endoscopy and will reevaluate if the results are better. If you remember reading about the elevated ANA blood test result earlier on this page, Dr. L. put in a referral to rheumatology to double-check that an underlying autoimmune disease isn't the cause of my EoE. I will be hearing back by the end of 2020 on the results of my appointment with the rheumatologist.
Update: The tests for an autoimmune disease came back negative, which is a relief.
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The next step is to add to the elimination diet, which will leave the list of foods to avoid as dairy, soy, wheat, eggs, nuts, seafood, potatoes, chicken, corn, and legumes. As well as not eating out, only preparing my own food in hopes to eliminate cross-contamination. In mid-March, I will get a third endoscopy.
Third Endoscopy & What's Next
As I sat on campus, laying in the grass with a good friend, I received amazing news: the upper endoscopy on March 27th received results of an eosinophil count of ZERO! Essentially this narrowed down the playing field for my possible trigger foods, knowing that all contenders were eliminated. This news is encouraging and since then I have been able to reintroduce chicken, corn, legumes/lentils, and peanuts (two weeks at a time per food) without symptoms appearing. Next week I will try seafood. This is all quite happy, but I do want to be fully honest as it's important to understand this journey is not this straight forward very often as well as I have had my own hiccups and mistakes in following the diet. After cutting out restaurants the first week of January 2021, I have since "relapsed," for lack of a better word, more times than I would like to admit. Especially one weekend about a month after the new restrictions, a few friends and I headed to a restaurant where I proudly disobeyed the diet, ordering a burrito containing nearly every allergen. Then a few times between then and now, in the past two months, I have eaten mac n cheese, pizza, Taco Bell, and Twizzlers. Less than 5% of the time, the id in my brain is overbearing and I give in but the other 95% remains strong.
Endoscopies 4-7 & my Future with EoE
After long, tedious spring and summer of 2021 with food introduction and multiple endoscopies guided by my dietician and doctor, I am happy to announce I know what my food triggers are. In timespans of four weeks, I introduced two food groups at a time, starting with seafood and shellfish and followed by an endoscopy. Then another four weeks went by, I introduced egg and peanut. Another clean endoscopy! After introducing soy and dairy, my eosinophil count was back up to 32. In response, I cut dairy out again and was scoped four weeks later. Zero eosinophils! Mission accomplished, one of my food triggers is dairy. The last food group I introduced was wheat and the result was the same as dairy. The last and final trigger was found. Going forward, I will continue to post foods that are free from the top 8 allergens (not just wheat and dairy,) but feel relieved, overjoyed, and grateful to have finished the 6 Food Elimination Diet process successfully, albeit it was a year of trial and error and drained energy.
My Gratitudes
I encourage each of you to recognize and even write down your gratitudes for the day or week. With this diagnosis in mind, I'm thankful for many things.
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The support and expertise of Dr. L., R.N. Melissa P., their team, and having all of UW-Health in my backyard, as it ranks one of the top 20 healthcare system in the U.S.
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My parents' unconditional love as I prove to be an expensive child and their ability to have great healthcare insurance and monetary funds to pay the adored medical staff at UW-Health.
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My roommates and friends for their help in finding new recipes, borrow their cars to take grocery shopping, discovering foods that I can eat, and making "Claire-friendly" meals.
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The ability, money, and time to explore new grocery stores and recipes on a college-budget. Luckily, the two places I get to call home, Madison and Fort Collins, are alike in that the residents value their health which results in the demand for robust food supply and a variety of grocery stores.
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I am alive, I'm otherwise healthy, and I'm having fun!