|
I'm not sure if you've heard but I am FINALLY 21. Navigating gluten free alcohol is a whole new world for me and has been a little difficult. When I was a waitress at home, the bartender said to me "make sure you ask if bartenders clean their taps before you order a drink. There's so much cross-contamination in our taps." It made realize that it's going to be a lot more difficult for me to go out drinking unless I order a canned seltzer. Make sure that when you are going to bars with Celiac or any other allergy, you are sure that there is absolutely no cross-contamination. For example, think about the taps, shakers, tongs, fruit being put in your drink and what has touched it, every syrup is gluten free, etc. Do not feel embarrassed or nervous to ask your server or bartender as many questions as you feel necessary when you go out to drink. I personally look up as much information as possible on my own and then ask questions after.
Most vodkas are distilled which make them gluten free. Even if they are made with wheat, rye, or barley, pure distilled vodka, tequila, whiskey, bourbon, gin, is gluten free. Gluten Free Alcohol:
0 Comments
 I have had some issues with my health lately and one of the main questions I've been asked is "do you think this is related to your Celiac?" Therefore, I want to talk about autoimmune disorders because many people think that Celiac Disease is just an "allergy" to gluten, not a disease...? Nobody realizes that this is an autoimmune deficiency .... this means that my body is open to any sickness/new disease at any point in time.
An autoimmune disease is when you're body attacks healthy cells, tissues, and organs which weakens the bodily functions and can potentially be life-threatening. There are over 100 autoimmune diseases, including Celiac Disease. Most of these 100+ autoimmune diseases have no cure or requires lifelong treatment to reduce symptoms of the disease (ex. type 1 diabetes). A healthy immune system produces antibodies that destroys harmful substances in your body. An autoimmune disorder cannot tell the difference between healthy tissue and harmful agents. Scientists do not know what causes/triggers these diseases, similarly to Celiac. Since I have an autoimmune disease, I get sick faster and easier than someone with a healthy immune system. I am also more likely to develop another autoimmune disease, specifically, a 25% chance. This is called "Multiple Autoimmune Syndrome (MAS)." This syndrome is most likely in people with inflammatory bowel disease. Celiac is considered type 3 Multiple Autoimmune Syndrome, meaning that someone who already has MAS is more likely to develop Celiac and vice versa. 78% of people affected by autoimmune diseases are women because of hormonal changes, reproductive function, environmental changes, etc. Some autoimmune diseases are genetically passed down, others are not. Celiac comes in clusters but is triggered by environmental changes so there is no way to tell who will develop the disease. Celiac disease is not just an "allergy to gluten," as people love to say... (it's a disease). This disease affects my whole body. Autoimmune diseases affect my whole body. I am constantly in a battle with my own body and my own immune system. This disease and every autoimmune disease needs to be taken more seriously. Every time I am cross-contaminated I am slowly killing my body. Nobody wants to feel like this so please spread this blog to help me educate more people on this disease. I am going to speak more about this topic but I wanted to clear some questions that I've been asked.  When I was around 7 years-old, I was diagnosed with paroxysmal tachycardia. This is a condition that results in my heart having an irregular heartbeat. This resulted in many visits with cardiologists and tracking of each heartbeat with my heart monitor.
This condition was not something that I ever grew out of, it was an underlying issue that didn't act up for years. Until ... it came back last year ... worse. I was having heart rates ranging from 60-167 beats/minute. My heart rate would go from 56 beats/minute to 160 in only 2 minutes. I tracked this information with my Apple Watch and wrote it in my notes for my doctor. When I decided to ask my pediatrician about this, she took my blood and then never said anything about it again. Therefore, I ignored it too. About two weeks ago, I went to the doctors office at my school for something unrelated to my heart. When they took my blood pressure, the doctor said that it was abnormally high. She took it for a second time at the end of my appointment and said it is still too high. What I did not expect was the doctor who took my blood pressure is a cardiologist at the hospital near by. This was shocking to me because after trying to advocate for myself at my own doctors and being ignored, these two women found my issue after only three visits. They asked if I could return two more times to get my heart rate / blood pressure checked a couple more times. I agreed. On my third visit, they found that my results were still a bit too high so they did some tests. They first gave me an EKG which came back normal, I then got four vials of blood taken. But, there was one test that changed it all for them. They gave me the "Stand Test" which consisted of my heart rate being taken as soon as I laid down (which came back normal), then I laid down for two minutes and stood up (came back normal), but the last test is standing up for two minutes then getting my bp taken again. This is where my test came back abnormally. After all these tests, they explained to me how that was the test to diagnose "POTS Syndrome", I failed it. Therefore, this all suggests that I have POTS. After finding this out, I was told that I need to see a cardiologist ASAP and I will be going on a heart monitor for two weeks. POTS stands for Postural Orthostatic Tachycardia Syndrome. After doing some research, I have almost all of the symptoms but have never been diagnosed. This syndrome is mostly diagnosed in women between the ages of 15-50 and very common in people with autoimmune deficiencies. (Me, a 20 year old, with an autoimmune deficiency). Some symptoms include nausea, irregular heartbeats and palpitations, tremors, dizzy, fainting, etc. I have all of those symptoms, including fainting, which have increased lately. Prolonged periods of standing worsen this syndrome which would make sense why I have always been so lightheaded after standing for long periods of time. This is an extremely confusing syndrome that I am still trying to learn about since it is so new to me. This just proves how much more comes from having an autoimmune disease. Yes I can't eat wheat because of Celiac, but my body is also fighting off every new disease and syndrome that tries to attack me due to my autoimmune deficiency. "If POTS is autoimmune, it may be more common in people with other autoimmune diseases such as celiac disease." (theceliacmd). I will explain more when I know more <3.  When I share with others that I was diagnosed with Celiac Disease at the young age of two, I often receive reactions expressing surprise. At that time, Celiac Disease was relatively new, and it was uncommon for individuals to receive a diagnosis before reaching their thirties or beyond. This is due to the fact that Celiac Disease is triggered by a combination of environmental factors, knowledge of which was limited back then.
According to research from PubMed Central, various factors such as intestinal infections, the quality and quantity of gluten consumed, intestinal microbiota, and early nutrition may contribute to the switch from gluten tolerance to an immune response (PubMed Central). Regrettably, I wasn't aware of this information until I read the mentioned article. Despite living with Celiac Disease for almost two decades, I continue to learn something new about it every day. Celiac Disease, as I've come to understand, arises from a combination of both environmental and genetic factors. Specifically, gluten serves as the environmental trigger for this condition. Various environmental factors have been found to play a role in the immune system's response, including the amount and quality of ingested gluten, the type and duration of wheat dough fermentation, early infant feeding, intestinal microorganisms, and their changes over time, as well as the presence of intestinal infections and stressors (PubMed). The concept of a disease being triggered by both genetic and environmental factors can be perplexing to comprehend. For those seeking reliable information on Celiac Disease, BeyondCeliac is an excellent resource. According to the same article from BeyondCeliac, while approximately 40% of the general population has genes related to the development of Celiac Disease, only 1% of the population actually develops the condition (BeyondCeliac). The specific factors that cause Celiac Disease remain elusive, and the specific triggers are not yet fully understood. However, it is evident that there is a history of the disease within families, and some individuals may carry the gene without ever encountering the necessary triggers (BeyondCeliac).
- Johns Hopkins Medicine  This is a very personal blog post but I feel like it could help a lot of people. There was an article written by Kate Johnson called "Celiac Disease Linked to Eating Disorders, Even Anorexia." This article speaks a lot about the difficulty of Celiac Disease and unhealthy eating habits. "The fact is, people with celiac have an uncomfortable relationship with food. And it will likely be a lifelong battle. Before their celiac diagnosis, food made them sick. After their diagnosis, food still often makes them sick, and eating remains a high-maintenance affair. Is this fertile ground for an eating disorder?" (Kate Johnson). From personal experience, I developed a very unhealthy relationship with food since I felt that everything I ate (besides home cooked meals) made me very sick. I lost almost 30 pounds during my eating disorder and I had many fear foods (that picture above is me). Looking back, my fear foods were the one's that I continuously got sick from while eating out. For example, pizza and pasta was very difficult for me to eat.
As someone with Celiac, we constantly have to plan our meals ahead of time before going out. Like calling restaurants to make sure they are Celiac safe, packing meals and snacks before going out, etc. In this article, Kate states that it has been found that "people with Celiac Disease are four to five time more likely to have had a previous diagnosis of AN, and they have twice the odds of battling anorexia in the future." As if we don't go through enough ... My extremely unhealthy weight loss journey consisted of starving myself for days, then binge eating once a week. I had no appetite, no interest in eating, and when I did, I got sick after every meal. This issue developed around my junior year of high school and continued throughout my freshman year of college. I was constantly calling myself fat even though I was just skin and bones. I have since then recovered but am still hesitant about the amount of food that I eat and my body image. "Because of the nature of Celiac Disease, there is a great deal of focus on food, so you can become preoccupied by food. If the preoccupation leads to concerns about body image and desire to lose weight, an eating disorder may develop." (Golden). Being in college with this issue and Celiac was very difficult for me since I was getting sick from the dining hall almost every time I ate there. After a reaction at school, I would refrain from eating for about 2-3 days. This was because I was scared of food but also felt that my stomach needed time to heal. (I did this throughout my sophomore year as well). The pain we have when we eat even a crumb of gluten is something I'd never wish upon anyone. I hope this post gives people a better understanding of the seriousness behind Celiac Disease and the consequences that come with it. The article is linked below. It contains experiences of other people as well. https://www.allergicliving.com/2017/12/14/celiac-disease-gluten-symptoms-linked-to-eating-disorders-even-anorexia/?fbclid=IwAR2YpFwSflI9LzvN7_QlE_R3MLhGt6SYpBm2xMjISPID6lyV3E0cK0OhBRY  Hello everyone, it’s been quite a while! Today, while I was at lunch with my nonnie, we were talking about how much easier it’s going to be now that I don’t have to eat at the dining hall anymore. (She came up with the title of this blog) I wanted to tell a story about what happened with the dietician at my school. When I contacted her about my constant reactions after eating at the dining hall … she asked me a mind blowing question. A registered dietitian of UMass Amherst asked me if I have an epipen for Celiac Disease. CELIAC. A DIETICIAN. I was flabbergasted. I said “no ma'am, there is no epipen for Celiac, I have to wait until my reaction ends.” She responded with “okay.” How am I supposed to trust the rest of the campus if their own dietician doesn’t even know about Celiac? So much for a “Celiac certified” school !!! After that comment, my very VERY protective and stubborn parents decided to meet with her. That dietician accused me of “making myself sick” or cross-contaminating myself on purpose. If you knew my parents, you know that comment did not go over well. I was hurt that someone who should be protecting me is claiming that I was doing it on purpose. I can promise, having reactions is extremely painful and the most difficult moments of my life. I would never do it on purpose. She also asked my parents why I never told her that I had an eating disorder because it is something she needs to be aware of. Says who … ? I thought I would share this story because whether or not there are many different dining halls that give “gluten free options,” their own workers don’t even know about the disease. It makes it hard to trust them.
After this conversation, I was given the YCMP plan instead of the dining hall plan. This was because the YCMP plan is swipes of dining dollars which I could use at Blue Wall (a big dining hall full of little restaurants) and many other places throughout campus. I could also go to the dining hall with this plan so it made my life a bit easier. Thankfully, I stopped getting sick after this plan change. I also saved a lot more money since I didn’t have to doordash every meal every day just so I wouldn’t get sick. I will be talking about my experiences at school a lot more. This is just the start of the many issues that I have faced with UMass Amherst Dining.  I want to focus a lot of your attention to the experience I have had at college. I decided to post parts of this essay I wrote for my English class my first semester of freshman year. After writing this, my professor sent it around to the head of all the dining halls in hopes for some change. Enjoy the read and I will be going into greater detail of my experiences in another post soon.
Having Celiac Disease in college is very difficult to accommodate for, I would know first hand. Many gluten free foods do not have all of the nutrients so it is very important that people on these diets fit in as much nutrients as possible. UMass Amherst offers many different options for gluten free diets, but it has seemed like the options are for people on diets instead of those with Celiac Disease. UMass Amherst does not take care of those with Celiac Disease as much as they should. I have found my experiences eating here very disappointing in terms of the quality of the food and amount of cross-contamination. Cross contamination is a very big issue when it comes to those with Celiac Disease. Those with Celiac need separate pans, utensils, cooking areas, plates, and the workers must change their gloves and wash their hands. There are many ways to prevent cross-contamination in an industrial kitchen. One way is to create different unloading docks for the gluten free to prevent any cross-contamination within the boxes. Kitchens must always store gluten free products in a completely different location to prevent mixing the products. Even dust particles from gluten products can create cross-contamination when touching gluten free products so it is important to make sure that the ventilation system will not cause wheat particles to mix with gluten free. Another way to prevent cross-contamination would be to dedicate multiple gluten free chefs in each kitchen, or train each staff member to be Celiac certified. I see so much cross-contamination at UMass Amherst, pretty much in every dining hall. Just yesterday I was at Berkshire dining hall getting a sandwich. The chefs are well aware as to what gluten free is but they do not treat it properly. They wash their hands, change their gloves, and make the sandwich on a new plate for gluten free. But, they take the meats and toppings out of the same containers that they just stuck their wheat hands in and do not take meats/toppings out of certified gluten free containers like they told me when I toured. They also toast the sandwiches in the same toaster as they cook wheat one’s which is a big sign of cross-contamination, then, continue to cut the sandwich with the same knife that they cut all of the wheat sandwiches with. I am very disappointed in the lack of consideration these dining halls have for people with Celiac. Berkshire dining hall is not the only hall that I have witnessed cross contamination at. Every hall has gluten free options but ... I do not trust anything that I am eating there. The dining hall administration is supposed to trust that kids will not use the same utensils for different meals? Once one person takes food from a bowl that is gluten free and touches that utensil with something that is wheat on their plate, then puts the utensil back in the gluten free bowl that whole meal has been compromised with wheat and those with Celiac can no longer eat it. Happy Celiac Disease Awareness Month !!!
I hope you guys can all celebrate this month SAFELY. With that saying, here are some very safe restaurants that I trust for dining.
 To my amazing mom and dad,
I cannot thank you enough for all you have done for me. I cannot imagine what it was like finding out about my diagnosis just four years into becoming parents. (I totally understand why you waited 5 years to have the last child). You guys took every single precaution possible to make sure that I stayed healthy my whole life. You made our whole household gluten free besides one snack drawer (sorry to my siblings). You guys treated our house and guests like they had COVID before COVID was even a thing ... no person was allowed in our house until they washed their hands free of gluten. You have stuck up for me in ways that I did not even know was possible. You were my voice before I even learned to speak, you taught my sisters how to deal with my reactions, you sit by my side while I have reactions, you sit with me in the ER speaking for me because I am so sick that I cannot function, you fight for me, and much more. To this day, you guys never fail to listen to my issues and concerns about the food I am being served. Best part is, you never fail to rip people a new one when they contaminate me. You taught every single person we came in contact with about Celiac Disease. Your patience for people blows my mind because I am not good with the stupid questions but you guys ... you WANT people to understand and you want to teach them. Dad, you make sure that everyone has a STRICT understanding of the fact that I have Celiac and cross-contamination is NOT allowed. Although you embarrass me every time we go out to eat, I love you for it. Mom, you have made sure that I have food no matter where I go. You make me my own birthday cake every single year because we cannot buy a gluten free cake anywhere. Never have I ever had to worry about if I could eat at a function or if I will get sick because you guys prepare and take every precaution to make sure that I will be able to eat safely. You guys are the reason I am here today. Eighteen years later and you still apologize to me for not knowing that I had Celiac before I was two. How were you supposed to know? It is not your fault. Mom and dad ... you guys saved me. I am the luckiest daughter in the world, I don't know what I would do without you guys. I love you guys, Paige |